Currently my husband and I are blessed to have couples' therapy. We probably only have a few sessions left, which worries me as Mon Amour declines and other things will arise because of that. But for now it has been mostly helpful. I feel at least heard and understood by my therapist. It has been nice having someone else besides me let my husband know where I'm coming from so that my husband doesn't just think I'm an emotional, over-reactive woman who is not the same person he married. Because while all those 3 are true, there are reasons behind them that he just didn't want to listen to. And the therapist has been able to help him see those reasons since Mon Amour wouldn't listen when I tried to explain them.
One of the things I'm struggling with as a caregiver spouse is the level of our relationship. Our therapist said to try to beware of our relationship becoming a parent-child level and try to keep it at adult-adult (or spouse-spouse) level. I wholeheartedly agree with that. But I'm also trying to figure out how to do that with our new dynamic.
We are blessed that at this moment, Mon Amour is not wholly reliant on me as caregiver. He can feed and dress himself, but both take much longer in order to ensure his safety. He can communicate with others, but a person not used to his speech patterns may need me to help interpret what he said or where his thought processes are going. He finds his own ways to occupy his time and interests. Because of his abilities, we don't qualify for outside help. Which is nice in some ways. But it is also stressful for me in other ways and where I struggle in not becoming parent-child level. I think it might feel less like that if I weren't already the caregiver to 3 (sometimes 5) children at the same time.
It's been emotionally building up in me lately. And I felt that writing about it would help me in processing and coping. It can't hurt to have it documented as well. Especially as it's hard to know what is Gertsmann-Straussler-Scheinker disease, what is Cerebellar Ataxia (which is caused by his GSS but many others with CA experience same symptoms), what is his oncoming dementia (again part of GSS but needs its own category because of the significance of it), and what is him experiencing this new path of his life that he isn't always aware how it is affecting him. I thought I would list some of the things as they come to mind, and they won't all be in one post. Some I may not remember right now, and sometimes I need to be able to talk more in-depth
*Mobility. 75% of his mobility he can handle on his own. 5% needs me to enable him to do without incident: clear toys out of his path, watch out for cracks that could send the walker flying, be there when a step is involved in case he loses balance while wielding cane or walker. The last 20% needs me or someone else: wheelchair for outings, holding doors with no ADA features, folding up the walker to get out of the way, unfolding the walker to use, moving the walker as he gets out of a vehicle or navigates multiple stairs.
*Falls. He has a LOT of falls. Thankfully most of them are still minor trips, stumbles, collapsing into chairs while trying to sit or stand. (I should note that he doesn't count something as a fall unless he ends up on the ground. That is not how the Occupational Therapist classifies them. So if you were to ask him, he would say his falls have increased but not that many. The OT definition shows he falls every day.) About once or twice a week he has a minor-medium fall. About 15% of these I don't know about because I was out with the kids or asleep or it was noisy enough on the floor of the house I was on that I didn't hear the fall from the floor he was on. He tells me after the fact, especially if he had significant pain or bruising come from it. About 70% are ones where I run to him and ask if he's ok or needs anything. In those minor-medium ones, he doesn't need my help. But I have to check in case it was a more significant fall.
It's hard to juggle being concerned or an available caregiver but also trying not to embarrass or degrade him. He wants his autonomy as long as he can have it, and I respect that. But every day is a question of how much autonomy should he have in any given situation, and the answers are not a linear decline. They are a roller coaster of highs and lows.
10% of the falls are significant and require me to some capacity. He fell in the downstairs bathroom once, getting wedged between the toilet, half in the shower, and with the shower rod and curtain having fallen on him. It was just such an angle that he couldn't get his footing under him and grab a hold of something nearby to hoist himself back up. A similar fall by the bed and his nightstand did the same thing. Others of those falls have me examining if he is bleeding (which he isn't and why I put them in this category), or later ascertaining if there is significant bruising or strange lumps from the fall. Sometimes it is me checking on one of the children who was affected by the fall's impact to some degree. Sometimes it is cleaning up a mess or throwing away a damaged item. Most of those falls he rallies as best he can afterwards. But there have been a couple where he broke down emotionally. I'm sure it is for varying reasons, so I'm not sure if he wants me to stay for comfort or if my presence makes it worse. I try to ascertain without exacerbating the situation, but I never know what I'm doing.
5% of the falls are the extreme ones. Where there is bleeding involved, worry of concussion, or slight loss of consciousness or seeing stars. 5% might be a large percentage for that. (I like percentages but they're all guesstimations.) He's had about 5-10 of those falls in the last 2.5 years, including one just last week. So maybe that's more of a less than 1%. But they have been traumatic enough to strongly lodge in memory. They are what make me extremely wary, trigger my anxiety, and have me worried that each fall could be in the extreme category and always have me running to check on him.
Occasionally I can tell by sound that a fall was minor-medium and not one that needs my immediate attention. So I don't run to him. I call out "is everything ok?" It seems really callous to write that out. But for his pride, and my anxiety and heart rate, it works for us right now. He answers quickly if it is something he can handle on his own. If he doesn't answer quickly, then I hurry over to check.
Recently, because I've been in situations when I can't get there right away, if I hear the sound of a fall that needs quick checking I send one of the kids. I probably shouldn't. But they need to know how to assess, handle, and help in the falls, too, because I have to prepare them in case I'm not there.
*Incontinence. If he ever gets around to reading this blog, I apologize to Mon Amour for including this topic. But it plays its role. Most people without mobility issues just get up and go when they need to go. And if there is urgency, they can move themselves quickly. But Mon Amour's particular mobility issues make that difficult. In the restroom he has to manage fiddly things like buttons or zippers that are difficult with his hands which have lost their dexterity and fine motor strength and grip. Pushing and pulling the pants themselves is a hazard because of balance, and the focus on that takes away from the focus of keeping things in.
Now, yes, months ago when he realized this, we started looking into adaptive clothing. He wears sweatpants more than he previously did in all 40 years combined. He is not a fan, but needs must. We've looked into other adaptive clothing, but we haven't set aside budget for those just yet. We have also talked about incontinence underclothing and I have researched those a little but not much as that is a direction he isn't ready to take yet. I would particularly like it if we could find cloth versions. We were a cloth diapering family for our youngest 3 monkeys and it is so much more sustainable and affordable. Then again, I've never had to work with adult sizes so....
For his entire life, Mon Amour has opted to sit for all bathroom functions unless things are crowded in a public restroom and a urinal is the only option. As a girl and one of the youngest in the family, I cleaned the toilets in my home countless times. I have 6 brothers. 😱 I don't care what society says about a man who always sits to do his business, but I have counted my husband as the kindest, most respectful man there is for understanding why sitting is always the best option! So a positive in all of this is that when standing for restroom business was no longer safe with his balance issues, it didn't take away from his "dignity" or "autonomy." It didn't even need an adjustment, except for the previously mentioned crowded public restroom.
Because he moves slowly out of ability, necessity, and safety, he has found it is generally best to head to the restroom as soon as he has an inkling of any kind. He also goes when opportunity presents itself before we embark on something (a drive, church meeting, etc) which, as we have taught the kids via Bluey, is a Tactical Wee. It has managed most of the mobility + restroom needs pretty well. But there are still occasions he doesn't make it in time, especially if a bowel movement is involved. We spent several months thinking it was possibly from something he ate. But it was happening regularly with no rhyme or reason. We don't have an exact answer, but both of us suspect that either GSS or CA has affected that. He does his best to clean up the effects of that on his own, though it would go faster and be cleaner if he would involve me more with that.
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Those are a few that have been on my mind lately that can upend the dynamic of trying to be spouse-spouse. I think in my younger days I figured one day if I married that I might end up with caregiver responsibilities once we were both quite old and our bodies naturally started to decline. I figured it would be a sweet privilege after so many decades together. I have learned from many of my more elderly friends that that is not the case. In some ways it is harder because watching the decline hurts more. Or because you yourself are older and not able to help as much in the way needed. I'm sure there are other ways that it does not feel like a sweet privilege. But the decades they had together makes a difference in knowing their spouse as well as other responsibilities. I haven't even known my husband for a full decade, yet. There are still so many things I'm learning about him. And we are in the extremely changeable part of life in being parents to little children. I am dealing with so much of NOT knowing how to be a parent. I'm still figuring out so much of how to be a wife, particularly a wife to Mon Amour. I have extremely little to fall back on in support and reassurance of my place and abilities in our marriage and our family. Add on figuring out life with a rare terminal illness that not much of the world knows about--including the very few who have the disease.
I have no idea how to navigate. I'm completely relying on my Savior at the moment. And my only answer: Just Keep Going (but take the breaks where needed). This hymn comes to mind:
1 Jesus, Savior, pilot me
over life's tempestuous sea:
unknown waves before me roll,
hiding rocks and treach'rous shoal.
Chart and compass come from Thee:
Jesus, Savior, pilot me.
2 As a mother stills her child,
Thou canst hush the ocean wild;
boist'rous waves obey Thy will
when Thou say'st to them, "Be still!"
Wondrous Sov'reign of the sea,
Jesus, Savior, pilot me.
3 When at last I near the shore,
and the fearful breakers roar
'twixt me and the peaceful rest,
then, while leaning on Thy breast,
may I hear Thee say to me,
"Fear not, I will pilot thee."
by Edward Hopper
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