Navigating My Roles

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.

*******

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

The Holidays 2025: A Verbose Account of More than Just the Holidays

I have a love-hate relationship with social media, as I do with pretty much most technology. Social media has plenty of negative aspects to it, but also some good. Some times I want to rid myself of all social media usage. But several years of isolation showed me that was my news source from many friends and family. We lead busy lives, and if anyone is like me, I don't generally like having to repeat myself over and over about things. Posting in one place where others may see and choose to read feels like giving the updates many ask for without bothering them or taking up much time on their or my side. 

I have noticed over the last several months I have posted less. This makes me happy as well as sad. I've spent years telling myself I should post less for privacy's sake and for the wondering reality of "how many people actually care what I say?" But I also enjoy posting/sharing/writing/processing/venting/finding the silver lining. Even when it was just single ol' me, I liked to share what goings-on I involved myself in and various thought processes as I grew in life's daily grind. My hands protested too much hand-written journaling, so blogs and social media became that outlet. 

I gain much from my personal writing, and it is the main reason I do it. I know there are some loved ones out there who like to know what I post, and I appreciate that. Some times I make a post with them in mind. And then there are the rest who don't necessarily seek out what I write, but read it occasionally and are kept informed and still supportive of me. Honestly, I think that's how most of us use social media and I don't find that a bad thing. We all have hundreds of loved ones and acquaintances and many of us like to touch base in spite of not always having the time to do so in the "old-fashioned" ways. And that's one main reason why I don't completely forsake social media.

So, it's mainly for me, but I know there are others who read when they choose. And that latter part has kept me more quiet of late even though I want to write so much. Part of why I created this blog was so I could have that writing outlet. I know not many read my blogs, and I'm absolutely ok with that. I want to share if they want to know, but at least it won't come up on a feed and cause them concern. Because if I shared on social media everything that came across my mind to share as I process everything in my life, I fear I would raise a lot of concerns. I can't always find the Pollyanna silver-lining as easily these days. I'm not depressed, but I suffer from some depressing things. And while I'm usually doing well and pressing forward, some times I'm not. Those are the times I most want to write down, because that has always been my best way of processing since I first began regular journaling when I was 10. I'm not a fan of toxic positivity. I need to have my negative emotions as much as the positive. But I don't need others to be worried.

There are hundreds of people who send us positive words, hopes, and vibes. Who pray for us. Who serve us with their time and skills. Who have given to us financially or materially. We have been so, so blessed by so, so many. I don't want to ever take all of that love, kindness, and support for granted. I don't want to sound ungrateful. But I also don't want to sound like a beggar, needing others pity or help no matter how much I need it. It's not that I don't receive service and gifts well. It's that I feel undeserving of so much when so many others need help, too. When I am a capable adult who needs to learn how to cope now because this is how my life is going to be for an unforeseen but definitely lengthy amount of time.

So in all that, I didn't post much about our holidays. Embarrassment? Shame? Privacy? Scared for people to know the full truth of our situation? I don't know. Still processing it. Every time I wanted to post, I couldn't. But I still want to write about it. So, I'm writing here.

2025 schedule meant Monkeys 1 and 2 would spend Thanksgiving with us and Christmas with their mother. Ever since they moved out-of-state and this schedule was put in place, Mon Amour and I decided we would always have 2 Christmas celebrations in our home. In the years when Monkeys 1 and 2 come for Christmas break, we have "Christmas Eve" the night they arrive and open presents on their first morning with us. It enables the family to have the entire break to enjoy the gifts we received (usually food). It gives the rest of the break a low-stress atmosphere where we can focus on our family and the Reason for the Season. On actual Christmas, we open neighbor and family gifts we have been receiving. It gives Monkeys 3-5 a sense of a "2nd Christmas," and takes away any upset feelings because their older siblings constantly talk about their 2nd Christmas that they had/will have at their other home.

On Thanksgiving-scheduled years, we have Thanks-Christmas-Giving where our main Christmas celebration happens during that short break. It becomes a very full week because a family birthday is usually in that week, too. Majority of the presents are that week. Then I get to enjoy a low-stress December as the big Christmas things are already done. Again we can focus on our family and the true Reason for the Season. On Christmas in those years, we still try to keep some of our traditions like Presents (Promises) to our Savior, favorite Christmas shows while sleeping by the tree, and Charcuterie for dinner (which we don't do at Thanksgiving because, well, Thanksgiving). I might do stockings a 2nd time with a couple of small things, and maybe 1 wrapped gift for each child. And there are the neighbor and family gifts. Again, a "2nd Christmas" for the youngers because they know that their older siblings will be calling to talk about all the things they got at their other house. We know it's now about things, but for little children that can still be hard to see their home get so little while their siblings in their other home get so much. We are more about experiences and traditions than stuff. And it helps us teach them more about the Reason for the Season (which is the birth of our Savior, if you didn't know that's whom our family celebrates). So, that's the long explanation of how our family handles the holidays as a young, blended family. 

Thanksgiving 2025 was approaching after Halloween 2025. Funny how that always happens. After the year we'd had, I did not feel up to hosting a Thanksgiving meal let alone 3 holiday celebrations. And as much as I get along with Mon Amour's side of the family, I really wanted to be with mine. I longed for familiarity and simpleness that came from childhood memories and associations. And nothing could bring that more than Thanksgiving with my parents. I'm so grateful they agreed to have us, and that my mom went all out with her amazing meal. She isn't a fan of cooking, but she is so good at it. In their retirement years, my dad has enjoyed taking up the majority of the cooking tasks and my mom has enjoyed her well-deserved break after several decades of cooking for my family as well as her growing-up family. Her working so hard on that meal was one of the greatest gifts I could have after this past year. She also unexpectedly gave each of us our own nativity Christmas ornaments and that was a sweet surprise.

Monkeys 1 and 2 were with us, and we played so much Nintendo as a family that it probably wasn't healthy but was great for the memories. We got to experience the Giving Machines for the first time, which was really special. And we had Christmas morning. 

Christmas 2025 was not going to be big. We couldn't afford it. I was able to get 3 inexpensive things for each child's stocking. I got mini boxes of cereal to keep our tradition of our own cereal. And I got each person in the family their own book, something my librarian-self has always had much pleasure (and thought) in. This was an extremely "doable" Christmas considering I had to pack it all with me to my parents' home, and I didn't want to make a mess there that would annoy or inconvenience my parents who were already being so generous. It made a very nice reason but also excuse. Because if Christmas had been in our own home, that's all they would have gotten anyway. We can't afford 5-7 regular boxes/bags of cereal. And we can't afford full stockings even if every year we have always gotten stocking stuffs from Dollar Tree. We couldn't afford taking each child to Dollar Tree to pick out a gift for each family member. Gracious, I cried for an hour after buying the books from the bookstore and at least 3 times almost went back to return them. They cost so much! Christmas isn't about the gifts. But as a mother who loves to consider what to get for each one of my children, the joy of giving was tainted this year because of medical bills, disability overpayments, and trying to figure out how to meet basic needs. 

I often feel I am living so much of my life backwards. I had a house before I had a family. I have young children while friends my age are seeing their children go to college and get married. I have friends in their 70s and 80s becoming spousal caregivers or entering widow(er)-hood, while I'm doing so in my 40s. I grew up with the example of a family's finances starting out meagerly as the couple was establishing their family and career, and that things would improve as time went on. But we started off doing well and slowly over time have gotten worse financially and in our ability to provide. My kids have gotten spoiled from too many "eating outs" (90% of those were delivery since we lived in isolation), because the only way I could deal with the stress of isolation was not having to cook (something I unexpectedly grew to hate). Now I have to explain that no we can't stop by to grab a kids meal or just some fries. That we shouldn't have been doing it as much as we had (seriously--So. Much. WASTED. Money. Even if for a small part of my sanity). 

Please don't get me wrong. Outside of ridiculous food ordering from our 5 or 6 favorite food places over the last 6 years, we aren't an extravagant family. Monkeys 3-5 wore hand-me-downs the first 3-4 years of their lives. When they grew/grow too big for what has been given us, we buy everything else but underwear and socks from thrift stores. I have held on to Monkey #1's clothes for 6 years waiting for her sister who can now fit them. Is she also wearing her older brother's hand-me-downs? Yes. Did my 2 boys as infants wear pink winter coats and a pink snow suit because that's what we were given for their sister? Yes. Have we worn shoes till the soles are half off? Yes. Am I still wearing clothes from college, high school, and even junior high? If they fit, yes. My towels are the towels I grew up with as a child that my mom passed on to me. Many of my socks have holes in the heels. I have put my out-of-shape body more out-of-shape by doing so much of our DIY yard on my own because it saves money. I keep my house at 62 degrees in the winter and 80-85 in the summer because it saves money. Many of our toys are from our buy nothing group, or really cheap on Marketplace, or gifts from others. Sooooo many other things that our family does to not go crazy spending money so we can spend that money on the needed things and the occasional frivolous thing like souvenirs on a vacation or a brand new toy or book for a birthday. This was how we had to live after my income ended so I could stay home. Probably should have been more thrifty, but during new baby years I didn't keep track of the finances and more was spent than should have been. We were never destitute, but we didn't have as much in savings as I would prefer. Then 2024 brought a decrease in income and an increase in medical things. 

All that long-winded, TMI tangent is to say that Christmas 2025 of necessity had to be small. Christmas 2024 was actually meant to be a small one, too. Usually everyone receives a book from me, a main present, small presents from siblings, a full stocking, and their own foods (cereal, crackers, chips, soda). In 2024, I shopped every bargain aisle I could find for stockings, books, and foods for several weeks before Christmas to keep in our budget. We were going to forego the main present for each child except the baby (who accidentally ended up with 3 toys I got for a bargain on Marketplace). But someone must have put us on some Sub for Santa-like list, because we were unexpectedly gifted a few things that made the Christmas the largest one our family had ever had. I was so grateful for the generosity and thoughtfulness, but even then I was feeling deflated knowing that Christmas 2025 was going to look very meager after that. We would have our little Thanks-Christmas-Giving, and that was it. No full stockings, no charcuterie, no personal foods, no presents from siblings (that one really hurt).

I had prepped Monkeys 3-5 for several months that Christmas would be small and that was ok. That we would watch lots of Christmas movies together and go find our free adventures like we usually do. 

That Christmas would be peaceful, focused on family and the Savior. As it should be. They were perfectly fine with that. There was no whining or begging, not even wishing (especially after hearing their older siblings talk about the wish lists they made at their other house). They were happy with the family time and that meant a lot. But I as a mother couldn't help but feel like a failure. I know I'm not. But that's what was happening.

Just before Thanksgiving, our very dear family friend who has been through "all the things" with me and us these last few years asked if she could provide a Christmas on actual Christmas for us. I thought it might be stocking stuffers and a present for each child--pretty much what one of 2nd Christmases would usually look like. I agreed. And while I missed not thinking out and planning Christmas for my family as I usually have, I also realized for the first time that even our small Christmases could be a bit stressful for me to execute. I was given the gift of a NO-stress Christmas which I never knew I needed. Plus there was the excitement that I had no idea what anyone was going to receive, including myself! This has not happened in almost 20 years.

As we spent the holiday season between Thanksgiving and Christmas watching dozens of Christmas shows and movies, we enjoyed an easy time together. Hardly any arguing. Lots of laughter. Lots of resting. No doctor appointments. Very few falls. Relaxation upon relaxation. It was heavenly peace, truly. Then a lady from church gave my kids gingerbread kits to do--something we've never done before and had a blast with.

 Then I had the idea that even though we couldn't do neighbor gifts like previous years, we could make our own Christmas cards for the neighbors. The kids enjoyed using our craft supplies and then handing the cards out. 

Then 3 anonymous gifts were left at our door among our sweet neighbor and family gifts. These anonymous gifts enabled us to pay some medical bills and renew a family pass to a venue we have come to love from a Christmas present last year but were sure we would have to let go.

On Christmas Eve, our own personal Santa came with her elves to deliver Christmas to us. And did she deliver! Her whole family had ended up jumping in to help out. They gave us overflowing stockings, the foods as per our traditions and then-some, several presents, and even the Charcuterie. 

I thought last Christmas was big by our standards. This Christmas was astounding. They were so incredibly kind and generous, and our Santa-friend planned the whole thing out. She told me that she really enjoyed being able to plan it all (I completely understand that feeling). It was uplifting and humbling. It was a joy to see what everyone received because it was as much a surprise to me as it was them. 

And even more so where it came to my presents. It took several years before my husband noticed there was nothing in my stocking, or that I only opened one or two presents and they were usually what I had gotten for myself. He took more initiative after that, but I will be honest that over time he has become so-so when it comes to giving presents. (I chalk it up to the declining health, honestly.). 

*Side Note: Last year I told him my present to him and his present to me was that I was going to give a concert for him. It took almost 11 months, but in early November I sang a slew of Broadway songs for him as I stood on the church stage in my old college choir dress. The concert was full of flaws and wasn't as elaborate or practiced as I would have liked. But I had the joy of singing/performing, and he had the joy of listening/watching (because he really does like to--I didn't force that!)*

Having an entire stocking plus several presents was something I hadn't experienced since living at home with my parents. It was unexpected, joyful, and fun. And seeing my husband and Monkeys 3-5 experience the same just had me overflowing in all the good emotions. 

It's not in the gifts. It's not in the receiving although that was pretty amazing. It was the love and thoughtfulness from so many others. I didn't want the holidays to go by without me writing down about the generosity of others that made this one of the most special Christmases. There were times I didn't want to bother with the tree or other little Christmas traditions. But I knew it was important to our children to continue making joyful Christmas memories while their father is with us, to hold us through in future Christmases when we will miss him being a physical part of our celebrations. The youngest may not remember it much. But I believe Monkeys 3 and 4 will remember this Christmas that was made possible by so many others, especially our personal Santa and her elves. 

Oh--and what did we do from Christmas through New Year's? Aside from enjoying our Charcuterie for 5 meals? And daily drinking my husband's favorite Wassail? And eating so many different snack foods whenever we felt like eating and Mum didn't have to cook? We watched Doctor Who. Lots and lots of Who. Several Christmas specials plus 3.5 seasons! It was glorious. We all loved it. The youngest has been flying toy Tardises around ever since. All 3 kids have been playing various pretend games that involve Whovian villains. Each one keeps saying they want to be the Doctor for Halloween. Mon Amour and I talk about our first experiences with those episodes and what they mean to us now. We're Whovian nerds and proud of it.