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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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Nursing Home? Now?

This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.

If you would like to read our story from the beginning, you can start here: How We Got Here…

This week I’m continued to work downstairs so I could be near Janet. Things are going well except that Janet has an open sore on her bum. The nurse said it’s not a bed sore and they have given us some cream to put on it that is supposed to help it heal.

The other night, Janet called me and told me that she needed help getting into bed, and turning off the TV. She also had a tablespoon that she needed me to put in the dishwasher. Not a problem except that:

  1. She was already in bed.
  2. The TV was off and the room was dark.
  3. There was no spoon.

She may have been dreaming, or this may be something new – only time will tell. Perhaps it is related to something else that I have noticed: some time ago, Janet started losing track of what day it was. She has just started having trouble distinguishing day from night. The other afternoon I was finishing up my work for the day and Janet asked me what time it was. When I told her that it was 5 o’clock, she looked at me strangely and asked me what was the matter, couldn’t I sleep? Although I had been sitting next to her all day working, she thought it was 5 in the morning.

This week, I spoke with a family member of Janet’s who related all the people who (decades ago) might have had HD but were either diagnosed with something else, or simply passed off as unpleasant people that you didn’t contact unless you absolutely, positively had to. She spoke passionately about how bizarre it is that people have this disease in their family and they don’t want to talk about it. I had to tell her that I didn’t understand it either.

For me, the whole conversation really drove home two points: First, if we are open to the change, we can derive from our caregiving experiences a perspective that fundamentally alters the ways in which we interact with others. Maybe that guy who cut you off in traffic wasn’t a “jerk.” Maybe he is carrying around a pain that he can’t begin to express and you can’t begin to imagine. Second, what a blessing it is to have a definitive test for HD! As hard as it has been dealing with this disease, I can’t imagine going through this and not being sure what it is that we are fighting – but until 1993 that was exactly the situation we were in.

Bottom line is that I believe we owe a tremendous debt not only to the doctors, but also to those families in Venezuela who suffered in silence from the disease and the associated social stigma for generations. In the end, the thing that made the discovery of HD’s genetic markers possible was the unique circumstance that everyone in the region around Lake Maracaibo that had HD all shared one common ancestor from the 1800’s – who, by the way, has today an estimated 20,000 descendants who are at risk.

Thanks to Dr Huntington, we have a description of the disease and a name. Thanks to the people around Lake Maracaibo, Venezuela, we know what causes the disease that Dr Huntington identified. Thanks to the ongoing research in many countries, the cause identified in Venezuela has led to the testing of several potential treatments – a couple of which are showing great promise. The fact is, all these points in time are nodes on a golden thread that someday will end, not with just treatments for this disease, but with its eradication. Someday, someone will say, “I am the world’s first HD survivor.” and then in an even more distant time, “I was the last case of HD on earth…”

Consequently, no node along that thread is more important than another because if you take any one of them away, the thread breaks and we are left in a world of pain, superstition and uncertainty. So while the future may still be murky, we at least know what we are up against – and that’s not nuthin’.

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This week we are going to consider one of the common questions in the support forums – whether it is explicitly stated or not. This question appears in post after post written by caregivers who are at the ends of their figurative ropes. While the words of these messages might take the form of “rants,” the subtext lying just below the surface is often a very simple question:

How do I know when I’m in over my head?

Which, let’s be honest, is just a gentler of the way of asking the question that everyone is afraid to ask, and the “professionals” are apparently afraid to answer:

Is it time for my loved one to go to a nursing home?

I know that during the time that I have been caring for Janet, I have asked that question repeatedly of doctors, social workers and counselors. Unfortunately, the closest I ever got to an answer was,

“I don’t know, but families typically wait too long…”

So I did what people do these days to learn things: I tried looking online. However, even there I found little useful information because everyone seems more interested in telling me where to put Janet, than in telling me how to determine if she even needed to be in one.

What I have found is that a large part of the upset that people feel about putting someone in a care facility can be self-induced, because the caregiver failed to evaluate three big questions:

1. What is your loved one’s current situation?
This is a big one and potentially confusing, as well. The point here is you need to know and understand, as dispassionately as possible, your loved one’s strengths and weaknesses. However, while your opinions may play a role, in and of themselves, they aren’t enough. Your loved one’s abilities need to be measured, and that is where ADLs come in to play. The acronym stands for Activities of Daily Living, which is a term used in healthcare to refer to people’s daily self-care activities.

Common ADLs include the ability to feed oneself, bathing, dressing, grooming, work, homemaking, and toileting – all pretty basic stuff. Another ADL that requires a bit of explanation is functional mobility, often referred to as “transferring,” it is a measure of the person’s ability to walk, and to get in and out of a bed or chair. Don’t be anxious to rush past this one. Too many caregiving experiences come to a tragic, premature end as the result of a fall and a broken bone.

Now the tricky part of this sort of evaluation is that these measures are not simply black or white. Rather, the evaluation is all about analyzing the shades of gray! However, over the years, the medical profession has developed a number of tools for formally assessing your loved one. Common ones include the Katz ADL scale, the Older Americans Resources and Services (OARS) ADL/IADL scale, the Lawton IADL scale and the Bristol Activities of Daily Living Scale.

Normally, these evaluations are performed by trained personnel one-on-one with the patient, but you may be invited to assist in the evaluation – especially if your loved one has trouble with verbal communications. But if you are so called upon, remember that unless you are specifically addressed, your job is to help them communicate what they want to say. Of course, if they say something that is unequivocally false, by all means point it out, but don’t put words in their mouths.

Also think about current living conditions. Are they at home alone or are they living with you or another caregiver – such as an equally infirm spouse? Are they open to change? What sorts of changes will they likely accept? My mother, for instance, was absolutely insistent that she never become, “… a burden to my children.”

2. What is best for your loved one?
Clearly, this is a complicated question. The complication arises because the clause, “What is best…” implies a concern for their needs, but which needs? There are many categories that we could insert here, but to get a just a taste of what we are confronting, consider for a moment how overloaded a term the word “health” is. Everyone wants to be “healthy,” but nobody has a definitive meaning for the word or even a complete list of all the possible subcategories (mental health, physical health, spiritual health, financial health, etc.).

Next, what happens when the needs raised by one category are in conflict with the needs of another category? For example, in a mad rush to save peoples’ physical lives from a virus, we sometimes find ourselves killing them emotionally and spiritually. At one point, not long ago, the word “holistic” was being bandied about frequently in terms of healthcare, but no longer. Only the truly brave should take the time to contemplate what that fact says about us as a people.

Finally, in addition to needing to do a lot better job at prioritizing a person’s needs, we also need to think about interpersonal needs – such as when one or more of their needs is in conflict with a need of ours.

After my mother had her last stroke, she was left without the ability to speak, but made it clear that she didn’t want additional care: she didn’t want food or water, it was time for her to go. My son was visiting with us at the time and he participated in the conversation with the doctor where the decision was made to move her into hospice. At the end of the conversation, I asked him how he felt, and he gave a raw, honest answer. He simply said, “Selfish.”

Her need was to go on to what was next for her. His need was to not lose his grandma.

And unfortunately, that is where I’m going to have to leave this question. I don’t have any answers to give. But maybe that is the point. Maybe this question is one for which there is no “final” answer. Maybe this is a question that you must hold open and wrestle with every day.

3. What resources do you have at your disposal?
When people typically use the word “resources” today, it is most commonly used as a euphemism for “money,” and while the financial resources you have at your disposal are important, they are by no means the only resource of importance. As unhappy as this fact makes certain types of people, there are problems that can’t be fixed by “throwing money at them.” Still, there are things that money can buy to help keep a loved one out of a nursing home. For example, I have commented in the past about the interior security cameras that I installed to help me keep an eye on Janet – they weren’t inexpensive, but compared to a nursing home, they were a bargain.

My recommendation is to be systematic in analyzing all the resources that you have at your disposal. For example, you may have significant familial resources. Our situation is a good example of that. I don’t know if Frannie understands the positive contribution that she has made to her mother’s life, but she is amazing. Our son has also provided comfort and support, and an unending string of milestones that motivated Janet to keep going: graduation from college, military commissioning, marriage, children, and most recently his promotion to Major. In a broader context, even my children from my previous marriages have been there for her with prayers and advice.

In the same way, take some time to analyze the social, religious, governmental resources.

In terms of social networks, I have heard that there is no easier way to identify who your real friends are than to simply start honestly answering the question, “How are you doing?” But candid answers to that question can do more than simply weed out the smiling faces that really aren’t interested, they can also serve to attract people to you that are interested and concerned.

In this drive towards emotional honesty, don’t leave out honest conversations with your pastor, minister, priest, or rabbi. Likewise, if your loved one belongs to a different church (or faith) contact their clergy, as well. And be diligent to educate yourself about spiritual practices that might be supportive to them. For example, if your loved one attends a liturgical church (basically Catholic, Orthodox, Lutheran or Episcopalian) they may draw strength from Eucharistic visits by a member of the clergy, or a specially commissioned lay person called a Eucharistic Minister. Such visits are a time for conversation and prayer, but also an opportunity to receive Communion or the Eucharist. Last week I talked about how much such a visit meant to Janet. Just let them know ahead of time if there are any dietary restrictions – like no alcohol or gluten intolerance.

Finally, in terms of government (or quasi-governmental) support, many jurisdictions are trying to make it easier to get help. For example, in Texas, calling 211 puts you in contact with either an automated system or a human counselor that will help you identify your needs and the resources that might be available to meet those needs.

While you consider those questions (and others that you may discover on your own), I want to again point out how fast situations can change. For example, your loved one might be fine one day and but thanks to an injury or an acute medical condition that suddenly arises, they might need a short-notice placement in a nursing home or long-term care facility.

The thing to do is plan for contingencies. Be looking at places before you need them, and have your options narrowed down to a short list of two or three places that you would be happy with if a critical need should suddenly arise. Also be thinking about potential legal issues, and remember that elder law is a specialty (in the US at least) so have in your “back pocket” the name or names of lawyers in your area that have good reputations and are skilled in this aspect of the law, should the need arise.

Above all, make sure you have a medical POA (Power of Attorney) in place. This critical document must be executed while your loved one is still mentally competent to make decisions. Don’t forget to sort out their desires for end-of-life care.

In the US (and other places as well) there are also volunteer ombudsman programs that can help you navigate the often choppy waters of getting help for your loved one. Another good source is this website. Although it is managed by (of all things) an internet marketing firm located in British Columbia, it presents solid information and has no obvious “axes to grind” that I noticed.

Finally, remember that if you decide that the best thing for your loved one is to move to a long-term care facility of some kind, that placement changes your responsibilities as a caregiver – it doesn’t obviate them. For example, an unfortunate fact is that elder abuse is real and is unfortunately growing due to the lack of oversight due to such things as Covid-19 mitigation measures. At all times, as their advocate, you will need to be a bulldog: a polite, convivial, friendly, firm and (when necessary) courageous – bulldog.

In Christ, Amen ☩

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A prayer for when you need wisdom and insight…

“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 all-knowing presence. But today I want to bless you especially for the promise to give knowledge to those who earnestly seek it. I need your wisdom and discernment, please. Amen.”