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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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Dealing with Aggression:
Triggers and Responses

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…

Due to the length of the main body of this post, and the fact that little has changed, my weekly update on Janet’s condition is foreshortened.

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Let me start this week by saying that 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 publicly share 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.

A couple weeks 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.

So moving on …

What are some of the other 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 in my HD positive father-in-law’s eyes. At the time I didn’t understand the look, 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 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.

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. 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, but 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 that 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 – which, in turn, 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 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 that this mode of behavior is not something most people do automatically. It will require conscious effort. The one warning I would offer is that one of the symptoms of PTSD is hyper-vigilance. In that case, you may need to turn things down a bit.

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

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 when necessary, medication.

So finally, there is one last topic that we need to talk about – the hardest one: 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. However, 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 2120, your multiple-great grandchildren will likely know as little about your pain as you know about your multiple-great grandparent’s problems in 1920, the larger truth is that they will still feel 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”