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…but what else do I need?

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.

This week we had an appointment with Janet’s neurologist. It went well, though her weight had gone down 2 lbs. Janet started a new medication this week that should help her with mood, chorea and sleeping. So far it seems to be helping a lot with her sleep. Last night she went to bed about midnight and didn’t wake up until about 10:30 am! Mood is continuing to be a problem. Last night she was yelling at me and Frannie about cough medicine. She said that I lied because I forgot to get the cough syrup that Frannie requested when I went to the store on the way home from work. Then when I found a bottle of a different brand at home and Frannie told me that it was ok and would work fine, Janet started yelling that Frannie was lying too. At that point I stepped in to protect Frannie and things went downhill from there…

After the party that I discussed last week, things went well between the two of us until Janet’s dad heard that I was (a) divorced and (b) a Lutheran. To this day, I’m not sure which bothered him more. I found out later that before we met Janet hadn’t been to Mass in 15 years, and although we had only known each other for 6 months, I somehow became responsible retroactively for the entire 15 years of her apostasy. In any case, one Sunday we were at her mom and dad’s house and they asked Janet to come with them to a back bedroom. A few minutes later she came out and announced, in no uncertain terms, that we were leaving – Jan was clearly angry. When we got out to the car she told me that her parents had been grilling her about my past life. She tried telling them that we had discussed it in detail and that was all that was necessary. But not for her dad, he just kept getting angrier and angrier. Have I mentioned that we think her dad is where she inherited the HD?

The whole next day at work, the conversation kept replaying in my head and every time it did, it bothered me more. So I decided to go back and talk to them about it – without Janet. By the time I get to my future in-law’s house, I was angry too. When I sat down to talk to her dad I reiterated that she and I had discussed everything so she was going into whatever was ahead with her eyes open. Consequently, if he had any questions about my past he was to talk to me directly and he was not to harangue Janet about it.

So he demanded to know whether I was paying child support. I assured him that I indeed was paying support. But he pressed further, “How much are you paying?” Looking him in the eye, I told him, “None of your damned business. Next question?”

For a moment, I was afraid that I had overplayed my hand. You see a few years before Janet’s dad had suffered a stroke and I was momentarily afraid he was going to have another one. His face turned a bizarre reddish-purple color and the veins on his forehead were bulging. So reckoning that I had made my point, I left. Later, when I arrived at Janet’s house, she met me at the door and related to me the contents of a phone call she had just had with her mother, and asked me if what her mother just told her on the phone was true. I told her it was, and she hugged me around the neck.

In the past, I have talked several times about the loss of identity that can occur when you lose a loved one and are grieving that loss. For example, after 30+ years of marriage, you might have come to identify as one half of a couple. But when that relationship ends you can be left wondering who you are now. Of course with diseases that produce dementia, your loved one doesn’t even have to die for you to experience that sort of identity crisis. As their personality changes, or worse, dissolves completely, you can be left in a state where you question everything about who you are, what you are doing and whether your work is actually accomplishing anything useful.

I believe that crises of these sorts all lead back to a common root: needing to be needed.

So to explore that point a bit, let’s start with the situation where your loved one is still alive, but is rapidly deteriorating. Oftentimes when a loved one is newly diagnosed with a degenerative disease, they respond with thankfulness and gratitude for every little bit of service that you provide them. But then things start to change. Due to the effects of the disease, the warm feedback stops and your loved one becomes sullen, uncommunicative or even openly hostile. Instead of the original, “Oh thank you, honey, for getting that sandwich for me.” You have to deal with, “So what took you so long?!” – or worse. To address this case, let’s take a riff on a famous kōan:

“If a tree catches fire in the middle of the forest, and there is no one there to see it, is a fireman needed?”

Clearly, one tree can catch another, thus leading to a wide-spread conflagration, so in one sense, yes, a fireman is needed. Now, let’s say that by chance, a fireman happens by and seeing the flames, puts them out, and saves the forest. The thing is, as that fireman proceeds on his way, he may be basking in a real sense of accomplishment, but it’s very likely that he won’t feel “needed” because there was no one around to acknowledge that need or express gratitude for his actions.

Here we see in stark contrast the two aspects of needing to be needed. One is the objective question of whether or not some action is actually warranted. The other, subjective point, is how your actions are perceived. From this explanation we can see that most scenarios where a caregiver complains about not being needed are actually cases of where they don’t feel needed – an important distinction.

Consider that saying, “I’m not needed”, is voicing a statement that is almost entirely about you: You are not adequate for the task at hand. You are not important. You are not enough. However, saying, “I don’t feel needed.” is a comment that is all about the care situation. In fact, the assumptions behind such a statement are that you are adequate, and you are important, and you are enough. The problem is in the reaction. That is a much different, and far easier, problem to solve, and one that we have talked about before.

Curiously, this dichotomy can even exist in the situation where the loss is complete because the loved one has died – though it looks quite a bit different. Now the objective view affirms that you indeed are not needed because the person needing you has died so there is nothing more that you can do for them. But here, the subjective view can come to your rescue by pointing out some important things to consider.

Above all, there is the matter of perspective. Maybe you aren’t feeling needed because your worldview is too small. Instead of wringing your hands over being “useless”, try asking God, “What is there for me to do?” Alternatively, you can look at the challenges that you have recently faced and reconsider them from the standpoint of the question, “What was God preparing me for?” Now admittedly that might be a novel perspective for some, but I have found that it’s the novel perspectives that give the most interesting answers. Oh, and given that there is no such thing as a coincidence, don’t forget to consider the talents that you have picked up along the way – even a trivial one like knowing how to knit…

To illustrate, many years ago when we lived in Tucson Arizona I heard a story on the radio about how dangerous hypothermia can be for people living in the streets – even in Tucson. So in response, I came up with the idea of creating an interdenominational project to knit stocking caps for the homeless men, women and even families. Each cap came with a tag inside it that said:

“This cap was not bought in a store. It was hand-knitted by someone who believes that you are worth the effort it took to create it.”

For distribution, I went to the Salvation Army. By the end of the project, they had handed out over 700 caps that we created.

Now I assumed that this project would do great things for the folks receiving the caps. What surprised me, though, was the gift that it was to the knitters. For example, one the ladies was from one of the big Catholic churches downtown. She and her husband had been active members for many years and when he passed, she embraced new role as widow, and threw herself body and soul into serving the parish. She chaired committees, headed up charities and out-reach programs, you name it.

Then one day her doctor told her that she had a very bad heart and that she had to stop all outside activities – she wasn’t even allowed to leave her apartment to go to Mass. In one day, she went from being involved in everything to feeling literally quite useless. And to make matters worse (from her perspective at least) it quickly became apparent that all the parish organizations that she had been in were managing quite nicely without her.

A few weeks later when the priest came by for his weekly eucharistic visit, he told her about this guy who had contacted the parish office with a project to knit stocking caps for the homeless. Maybe that was something that she could do since knitting isn’t at all strenuous. So she called and I explained the project and why it was needed. Even though it had been years since she had knitted, in the end she agreed to try. The next day I went to visit her and give her some yarn to get started and a pattern.

To make a long story short, she attacked this new project the way that she had everything else in her life and soon she was turning out caps at an amazing rate. It didn’t take her long to use up the yarn I brought her. So she had friends run to the store and she bought more yarn on her own, and people she knew from the parish brought her even more when they heard about what she was doing.

With this simple thing she found new meaning and new usefulness. But mostly she found people who truly needed her.

However, all this discussion begs the question, “What is it about being needed that we find so important?” Well I believe that when God created humankind He, metaphorically speaking, left His fingerprints in the wet clay. And I believe that one of those fingerprints is our deep need to serve others. The reason we need to be needed is that it’s built into who we are as people. In fact, it’s so much a part of who we are that to deny it we have to in essence deny our very humanity. Perhaps this is the one of the root problems of big cities and other environments that teach us to ignore others and just look out for ourselves: survival is framed as being dependent upon us not being human.

So to close I want to quote Ralph Waldo Emerson. I feel with its pithy, very New England tone, this statement puts the point particularly well.

“The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”

In Christ, Amen ☩

A prayer for when you don’t feel needed…

“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 creating me in Your image. But today I want to bless you especially for the divine mark that You left on my soul that enables me to not only enjoy serving, but allows the serving to sustain me, like emotional or spiritual food and water. Correct my too-small perspective and clear my eyes so that I might see the work that you have set before me. Dear Father, make me useful. Amen”

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Getting Ready for the End

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.

Back before Christmas, you may recall that Janet decided that she was tired of fighting and wanted, to go be with God. However, our son and his family visited over Christmas and that visit has been like a tonic for her. As things sit right now, her attitude is much better and she is wanting to resume PT — all good stuff. But having said that, she is still basically living on yogurt. We have tried a few other things, but the result is always the same: choking.

So for now, things are better, but as with most things related to HD, “better” is always a relative term that can change at any moment. So I’m enjoying the present respite and refusing to worry about the disease’s next phase — I’ll worry about that when it gets here…

In the past, I have written about the process of letting go that a family goes through, and let’s be honest, the final stage in this process — physical death — is going to be traumatic enough without needing to worry about (for the lack of a better term) the logistics of dying. Please note that several of the things we’ll be covering could have legal implications depending on where you live. One of the things that has surprised me about this blog is how far it has reached. As I sit here writing, the blog has been accessed from more than 30 countries. For this reason, I have no way of knowing what local requirements might exist in your local jurisdiction. So please check with appropriate authorities for what legal requirements you might need to satisfy.

Much of what we are going to be talking about falls under the heading of End of Life Planning or Final Arrangements. Hence, the first important point to make is: Do not wait for the “End of Life” to formulate your End of Life plan! In an ideal world, spouses should have addressed at least some of these issues as soon as they were married, but when you are young and are convinced that you live forever, matters like these are often avoided because it can be uncomfortable to consider your own mortality. If you have been in the group just, “kicking the can down the road”, it stops now. There’s no road left.

The matter is especially urgent if your loved one has, or has just been diagnosed with, a degenerative condition like Huntington’s, Parkinson’s or Alzheimer’s. For much of this planning, you are going to need their input which means that you need to be discussing these matters while your loved one still has the mental capacity to communicate their thoughts and desires. For example, if your loved one is nonverbal and not eating, that is not the time to be trying to figure out whether they would want a feeding tube.

Maybe it was because we were older when we got married, or more likely this is just who Janet is, while we were still dating she and I talked about issues like what level of life support we desired in the case of a catastrophic illness or accident. Most young couples discussed wedding plans over candle-lit dinners, we discussed the pros and cons of feeding tubes and ventilators.

It is important to note that while you don’t have to agree on everything, you do need to know what your spouse wants for him/herself. Whether you are legally assigned as their medical power-of-attorney (MPOA) or just recognized as the “next-of-kin” you have, at the very least, an ethical responsibility to speak for them and not insert your own wishes into the process. When making these arrangements, you can discuss, advise and counsel, but at the end of the day, it is their life and (right or wrong) it is their decision to make.

The other thing you have to decide is what happens after they die. Ever since Janet discovered that she did not have Hepatitis as a baby (long story) she has wanted to be an organ donor and so has been signed up for years. However, a couple years ago we realized that the exact circumstances of her death could compromise her organs for use in transplants. Therefore, as a backup plan, she made arrangements to donate her whole body the McGovern Medical School at the University of Texas to help train future doctors. Alternatively, if your loved one wants a traditional burial or cremation service, now is the time to make those arrangements and, if possible, make pre-need payment arrangements.

Next, the surviving family — and the caregiver in particular — need to be thinking about how they want to spend their time the day that their loved one dies. Do they want to spend the day:

  1. Praying, crying together and consoling one another
  2. Running around the house like a crazy person looking for phone numbers and legal papers

Obviously, Option A is preferable, so now is the time to be making that day possible. First, you need to know what actions will need to be taken, and who needs to take them. I spent a chunk of time while I was in the Air Force flying with “The Peacemakers” the Strategic Air Command, or SAC. One of the things that SAC loved was checklist, because checklists are a great way to make sure everything that needs to happen, does. When the stuff starts hitting the fan in a serious way (whether it is World War 3 starting, or your wife dying), it can be easy to get emotionally overwhelmed. The checklist provides a point of focus and a list of things that you can do to manage the situation.

To create your checklist go back over your arrangements and decide what things need to be done, the order on which they need to be done and who is responsible for doing each of them.

For Janet, if she dies at home we know that the number for hospice as our first call. They will, in turn, contact the organ donation folks and the medical school to determine the final disposition of Janet’s body. Next, we have a list of family members that we need to contact as well as our pastor and a couple folks from church. By the way, that contact list includes an item to update this blog with a notice that I have it written. All I need to do is fill in the date and time, and post it. If it sounds strange that I would get online at a time like this, well, regardless of which of the 30+ countries you live in, you all are family too, so I want you to know. Finally, there are the legal calls to the life insurance company, social security, and the state agency that is providing disability services for Frannie. She has learning disabilities and her mother dying impacts (in a good way) the services that she can get.

The second thing you can prepare ahead of time is a binder containing all your legal documents to include: Will, hard copies of the MPOA paperwork, insurance papers, birth certificate, an up-to-date list of the medications they were taking, and so on. If you are working with a hospice organization, they can advise you on what you should have available. Note that this binder can also come in handy if the need ever arises for you to bug-out fast due to a fire or natural emergency.

Finally, and I can’t stress this point strongly enough, make sure everyone in the immediate family understands the arrangements that you have made ahead of time. You don’t need the added drama of someone getting angry because they didn’t understand the plan. Remember also that when “The Day” finally comes, people (including you) can express what they are feeling in a variety of ways. Some may get busy “doing stuff”, some may pray quietly, some may wander around aimlessly, some will want to sleep, and some may develop a sudden urge to play a video game or watch an absurd, pointless program on television. And some, remembering a past incident or hurt that the disease caused, may want to get angry and yell.

Try to organize sufficient family time combined with times that let everyone process as they need, as long as their behavior isn’t disruptive to the others. When there are disagreements, try to remember the real reason for the upset probably has nothing to do with what the argument is about. Rather, it’s because you all have just lost someone that was part of your life.

So, how about an 11th commandment: “Thou shalt cut each other some slack.”

In Christ, Amen ☩

A prayer for when you are preparing for The Day…

“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 wisdom and care. But today I want to bless you especially for the promised eternal life that You have waiting for {The name of the person for whom preparations are being made.}. As I work to complete the preparations for their trip home to You, give me wisdom to make the right decisions, and when the day comes for their departure, please fill out home with your holy angels to soothe old wounds and to remind us of the reunion that lies ahead. Amen”

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Reaching Further Out, #2

One of the things that I have recognized the need for is a place to expand the scope of what the blog talks about by adding supplementary posts covering other material that is related to the weekly updates, but which don’t fit well into those conversations.
This is one of those additions.

I had not originally planned to have a follow-up for last Sunday’s regular post, but earlier this week I read something online that changed my plans. What I saw was a Facebook post from Corrie Harris on an HD support forum. It was so good and to-the-point that I knew I had to give her words broader exposure. So here they are. I have touched up the formatting a bit, and fixed a couple misspelled words, but the heart, love and message are all Corrie’s:

In Christ, Amen ☩

01/04/2020 00:40

So, I have been contemplating whether or not to type this out and hit the send button — or just not post and continue to suck it up.

There is a scripture that says, “…Rejoice with those who rejoice and weep with those who weep…” I don’t know how many years I’ve been on the Huntington’s support group pages and have known each of you, but I have known a few of you for over 5 years, all online. We get close because we are all going through similar things. You were and still are my ONLY support. My only cheerleaders. The only place I go when I want to vent or rejoice. Until about 18 months ago, most of my time online was spent either in questions, research, agony, complaining, or being stressed out of my mind by my husband Richard’s HD symptoms and new-found personality.

Many of you have been there for me and I will always appreciate each one of you for that. Your presence reassured me that I was not alone in my pain. But now, with thanks to God, a better HD team, better meds for Richard, and an absolute change in my own attitude and heart, that season has melded into a new one. I see my husband, and the marriage covenant in general, differently. Things are now in the “happy” and “going good” zone, but I still feel a little alone here in my JOY.

I think it has bothered me for a while, but I couldn’t put the exact words to the emotions I was feeling — now I think I understand. I realize that reading a post saying, “I’m having a good day.” can be hard to read when things are falling apart in your own life. I know how hard that can be because I have been on the other end of that relationship!

But, I now realize that the JOY and the good times, days and moments are equally as important to share, so we can rejoice with and encourage each other. Frankly, too many caregivers suffer alone and die early deaths because in the end they are undone by the disease they are fighting. Without encouragement, the tragedy, heartache, anger and pain of this disease sucks the life out of us.

A spirit of complaining and drudgery does NOT help any of us. In fact, it kills us, and it kills our families. It makes it such that our children never want to come home for the holidays or even to visit. I have not handled all of these things well in the past, so I guess more than anything I am just wanting to say that we need to celebrate each other as much as possible, and to not forget that laughter and joy is excellent medicine. Love is a healer and hope gives LIFE.

I have avoided this group for a bit because (as I said before) I was feeling isolated due to how well things were going. But now I’m back and I’m putting out these honest thoughts in hopes that I can help to build an authentic community that is healthy and helps to produce life-giving and long-lasting friendships. This disease is brutal and we all need friends, especially friends that understand.

By the way, I celebrated our 32nd wedding anniversary today by posting the news on Facebook. Richard saw the post and liked it, but there was no other response. I haven’t had a gift, a card or even a real hug in nearly 5 years. Richard can no longer provide those things, and that breaks my heart. For many years I was selfish and angry and could not see the difference between the HD and him, but now I do. Lord, have mercy on me for when I didn’t! Richard would love me back if he could. I know it.

Corina

A prayer for when you are having a moment of clarity…

“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 clarity that you bring to my life. But today, I want to especially bless you for the clarity of understanding that I now have, as fleeting as it may be. In scripture, you told Abraham and his descendants to set up monuments or institute holy days so they will remember Your goodness and blessings. Lord, please be a living monument in my heart. Never let me forget the lessons that I have learned, or the perspective on life that you have brought me. Amen”