Holy potato balls

It’s 2021. April. How does the time keep passing so damn quickly?

We’re getting older and our perception is that time speeds up the older you get. (I can hear my father telling me that. Repeatedly.)

But still.

I see that I have not posted here since 2019. Pre pandemic. Post losing both of my parents and ex-spouse.

I’ve been referring to 2020 as the year that wasn’t. That’s what it felt like. A year that didn’t really happen. But it did.

We’re still here. Doing our thing. The dude’s dementia is doing its thing. Slowly but surely.

That’s the good news – the slowly part. He weathered the pandemic pretty well because his world has already been shrinking.

He’s shrinking. His last doctor appointment, his height is 5’3″. He used to be 5’10”.

It’s been 10 years since diagnosis, 21 years since the weird behavior started.

Crazy.

“Savor every moment.” That’s been my mantra, my watch words, my motto. Whether its dementia, a pandemic, just whatever, find the joy in the moment.

I did find a bit too much joy this last year in food and playing Animal Crossing so that my pre-pandemic clothes don’t fit too well. I’m trying to shift that kind of joy into moving my body more and ‘consuming’ more art and art activities. Or at least find more balance between the sedentary and active pursuits.

Those weeds won’t pull themselves, whether they are on my (Animal Crossing) island or in my actual yard.

Dammit.

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Some quality reading

Happy soon-to-be holiday season! Goodness, time keeps passing.

It’s hard for me to post more often. My days are full of responsibilities. For my dude, for the family, for work. Not much time for “me” these days – I have to schedule that and there’s not much time right now.

I did carve out an amazing two week respite super-vacation for myself last summer. I almost felt like myself on my way home – I had quality sleep, I got to relax, I got to do what I wanted to do in the moment. I got to go somewhere I’ve always wanted to go. Pretty amazing. Many thanks and gratitude to those who made that possible.

A friend posted an article on Frontotemporal Dementia, published in the NY Times. They have a low threshold on how many articles you can read before you have to subscribe but it’s worth a read.

“Is he dead yet?”

OMG has it been 2 and a half years since I posted? It doesn’t seem like it to me.

But then again, it’s been a whirlwind. and a quiet time. At the same time.

Both my parents passed since I’ve been here. That’s the main reason I’ve been away. My ex-spouse also passed. I wasn’t present at that passing as I was for my parents, but it still had an impact. My words were absent as my energies were used fully for coping with so many losses and getting the daily tasks done. Including working towards settling my parents’ affairs.

It’s such a major change to daily life when people disappear. Even if you’re expecting it.

The quote in the title of this blog is what fueled me to come back.

At work today, someone came who has been away a year or two. They knew my dude when he worked here.

They saw me and said something like, “Oh, has [he] passed? Has he passed yet?”

I heard it more as the phrase that I used for the title. A person stood next to them, who doesn’t know me well, stone-faced, no reaction. I looked at them both, from one to the other, back again, as I said, No….” After a sec, I continued with, “He’s still plugging away, living life, he’s like the energizer bunny,” Which is true.

That question goes on the list of What Not to Ask, to not only a caregiver-spouse but also anyone who has someone with an illness in their life. Or just anyone. Ever.

I spent the afternoon giggling about it.

Pepper for the Coffee

The gaps are getting gapier. Gap-ier. Holes, gaps. Spaces between the spaces. Spending time with my dude, one on one, you notice the gaps. If people are around and there’s too much going on, he recedes from view. Or he covers with stories.. Although even the stories are getting gappy, holey, filled with spaces.

At a cafe for breakfast, he reaches for the cream to add to his coffee, but he picks up the pepper instead – and doesn’t notice that it’s not what he thought it was, even while looking at it. A friend grabs his hand just before he shakes it into his coffee. “No, I don’t think that’s what you want,” our friend says. My guy is oblivious in that moment. He takes the cream the friend offers and pours it into his cup.

My co-pilot says that everyday is wacky, some wackier, wacky is our new normal. He accosts people when they’re out in public, saying whatever he wants in that moment to that person he sees but does not know. Some of these things are not what he used to say to people. The co-pilot has had to intervene and apologize, physically moving him aside and out.

It’s been a hard summer-fall. I’m not sleeping (as usual) as he makes weird sounds and gets up fairly often. We’ve both been sick a lot – me more than him. I’d guess it’s the lack of sound sleep and a work schedule that’s been intense – and, of course, the stress level I live with daily.

All our health care support team members tell me I should have placed him by now. My personal health care team tell me my body is starting to show signs of too much prolonged stress and that I need to get space to sleep without interruption and ease the daily stress.

We don’t see his doctor as often as they want us to – each visit consists of questions and documenting his progression, tell him he’s fine, take me aside to ask if I’m safe, see if his meds should be adjusted, and suggest I should place him. Then, oh, yes, come back in six months so we can do that again.

So much is not known about fronto-temporal dementia (FTD), there’s nothing the medical establishment can do that they haven’t already done. More research needed! (As I’ve mentioned here before.)

I was going to post when we got to 5 years, last month, of writing this blog. But things were too busy and I was under the weather most of October and November. Five years past diagnosis, I’m exhausted. Not as deeply depressed as I was for the first 4 years or so – thanks to magical meds – but I am functioning and holding things together as best anyone could in this situation.

But, here we are, heading into the holiday season. A little of the weight on my shoulders has lifted as my job has starting wrapping up for the year. Whew…

Time to find some joy and encourage everyone to care for each other.

Time flies when dementia is in the room

Wow – I haven’t posted since April?! It doesn’t seem that long. I thought about a month of maybe two had gone by. I’ve got some catching up to do!

Summer came and went, duh. I worked a lot this summer, not in classes, but at home, to move my classes to a new online system. It was a major pain and took way too much time from my ‘me’ time that summer can offer. Boohoo.

He’s doing ok, just fine if you ask him. He had some trips with family and friends – one at a time. I had my usual sinus infection, aka, spend a week reseting and watching old movies. If I don’t rest, my body makes sure I do…

We have two new kittens, whom we both love. He was resistant until it was clear that I would clean the litter box – then it was fine, just fine. The house has new life in it now, which gives me comfort. I have two little beings who greet me when I come home and follow me around as I do what I do. They do not like the coffee grinder, washing machine, or vacuum noises, but everything else is a playground.

I had a 24 hour, maybe a 30 hour getaway at a beachside hotel which was wonderful but way too short. Having that kind of time is amazing – to do whatever, away from home – but it makes coming home difficult.

I haven’t been anywhere, travel wise, in quite awhile and I’ve been feeling the call to do so. That’s not going to happen soon, however, due to his needs and our budget. So when I feel that, I think that I should at least make a plan for where to go and how. But then I just go do more laundry or wash some dishes. I should probably clean some windows soon – they’re filthy!

The ‘usual’ suits him just fine, lunches, movies, short walks. In my last post, I had written that his dementia was progressing – and that is still true. Yet he doesn’t notice. Those who don’t spend more than 24 hours with just him often don’t notice too much of it either. This is how it works.

The caregiver/spouse with whom he lives (and has lived with for decades) notices things first. Then, when they are more outward behaviors or persist more regularly, others who are often here notice. Other caregivers report that this is not uncommon.

Former co-workers or others who don’t see him often may not notice too much besides his increasingly different bearing, gait, and posture.

But, hey, it’s not what you notice – it’s how we retain and maintain our relationships. And care for each other. His former co-workers ask me all the time how he’s doing and to say hello to him.

In the early stages of this caregiving path, I felt like I needed a lot of validation that what I was seeing was happening. In trying to get past the denial phase, since I could no longer linger there, I needed some external validation that I wasn’t seeing something that wasn’t there. It’s hard to get that since many people want to say everything is fine, especially in the beginning.

When people said that, it just made me feel terrible. Why? I think they wanted to tell me everything was fine, perhaps with the intent to make me feel better, at least I think so – although the effect was probably to help themselves feel better, to reassure themselves that even though such a thing was happening to this much-loved man, things looked “fine” on the surface. Especially since it’s clear his memory is ok – people expect to see what Alzheimer’s disease does but his type of dementia doesn’t look like that.

Nobody wants to see someone they love decline in this way. Myself included. Although I have not had the luxury of ignoring it, especially the further down the rabbit hole we go.

At this point, five years past diagnosis and about sixteen years into the chaos of having my spouse lose himself piece by piece, I have some validation – from my co-pilots, my daily (M-Th) helpers, and from some others who are now able to acknowledge “it”… If others still say, “he’s fine”, I just roll on, it no longer reflects back to question my sense of things. They’ll see it when they see it, even if that’s not at all.

I haven’t posted in awhile because life is just so complicated. Being a spouse/caregiver, (actually caregiver/spouse makes more sense – the caregiver role is primary) it falls on me to take care of everything in the household, work, and manage the needs of dementia.

I’ve been busy not reflecting, just doing, and trying to find some spaces in which to remind myself who I am. When he’s out with others on an adventure and I have some quiet space at home, it often takes awhile to figure out what to do. I find myself doing housework and then wondering why I didn’t do some fiber art or make something fun.

Keeping everything going has been a challenge lately since our co-pilot provider agency has not been effective in sending our invoices to our insurance company. Thus they charge my credit card but I do not receive timely reimbursement. This started during the summer, which is when I do not get a paycheck.

This, as you may imagine, is a problem. It’s hard to pay ongoing bills when the budget relies on these reimbursements coming in – in time to avoid interest charges.

After many phone calls to both entities, both of whom said it was the other causing the problem, it is clear that it is the agency providing my co-pilots, not the national insurance company, that is responsible for the glitches. We thought we had it straightened out when I got one payment (for four invoices)… Then, wham! No more payments again. After going back and forth a bit, and six invoices later, I noticed that the paperwork person was not sending them to the right address – there was a typo in the insurance email address.

I had to figure this out? Grrr.. I am so glad we bought that long-term care insurance so many years ago, but geez, do I have to do the work of a case manager too?! Grrrrrrr….

Changing agencies isn’t an option since our main co-pilot, who has been with us from the beginning and who lives down the street, only works for this one agency. We’d risk losing her and her continuity is one key to his state of being.

So, we soldier on. I baked some sourdough bread this weekend.

The Times, They Are a Changin’

While Bob Dylan meant social change as a call to action in his anthem, The Times They Are a Changing, the phrase invokes for me meaning about how our reality is continually changing no matter what we do. Dementia is having its way with him and with me.

His progression has intensified the last few months. I felt it during that time but it’s been abundantly clear in the last few weeks that things are really changing. He’s much more fuzzy, much less able to make decisions that make any sense, the filter and sense of humor are mostly gone most of the time.

His sense of humor is also pretty much gone. That was always a big part of our relationship and I miss its absence. If I forget that and say something he would have found humorous before, he doesn’t understand it and either ignores it, walks away, or questions me about it. What does that mean? What do you mean by that? What?

The progression is speeding up and not coming and going as much as it did before. His gait is slower and stilted and other physical changes have been more apparent.

I’ve done my research, as all the advice suggested, on finding a place for him to live when it’s not safe or reasonable to have him at home, should that time come. As I’ve mentioned before, I have found a place, nearby so I can visit often, all memory care so that his care will not be an add-on to the more privileged assisted living spaces, lovely with great outdoor spaces, expensive but not insane since we have insurance to cover much of it. Hoping we’ll not need it but I can check that item off my list of dementia care to-do’s.

All the assisted living places with memory care available were terrible! The assisted living spaces were nice but the memory care units were warehouses and felt like hospitals. The facilities dedicated just to memory care feel more like communities even though the door is locked and controlled.

When I took the tour, she asked me when we might make the move. My response, something like I have no idea, when it’s no longer safe for both of us for him to stay home. She mentions that it’s a good idea not to wait until crisis period and that once he moves in, I can go back to being a wife and not a caregiver. When I hang out with him, I won’t have to worry about his meds, his hygienic supplies, his wandering into danger.

That phrase has stuck with me and I still have no idea what it means. My spouse has not here for some time even as his body and some piece of him is in there still. I  love him and I care for him but I’ve been a caregiving spouse so long, I’m not sure what “just a spouse” would look like at this stage. I’ll figure it out, it’s just an inscrutable puzzle for me right now since I am still the primary caregiver and I’m exhausted.

With the things happening lately, the time for a living space change might be sooner rather than later.

He tells me the other day that the night before, he took his telescope outside to see the moon. That’s fine, he’s done that before.

But this time, he took it into the front sidewalk, around eleven/midnight. Er, that’s not a good idea.

And that a neighbor (who has a heroin “problem”) came out to chat and that they had a great chat about all sorts of things. Uh, I’m asleep while this is all happening. I am not okay with this.

He see nothing wrong, of course, since the filter is not intact anymore. While our neighbor is not a bad kid, he’s a heroin addict and has many friends who are as well and I do not want a nightly visit from him or them. My guy could very well have invited them in to show them his stuff, which he does with everyone. We already had an incident that set me off kilter and feeling unsafe in my own home and I refuse to do that again. (The incident linked above didn’t mention it but it involved some very personal violent threats focused directly at me.)

So, I’m thinking, do I now need 24/7 co-pilot/caregiver help? He could very well wander out to walk around the block or further. He could bring anyone home. Which are the very reasons I have to have someone with him when I am not – so that his interaction with strangers can be limited and monitored.

His trips down to the city with our primo co-pilot are now filled with her steering him in the right direction since every turn he wants to do is not in the right direction. They wander all through downtown – because she has been with us so long and was with him when he knew where they were going, she can direct him to the right place. She mentioned that on Monday’s trip, he didn’t get anything right and was really lost.

So – he’s getting lost now in places he’s known for 60 years and his decisions are getting more random and problematic. Ummmmm…

Financially, I can’t afford 24/7 care at home – I priced it out, the insurance won’t pay most of it and I can’t swing that. Paid at $20 an hour, for the co-pilots without degrees, 24 hours care is $480, for a 30 days month is $14,400. $14,400 a month. Our long term care insurance will pay around $4,000 a month for in-home care. I do not have an extra 10 grand laying around to pay each month.

With the hours I now schedule, covering my work hours and an extra few hours every now and then so I can do something by myself (without him) that isn’t work, we’re already close to that $4k cap. We’re up to about $900 a week for our co-pilots.

If (when?) he moves into this lovely place where he can’t wander or potentially invite drug addicts into his home, I can then scale our home budget way back to afford what I’d have to pay over the insurance. I can sell the extra car and scale down our other expenses significantly. I can eat at the place with him for no extra cost so food expenses would dwindle. I’d be there every day anyway to hang out and help it feel as familiar as possible.

It will be a challenge but I could possibly handle $3k a month above the insurance if I scale everything back. Can’t do the $10k. I’m so glad we got that insurance because it’s saving my life right now by lightening up the financial stresses.

Once there, he can be checked out to go do things like meals out and such so he’ll not be a prisoner by any means. The facility is one where I went to a support group when all this started thus I have already seen how the staff interact with the residents. It’s the best situation I’ve seen and I’ve toured (and worked in) quite a few facilities of this type.

The experts all say that moving is best done before they are totally out of it so that at least some familiarity can happen with the surroundings and people. Since my guy is so social, he’d could enjoy it since there are plenty of people there to talk to. They have some lucid people with his type of dementia or who are in the early stages of other types of dementia.

The process will be a nightmare, I imagine. I hope I’ll have plenty of support (and an absence of the opposite) when the time comes.

He’s not ready since he’s sure he’s going to live into his 90s and keep doing everything forever. Before he had dementia, when his dad had it, he did say, “Hey, if I get it, put me in a place, I’ll love it!” He was imagining a captive audience to talk to at that time. That pre-dementia pre-approval of doing this will not be remembered, of course.

I’m not ready since it’s such a huge change. Although it would be nice to sleep – and possibly sleep well – and be rested when I go to work or anywhere.

And be a spouse again rather than a caregiver, if I can figure out what that means.

Passing On Judgement

My first roommate ever had the same name as a famous movie start and I learned an important lesson from her. Not about her experiences having the same name as a famous person, but about not judging people.

In our many discussions while in our room, away from work and off duty (we were in the Air Force), she made excellent points about how each person has their own experiences and background and that no one outside a person has the right to judge that person. She held that practice so close to her heart and it made so much sense that I have taken it on as my own since that time. It’s not always easy but it is so important. No matter what we think of what someone is doing or whom they appear to be, it’s important to let them be themselves, living their own lives. Whatever they do, they do it for their own reasons and that’s their business.

This experience of mine, at a mere 18 years old also leads me to try to accept people for who they are, some call it unconditional love. I’m better at that than not judging but both are important to me thus I strive to practice both. 

I’ve been reminded of my short relationship with Betty Davis recently as I see how people judge my dude when we’re out in public – or others who may not understand why we are living our lives as we now are or why I behave the way I do.

My relationship with Betty was short-lived as she was on her way out of the service as I was just coming in. Some people said things about her to me, about how could I live with her when she’s so dishonest and weird. I soon found out why people thought those things about her. She was married, her spouse was back home, and she had a boyfriend here at the base. That’s all most people knew about her. There were a few men who were married and whose spouses were not yet with them and who had, shall we say, active dating lives. But she was a woman, it was the 1970’s and we were in the military. Double standard, anyone? But she also had leukemia at an advanced stage. Her spouse was an abuser who was about to get full custody of her children when she died, which was coming soon. So, yes, she had a boyfriend, he made her very happy even as her health deteriorated. He knew about her whole situation and accepted her for who she was even as they met too late to make a life together. If Nicholas Sparks needs more material, here is a real life story that would make a tear jerker of a book & movie. She also had a lawyer working on different custody agreements so that her children would not be raised by their abusive dad but it wasn’t looking good since he had more financial resources and live din the same town as her kids (who lived with her mother at that time).

The week before she went home, I came home from work, saw her collapsed in a pool of blood in our bathroom and called the paramedics who took her to the hospital. Those who lived around us in the barracks mumbled all sorts of things about deserving it and such. But I knew why she really did what she did and it was no business of theirs. I don’t know how all that ended but I hope her kids are ok.

I’d rather not give specific examples of how I feel judged or how I think people are judging my guy since it’s counterproductive. We’ve always had the goal of living on the positive side – it’s less energy and much more fun than being judge and jury and worrying about what other people are doing. We accept things as they come, including people as they are. That was one of the things that brought us together and made us so compatible.

We are trying to live life as best we can, as dementia travels our path with us. It is so much more difficult to not get bogged down into the depths of despair (life sucks), complete self-centeredness (why us?), and judgement (those people are…).

My guy is more and more foggy so our activities scale down as needed. He doesn’t always understand what’s being said, especially when a lot of people are around, and thus two-way effective communication is not always possible. Thus when we’re interacting and trying to get something done, either I take over (which  may be perceived as controlling) or we discuss it (which looks like arguing because I use a lot of paraphrasing and repetition to make sure he understands, if he can in that moment.)

When I’m overwhelmed due to everything that’s going on in our life, I get more depressed and ultimately behave somewhat oddly as I try to find ways to cope and keep on keeping on. I may not interact as I used to or as expected… but I’m doing the best that I can.

In both these situations, he and I both may be a bit weird or annoying to be around but it is so important that we get out and about. That way, I can be around people who are functioning well (or at least, perhaps, better than me) which helps me feel more “normal”. It’s good for him so he doesn’t feel isolated.

We both like our alone time – and our alone time together – but social time with others is so important for being fully human.

Feeling supported is what we both need. Through this journey, I’ve become so aware of who we can depend on and who, for whatever reason of their own, we cannot. I’m focusing my energies on those who are able to keep us in their circle and not so much on those from whom we do not hear anymore. I figure, it’s their own issue. They may be out of our loop for so may reasons, none of which really have to do with anything we did. Perhaps they have trouble interacting with illness or dementia, perhaps they think we’re now too weird or uncomfortable to be around,  perhaps they are just busy. Whatever it is, it is their thing, not mine or ours.

We’re planning a day trip out to see wildflowers blooming. He’s got his usual social week of lunches and hanging out with our co-pilots. Speaking of which – one of our two co-pilots, about whom I was expressing gratitude in my last post, has given notice. She got a better job (more $$, room for advancement) so we’re very happy for her but so sad to lose her.

Foggy Days and Gratitude

It’s been an interesting year so far..

My guy is getting foggier. Today, for example, he is pretty foggy even as it’s a beautiful sunny day outside. So much so that my co-pilot texted me before I got home that the dude was foggier than usual (her words). They rarely text me, unless things have progressed in a surprising way or there’s a problem. They know that when I’m out, I need to be ‘out’ and not focused on what goes on here.

We were both big stress balls earlier in the year. Things straightened out a bit and I feel much more relaxed. Getting a massage, as I did in January and again yesterday, might have helped that happen. But while I feel better (as much as I can tell-I’m a terrible judge of my own status), he’s foggy, foggy, foggy.

The good news is that he doesn’t know he’s foggy. He’s still happy as a bird. Unless he’s not. Those difficult moments have been more plentiful lately. More manic periods, in which on some level, he feels has to get some stuff done! NOW!

Since the progression of the dementia seems to be speeding up, no long plateaus anymore, I have been trying to be more mindful of how well he’s doing when he’s doing well. And to appreciate just how long he’s been functioning so well and that we’ve had so much time to keep living life together, even as the dementia started taking hold of him.

His support group leaders remark that he’s doing so well – all of those who started with him have moved out of the group. Those whose progression takes them to the place where they cannot interact effectively must leave this particular group – and they haven’t yet asked him (or me) to stop coming. His doctor also remarks at how well he’s doing when we do our visits.

I’ve glad to realize that he does so much better one-on-one or with a very small group of well known people. While it’s great to be with family and friends – especially for me – he struggles with it. He does love an audience but his turn-taking in conversations is non-existent. If too many people are around in his personal space, he tends to either shut down or talk constantly. Since I’ve seen this pattern, it’s easier to create situations where he’s able to communicate and enjoy people as best he can at this point.

I am so grateful that our two main co-pilots are still with us. We’ve not had much turnover, which is so rare for dementia caregiving. It’s been five years plus and we still have our first one – who is now pretty much a member of our family. And the second person I depend on has been with us three years or so and she is also part of the family. Yes, we’ve had a few people here and there when our main two couldn’t cover a shift – but these two cover the usual days we schedule and most of those extra days I add in as needed. That continuity has helped to keep the dude functioning as well as can be. He gets a little more fussy when new people come into the rotation.

It’s been such a beautiful day outside even as it’s pretty darn foggy at our house. I choose to be grateful for seeing such beauty and sunlight surrounding us even as it gets increasingly murky inside.

 

The Pacific Ocean, as seen from Pacific Palisades, CA. Noon, March 25, 2016

 

 

 

New Year Haiku

I exist. Here. Now.

In this moment with myself.

Not ever alone?

These last two haikus (above and here) emerged from my experience over the holiday season. It was all I had to say. All I had the energy to say.

Holidays are both the best and most challenging times for me during this journey with my spouse’s dementia.

He’s been doing pretty well, although once people left and the holidays were over, things went back to the usual up-days and down-days. Or hours. It seems to oscillate a lot more these days. Both our regular co-pilots confirm this for me – actually one of them first mentioned it to me.

The holidays remind me of what I have been losing and what is already lost. Slowly losing one’s spouse to dementia is a daily grind, of dealing with new behavioral changes in which something else in our relationship and his personhood disappears. Sometimes they do reappear, especially when it’s a new change, but eventually, they are gone.

I’ve been writing this blog for four years now although the dementia has been with us for longer than that. I’m exhausted – because there’s always some new challenge – but also regained some energy – since I’ve acclimated (of sorts), have more daily help, and claimed some space for my own self.

I have hopes for 2016. That we will continue to engage the dude in activities he enjoys. That he will continue to be oblivious to the real costs of his disease on me, the family, and our community (that is the one saving grace of dementia) . That I will continue to have more fun both with him and without him. That I will get back to ‘myself’ even as I am changing into a new person, as we all do, especially in stressful and challenging times.

Those, I think, are all potentially achievable hopes. I’ve never liked spending time making lists of ‘resolutions’ that cannot realistically be gained.

Happy Holidays (Haiku)

I feel. Yes, Deeply.

It may not be apparent

Always. But I do.

Happy New Year! May your year be full of joy, support, and good sleep.