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…
I don’t know if I mentioned it in the past, but a big concern with Janet, or anyone at this stage, is the operation of their kidneys. Which is to say, you worry over whether they are producing enough urine. We had a scare earlier when she went about 36 hours without wetting a diaper. But then it “let go” all at once in a veritable flood. After this cycle repeated a second time, we made the decision to insert a Foley catheter to help her pass urine. This procedure has been a rousing success in a couple ways: First, she is much more comfortable. Second, she is drinking more – no doubt because she feels more at ease doing so without the constant sensation of an overly-full bladder.
Unfortunately, her confusion is getting worse daily. In particular, she keeps asking me to help her to lie down in bed – when she’s already in the bed. Sometimes she thinks she is standing up, while at other times she thinks she is lying on the sofa that she used to sleep on. Just this afternoon she surprised me by asking me how my ex-wife Susan was doing.
I also realized that I need to be very careful about what I say around her. Even when she seems to be asleep, she hears conversations and gets worried about things she doesn’t understand – which is a lot. Been feeling very isolated this week.
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This week’s post marks something of a milestone. I have been writing this blog now for 52 weeks, or one full year. To me this feels a bit unreal for a number of reasons: To begin with, it doesn’t seem like it could have possibly been a whole year, even though it has been a very full year. While it is true that I had started healing by the time I began writing the blog, I was still very much an emotional basket case in November of 2019 and I feel amazed and incredibly blessed to still be standing a year later.
A year ago, Janet was in the midst of her violent, angry phase where she would strike out physically at anyone or anything that angered her, and at that time I angered her a lot. So not knowing any better, I guess, I just wrote about what I was thinking, reading, and feeling – everything. Although I probably wouldn’t have said it in this way back then, the bottom line was that I was tired of hiding. I was tired of having to maintain a public face for the world around me. Looking back, it is no surprise that this openness began healing some of the wounds in my heart – and seems to have helped a few other folks as well.
Looking back at some of my early posts, I realize that many of them were written in a state of near panic as I was trying to figure things out and keep my head above water. Some of the places where this panic is most obvious is in the prayers with which I closed every post. While some might consider this fact to be ironic, to me it has always made perfect sense. Consider, for example, the Psalms. They aren’t all lyrically enraptured reveries on the wonder of God’s creation – though a lot of them are. Many are also simply David complaining to God about how much his life at that moment stinks, but which nevertheless end with affirmations that everything really is under control.
I have often wished that Christians felt as open to complaining to God as our Jewish brethren do. How different our spiritual lives would be.
Something else I have learned is that the human body is a truly amazing thing. A year ago, I was in a rush to finish the first seven posts, because the way things were going I didn’t think Janet would last till the spring, but here we are in November. A year ago, Janet weighed 185 lbs, and when her weight dropped to 100 lbs I was sure death was very soon. But now she weighs less than 80 lbs – and still she keeps going. And if the body in general is amazing, how much more so the human brain?
The other day Janet and I were talking and she asked me how Dr Furr-Stimming (her neurologist) was doing. Janet was worried that her death would make the doctor feel like she had failed – a statement, by the way, that is so Janet. But it got me thinking, when was the last time you gave your loved one’s doctor a hug. Whether we are talking about Huntington’s, Alzheimer’s, Parkingson’s, Lewy Body or any of the many other degenerative neurological conditions, these folk go into work everyday knowing that nobody ever “gets well.” They, and the entire medical team, come to work day in and day out understanding, better than most, that behind all the platitudes lies the same grim reality: every one of our patients is dying and often there is little that we can do to even slow it down. Yet, they keep coming, prepared to face down the abyss.
In truth, they deserve far more than a hug, but maybe we can start there.
I have also learned that who you are coming into this experience is both a boon and a challenge. My approaching things as an engineer, the “boon” side of the equation included a predisposition to learning and figuring things out. Several posts are the direct result of my researching a topic that I needed to understand in order to better care for Janet. The “challenge” came from the innate drive that engineers have to fix things. However, in situations that are not “fixable” this drive can lead to frustration and anger. The lesson here is that regardless of how you were prepared for your journey as a caregiver, there is no universally perfect preparation, only what is needed for your specific situation.
Note also how I phrased that last sentence. The wording, “how you were prepared” was deliberate. At times it will feel like you have just been thrown into the deep end of the pool without any swimming lessons, but such is not the case. The truth is, no matter your background, it contains a veritable treasure trove of gifts for your current challenge, you just need to find them. And remember that the word “gifts” implies the existence of a “Giver,” and the presence of the gifts is an assurance of the Giver’s concern and involvement. The Giver is not silent.
In Christ, Amen ☩
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A prayer for when you are on the way…
“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 guide and provider. But today I want to bless You especially for all the ways you support me, the people who you bring into my life, and the knowledge and insights You bestow. But thank You especially for the opportunity to serve others. Amen.”
4 Replies to “Tempus Fugit”
Michael, a year later… I finally respond! Thank you for your posts and your welcome of others to this journey.
We do not know the day or the hour of Janet’s death. Who knows … she may outlive us both but I wanted to encourage you to find a way to continue this effort after her death so others can walk with you in the loss and at the same time benefit from your thoughts.
It is so fortuitous….my coming across your blog….. have just spent two of the worst days in this so far five year journey caring for my husband. Drawing near to despair by last night, I waken to find you, rational albeit scared, on my phone! God works in mysterious ways. I will be subscribing. Thank you and God bless you and Janet.
You’ve helped me! If you hadn’t opened up your heart, it would have been impossible for me to. Thank you!
Thank you for sharing your heart every week! Even though I am going through this HD caregiving experience for the second time, I always learn and am encouraged by your blogs.
Caring for my husband was very different in many ways from now caring for my adult daughter. However they are both gifts that are teaching me daily to depend on my Heavenly Father.