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A More Local Future

This post describes, our recovery from the loss of our loved ones to a degenerative neurological condition called Huntington’s Disease. If you wish to read the story from the beginning, you can start here: How We Got Here…

The date was November 16th, 2019. At 2:30 am that Sunday morning this blog went live. I remember the feelings well from that time – the pervasive depression that lapsed occasionally into outright despair. The feeling of isolation and being totally alone in the world. And above all, the sense of hopelessness about the future. I’m not sure exactly why, but I thought telling others about my situation might help them, and I hoped it would help me.

As my wife Janet’s condition continued to degrade over the next year, her weight dropped from over 200 lbs. to a mere 65 lbs. The next big change came January 10th, 2021 – also a Sunday and, interestingly, also at about 2:30 am – when the first phase of my torment ended with Janet passing from this life into the next. I say, “first phase,” because that is all it was, really. When your loved one dies, it’s the start of a new kind of grieving where the person that you grieve is really, truly gone. No ambiguity now, it was all very, very concrete.

However, it was not the end of the change. By the grace of God, I had begun to understand and accept the change that was going on around me. For example, I had reached the firm conclusion that regardless of the nature of the turmoil in your life, it is there for a reason: to prepare you for what is next.

Meanwhile, five and a half hours north of me, but also still well within Texas (Yes, the state is that big…) other events were transpiring. A lady named Jean Barnes was caring for her daughter Jennifer as she approached the end of her Huntington’s Disease journey. We had gotten to know each other through the online support groups for HD Caregivers. This was not, however, Jean’s “first rodeo,” as she had also cared for her husband Don a decade or so earlier as he died of the same disease.

By the time Jennifer died February 19th, 2021, I had a new job, and my daughter Frannie and I had moved to the bustling town of Mineral Wells, Texas. This move put us a mere two hours from Jean’s home in Garland, so when she announced that she was going to have visiting hours for her daughter at a local funeral home, I sent her a message and asked if it would be OK for me to come. My only thought was that Jean should have someone there for support who had traveled that same road.

When I drove three hours from my workplace in Cisco, Texas, to the funeral home in Mesquite, we had communicated several times online, but on the whole, she knew a lot more about me than I knew about her – I didn’t even know what she sounded like. For all I knew she could have had a voice like Marjorie Main. But I found out that she was a gracious hostess with a soft voice, and a gentle Texas plains accent, though with all the other visitors, we really didn’t have much time to talk.

That was the evening of February 25th. The five weeks and three days between then and April 4th (Easter Sunday) life became a kind of whirlwind in which God blessed Jean and me, by allowing us to rediscover our hope for the future in each other.

When we eventually married May 31st, we included in the service several things that referenced our joint past. To begin with, before the service proper started, we acknowledged our deceased loved ones. Next, the colors we picked for the ceremony were blue and purple, as reminders of Huntington’s Disease and Juvenile Huntington’s Disease. Finally, the vows publicly reaffirmed our intention to use our past experiences to help us identify what God has next for us, as a team.

This week is a time for change.

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Choosing to live in a small town always involves making a tradeoff. On the one hand, the pace of life is slower and so is more restful. However, you can be a bit cut off. For example, if a medical problem should arise, you can find yourself feeling isolated, and with few available resources. That is very much the situation if you are living in large portions of northern Texas. From where Michael works in Cisco, the nearest hospital that even has a neurologist on staff is two or three hours away in the Dallas/Fort Worth metroplex. In a situation like that, how do people get support if they, or a loved one, are dealing with a neurodegenerative disease?

Unfortunately, this problem is far from being hypothetical. As the population of Western countries ages, a host of diseases that primarily strike in a person’s “golden years” are becoming more prevalent. And the improving state of healthcare means that people struck with these conditions are living longer.

To get a sense of the scale of the problem, let’s start with that total number of people that have been diagnosed with just a subset of all neurodegenerative diseases. One report indicates:

“Today, 5 million Americans suffer from Alzheimer’s disease; 1 million from Parkinson’s; 400,000 from multiple sclerosis (MS); 30,000 from amyotrophic lateral sclerosis (ALS or Lou Gehrig’s Disease), and 30,000 from Huntington’s Disease. Because neurodegenerative diseases strike primarily in mid- to late-life, the incidence is expected to soar as the population ages.”

Assuming a (very conservative) 1:1 ratio of patients to caregivers, that places a total of about 11 million people in the position of living lives directly impacted by these conditions – and that’s just in the US! The same report goes on to say that by 2030 it is estimated that 1 in 5 Americans will be older than 65 years of age.

When a problem like this arises today, the common solution is to start a movement that seeks to force the government to get involved in fixing the problem – all the while blissfully ignoring how screwed up things invariably get when the government (any government!) decides to “help.”

However, there is an alternative approach that has a long history of solving problems, which is to look for solutions locally and utilize local resources to address the problem. In short, looking for a more local future. Of course, this tactic has the “disadvantage” of requiring people to become personally involved, when it is often much more convenient to just send off your tax money and assume that the people in government will do the job for you.

After much consideration and prayer, the direction of personal involvement is the one which we believe will begin satisfying the commitments that we made when we were married. The idea we have is to form a local support group for those whose lives have been impacted by a neurodegenerative disease. It would be open to patients, caregivers, family members, and friends.

We first approached an organization called The Open Door that is located in Cisco, Texas where Michael works. The organization started providing pregnancy counseling services several years ago, and now provides a wide range of life services including parenting classes, couples and marital counseling, and GED support.

They are excited by this new opportunity and have made their facility in Cisco available to us. Our next steps will be to put together a flyer and an informational brochure. Once that is done, we will start publicizing the new gathering through places like doctor’s offices, commercial and community bulletin boards, churches, and nursing homes. Then there is, of course, the local radio station that Michael has been on already a couple times, talking about caregiving and grieving.

This may leave you wondering where all this new work leaves this blog. Well, it has been a difficult decision, but we have decided that this is the last weekly installment that we will be posting. Producing a weekly post is a grueling schedule. We will remain involved in the online support communities and will be writing additional posts as topics arise – just not every week. We are also pressing on with the effort to get the blog posts turned into a book, more on that should be coming soon.

So, to all of you who have supported this blog, thank you. Your kind words and comments have been more supportive than you will ever know.

In Christ, Amen ☩

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A prayer for when you are looking for what’s next…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the plans that You have for us that are (as you said through Your prophet Jeremiah) ‘for a future and a hope.’ But today I want to bless you especially for guiding me from hopelessness to hope. Thank You for the gentle hand that You rest on my shoulder. Thank you for the patience You show when guiding a wayward spirit such as mine. Although the future is still murky, I can now begin to see at least the outlines of what is ahead. Please show me how to guide others along the way that You opened for me. Amen.”

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A Nursing Home’s Responsibility

This post describes, our recovery from the loss of our loved ones to a degenerative neurological condition called Huntington’s Disease. If you wish to read the story from the beginning, you can start here: How We Got Here…

At age 48, I began going to a nursing home every day. My husband was 49 and had become the youngest resident in that full care nursing facility. Huntington’s Disease had begun to take away his independence and the ability to care for himself. The median age of other residents was 70 to 80. Many of these older residents were much more active and healthy than Don, but he made friends quickly and was happy there.

After this nursing home closed, I moved him into another nursing facility, which was close to our home. However, stability was a problem. Within the first year, there were two changes of administrators, a new director of nurses was installed, and the nursing staff on the patient halls seemed to be in a near constant state of flux, with new faces appearing weekly.

Just as we would “connect” and get to know a nurse aide, they were gone. It was disheartening to see the poor attitudes most of the staff displayed, and the standard of patient care was soon on the decline. The administrators (new and old) tried to correct the patient problems in order to keep the patient headcount high, but the organization was struggling to keep afloat financially.

Seeing the bad trends, I tried to get my husband moved to another home, but the new home would call the facility to see what manner of care Don needed. In a few days, we were always told they did not have the necessary staff to care for HD patients. Maybe it was all coincidental, and maybe not.

I was a Mama Bear when it came to my husband’s care, and with eagle eyes I learned to spot problems. I never once raised my voice or used bad language, but the staff got to know me well and probably feared me. They knew that I would not tolerate substandard care for Don – no excuses were acceptable.

But it was not all bad. I must say that in almost every nursing home, there are precious nurses who have dedicated their lives to caring for senior citizens! Many work long hours, and give 110% to make sure that their residents receive the quality of care that they deserve – even if it means going against their own employers. These angel nurses deserve respect, thanks, and lots of praise, and I always made sure to thank the Lord for them!

So, if you are one of them – Thank you for your dedication and service!

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In a study published on March 20, 2021 by the World Health Organization, it was found that over 64% of nursing home staff members admitted to committing some form of abuse or neglect. However, staff members are not the only ones to worry about in long-term care facilities – other residents are just as capable of committing abuse. With increasing life expectancies in our older population, the demand for care homes will only increase.

An added problem has been the recent Covid epidemic, which greatly affected both the residents of our nation’s nursing homes and their families. Visits were denied and families had very little contact with their loved ones. In some cases, even state regulators were prevented from performing their legally mandated oversight responsibilities. These “protective measures” resulted in increasing confusion and isolation on the part of the residents, who could not fully understand why their families did not visit. And the families were frustrated at being unable to see and touch and reassure their family members that they were loved and cherished.

However, in even the best of times, older people are only becoming more vulnerable due to their dependencies related to cognitive and functional self-care challenges. For people over age 65, one in ten suffers from some form of elder abuse – that statistic according to the National Council on Aging. Some estimates say that as many as five million elders are abused each year. One study estimated that only 1 in 24 cases of abuse are reported to authorities. Sadly, two thirds of the perpetrators are adult children or spouses.

There are warning signs of elder abuse, which can include physical abuse, emotional abuse, financial abuse, sexual abuse, and neglect. How can we keep our loved ones safe in a nursing home?

  1. Remember that the lack of family visits increases a resident’s vulnerability to abuse and neglect. So keep your eyes, ears, and nose open. Look and listen to staff, and don’t forget to sniff! The home should not have bad smells consistently. If it does, there are problems.
  2. Check for bedsores or pressure ulcers on your loved one. These preventable injuries typically result from being left in bed for extended hours without supervision.
  3. Are they given basic hygiene, adequate food, and hydration? These are all areas where inadequate care can quickly escalate a critical situation into a tragic one.
  4. Look for behavioral red flags! Changes due to the progression of a degenerative condition are typically slow. But watch for sudden changes in personality, mood, and sleeping or eating habits. If you see signs of depression, fear, or lethargy, take immediate action and talk to the head nurse.
  5. Stay in touch with nursing staff. Compliment them when they are doing a good job. We all need encouragement and praise. However, never brush off possible signs of abuse. Always report it, and don’t be afraid to call 911 immediately if you have urgent concerns. Do not let things slide until there is an injury or gross negligence. Address problems before they become a bad habit.

Of course all this watchfulness goes for naught if you don’t know who to talk to! Step one is to look for a bulletin board. Most jurisdictions require care facilities to prominently display documents identifying the specific rights of a patient and who to contact if you feel those rights are being violated.

Additionally, in the USA, every state has a number of ombudsmen available to speak up for your family members who can’t speak for themselves. When care is insufficient or a nursing home isn’t operating in your best interests, an ombudsman can step in and help you obtain the quality of care your loved one requires and deserves. Their services are free and impartial. The second nursing home that Don was in had a wonderful ombudsman. I had never heard the word before but soon learned what a valuable asset he was to that home. He held a monthly support group meeting for families of residents, and if complaints were expressed, we knew he would get with the right staff to correct the problem.

If you require assistance from an ombudsman for a case of elder abuse or any other reason, you can locate one at the National Long Term Care Ombudsman Resource Center. They can provide a name, phone number, and address for every ombudsman in every state. Please use this wonderful resource.

Here are some general resources for additional information:

National Council on Aging
DoSomething.org
ProPublica Nursing Home Inspect Summary
The Global Role of the World Health Organization

Brain & Life magazine is published 6 times a year and provides information about Neurology for everyday living. Subscriptions are completely free at: https://www.brainandlife.org/the-magazine

Finally, if you reside outside the United States, your first call should be to the National Health Service for your country. In addition, local support groups or doctors can sometimes provide you leads on where to go for help.

In Christ, Amen ☩

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A prayer for when your heart aches with concern for your family in long term healthcare…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for loving us. But today I want to bless You especially for Your watching over my family and friends in long-term healthcare facilities. Bless the nursing staff with wisdom and patience as they care for those who live there. Many residents are in their last weeks or months of life and I pray that You would help them feel loved, cherished, and safe. Amen.”

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Time for a Nursing Home? Now?

This post describes, our recovery from the loss of our loved ones to a degenerative neurological condition called Huntington’s Disease. If you wish to read the story from the beginning, you can start here: How We Got Here…

My husband was 14 years into his HD journey when I began to see the need for nursing care than I could not provide. I was working full time, and our teenage son was in high school. Every morning before leaving for work, I would prepare breakfast for my husband, Don, as well as a lunch that he could easily heat in the microwave or that was ready-to-eat cold. Don had been having occasional seizures, but they were suddenly increasing in frequency and becoming more severe. He dropped medicines, and spills or broken dishes were common. Falls were a part of everyday life. From the moment I got home from work until bedtime, I was cleaning, repairing, and preparing for the next day. My sleep at night was a very few hours of tossing and turning.

Finally, I knew it was time.

An opening in a wonderful nursing home became available close to my work location. The Director was a precious lady who helped make the transition much easier for us all. It is so important to develop a relationship with the front office when possible. You will need them, trust me! Don adjusted very well and especially loved Saturday and Sunday because I took him home on weekends.

Although going to visit every evening after work and taking him home on weekends was an improvement, it still wore me down and still led to exhaustion. Then about four months into his stay at this nursing home, I learned they would be closing it down in a month. I had to find another nursing home fast, and quickly located another one close by our home. From the very beginning, it was obvious it was not as caring a place as the first one.

At first I was encouraged to hear they had two other HD patients in this home, but soon realized they were banished with Don down what I came to call “the hallway to nowhere.” The staff’s attitude seemed to be out of sight, out of mind. The call lights were just a waste of electricity. Most of the patients on this hall were non-verbal and non-ambulatory, and as far as the staff were concerned, they were just occupying space.

During my husband’s two years at this home, he suffered two concussions and one broken wrist from falls, and many seizures due to medicine not being given on time or at all. Every evening I swept the floor in his room and every evening I swept up prescription medications that my husband had been prescribed but which were dropped by the nurse and forgotten.

Don had a little elderly friend who had moved to this home from the same nursing home we had first been in. They both had rooms on the same hall. Every morning the nurse’s aide would bring their wheelchairs out to the lobby area in front of the nursing desk. They would sit there all morning until it was time for lunch. One morning, as Don was sitting by his little friend, he noticed the man slump over to one side. Nursing staff and aides passed by their wheelchairs and no one stopped to check on him. Don said he was leaned over so far that he was afraid the little guy would fall out of the wheelchair. When lunchtime arrived several hours later, a nurse found that the little man had died.

I knew the man’s wife and felt so sad and angry that he had died essentially alone, no one noticing that he was even gone.

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As caregivers, we all have some common goals. We desire to see our loved one in a safe, comfortable environment where their needs are met with respect and dignity. We want our loved one to get the best possible care. And we want to see them happy and thriving.

These goals can be met in several possible ways but it takes a lot of preparation, prayer, and investigation to assess your loved one’s needs and find the best solution. This care can sometimes be provided at home or in the home of another relative. When this solution is practical, it is often less traumatic to everyone because the patient can continue to live in familiar surroundings, and family is there to do the caregiving. However, everyone needs to realize this commitment can be challenging physically, mentally, and emotionally.

Moreover, one person should not be expected to be on duty 24/7. From the beginning, there needs to be a schedule for respite for the main caregiver that allows other family members or friends to step in and provide the needed care.

In many situations though, especially with degenerative neurological conditions, the solution demands the involvement of professionals. Seemingly overnight, symptoms can escalate to requiring care in a nursing home. There our loved one can have the skilled care they need and deserve. It is OK to realize that the best care is not always at home.

How do we make these decisions? What are the signs that let us know a decision needs to be made? After all, you would think that a family would give the very best care since we love the patient most. But this situation isn’t just about love. It’s about satisfying a complex and ever-growing set of needs that sometimes require very specific sets of skills and knowledge.

When you decide that it is time for a nursing home, there is one more very hard question that you need to answer: How will you react if you find your loved one has been mistreated?

Probably the most important thing to remember when getting nursing care to come into your home, or placing your loved one in a nursing home, is the fact that your responsibility never ends. Your loved one still needs an advocate to speak up loud and clear when basic needs are not being met. In every care facility, there are wonderful nurses with hearts of gold. Unfortunately, there are also some lazy staff members who just do not care. But you do not have to settle for neglect – and should not under any circumstance!

Make sure your loved one doesn’t feel deserted. Visit as often as possible and drop in for visits at various times of the day so you can observe the staff and their interactions across all shifts. And if the circumstances require it, don’t be afraid to let your inner “Mama (or Daddy) Bear” come out.

Bring pictures so they can recognize items from home. Decorate so they can feel some good memories of childhood or of their children growing up. Make the room as cozy and home-like as possible.

One other small, but very important, thing you can remember to do for your loved one is giving them a loving touch and hug. The small act of putting hand lotion on their hands and arms is so soothing. If it makes our hands feel better to have nice lotion, imagine how relaxing that feels to them! If a child is there, let them help with this. Make some memories! I promise you won’t be sorry. I love this Bible verse from Jude 1:22, “…And of some have compassion, making a difference.”

Next week we will look further into how to be the best advocate for your loved one. We will discover ways to check on nursing homes or home health care companies to reveal those who have poor grades in your particular locale. Let’s be caregivers who show compassion – and make a difference!

In Christ, Amen ☩

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A prayer for when you are faced with making a hard decision…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for being our Heavenly Father. But today I want to bless You especially for leading and guiding me when I come to You asking for Your help in making decisions. You are never too busy to hear my prayers and always listen when my heart is aching. Thank You for the peace and comfort You give me when You work in my life. Help me to let You always lead so those who You place in my care receive the compassion and service that they need. Amen.”

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Fear of the Future

This post describes, our recovery from the loss of our loved ones to a degenerative neurological condition called Huntington’s Disease. If you wish to read the story from the beginning, you can start here: How We Got Here…

My husband was in his fourth year of needing full time care in a nursing home due to Huntington’s Disease, when he suddenly began to repeatedly try to run away from the facility to go back home. We lived 20 miles away, and at this time, he could hardly take a step without falling. To make matters worse, he began to get aggressive with anyone who got in his way. One day I got a call at work from the Director of the nursing home, telling me they had had an “incident” with Don, and they had had to call the police to restrain him. He was OK, but he had been transported to a local hospital until they could decide what to do with him. He had shoved a little elderly lady when he was trying to make a run for the door to get outside. The little lady had no injuries, but was understandably traumatized. The police were involved in case charges were filed against him.

When I got to the hospital, Don was in a cheery mood. He had no memory of what had happened and was actually loving all the attention he was getting in the hospital. He was put in the ICU so he could be monitored all night. The next morning, two police officers came to take Don to a psychiatric hospital where they could do an evaluation of all his medications.

My heart broke when I saw them place Don in the back seat of their squad car and speed off. I needed to tell Don one more time that he would be OK, that I would check on him daily, and that I loved him. Little did I know that I would be unable to even see or visit him for seven days. Then I could only visit for 30 minutes, twice a week. It was a scary place to visit. I looked around at all the men in his visiting area, and some were huge burly men who seemed to pick a fight with anyone around. Thankfully, Don kept to himself.

I was so afraid for his safety. Fear became my constant companion. Would he be safe? Would his medicines be regulated so others would feel safe around him? When these sorts of things happen to other people, there can be added worries about family finances. They might lose their home. They may have to go down to one car. And then there is medical care.

After I became a caregiver, a whole new set of fears arose. I was not sure I could even give Don good healthcare. I worried about whether I was physically, emotionally, and spiritually prepared to literally give my life to caring for another person. I was uncertain about how long this journey would last or how bad it would get. When I am cooped up in the house 24/7 and can rarely have a meal out with friends, will I even have a social life?

I worried about our two children during these years. How would this all affect them? Both were smart and made good grades in school, and both had close friends. Would they be comfortable inviting friends over… or would I be comfortable with them inviting friends over? We never knew what Don’s mood of the day might be. And, if one of the kids stumbled, or dropped a dish, or forgot something, I prayed it wasn’t an early sign. Only parents of at-risk children can understand what this truly means. This brought me huge fears as I never wanted to see my own flesh and blood have to live their life with HD.

In the end, at the psychiatric hospital, all Don’s medicines were stopped and slowly a few were added back, with a few new ones. He was now very calm and compliant and after six or eight weeks, he was cleared to go back to the nursing home. However, the Director had decided he would not be allowed to move back. Every nursing home I talked with gave me the same answer. No. They were not able to care for HD patients. Eventually, after meeting with the Director at our original nursing home, she agreed to allow him to come back on a trial basis. It was a calm, sweet patient who returned, and there were no more behavior problems.

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There are very real fears and uncertainties that patients with degenerative neurological conditions and their caregivers might experience – even before they know anything is definitely wrong. These diseases have so many possible early signs and symptoms that anger episodes can seem as though the person is just having a really bad day and overreacting. Often, the explosive person forgets it as soon as they calm down and cannot understand why the caregiver can’t just let it go.

I remember being hurt by things said or done by my husband, and it was always up to me to forgive and forget. He saw no problem with his actions and it was just easier for me to be the one to try to make things right. It was happening frequently and I became understandably fearful that this was the new normal.

The best thing I could do at those times was to get alone and tell God about it. He knows the situation, but I can pray to ask for His help for my fears and heartaches because I am His child. He loves to hear from His children and longs for them to talk to Him every day. In Philippians 4:6-7, God tells us not to worry about anything, but to come to Him and let Him know our needs. He gives us a great peace in our hearts and minds. He understands and comforts us! And He is waiting to hear from you, too.

Certainly when I am unsure of what my future might hold, fear often grows as my faith is challenged. Perhaps we see our loved one with health problems but have no idea yet what might be the cause. Every visit to a doctor makes you wonder if it might be the appointment when you get a diagnosis.

Other areas that brought me fear were parts of caregiving that only grew more difficult. My husband had the diagnosis by now and we knew HD could stretch on for years. I wondered which symptom would show up next. How long would he be able to work? When would he decide to make small repairs needed around the house? Every time he drove the car, I was terrified he would have a wreck. His braking response was slow, and his speed control was very erratic with an uneven pressure on the accelerator. But I knew that, for him, giving up driving would not be an easy transition.

Fear is a very normal human response and we learn to express it at an early age. A baby cries in fear when someone else is caring for them and they want their mommy. Kindergarten students are often scared and fearful on those first few days in a classroom setting. As a school age child, I never would go to sleep with one leg out of the covers and my foot dangling off the bed. I had a fear that a tiger or bear would surely take a bite out of my toes.

As a caregiver or friend to those with health problems or who are grieving, I should be ever mindful of the trap that fear places us in. It can stop us in our tracks and the burden of our daily life becomes almost unbearable. I can truly grow in this experience when I allow our Heavenly Father to lead and guide me.

I had to go to the Lord all through each day, to ask for peace in my heart and mind. All through the day I would think of the verse in Psalms 34:4: “I sought the Lord, and he heard me, and delivered me from all my fears.” All through the day his presence helped me put away those fearful thoughts.

In Christ, Amen ☩

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A prayer for when you are feeling fear of the future…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for how You love and protect Your children. But today I want to bless you especially for how you are with me every single moment of every day. You know when I am feeling depressed, overwhelmed with duties in life that seem to never end, scared of what the future holds and full of fear. Help me to turn my thoughts toward You when I am weak. Teach me to remember to depend not upon my own abilities, but upon Your strength. Amen.”

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A Family Secret

This post describes, our recovery from the loss of our loved ones to a degenerative neurological condition called Huntington’s Disease. If you wish to read the story from the beginning, you can start here: How We Got Here…

Do you remember being 18? For some of us, we really have to clear the cobwebs in our memories to go back that far! I was at college, and away from home for the first time. My home life had been very sheltered, and I could be described as naïve and innocent. My daddy had died when my twin sister and I were just 15 months old and our older sister was five. Mother was a strong Christian lady who was determined to raise her daughters in the right path. Second semester of that first year of college brought in some new students. After mutual friends introduced me to a handsome young man from Indiana, we became friends and started dating.

Don was a “life of the party” type guy, and I was much more like a wallflower. I have heard that opposites attract, and in our case it was true. During those months of dating we began to learn more about each other’s family backgrounds. I told Don about my mom’s mother dying of a brain tumor, and I learned he recently had lost both of his dad’s parents. His grandpa died of lung problems that originated during WWI from inhaling mustard gas. And within an eleven-day span, his grandma died in a different hospital from complications of something called Huntington’s Disease. When I asked him about HD, he was very vague and honestly didn’t know much about it, nor how to describe it. He just said she had been sick for a really long time. I remember thinking I would look it up in the encyclopedia next time I was in the college library.

When I did so, I found a total of just three or four sentences describing Huntington’s Disease. It was a neurological disorder. The main symptom was chorea or the so-called St. Vitus Dance. One famous person with HD was Woody Guthrie, who wrote “This Land is Your Land, This Land is My Land.” Given the paucity of information, I decided it must be some minor thing that sure didn’t deserve any worry or concern or further research on my part. We were in love, and nothing else mattered.

Don and I were married in August of 1972. At least a couple times a year, we drove up to Indiana from Missouri to visit Don’s family. We had one concerning, growing question when we visited his parents, and it involved his dad’s health. Something strange was going on, but we had absolutely no idea what was wrong. Shortly after my father-in-law’s parents died, he had to be hospitalized in a mental health facility for several weeks. There he was given some treatments, and different drugs were given to try to help him.

Even though Don questioned his mother about his dad’s health every time we visited, she said the doctors were just unsure of what was causing these mental, emotional, and physical problems, and not to worry about it. His dad was having problems at work over minor issues that he made into very major problems and was unable to continue working. He began stumbling and falling more. At least one wreck in the family car happened with him driving, and thankfully no one was hurt. He was going to several doctors, who each seemed to think adding another pill would “fix” him. Nothing was helping.

Eventually Don’s dad was moved to a nursing home for medical care. If anyone else had even an inkling that this could be HD, it was not shared with Don or me. It was apparently, a family secret. Even when we asked specifically if this could be the same disease that Grandma had on her death certificate, we were told his health problems were different. By mid 1987, my father-in-law was in his third nursing home.

For anyone who is familiar with HD, this can be easily understood. In one nursing home, a male aide made my father-in-law mad and he shoved this guy so hard across the room that he fell and broke his collarbone. The nursing home administrator gave my mother-in-law a short time to find another placement for him. Eventually he ended up in the Indiana State Hospital, the same hospital where his own mother died of HD. Eventually I learned he was the third generation from this family to be hospitalized for HD there.

A social worker took an interest in Don’s dad and saw one of the letters we wrote him. She contacted me to let me know how much he enjoyed the letters, and gave me a list of some things he needed or wanted, so we began sending care packages. This social worker asked me if we were educated about Huntington’s Disease. I told her we only knew my husband’s grandmother died from HD, but had really no other knowledge. She seemed very concerned and asked if she could mail me some information.

I was happy to finally be able to learn more about this disease, but was devastated when the social worker told me my husband could have the gene too. I was just stunned that it could be hereditary. Why had no one told me? Family members knew but no one ever even hinted at this information. Don knew I had begun getting more information about HD, but he responded with irritation and disinterest. We now had two precious children, and soon I realized they could be carrying the gene too.

I read and reread every article I received many times. I wrote to every author, medical center, or university listed, asking for more information. I began to gather a thick folder of articles and pamphlets and searched each one to try to convince myself that our little family would never see this horrible disease. That is one thing about these kinds of pamphlets about HD, nothing is sugar-coated. The Web and Facebook were still far in the future so absolutely everything I knew or could learn was in this published material. The materials gave the doom and gloom picture of HD because there was no current news about possible treatments or testing for the gene. Many of the pamphlets were several years old.

On January 20, 1988, my father-in-law died from complications of HD. I knew he had three brothers, all who were by now healthy, mature men. It seemed Don’s dad was the only one of the four kids who inherited the HD gene, but 25-30 years later, I finally learned the truth. There was also one daughter who had HD. No one had even told me a daughter existed. She had separated herself from her family when she became old enough to leave home, and she was never discussed. Little did I know that when my husband and I first married, this daughter lived just a few houses down the street from my in-laws. I could not wrap my mind around how some HD family members could stick their head in the sand and seem to deny anything was going on. That sure didn’t make the problem go away, nor did it strengthen my trust in those family members who kept this information quiet.

As I learned more about HD, I began consistently seeing those small “soft signs” in my husband. When I shared this with my husband’s mother privately, it was not well received. My greatest need was for someone who had been through this to tell me I wasn’t going crazy; that yes, everything I was describing was part of the beginning signs. She insisted Don did not have HD and I needed to quit thinking he did. It made my life as an HD wife so much more difficult and lonely.

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Despite all the changes and challenges, I have been left with no doubt that I have a Heavenly Father who loves and cares for me. For example, I began praying several times a day, for even one HD caregiving friend. God taught me much about His care of me in the following year. I could go to Him all through the day, to share my thoughts or verbal prayers, and He was always there to listen and comfort me. Daily I thanked Him for how He would eventually answer my heart’s desire. But my need for this kind of Christian friend was overwhelming to my very heart and soul.

After praying diligently for over a year for this HD friend I needed, God gave me three within a couple weeks’ time. One was a man whose wife had HD, and one was a lady caring for her husband. The third was an HD widow, who now had two sons with HD. All three friends were precious to me, all with children who either had HD, or with children at risk of carrying the gene. Most importantly though, we could all pray together.

That was 30 years ago, but my heart is still full of thanks to the Lord for bringing these “angels” into my life. One of my special friends has passed away, but I am still in touch with her daughter-in-law and some of her grandchildren. Two of these friends are still my friends today.

This is just one example of God’s care for me. In the weeks ahead, I will share more of the story of how HD has affected my life as a caregiver. I may not need the support and encouragement I so needed 30 years ago, but I will always stay involved in the HD community, to be a friend to others on this path.

I am often reminded of the first part of the verse in Mark 7:37. “And they (the people witnessing the miracles) were astonished beyond measure, saying, ‘He has done all things well.’”

Yes, He does!

In Christ, Amen ☩

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A prayer for when you need comfort and understanding…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for life and breath each day. But today I want to bless You especially for Your presence that calms my worries. Help me to always remember You care deeply about every detail of my life, even when some details are unknown to me. I will trust that Your plan for my life is good, when I allow You to lead and guide me. Amen.”

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We Are all Changelings

This post describes, our recovery from the loss of our loved ones to a degenerative neurological condition called Huntington’s Disease. If you wish to read the story from the beginning, you can start here: How We Got Here…

Those who have been following us as a couple (or Jean or Michael individually), know that the blog wasn’t updated last week, as we partook of a pleasant tradition called a “honeymoon.” We were married in Weatherford, Texas at 1 pm Memorial Day afternoon. For our week off, we visited Jean’s older sister Ruth in Arkansas, Michael’s sister in Indiana, and his sister-in-law in Missouri.

While in Missouri, we visited Lebanon, where Michael grew up and graduated from high school. In terms of details, let’s just say that the visit did not go well. The home he grew up in was still there, but nearly everything else was gone. His high school, the places where he used to hang out, everything was just gone. Even the rocks along the cuts in the highway, which were bright and red, were now just black, weathered, and nearly overgrown with small trees and vines. Sad.

As we talked about it, Jean confided that she had experienced a similar reaction a few years back when visiting Springfield, Missouri. That was where she went to Bible College, and where she met her first husband Don and gave birth to her daughter Jennifer – both now dead from Huntington’s Disease. She obviously has no further interest in going back there again.

On the positive side, while in Indiana we visited a small park on the Wabash River, called French Post Park, and found a beautiful park bench where we could sit under the spreading arms of massive, ancient maples and oaks, and fantasize about living the life of Huckleberry Finn.

This panoramic picture gives a sense of what the place was like. What a truly beautiful day.

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When the Lord of the Rings trilogy was released, it became something of a tradition for Michael and his son to attend the first, midnight showing of each installment. At the end of the last movie, there is a scene that was particularly poignant. In it, the hobbits have made it through all their dangerous and fraught adventures, and were home once again in Hobbiton – safe and in one piece. But the faces of some of them are still troubled. The problem is that as anyone who has been through a dangerous and fraught adventure knows, it is possible to come home, and have it not be “home” any more.

But even absent going to war with an evil wizard, life changes you in ways that can leave you feeling alone, untethered and adrift. One of the things that we can miss after a traumatic event – such as the death of a loved one – is a feeling of place, a sense of “this is where I belong”, a sense of “home”.

Neil Diamond expressed a similar emotion when he complained of being, “… lost between two shores…”:

LA’s fine, but it ain’t home,

New York’s home, but it ain’t mine no more…

The fundamental problem, of course, is that as human beings, we are hard-wired to prefer the status quo over change. The issue is that we often associate change with insecurity, uncertainty, and risk while forgetting that change also produces opportunities – often in ways that we’d never imagined. A good example of this is Jean’s experiences caring for her late husband Don.

Thinking back over my adult life, I have had the privilege of getting to know dozens of families who had a loved one needing extra care at home or at a medical facility. Situations can involve families taking care of elderly parents and trying to provide them with as much independence as safely possible. However the greatest number of caregivers I have met through the last 30+ years have been families dealing with Huntington’s Disease, and all ages can be affected. Some patients need only minimal care at the beginning but all will eventually require intense caregiving as they approach the end of their HD journey. This need can extend over many years.

The one certainty of caregiving for both the patient and the caregiver is the need to adjust and adapt. The changes can be a slow progression, or just as often, seem to appear overnight. I would adjust to one new symptom, and suddenly be faced with two or three more within a few days’ time.

There seems to come a time when caregivers can rarely feel completely and comfortably at ease. My home, my haven of rest, was transformed into a place of uncertainty. I remember early symptoms were showing up even before we knew my husband had HD. For instance, some small inconvenience would cause him to react with rage. One such episode I specifically remember was him being livid over a Hogan’s Heroes rerun not being shown on TV when the TV Guide said it would. World War III almost ensued. It was certainly not a “home, sweet home” that afternoon.

Years later as the HD symptoms swallowed up more of his ability to care for himself, we had to begin introducing him to the possibility of moving to a nursing home. I was working 40 hours a week in downtown Dallas and would come home to medication dropped on the floor, broken dishes, or some other great catastrophe. When an opening came up in a lovely nursing home in the area, he was not especially happy about the change but did comply, and over time, he grew to love it there.

However, all of his disability money went to the nursing home now, so I had a sudden significant loss of income. The change was scary and left me feeling uncertain. Still, after working long days, I would go by the nursing home nightly to spend a couple of hours with him and get him to bed. When I finally arrived home long after dark, I would collapse into bed, exhausted.

Tired became my “normal” status.

Five years after he entered the nursing home, my phone rang one winter Sunday morning at 5 am. It was the nursing home Administrator letting me know my husband had passed away in his sleep. Through my tears I could rejoice in knowing he was no longer under the effects of HD. He was 54, and had had HD for 19 years. Finally he was at complete rest with God.

But now there was a new change. Home became so lonely, and I felt lost. Driving straight home from work was insanely boring. I felt unneeded and fought depression. What was my purpose here on earth? Sweet caring girlfriends would invite me out for supper, but the invitations seemed to be just another reminder of how pitifully alone I was. It was all about me.

About a month after the funeral, I realized I was spending every Saturday on the couch doing nothing productive. I knew I was going through some depression, and that I needed to do something to stop this decline. One day as I lay on the couch still in my pajamas, my mind tried to think of just ONE thing I could physically do to begin to fight this cloud over me.

Then it occurred to me: one load of laundry. I could manage that! But God used that one load of laundry to help me realize my attitude about my future life depended on me, to a great extent. Now there was more time to try to help others. As a caregiver, it was somewhat easy to justify not volunteering to help others. Surely I was much busier than anyone else on earth. Eventually, I got involved in some volunteer work and worked to find ways to help others. There is always someone worse off than me, who needs encouragement too. This idea allowed me to turn my thoughts of “poor me” into a realization that I could be useful and a blessing to others. This is where real joy is found!

Slowly, as I got more physical and spiritual rest, the Lord restored my soul. I allowed Him to be my Shepherd and lead me through the tough days and weeks ahead. Yes, changes will come in our lives but we can learn to embrace them and turn them into something good.

In Christ, Amen ☩

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A prayer for when you are going through changes…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for Your timeless and eternally constant nature. But today I want to bless You especially for showing me how to find real joy and comfort in the midst of difficult times. You love me and care deeply about my everyday life. Help and strengthen me as only You can. Teach me to lean on You when my heart is lonely and breaking. Thank You for providing friends who encourage me, and help me to be a friend to others in need. Amen.”

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You Don’t Have to be Alone

This post describes, my recovery from the loss of my wife to a degenerative neurological condition called Huntington’s Disease. She was healed of this condition when she went to live with our Heavenly Father at 2:30AM, the 10th of January 2021. You can read the announcement here.

Or if you would like to read our story from the beginning, you can start with: How We Got Here…

This week is something of a landmark or dividing line. This Sunday is the last one where Jean and I will be in church as individuals. By the next time we gather with the rest of our little fellowship, we will have undergone an amazing transformation to become simply “The Porter Family.”

For that reason (and many, many others), it seems appropriate to us to begin recapping the past three or four months and consider some of the steps that we have gone through in the process of recovery – and highlight what is still left to be done. You see, remarriage is, for us, a wonderful milestone, but if you think about it, a milestone is just a marker on the road you are traveling. And your road will likely be different from ours, it may pass that same marker, or you may find yourself soon standing before a different one perhaps labeled, “Start Second Career” or something else. Literally, God only knows.

And speaking of roads being traveled, this week Jean and I will be on a post-nuptial road trip visiting family. Consequently, next Sunday we will not be posting, however we will be back June 13th.

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A recurring theme in many posts that we read on support forums – as well as life in general – concerns loneliness and the avoidance thereof. And there are good reasons for this concern to be so ubiquitous. For example, it is often the first symptom that the caregiver experiences personally as they stand by powerlessly while dementia begins to slowly eat away at the person they love.

This situation is an example of a condition called “Ambiguous Loss” – which includes the cruelly painful process of mourning the passing of someone whom you love, but who is still physically present. In fact, one of the things that God used to bring us (Jean Barnes and Michael Porter) together was the shared memories of navigating those terrible waters. Waters filled with horrifying icebergs in the form of doubts and questions about who we were and where we were really going.

While we survived that period of our lives, it certainly wasn’t pleasant. One of the keys to that survival was learning to draw a distinction between two very different, yet confusingly similar, ideas. What we are speaking of is the difference between being by yourself, and being alone. We have learned that drawing a clear, unambiguous distinction between the two is critical because when one is caring for someone else, one of them is just part of your daily routine, while the other is an illness that must be eradicated to the greatest extent possible.

To see what we mean, consider that being alone and isolated is normal and even to be expected when caregiving – especially in the midst of the current Covid-19 panic. However, aloneness is not inherently a problem. Many people enjoy hiking, climbing, fishing, hunting or other solo pursuits out in nature. And despite being the only human being in miles, they nevertheless report a deep sense of connectedness to God, nature, the universe, etc.

Being alone, on the other hand, implies a feeling of being disconnected from what is going on around you, of being dissociated from everything beyond the confines of your own skin. Hence, someone can feel very alone even in a crowded room. Quite rightly, the medical profession has identified this kind of dissociation as a pathology.

“The major characteristic of all dissociative phenomena involves a detachment from reality, rather than a loss of reality as in psychosis.”

Unfortunately, this quote illustrates for us that dissociation is a pathology that society pushes relentlessly in nearly every realm of life – at times bordering on psychosis in the destruction of reality in favor of an oxymoronic “personal reality” or “individual truth.”
But getting back to caregivers, we have suffered through many things in common over the course of our separate caregiving journeys, but there are always many unique aspects, as well, so we’ll speak separately for a bit…

Michael:

A problem that I think is probably specific to men is that we tend to (as my sister once described it) put all our eggs in one basket. Or to put it another way, we tend to concentrate much of our attention on just one person: our wife. Consequently, when she begins to exhibit the signs of dementia, we tend to become lost very quickly.

For myself, this issue was particularly troublesome because my Janet was always the disciplined, logical one – then, seemingly overnight, it was just all gone. I remember thinking that my life felt like the rope to my anchor had been suddenly cut and I was adrift with no solid point of reference that I could guide on. During that time, I remember feeling like one of us was going insane, but which one was it? Looking back, I am amazed at how willing I was to throw myself under the bus to maintain the image of Janet that I had in my head.

I was totally unprepared to deal with the anger, irrational behavior, and violent outbursts. I had no idea, at first, what I should do. I remember crying out, “Why can’t I have Janet back for just five minutes so she can tell me what to do?” But that never happened.

In the end the image became unmaintainable and I had to come to grips with the objective fact that Janet, as I had always known her, was gone. And even more horrifying was the possibility that the person that I thought she had been, never really existed – that the “personality quirks” I had always recognized were not the legacy of an abusive childhood that could eventually heal, but symptoms of a disease that would only get worse.

There is no isolation so profound as the one produced when the person being missed is still present physically but is absent in every other possible way.

Jean:

If you had parked outside my house any time during 1987, you would notice a nightly routine. Our two children would be off to bed by 9:30 and their bedroom lights would go off. Soon the living room and master bedroom would go dark as we all went to sleep. Then about 30 minutes later, the living room lamp would come on. It was me. I was reading again every brochure we had accumulated about the relatively unknown condition called Huntington’s Disease. I would spend an hour or so reading and crying, begging the Lord to please not let us have to deal with HD.

My husband’s grandmother had died of HD a year before we married. Now Don’s dad was in late stages of the disease. A few months later we buried his dad in Indiana, and to my horror, I began seeing early signs in my husband. Don’s health continued deteriorating and in 2006, we laid him to rest. We had been married almost 35 years and I felt much loneliness. My identity as a wife and helpmeet to my husband disappeared. Then, just seven weeks after my husband died, his older sister also died in her sleep, of HD.

God gave us comfort and I felt surely my children would escape HD. My son seemed healthy, but then I began seeing signs of HD in my precious daughter. Jennifer was an accomplished church pianist and loved using her talents to serve the Lord. She and her husband had two precious sons that they had adopted.

About this time, her husband forced her out of the house to make room for another woman. Jennifer came to live with me. One of my greatest joys in life was taking care of her during her last years of life, even though every day was totally exhausting. In Feb. 2021, God called her home very unexpectedly. I knew she was getting weaker but surely did not expect her to die that day. The following days were a blur of wondering why I was even alive, and what my purpose in life was now? HD had now taken two of my immediate family – and five altogether.

So with these problems and experiences, what did we do? Well, ultimately we both came to see that our salvation lay, not in trying to avoid reality, but in fully embracing it. You see, no matter how difficult it might be, reality is – well, real. So in that sense, there is really no alternative – except perhaps a path resulting in extreme detachment or perhaps even psychosis.

But accepting reality means accepting all of what is real – not just the parts that we like or are ready to accept. For example, you might like the happy pleasurable parts of life but want to reject the messy bits, or you might find joy in creation while feeling uncomfortable with the idea of a Creator. Likewise, a common meme shows a tree growing up through a split that it has created in a large rock.

The picture’s intended lesson is about persistence and asks us to concentrate on the tree. But the rock also exists, and the picture shows the result of decades or even centuries of “contention” between rock and tree. While things look good for the tree right now, the final result is still far from certain. After all, a forest fire could still come through and destroy the tree while leaving the rock unscathed.

Perhaps a better lesson is that from the human perspective, reality is seldom a flash of life-changing enlightenment. Rather, for created beings such as ourselves, reality is always being revealed as a curious mixture of “is” and “is becoming,” where we can never be absolutely sure of all the final details. However, that uncertainty doesn’t mean that we are adrift with no solid point of reference.

To the contrary, verbs often imply nouns. For example, our existence as created beings implies the existence of a Creator. And the existence of blessings is a sign that the Creator cares about His creation. A point that brings us back to this post’s original assertion: You don’t have to be alone.

Even when times are at their darkest, you will discover that, if you look for it, there is always enough light to illuminate at least your next step. Our Creator has known for as long as there have been human beings, that it is not good for them to be alone.

So He is always there, and oftentimes He brings into our lives other people to accompany us and support us on our journey – sometimes as a friend, sometimes as a sibling, and sometimes as a spouse.

In Christ, Amen ☩

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A prayer for when you are feeling alone and disconnected…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the light and warmth that You bring to our world. But today I want to bless You especially for those loving souls that You call together to surround us with comfort in our pain. Please show me how to be such a person to others. Amen.”

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Anger and Aggression in Dementia,
Triggers and Responses

This post describes, my recovery from the loss of my wife to a degenerative neurological condition called Huntington’s Disease. She was healed of this condition when she went to live with our Heavenly Father at 2:30AM, the 10th of January 2021. You can read the announcement here.

Or if you would like to read our story from the beginning, you can start with: How We Got Here…

To start this week, I have been overwhelmed with the response that I received to the first half of this discussion that I posted last Sunday. That post appears to have truly “struck a nerve” with many, many people as they have chosen to share with me their personal stories and experiences. Thank you for your openness and your concern for others.

This week we are going to continue the conversation by talking about some of the things that can trigger outbursts, and coping mechanisms that can be helpful. But first I need to make a quick Public Service Announcement.

Some time ago I talked about getting lost in an “Alice in Wonderland” world of lost perspectives and identity. To address this problem, you need to cultivate a relationship that can serve as your battle buddy. In our civilian context, this person has several additional jobs. First, they will be your point of reference to help you identify when the stuff starts to seriously hit the fan. Second, they must be someone whose opinions and judgments you absolutely trust. This point is critical because there will come a time when you are called upon to make some really hard choices. Their job is to help you to remember that your focus is getting your loved one the help they need – no matter what it feels like at the moment. Third, they must have the honor to keep what you tell them in confidence – and the wisdom and bravery to know when, for your safety, they should not.

Unfortunately, just finding this person can be traumatic. I have written before that when Janet started having really bad symptoms I tried to ignore them because I wanted her to be my partner in this battle – even when it became clear that such a partnership was no longer possible. Finding this support person can feel disloyal, but let me say in the strongest possible terms that as long as the relationship is maintained in integrity, it is not.

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Last week we talked about how common aggression and anger can be. The time has now come to start considering what are some of the things that can trigger violent or aggressive reactions? Here are just a few of the most common ones.

Lack of recognition: Simply put, they don’t know who you are. Despite all the memes and aphorisms about how you can’t forget love, the truth is that they can forget you. Sometimes the loss is temporary, and sometimes it is permanent. But being thrown together with someone they don’t think they know but yet exhibits a desire for emotional and perhaps physical intimacy, understandably produces fear and anger.

Progressive brain injury: Many sources of dementia are progressive – which is to say they get worse over time. The nightmarish part is that not only is your loved one’s brain dying, but they are awake to experience the full horror of it. I will never forget the looks of abject terror that I saw from time to time in my HD positive father-in-law’s eyes. At the time I didn’t understand the emotion behind those eyes but now I do.

Delusion: Dementia patients often start imagining troublesome realities. Ironically, these delusions can sometimes result from their injured brains trying to make sense of the previous two triggers. Note also that delusions come in two “flavors”. One, called reasonable delusions, are things that are possible, but unlikely. For instance, “My family is trying to kill me.” The other form, unreasonable delusions, consists of ideas that are clearly impossible like, “Zombies are hiding under my bed.”

Physical problems: These are issues like poor diet or ill health from unrelated maladies. For example, bad nutrition can put undue stress on anybody, and the last thing that someone with a degenerative brain condition needs is more physical stress. In the same way, ill health in the form of a Urinary Tract Infection (UTI) is a very common trigger for aggressive behavior. It should always be considered as a potential cause when the troublesome behavior begins very abruptly and the symptoms progress rapidly.

Ok, so we understand some of the things that can trigger aggressive behavior, but what are we supposed to do about it? While it’s not unusual to respond to anger and aggression with fear, shock, discouragement, confusion, feeling battered, irritation, and even anger of our own, these responses aren’t even remotely helpful, in that they do nothing to help your loved one, and make you feel rotten.

Of course we all know, or at least should know by now, that doing the right thing doesn’t always make you feel good either. Would it be wonderful if it did? Someday I may write about all the good, needful things we do that can leave us feeling rotten.

But I digress, let’s talk about some good responses. As we go through these ideas, think about how many of them fall under the broad heading of, “Do unto others as you would have them do into you.” Hence, maybe the fact we need most of this list says a lot more about us than it does about them. Just a thought to ponder.

So here we go, in no particular order:

Be realistic: Things have changed, and they aren’t ever going back to “normal.” I have talked about this point before, but I know that I need to be reminded. Some things are just not “fixable,” so excising from your mind the idea that you can fix the negative effects of the disease, will also remove a lot of stress. In turn it benefits your loved one because you will make better decisions.

Create a calm environment: Think about how to remove things from around them that are naturally upsetting. This might mean turning off the TV or changing the channel to something more calming. However, that act may not be as simple as it sounds. Recently, I saw a post from a woman who realized that one of the things that bothered her husband was watching the local weather forecasts! So don’t look for what you think is calming. Watch your loved one and observe what is calming – and don’t neglect the benefits of music, proper lights, and even the colors of the walls in their room.

Be vigilant: There is an old saying in the military about keeping “your head on a swivel.” What it means is that you don’t want to get so fixated on one problem that you miss another sneaking up behind you. Note this mode of behavior is not something most people do automatically. It may require a bit of conscious effort. In addition, this recommendation comes with a warning label: Remember that one of the symptoms of PTSD is hyper-vigilance. In that case, you may need help to turn things down a bit (see above: “Battle Buddy”).

Don’t ever argue: It never accomplishes anything, ever. The idea that there is such a thing as winning an argument is a myth – and a dangerous one at that.

Watch how you talk: Speak softly, slowly, clearly, and above all, reassuringly. Remember that for your loved one, their primary, everyday emotion may well be fear. When they are anxious or afraid, you want to be the one that they run to, not the one that they run from.

Give them time: Sometimes dementia patients require extra time to formulate a response. As much as is possible, let them set the pace of conversations. I have seen Janet take 30 to 45 seconds to complete the mental processing necessary to answer a question with a “simple” yes or no response. Likewise, you can help them by avoiding open-ended questions like, “What do you want?” Finally, remember that getting irritated won’t make their brain work faster.

Include them in the solution: Repeat their words back to them so they feel they are a part of, or are contributing to, what is going on. For example, Janet worries that when Frannie and I are out to eat, we won’t eat healthy. So on the occasions when we go out, I tell her that, “…we are going to eat healthy. Thank you for helping us to remember to do that.”

Redirection: Give them something to do instead of becoming angry and aggressive. For example, you can enroll them in “helping” you do what you need to do. If they are resistant to bathing, try giving them a cloth to wash their own hands while you clean everything else.

Don’t infantilize them! Even people with dementia can tell if you are being condescending towards them, and it irritates them just as much as it would irritate you. They may be acting like a child, but don’t treat them that way. Don’t order them around but instead, guide them in discovering the needful solution “on their own.”

Talk to the doctor When a new or troubling behavior appears, be on the phone talking to the medical staff about the problem to get their advice and, if necessary, medication.

So finally, there is one last topic that we need to talk about – and it’s the hardest one of the lot: institutionalization. While it is our most fervent hope and prayer that worst never comes to worst, we know that realistically, the odds are not in our favor. The best approach therefore is to have a plan, and step one is to educate yourself now. Don’t wait until there is a crisis and then try to figure it out on the fly.

First you need to know what resources are available in your area, and how to access them. Second, you need to know what the law is in your jurisdiction. Know what you are allowed to tell clergy, counselors, etc. in private. The issue here is that people can be compelled legally to contact the authorities if you confide certain things to them. Likewise, professional organizations often have ethics rules governing the disclosure of confidential information.

Remember, the point of all this preparation is that you need to be able to demonstrate that your loved one isn’t evil or a criminal, but rather that they are ill. They don’t deserve, and won’t benefit from, prison – they need hospitalization. So in order to be an effective advocate for them you have to find out what information or data you will need to prove that, realizing of course that there is no such thing as “too much” data. While the specifics may vary depending upon where you are, a good place to start is with documenting everything.

  1. Get letters from their doctors describing their condition and the effects that can be expected – and make sure that it is updated regularly.
  2. Take pictures of the bruises, cuts and scratches. If you take pictures with your phone, make sure that your phone is configured to automatically stamp pictures with the time and place where they were taken. Phones can also be configured to automatically backup all your photos to the cloud. Make sure both features are turned on.
  3. Keep a notebook where you make dated entries describing things that happen. These are called contemporaneous notes and are highly prized in court.
  4. Tell people what is happening – even if they don’t believe you. These are called contemporaneous conversations.

So there you have it, or at least the basics. All I have left to share is one last word of encouragement.

No matter how hard or painful the journey is, no matter how permanent your current tribulations feel, know that all of this is temporary. In addition, you need to also remember that our lives are ripples in the pond of the time. Hence, what happens now – and how you respond to it will have repercussions for years, and perhaps centuries to come.

So while it’s true that 100 years from now in 2121, your multiple-great grandchildren will likely know as little about your pain as you know about your multiple-great grandparent’s problems in 1921. The larger (and far more important) truth is that they will still be feeling the effects of your actions.

Through faith, this fact can be reassuring or without it depressing – it’s your choice.

In Christ, Amen ☩

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A prayer for when you are feeling short-sighted…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for being eternally present. But today I want to bless you especially for the part that You have given me in forming the eternal future. Guide my hands and direct my words to accomplish Your good works. Amen.”

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Anger and Aggression in Dementia,
How Common is it?

This post describes, my recovery from the loss of my wife to a degenerative neurological condition called Huntington’s Disease. She was healed of this condition when she went to live with our Heavenly Father at 2:30AM, the 10th of January 2021. You can read the announcement here.

Or if you would like to read our story from the beginning, you can start with: How We Got Here…

This week we want to start a conversation about a problem that is all-too-common in folks that are suffering from any of the myriad of diseases that produce dementia. In addition, some conditions (such as Huntington’s Disease) produce this problem – not as a side effect, but as a primary symptom. The problem is, of course, anger and aggression.

On the support forums, these symptoms are depressingly common. It matters little what the underlying condition might be, violent behavior is not rare. Moreover, the family caregivers get stuck dealing with it because the professionals (nursing homes, memory care facilities, etc.) simply refuse to become involved. I have been told by nursing home administrators that they don’t accept Huntington’s patients because they are, “…too violent.”

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My first encounter with the degree to which the professionals abandon people with anger issues to the amateurs at home, was with my mother who was suffering from dementia as the result of two strokes. She was nearly evicted from a local nursing home for being too aggressive verbally. Really? She was an 84-year-old woman who couldn’t get out of bed by herself, and your staff was concerned for their welfare? Give me a break.

Still, it is an issue that is out there, so I decided to look into it and found an amazing amount of potentially useful information. In fact, there was so much good information that rather than trim it down and possibly leave out something important, I decided to cover it in two parts. This post discusses aggression, some of the non-obvious concerns, and how common it actually is. Next week we’ll talk about causes and coping techniques.

Please note that while some of the following sources are HD-specific, similar research exists for all sources of degenerative dementia. In any case, the basic principles are the same.

For me, my research started with a paper by C.A. Fisher, et al, Aggression in Huntington’s Disease: A Systematic Review of Rates of Aggression and Treatment Methods. Published in the January 2014 issue of the Journal of Huntington’s Disease, this article summarized the contents of 23 research papers, published around the world, and came up with some stark results. For example, it concluded that:

“Aggression is one of the primary causes of hospitalization in this population, is associated with higher rates of nursing home placement, and places family members, carers and other clients at risk of assault.”

So how common is it exactly? In the research that study reviewed, the incidence of aggression ranged between 22% and 65%. In order to explain this wide range, the authors made an interesting observation: studies involving patients that had only recently been diagnosed tended to have the lower numbers while the high end of the range came from patient populations that had been diagnosed 10 years or more previous – or to put it another way, the longer the patient survives, the greater the chance that they will exhibit significant aggression.

By the way, this observation correlates nicely with one generic dementia study I found that pegged the incidence of aggression in the end stages of the underlying disease at greater than 80%.

So when we’re considering aggression, what behaviors are we talking about exactly? Everything from angry words, to temper tantrums, to physical assaults. The research paper I referenced earlier uses this definition:

“…any behavior that attempts to inflict uninvited force, harm, or damage to a person or inanimate object, or verbal behavior that is delivered in an intimidating manner (swearing, yelling, shouting, insults or threats).”

I’m glad to see that they included “inanimate object” in their definition. Why? Well, my late wife Janet and I used to have an album of wedding pictures – but no more.

In the HD world, a number of tools exist to help doctors and other professionals in identifying aggression in a clinical environment. Two of the most common are the:

  • Unified Huntington’s Disease Rating Scale (UHDRS)
  • The Problem Behavior Assessment for Huntington’s Disease (PBA-HD)

But clear winner of the prize for cool and suggestive acronym is:

  • Rating scale for AGgressive behavior in the Elderly (RAGE)

Over the years, Janet participated in several such evaluations. A big problem with these tools, however, is that they were typically administered while both of us were present. Consequently, there were times when I was left with the choice to either:

  1. Tell the truth and deal with 45 minutes of yelling on the ride home.
  2. Lie like a rug.

In the end, I did a bit of both. It would be nice if doctors, and especially medical students doing a neurology rotation, understood that asking a question like, “Has your spouse ever been physically violent?” while the spouse is sitting there is not a good thing…

Of course when Janet was going through her violent phase, I didn’t need forms and scorecards to understand that there was a problem. All I had to do was count the bruises and scratches on my body. This is from when she grabbed my right arm with her nails. You can clearly see the marks from 3 or 4 fingers and her thumb.

So if you are just starting out on your caregiving journey, or even if you’ve been on this path for a while, how do you even begin managing this kind of risk?

As with most things in life, forewarned is forearmed. The first thing, therefore, is to make sure that you are squared away between the ears by setting your expectations appropriately. To be clear, our goal is to prepare for the worst case scenario, but pray for the best case scenario (in which many of the preparations we make will never be needed). If this sounds like we are getting ready to go to war, well guess what… we pretty much are.

One of the blessings – and one of the dangers – is that the aggression doesn’t start all at once. Like that proverbial story about the frog in a pot of water, the “heat” sneaks up on you. They don’t just wake up one morning as a violent tyrant. Or if they do, it probably isn’t due to dementia, and is therefore treatable.

In contrast, dementia-related aggression starts slowly, with an illogical argument that isn’t particularly intense, and proceeds step by step from there. This progression means you have time to adjust and learn. But it also means that you can miss what is happening.

Perhaps this slow change is why our families can be among the last people to recognize that a problem exists. Sometimes it’s a matter of people having trouble letting go of remembered images of the past, and understanding the gravity of the situation. For example, it can be hard to get your head wrapped around the idea that “the sweet little boy” who used to sit on your lap and play, is slapping his mother around or threatening her with knives.

To be honest though, other times it’s a matter of willful ignorance. To avoid having to face either the unpleasant truth that a disease can be this horrific, or their own responsibility to take action, family members will sometimes jump to the conclusion that you must obviously be doing something to “provoke” the person. To make matters worse, even you can fall into the trap of thinking that everything must be at least partially your fault, because, you reason, nobody in their right mind would act like that unless they were being provoked. But therein lies the rub: they aren’t in their right mind.

Please be clear on this point: Nobody is perfect. So as a caregiver, you will make mistakes – I personally have made some doozies. The thing to remember is that saying you are never at fault, is as wrong as saying that you are always at fault. Falling into the trap of either extreme has dire effects on both your health and the quality of care you can provide your loved one.

Sounds easy to say, doesn’t it? The normal human condition is to be sucked into one of the extremes like an errant planet losing its identity in the gravitational abyss of a black hole. Although the emotional “black holes” that threaten us are metaphorical rather than astronomical, they aren’t any less real. In fact, in terms of our immediate experience, they are far more “real” than some anomaly of physics light years away.

So next week we will get into the immediate causes of the aggression, and how to deal with them. For now, avoid the traps by remembering that the truth in this case lies not in either/or (good vs bad) but in the realm of both/and: I am not as good as I should be, but I’m also not as bad as I could be. We are all – caregivers and care receivers alike – works in progress and so are all (in the words of the song) “Stumbling To Bethlehem”.

In Christ, Amen ☩

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A prayer for when you are just stumbling along…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for Your grace and love. But today I want to bless You especially for knowing me even when I’m not sure that I know myself. Thank You for not giving up on me. Thank You for keeping my feet on the path, even when the way is dark, and I can’t feel Your hand. Amen.”

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Being Successful

This post describes, my recovery from the loss of my wife to a degenerative neurological condition called Huntington’s Disease. She was healed of this condition when she went to live with our Heavenly Father at 2:30AM, the 10th of January 2021. You can read the announcement here.

Or if you would like to read our story from the beginning, you can start with: How We Got Here…

This week we’ll continue the process of revisiting some of my posts written over the past year and a half, and giving them a bit of a facelift.

This week Jean went through the past posts and identified one that she felt was one of her favorites. It originally ran July 12th of 2020, and was entitled What is Success? The post is notable to me for being the first post for which Jean left me a comment:

“Oh, I sure needed this today! I want to save it and come back frequently to remind myself of these things, even though this is my 2nd HD marathon.

“Thank you, Michael, for your wisdom and faith, and for sharing your thoughts so eloquently!”

At the time, she was caring for her daughter (Jennifer), after already having lost her husband several years before. For me, the comment documents the day that I first became aware that a person named Jean Barnes existed. But concerning the future… I had no idea…

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A past post talked about what happens to caregivers after they have successfully completed their care mission, and how they can find fulfillment and meaning by contributing back to the community. However, whether you realized it or not, there was a rather glaring hole in that discussion, which I intend to close right now. The previous post just assumes that the caregiver’s work ended in success.

However, that assumption begs the question, “In the context of caring for someone with an illness where the patient always dies, what exactly does success mean?”

  • Kept them safe.
  • Kept them alive as long as medically possible.
  • Gave them “Death with Dignity”.
  • Helped them to be happy.
  • Did the best I could.
  • Kept them out of a long-term care facility.
  • Got them admitted to a long-term care facility.
  • I outlived the person for whom I was caring.

But which, if any, of these goals forms a good basis for determining success or failure as a caregiver? Before we try to answer that specific query, let’s take a little broader perspective on the matter by considering a common metaphor: The foot race.

Over the centuries, the foot race has repeatedly proven itself as a way of explaining, exploring, and describing the meaning of success. For example, how many times have you heard someone describe caregiving as a “marathon” and not a “sprint?” How many times have you said something like that yourself?

The reason for this popularity should be obvious. A foot race has a clearly defined beginning when the starting pistol goes off, a predetermined length, and a precise end when the runner breaks the tape at the finish line. In addition, a race often includes the promise of a reward for winning, ranging from congratulatory handshakes and hugs, to formal awards such as this gold medal from the 1924 Summer Olympics in Paris, France. (Why the 1924 Paris Olympics? Patience, dear friends, patience.)

Gold Medal 1924 Paris Olympics

The problem, of course, is that the marathon a caregiver runs lacks nearly all of the things that make a race an attractive metaphor. For example, when did the cognitive problems definitively start? Maybe your loved one had been feeling the effects for decades before recognizing them. And predetermined length? Who are we kidding? They may survive for months, years or even decades.

Despite all these difficulties, race analogies can nevertheless be helpful by bringing with them a certain intuitive understanding of the situation. But this metaphor has much more to offer than mere vague generalizations, a point demonstrated by a wonderful movie I saw many years ago.

The year was 1981 and the Academy Award winner for best picture was a historical drama surrounding the eighth modern Olympiad, held in Paris in 1924. The movie is, of course, the magnificent Chariots of Fire, focusing on the lives of Eric Liddell – the so-called “Flying Scotsman” – and Harold Abrahams. You soon discover, through the film, that in many ways, these two men could not have been more different. Given their differences, it would be tempting (and easy) to cast comparison between the two of them in terms of the good (Liddell) and bad (Abrahams), but the truth is far too complex for that simplistic of a structure.

For example, while it is true that Abrahams was at times arrogant, carrying a chip on his shoulder the size of Big Ben, those personality quirks were not without cause. After all, Abrahams was Jewish, and England at the time was rife with antisemitism. But there was more to the man than that. He also demonstrated the ability to love deeply, and had a reputation for being intensely loyal to friends, his teammates, and (despite the racial problems) his country.

The really interesting difference between the two men is their reasons for running, why they raced. Liddell ran as an expression of who he was as a human being. As he once told his sister, “I believe God made me for a purpose, but he also made me fast! And when I run, I feel His pleasure.” Liddell raced because it gave him a reason to run and express who he was. A hallmark of the pleasure he felt was apparent in his unique running style. As can be seen in archival films from the time, when he crossed the finish line, his arms would be flailing, his head would be thrown back and his mouth would be gaping open in an impossibly wide smile – a smile.

By contrast, due to the daily reality that he lived, Abrahams had very different reasons for racing. He once told a friend that his intent for the antisemitic mob was to “…run them into the ground!” Simply running a good race was not adequate: all that mattered to him was winning. He wanted to be able to taunt them and rub their noses in his success. For him, there was no joy in running, only anger and revenge. But then something, we don’t know exactly what, changed him.

Perhaps it was the realization that winning an Olympic gold medal didn’t feel nearly as good as he thought it would, but instead left him feeling hollow inside. Maybe, as in the film, he witnessed Liddell win his gold medal event and saw on his face another reason to compete – the sheer joy of it. Conceivably, it was something that God worked out silently in the privacy of his heart. One thing is clear: if you read about his life after 1924 and all the things he did publicly and privately, he was a different person.

So what does all this talk have to do with being a successful caregiver? Simply this: I would humbly submit that there are two approaches to caregiving, that mirror the approaches these two men exhibited when racing. Moreover, I contend that we aren’t stuck in one modus operandi. Rather, people can and do change their approaches to the task of caregiving all the time – in other words, we have good days and we have bad days.

So the first approach is analogous to how a younger Abrahams approached running. Here the caregiver sees themselves as being embroiled in a battle, not against antisemitism or bigotry, but a disease. This approach does work, for a while at least. For example, Abrahams’ single-minded focus on winning at all costs, did get him to the Olympics, and it won him a gold medal. But the price was a level of isolated exertion that was ultimately unsustainable. Perhaps this is why so many caregivers die before the person they are caring for does: caregiving as a battle, in the long term, doesn’t work.

As I said before, the problem is that with our race, the beginning is uncertain, the duration is unknown and the end is unpredictable. So what we need is an approach that is more like the way Liddell ran a race, an approach that focuses less on what we are “doing” and more on who we “are.” With such an approach, success or failure won’t be judged at some arbitrary point in the future when the race is done. Rather, the goal is to express who you are and your giftedness right now, today, with every step.

What parent doesn’t find pleasure in seeing their child using and enjoying a special gift they gave them? Yet too often people of faith fail to recognize that God feels pleasure when we make full use of the gifts He has provided us. Like Liddell all those years ago, we can affirm that “…when I run (care/write/program/love my spouse/etc.), I feel His pleasure.” Moreover, we can learn that His pleasure isn’t just a nice feeling that lasts for a moment and then is gone. Rather, we can experience His pleasure as a sustaining force that enlivens us, strengthens us, and lifts us up on the wings of eagles.

Now that, my friends, is success.

In Christ, Amen ☩

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A prayer for when you are feeling spent…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the gifts that you bestow. But today I want to bless You especially for the strength that You give me for today. So often I feel run down and run over. Thank You for not just enabling me to survive trials, but to thrive in the face of adversity. Show me how to feel Your pleasure. Amen.”