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One Rare Bird

I know I’ve kept you waiting. I started a new job recently (I’ve traded my bus keys for an apron and am now a lunch lady at our kids’ school!) and have been adjusting to a new schedule that’s pretty much the opposite of what I’d been doing. So, you know, life. I thought maybe you would all like something more uplifting to read today than the election coverage so . . . here we are!

With relief, we finally received confirmation late last week that Keith’s tumor is benign. They called it a focal myositis. It’s very rare, especially in that area of the body, but generally resolves on it’s own. Reading the pathologist’s report, you could almost hear how excited he was to have gotten to diagnosis it. He actually said thank you for allowing him to work on the case! Ha! So, for now, we just keep an eye on it to make sure it doesn’t continue growing or cause any other issues. So crazy. The man with a rare dementia, now has a rare benign tumor. Go figure. Maybe we should start playing the lottery!

Memory issues have continued to be more prevalent, but its manageable. After a visit with the neurologist, it may be due to the gabapentin he’s taking for his back pain, but it’s a chicken or the egg thing, and ultimately doesn’t matter. The gabapentin is keeping his pain at a tolerable level so, what do you do? The little mix ups of what day it is or having to repeat information occasionally is a small price to pay for some comfort. We discussed surgery with the neurologist but there are no guarantees and, because anesthesia can be really hard on FTD brains, they aren’t eager to do it. Work is the one thing that makes the pain unbearable, so I’m not sure how long he’ll be able to keep doing his two days a week, but that’s yet another decision. It’s really hard to know the best thing to do.

I think I’m going to leave things here today. The air everywhere feels charged with anticipation as we await the election results. I’d like to share something I’ve alluded to a few times in various conversations:

Try to remember, no matter who ends up winning this thing, all they’ve done is win an election. Neither is going to be a Savior, nor are they going to be the downfall of civilization. Rather than wasting precious energy worrying about who will be sitting in the Oval Office for the next four years and what they may or may not do while there, channel that energy into things that will matter to the people around you right now. Let someone go ahead of you in line, throw a few extra groceries in your cart for the food bank (and please make it good groceries – not just the cast offs from the back of your pantry), help out or donate to your local pregnancy resource center, serve a meal at a homeless shelter and take the next step of visiting with the people there and listening to their stories. There are so many ways we can change our own little corner of the world every single day. Life is precious and short. Don’t squander it.

Till next time . . . this is dementia.

 
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Posted by on November 4, 2020 in Uncategorized

 

Waiting Part Deux

The old saying is, “No news, is good news.” I’m not so sure about that.

We finally got the call about the biopsy the day after my last post. Unfortunately, it was inconclusive. They saw fibrosis and scar tissue, but that’s all. The surgeon said that it could be scar tissue, it could be a benign mass, it could even be some other muscle disease . . . or it could still be cancer and they just missed the cancerous cells in the core biopsy. He felt that the best thing to do was to schedule another biopsy where they would take a larger piece of the mass to see if they could get a better look. We saw the surgeon for the post op appointment Thursday afternoon, and the biopsy is scheduled for Wednesday of next week.

So, we wait again. At this point, I’m sort of just coasting along. I feel like I could be ready to hear anything. I just want it done and to get started on a plan – any plan. Life goes on, you know? The day to day just takes over and I have to keep doing what has to be done. But it’s always there, nagging at the back of my head, taking up brain space.

Keith seems to be handling it ok. He got pretty anxious when we were waiting for the results of the initial biopsy, but has settled down now. He, too, would like to find out what is going on, however.

On the FTD front, we are seeing more memory issues. I’m not sure yet if it’s progression, or if it’s related to everything else that’s happening. Just like all this is taking up my brain space, I’m sure it’s taking up his as well. Regardless of the cause, however, it causes extra issues.

I think I’ve remarked before, Keith’s memory has been pretty good, probably because it was exceptional in the past. One of the first indications that something wasn’t right – 7 years ago now – was when he forgot an appointment. This was something unheard of. He always remembered everything – every phone number, every appointment, even the license plates of his coworkers. I was the forgetful one, the absent minded. I was the epitome of the joke about going to the store for milk, coming home with five bags of groceries, but no milk. It’s just the way I am. For almost 20 years, he was our collective memory bank. The day he forgot something, I knew we were in big trouble.

Over the last 7 years, Keith’s memory loss has been sporadic. Just little, random things here or there. Usually he would remember when prompted or reminded, and it didn’t cause too much trouble. Now, however, we are seeing episodes of true memory loss. A question asked the day before, asked again. A conversation repeated. This is somewhat unusual with FTD and is one of the ways it really differs from Alzheimer’s. It does happen, however, especially as the disease progresses.

I took over filling Keith’s medicine box when he had his dehydration adventure in June. (He recently got upgraded to the BIG box with 4 rows!) I tell him when he is running low on something and he orders the refills online. He doesn’t always like the fact that I’m taking care of his meds so I figured that would give him some control, something to be in charge of. Twice now, however, he didn’t actually order the meds. Both times he didn’t even remember that I had told him we were low. I could tell that it was different from before when, after a moment or two, he would pull up the memory and remember. Now it was like the memory was just gone.

It’s so tempting, and so hard to avoid, using that terrible, “R” word – “Remember?”

Remember, honey? We talked about that.”

Remember? I told you we were running low.”

“The doctor said __________, remember?”

“Don’t you remember? [fill in the blank]”

The reality is, no, he doesn’t remember, and – news flash – asking if he remembers, doesn’t help! But, oh, it’s so hard. Especially when it’s the end of a long day, the kids are making me crazy, the dogs and cats are making me crazier, I’m focused on dinner or chores or whatever task is in front of me, and now I need to explain something that we just talked about . . . again. I just want to snap back with that “R” word. And sometimes I do. And then I feel like crap because I can see in his face that, for him, he’s asking the question for the first time. So, I take a deep breath, change my tone of voice, and answer the best I can. (Some days I am decidedly more successful with this than others.)

Time will tell if this is actual progression, or just that he’s preoccupied with all the tumor concerns. I suspect it’s a little of each. He never quite got back to baseline after the dehydration, and previously, he’d been doing pretty well for a while (we call that a plateau – several months with little to no change or progression), so it wouldn’t be surprising if we see a drop in abilities. That said, this is also a lot for him to have on his mind and it would be completely understandable if it’s affecting his memory and other mental functions.

So, we’re waiting again. And after the biopsy, we’ll wait to hear results again. In the mean time, we carry on with life – me starting a new job (I’m going to be a Lunch Lady!), kids going to school (or distance learning if there is another positive Covid test in the classroom), meals, chores, family time watching the Packer game on Sunday.

Life goes on. Somehow, by the grace of God, we keep putting one foot in front of the other and muddling through.

Till next time . . . this is dementia. Remember??

 
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Posted by on October 17, 2020 in Uncategorized

 

Waiting . . . .

Keith’s biopsy was done last Wednesday, but we are still waiting for the results. I wasn’t going to post again until we heard more, but hit on something I wanted to talk about. While waiting for things like this is excruciating, it seems like there is always a purpose, always something to learn or discover. Tonight, I want to share what I’ve learned during this time of waiting – how to be a better friend.

Naturally, when sharing news like this, you suddenly hear from a lot of people, many of them you may not have heard from in a long time, or aren’t particularly close to. I have had many of these friends and acquaintances writing and commenting with offers of prayer. I am eternally grateful for that. Prayer is a powerful thing. It changes everyone involved. Knowing we are being prayed for is humbling. It warms my heart to know that we are on the mind, heart, and praying lips of so many people. But prayer changes the person praying too. It takes our minds off of our own troubles and changes our perspective, often reminding us of how much we have to be thankful for and how much other people in our lives are also suffering.

Then there’s the daily friends. Those ones you know are with you, in thick and thin., through it all, day or night – the ones you have to keep in your life because they know too much about you to ever let them escape! I’ve been very struck by how differently my friends have responded and how each of those responses is uniquely perfect and intensely needed.

One friend is the kind who, even though we’re miles apart and haven’t seen each other in a couple of years, every time we talk, we just pick up like we’ve never been apart. She’s the friend who, if we were able to, would just sit with me at the kitchen table and share a few drinks. We might not even say anything – we’d just be together. We’d probably also laugh a great deal and reminisce about all the dumb things we did as kids!

Another friend, whenever I give her updates, always asks me how I’m doing. Always. It doesn’t matter what’s going on with her, she always wants to make sure I’m ok, not getting too stressed, and reminding me that God has this and that we’ll be ok, even if things aren’t ok.

A third friend is the one who I can say anything to – vent, rant, be goofy – whatever. The best part is, she has enough chaos in her own life that I can be distracted from my own worries for a while and just have a few laughs over whatever ridiculous thing has happened this time.

Finally, there’s the friends we don’t know are there. The friends who’s lives we touch without even knowing it. These are the ones that, when you see their names pop up on a message or text, you think, “Woah! I haven’t talked to her in ages! I wonder what she’s messaging me for?” And then you open it and realize that there is a greater purpose to everything you’re going through. When I got these kinds of messages after my last blog post, I was so incredibly humbled to know that, in giving me this gift to write – for gift it certainly is – and the courage to share our story, God has enabled me to help others, to put words to their feelings and pain, to bring them peace. I have said from the beginning that I don’t mind what I need to go through, if only I can help someone else along the way so that their journey is easier. God has provided that end of the bargain ten-fold.

I am immensely blessed with friends. Through them and all their wonderfully varied ways of responding, each touching a different need I have on any given day, I have been made better. I have been able to take the things that they do and say and, hopefully, respond better to those around me.

While this isn’t part of the dementia experience specifically, it is part of the human experience, and something I may not have discovered but for what we’re going through now. I guess I look at it like this – we always have crappy stuff we need to go through anyway, we may as well find something good to get out of it! I have found far more good than I could ever have imagined.

Till next time . . . . (hopefully soon, with some news!) . . . This is Dementia.

 
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Posted by on October 6, 2020 in Uncategorized

 

C isn’t just for Cookie

Well, Dear Readers, my blog might take on a different tone in the coming weeks. We got some news yesterday that will add a different dimension to this caregiving journey. But let me start from the beginning.

On Thursday of this past week, Keith came to me saying that something felt funny on his back. He reported that, on Monday, he started feeling something like pressure. No pain, but some pressure. I told him to lift up his shirt. He didn’t think I would be able to see anything . . . but he was wrong. There was a very distinct bump rising out of his back, just along the right side of his spine.

I felt around and noted that it was very firm, and I could cup it in my palm, but it extended above and below my hand. Now friends, I have large hands. I wear men’s size large gloves. This seemed very alarming to me.

I wrote to Keith’s primary doctor and received a message back from the nurse that we should go to Urgent Care, which we did Friday morning. Lab work, a CT scan, and about 6 hours later, the Urgent Care doctor told us that it looked like a muscle cancer.

Cancer.

Cancer is one of those words that likes to echo in your head. It just sort of hangs out there. You go home, you make dinner, go shopping, try to get on with the normal things that need to be done. But it just keeps coming back.

Cancer.

We just got done with a cancer scare a couple months ago. Keith had a strange spot on his shoulder that itched and scabbed and bled. They removed a sizeable chunk from his back, and I thought for sure it was going to be cancerous. There was almost a month between when we first saw it and when it was removed so I had been thinking about it and Dr. Google-ing for a few weeks. Thankfully, it was benign, but I was prepared. Yesterday’s news came a little too quickly.

We were sent on our way from Urgent Care yesterday afternoon – a Friday, at 4 pm – without anything but the assurance that Primary Care would be in touch with us on Monday. No firm diagnosis, no appointments, no plan. I don’t do well with no plan. I can handle darn near anything – I feel like I HAVE handled darn near everything – if I have some scaffold, some sort of idea of what happens next. Even if the plan changes along the way, that’s fine, I can adjust, but please give me something to start with!

Cancer and FTD make for interesting bedfellows. Keith is cognizant enough to know that he wants treatment, even though he doesn’t like the idea of chemotherapy, but there’s so much more to that decision. Just having surgery with anesthesia can affect people with FTD in a detrimental way, to say nothing of chemo which can take a person who has all their mental faculties intact, and wreak havoc with their memory and personality. So lets just smash all that stuff together, add in the fact that the person in question doesn’t recognize their own deficits and tends to be short tempered anyway . . . I see a crazy road ahead.

In my heart and soul, I know that everything will go as it is intended to. My faith tells me that God is in control and that He has a plan I can only hope to glimpse and understand. While life and our circumstances may be difficult, and we may question why things happen the way they do, I firmly believe that God loves us and that whatever happens, there is a reason. We may never see it directly – or we might! – but I have to believe that it’s true and that, in the larger Eternal picture, all has been taken into account.

All that said, the brain doesn’t always like to listen to the heart so well and prefers to spend lots of time wandering down rabbit holes of information and asking questions that can’t be answered, no matter how many times you Google them. Things like this just take up a lot of brain space too. It makes everything a little harder to deal with and just makes you tired. Kind of like trying to run too many apps or have too many tabs open. You find yourself doing dumb things and standing there going, “What was I just about to do,” way more than usual.

So . . .. here we are. I will update as soon as possible. I have no idea what the next week or two will bring but, until next time . . .

. . . this is dementia . . . and cancer, I guess.

 
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Posted by on September 19, 2020 in Uncategorized

 

Helpful Harry Strikes Again (or RIP Borage)

I apologize for the long delay in posting.  We’ve had a lot of changes in our house recently.  Our two young adult boys had talked about moving out, but had no solid plans.  And then suddenly they did, and within a couple weeks, they were gone (they only moved a couple miles away so I see them plenty but . . . you know).  So, between kids fleeing the nest, getting ready for the new school year – two youngest in school and me driving school bus, and 17 year old daughter getting a job and suddenly deciding to start at the community college this fall instead of waiting till January . . . it’s been a little chaotic.

And then there is always doctor appointments, chiropractor appointments (my hips seem to like doing their own thing these days, which tends to make my back angry), and all the other little things that crop up on any given week.  The two youngest and I have been working at a community garden all summer and are now, literally, reaping the fruits (or vegetables) of our labor.  It’s great to have all the produce, but it’s one more thing that needs to be dealt with in a timely manner.

Keith has coped well with all the activity and changes, albeit being a step or two behind most of the time.  I’ve noticed more memory issues, which leads to extra explanations, more reminders, and, of course, more questions.   It’s wonderful to have him in good humor, but the drawback (there always seems to be a drawback) is that he tends to be more talkative and want to “help” with things.  

You know how little kids always want to help, but sometimes their help is . . . well, not so helpful?  Like when one of the boys, at 3 years old, liked to quietly make breakfast for himself before I got up in the morning.  There would be an inch thick layer of peanut butter around the edge of the jar and toast crumbs everywhere.  But he was so proud of himself!  The instinctual response it to freak out about the extra mess, but of course, we all know the correct response is to praise him and then have him help clean up.  At times like this, when my kids were little, I would call them, “Helpful Hannah,” or “Helpful Harry.”  They want so badly to be helpful and independent, but it’s often hard for us parents to remember how important that is to them and maintain a good attitude.

So often, we see this with dementia too.  So much has been taken away from our loved ones – jobs, driving, all the things that defined them – they often try to find ways to be helpful around the house, and, like our small children . . . aren’t always so helpful.  Like, when . . .

 . . . they want to cut the grass with the electric lawn mower, but end up running over the cord . . . twice.

 . . . they want to help move furniture but have lost some of their coordination and balance skills and end up dropping things, bumping into walls, or even getting hurt.

 . . . they decide to spray weed killer and end up killing a big, beautiful volunteer borage plant that came up in the side yard!!   Folks, I wanted to cry.  I almost did cry.  I stood there looking at all the thistles and other weeds threatening to take over that side of the house, and then my poor, dried up, poisoned wreck of a borage plant and kept asking, “Why??  Why would he leave all those other weeds and go after this beautiful plant with it’s fuzzy leaves and little purple flowers??”  I was so mad.  I knew I shouldn’t be mad.  He was trying to help.  But I was still mad.

Sadly, I couldn’t quite keep it all in and said something to him.  He gave me a confused and wounded look and, honestly, I’m not sure he even knew what I was talking about.  Fortunately, things tend to blow over quickly these days.  If I had said something a year ago, it would have led to a lot of shouting and colorful words, but now, nothing else was said afterwards.   I’m hoping that the seeds dropped and survived and that it will come back next year.  If it does, I will make it look more intentional and make it clear that I want it there and it is not a weed!

So, Helpful Harry struck again.  Not the first time, not the last.  It’s so hard to remember sometimes that our loved one is just trying to retain some purpose in their lives or are responding to cobwebby thoughts in the back of their mind that tell them, “You should do this,” but they have some of the steps in the wrong order or even completely mistaken.   When everything else in our lives is going crazy, and our loved one’s failed attempts frequently make even more work for us, sometimes we “lose it.”  And it’s ok.  We have to be gentle with ourselves and remember that we are human with human limitations.  We have a little cry, we forgive ourselves, and we start again.  Life will go on and, someday – hopefully – we can find humor in these moments.  I’m not quite there.  I really liked that borage plant.

Thanks for reading.  I hope you are staying healthy and safe.

Till next time . . . this is dementia.  

 
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Posted by on August 28, 2020 in Uncategorized

 

Is There a Plumber in the House?

It’s been a few weeks. We’ve had a lot going on. Keith had a little cancer scare with an unusual lesion on his shoulder that proved to be benign, but required some minor surgery.  He has also had continuing trouble with his back. He has a lot arthritis in his lower back, some bulging disks, and other assorted painful issues. He’s tried a lot of treatments, but nothing has worked so they referred him for epidural injections. The appointment was delayed (thank you, Covid), but he finally got it 2 weeks ago. The doctor considered two different places, picked one, telling him to let him know if it still hurt, and it does, so it looks like he’ll be going back.

We’ve also had kids flying out of the nest.  In addition to our daughter who got married in June, our two eldest sons have gotten a townhouse with a couple friends and are stepping out into adulthood. They have been hired as apprentice carpenters at a local construction company so, while it’s strange not having them around the house, I couldn’t be prouder of them. Besides, they’re only 2 miles up the road so I don’t think I’ll have to worry about missing them too much. Ha!

So, life has been humming along.

Except under my kitchen sink, where it’s been dripping along.

Dripping. Dripping . . . patiently waiting for me to replace the fixture. Unfortunately, water and leaks aren’t super patient and don’t stop when I forget to empty the jug I have under there to catch the drips. They just keep dripping, and the jug gets heavy, and . . . Can you guess where this is going? My little drip has become a bigger problem and I’ve had to face the reality that I just don’t have time to fix it and need to call in a professional.

I hate it.

Call me stubborn, independent, headstrong, whatever. It’s also probably some of my Dad in me who always seemed to know how to fix everything that needed fixing around the house. To my credit, I have learned to do a lot of things. In the past several years I have:

  • Reattached roofing sheets that came loose on a shed
  • Replaced many door handles, including dead bolts
  • Installed a new tub faucet, which required scary things like cutting a hole in the wall and putting in an access panel
  • Replaced kitchen sink fixtures more than once
  • Replaced a leaking drain basket in my kitchen sink
  • Spliced and repaired severed electrical cords
  • Probably a number of other things I’m forgetting.

I feel accomplished when I can diagnose a problem, look it up on YouTube, and fix it.  I generally enjoy doing it and have learned a lot.  Fortunately/unfortunately, one of the things I’ve learned is that, when you are doing things yourself, it takes, on average, twice as long as it should and causes 10 times more frustration.  While I may have the physical time to fix my sink, I don’t have the time or mental energy to give a project that I know will end up making me crazy, not to mention derailing all the normal day to day stuff that also needs to get done whether I’m under the sink or not.  There’s also the possibility that I won’t be able to finish fixing it, which would make it a far more urgent plumbing need, where I need someone to come NOW and take care of it, unless I want to wash dishes in the bathtub (no thanks).

So, after putting it off for longer than I should have, I took a deep breath today and called a plumber.   I still hate it.  But I’ll be glad to have it done and over with.  

I know this will be a familiar story for many caregivers, especially wives who’s husbands have always taken care of all the household repairs.  In my case, while Keith helped me with things in the past, I was usually the primary “fixer” (though, truth be told, I would have been just as happy to defer it to a capable spouse).   But for many, it can often be very difficult to take over these duties (same goes for caregiver husbands who suddenly have to take over meals, laundry, and other things their wives usually did).  They may feel like they are betraying their spouse by taking over jobs he or she used to do, or hiring outside help.  They worry over the cost of hiring someone.  Most of all, they just feel overwhelmed by needing to find a capable person, hoping that the person will actually do a good job and not rip them off or charge too much, and the whole process of asking for help.  Or, they’re just stubborn old birds who want to do everything themselves and get irritated when they have to admit defeat.  That’s me, if you didn’t guess.  

This is just another one of those funny by-products of a dementia diagnosis they don’t tell you about and you don’t think about it until it happens.  Fortunately, as much as we dislike it, it’s an opportunity for growth and to learn more about ourselves.  I’m glad I’ve learned the skills I have and am no longer terrified by the site of a severed electrical cord.  I’m glad I can mow the lawn, use the trimmer, clean my gutters, and change my storm windows.  I’m also super glad that my kids have taken over some of this stuff as they’ve gotten older and I don’t have to do it.  Just knowing I can do it though, if I have to, feels good.  

But I still don’t like asking for help. Ha!

Until next time . . . .

         . .. . this is dementia.

 

 

 

 
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Posted by on August 4, 2020 in Uncategorized

 

Changes

Change. Progression. Advance. Decline.

Call it what you will, among all the uncertainties that come with a dementia diagnosis, the one thing you can count on, is that things will change.

Most of the time change is very slight, almost imperceptible – at first. Its only in hindsight, after several weeks or even months, that you pause one day and go, “Huh. .. something changed.” You might even be hard pressed to know when it started because it came on so gradually.

Slow change is often accompanied by what I like to call the “bunny hop.” The person looses a few skills, but then gains one or two of them back. This seems to happen a lot early on, at least in FTD. It leaves the caregiver wondering if they are the ones losing their mind because one day it looks like your loved one is really slipping badly, but then a day or two later, they’re virtually back to normal. It can be maddening.

Other times, you see what we call, “stair step,” progression. The loved one plateaus where they are, not really changing, for a long time – weeks, months – but then suddenly experiences a drop in abilities. This could happen because of a sudden event – sickness, surgery, etc. – but can also happen naturally.

One of the most common questions I see people on support boards ask is, “How fast is my loved one going to progress?” Sadly, there is no good answer. And yet, we yearn to know. Our lives have just been turned upside down and we want something concrete to hold on to, some kind of scaffolding to give us an idea of what will happen next, what to prepare for.

Keith has had a slow progression from the beginning. If I really want to stretch back, the first thing I remember him doing that made me go, “That was weird,” happened 16 years ago. He inexplicably came home with a puppy when we already had a 1 year old dog, and kids aged 9, 4, 3, 2, and 1. He had mentioned the puppies one of his coworkers had and I had given it an unequivocal, “NO.” Yet, there he was with it. I was livid! I immediately called a rescue organization to come pick it up, but he was so upset that, as the people drove away with the puppy, he sat in the front yard moping. When I tried to talk to him, he placed his hands over his ears and said, “Na-na-na-na-na!” like a small child having a tantrum. I didn’t know what the heck was going on. He never did it again, so the incident was lost to memory for many years, but there’s something about a dementia diagnosis that sends you wandering down the dark cobwebby hallways of your brain, scouring the past for any signs, any indications that you may have missed.

And so it’s gone for all these years. Something odd happens, but then doesn’t happen . . . .until it happens again . . . and then happens more often . . . and then gradually becomes part of what is now normal and you stand there scratching your head saying, when exactly did this start?

A lot of caregivers keep a journal, especially pre-diagnosis. It can be invaluable when you are able to show doctors documented data about what has changed and when. The drawback is that you can start to feel like you are spending the day analyzing your loved one, writing down every little oddity and infraction because you don’t know what will end up being important. Sometimes you just need to take a break from journaling and come back. I did this several times over the years.

As I was saying, Keith has had very slow, gradual progression all along. Even having surgery last January (the same week he was diagnosed), didn’t seem to affect him much. (Sometimes anesthesia can cause declines in dementia patients, particularly those with FTD.) The Dehydration Adventure, however, seems to have done a number on him.

It’s been a month since Keith was hospitalized for severe dehydration. He was very disorientated and there were major changes in his ability to process information. Over the first couple days, there was improvement, but a month out, it’s clear he didn’t come back to baseline.

Like this entire journey with Keith has been, it’s small, hard to define changes. It often takes me several weeks to really know if something has changed. In this case, immediately after the hospitalization, he was energetic, talkative, and genuinely seemed to enjoy all the wedding festivities that weekend. There were cognitive deficits, but in an odd turn of events, he seemed to notice them, and was accepting of help. In the weeks that have followed, however, he has gotten quieter, even more withdrawn, staying almost exclusively in the bedroom playing games on his phone. He’s been tired, often complaining that he didn’t sleep well and then laying down to sleep for a couple more hours. Cognitively, he’s slower, needs more explanation, and is more forgetful. Ironically, on the plus side, he remains in good humor most of the time, often wants to talk to me, and continues to be accepting of assistance. This is something that we have never experienced and, I have to admit, is really nice.

So, we adapt, we accept the new normal, and we wait to see what happens because, while this could be the beginning of a steeper downward slide, it could also follow history and he could continue to have gradual change, or even stay plateaued here for a while. The only thing we know for sure is – things will change. Because. . . .

. . . this is dementia.

 
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Posted by on July 14, 2020 in Uncategorized

 

Wedding Bells

This is going to be a “happy stuff only,” post, because those are the only kind of words I have for the Wedding Day. Everything went so well. Like all big events, it was exhausting, but it was the kind of exhausting that leaves you feeling complete and fulfilled.

All of our kids were home. Everyone pitched in to help make the day beautiful. We had good friends who helped out and were “me” when I couldn’t be. The initial weather report for the Big Day sounded threatening and full of rain and wind, but we all prayed like crazy and, while we did have some rain, the

lorents-rain
shelter had ample room for everyone to comfortably socialize and stay dry – except for a few guests who intentionally ran out to get soaked!
I am so incredibly grateful for all that happened that weekend, I can’t even find adequate words.

I am happy to report that Keith was in good humor and felt good the whole weekend. After the dehydration scare, I couldn’t help with things as I normally would because I wanted to stay home with him, but it gave others the opportunity to shine. I also knew that our daughter had planned well and had a lot of help lined up for food prep, decorating, and everything else that needed doing, and I didn’t need to worry.

So, they are married. For the past week, they’ve been busy feathering their nest and adjusting to married life. As much as I miss her, I’m so incredibly happy for them.

And now, what you really came to see – PICTURES!! All the photography was done by our eldest daughter’s husband, Aaron Tarbet Hust, Cut the Crop Productions. I asked him the huge favor of finding a few pictures for my blog, even though he had over 2000 photos to sift through! His work is greatly appreciated.

Our lives, and all the memories we make, will forever be tinted by dementia. Days like this, however, show that dementia doesn’t have to be black and overpowering. Sometimes, if you are lucky, dementia adds beautiful colors that enhance the richness of the memories in ways that could never have been imagined. Love, friendship, family, and new beginnings – these too, are part of dementia.

tony-and-us

family

Our family

tony-and-keith

Father-Daughter Dance

tony-and-soren

The Newlyweds!

All photo credit is attributed to Aaron Hust, Cut the Crop Productions

 
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Posted by on July 1, 2020 in Uncategorized

 

Ounce of prevention

I know I said I wouldn’t be back till after the wedding, but we had some excitement this week that was important enough to get me to sit down today, on the “wedding-eve”, and tell you a few things I learned this week.

Number 1:  Dehydration happens fast.

On Tuesday, Keith rode his bike home from work.  He’s done this for years, no matter how hot, and never had any trouble.  It was about 97 that afternoon and, while it crossed my mind to ask him if he wanted me to pick him up, in the end, I didn’t think of it in time and by the time I messaged him, he was already on his way.   When he started to take longer than usual to get home, my little inner voice started to argue with my logical brain.  Inner Voice kept trying to tell me that something was wrong, while Logical Brain kept shushing it and saying that I was being dramatic.  I tried calling.  Several times.  When he didn’t answer, Inner Voice started shouting.  But, all I could do was wait.

At one point, I looked out the window and there he was standing, staring up toward the window.  What in the world???  I went out there and had to call his name several times before he heard me.  He looked like he was on the verge of passing out.  His bike was laying haphazardly on the ground.  Everything seemed wrong.

I hurried him into the house, put his bike away, and got him in front of the fan with something to drink.  A few minutes later I brought him a cold towel to put on his back.  Again, I had to call his name several times.  When he didn’t respond, I touched his arm gently with the wet towel so I wouldn’t startle him.  There was still no response.  I laid it across his back, which he then noticed, but was slow.  I watched him for a little longer, replacing his towel, but he just seemed to get worse.

I decided to call the nurse line, but was put on an extended hold.  While waiting, I decided he was going to need to go in to the hospital, but couldn’t get him to understand what I wanted him to do.

“Come on, honey.  We need to go to the hospital.”

“Why?”

“Because you’re overheated.  We need to get you checked out.”

He would come with me as far as the dining room, but then he would start looking for something and return to the bedroom.

“Come on, honey.  We need to go to the hospital.”

“Why?”

“Because you’re overheated.  We need to get you checked out.”

We repeated this about 4 times before I realized I was just going to have to call 911 (I was still on hold with the nurse line, by the way).

Lesson 2. Dehydration is scary.

When the paramedics came to assess him, Keith kept trying to put on a shirt . . . even when it was really a pair of pants.  He couldn’t say what the date was.  Or even the year.

By the time I was let back into the Emergency Room, he was on a bed, semi-asleep, moaning and flailing his legs and arms around.  At one point he pulled out his IV, and didn’t even notice when the nurse set up a new one.  She had to keep dodging his swinging feet, and put extra wrap on the IV so he wouldn’t pull it out again.

After his first bag of fluid, he slept a while, but when they wanted a urine sample after the third bag of fluid, and we couldn’t get him to respond to us, about 5 staff held him down for a catheter.  He kicked and fought, but couldn’t hear/understand anything anyone was explaining to him.  They hoped he would be more awake after that, but no, he went right back to sleep.

When they decided to admit him around 9 pm, this procedure was repeated for a blood draw.  He kicked and fought, having no idea what was happening to him.  Once, I heard him say, “yes,” but other than that, they only words he uttered that night, were, “OW!”  His eyes were blank and there was no understanding.  At one point, he tried to get up off the bed.  Again, staff had to come in and physically move him back onto the bed.

I came home in tears, wondering if he was gone, and if we would never hear his voice again.

Lesson 3.  Dehydration takes time to heal

Keith came home from the hospital yesterday morning.  He’s doing much better.  He is NOT, however, back to baseline.  There are memory gaps, chunks of information that he seems to have lost, and lots of confusion.  The mere fact that, after being inside, in the air conditioning for over 5 hours and receiving 4 liters of fluid, he was still unresponsive and so altered, was just stunning to me.  (They did check for stroke right away and were very concerned, but all was fine.)

From what I’ve been reading, he may still come back to baseline, but with the dementia, he also may not.  He may even continue to decline faster from this point forward.  Like every other maddening thing about this disease, time will tell, and we have to be content with that.


 

Seniors and people with dementia are at a high risk for dehydration for a number of reasons.  They may forget to drink or not recognize the sensation of thirst,  may not like drinking water, their bodies may not absorb water like they used to, or they may be taking medication that causes them to dehydrate more.  In Keith’s case, the doctor felt that a medication he was put on recently increased his risk for dehydration, and took him off of it.

I’ve been trying to watch Keith’s fluid intake and bought him more Gatorade.  He drinks a lot of coffee, so this might be a challenge.

I’m including a couple of links to articles I found helpful.  This is one of those situations made for the phrase, “An ounce of prevention is better than a pound of cure.”  Far, far better to stay on top of hydration and be watchful to head off any potential problems before they occur. Above all, I have definitely learned not to underestimate dehydration.

Dehydration and Dementia

Delirium vs Dementia

So, now it is time to retire and get ready for the big day tomorrow!!

Till next time . . . .  this is dementia!

 
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Posted by on June 19, 2020 in Uncategorized

 

Walking the Line

Hello!  I apologize that I haven’t had a chance to write for a couple weeks.  It’s been a flurry of activity both in the world and here in our house.    While the world has battled numerous tough issues, we have been in the final weeks of planning for family celebrations.  Our “Hawaiian Contingent” – eldest daughter, her husband, and our 17 year old daughter who has been living with them for the last year – arrived this week in anticipation of our second eldest daughter’s wedding.  The eldest and her husband are also having their hometown wedding reception while they are here because they were married last fall in Hawaii, where they live.  So, you can imagine that it’s been a little crazier than usual around here!

Through it all, I have to admit that Keith has done well.  There is steady decline, but his mood has been good.  I know I’ve said it before, but I will say it again – thank you, Seroquel!  It’s been wonderful having everyone together and I’m excited for the coming week and all the joy it will bring.  But there is tinges of sadness too.  While Keith is happy,  and knows what is happening, he misses so much.   It’s apparent in the repeated questioning about the plan, the surprise on his face when he is told something for what seems like the first time for him, but is really the fifth or sixth time it’s come up, the lack of emotion and desire to just keep with his regular routine, regardless of who’s here or what is happening.   I don’t know how he will handle things when it comes to the actual events.   I try to walk a line between anticipating potential issues in order to head off problems before they occur, and not borrowing trouble worrying about things that haven’t  happened.  It’s a mighty fine line.

Some things that I’ve had to consider:

  • How do I help with the events, while still keeping an eye on Keith?  Do I hire help?  Do I let him drink alcohol?  If so, how do I make sure he’s not helping himself to too much?  What happens if he starts saying or doing things that are embarrassing?
  • Keith will want to go home early.  Do I leave the party to take him home?  Do I ask one of the kids to take him home?  Is that fair to do?  Will he be ok at home alone for the rest of the evening?
  • There is a LOT going on.  Reception Sunday, prep for wedding next Saturday, the wedding itself, and the gift opening on Sunday (which is also Father’s Day).  Will he be able to keep up?  Will he get tired?  If he gets tired, will he be bad tempered?  How do I help with things, but balance that with not leaving him alone more than necessary?  How best to keep him engaged but not overwhelmed?
  • Now toss in making sure the dogs are taken care of, not getting stressed out myself, calming the bride-to-be and assuring her that everything is going to go just fine, making sure everyone eats . . . . . PHEW!!!!!

FTD provides a double whammy in relationships.  Not only is it just you, the caregiver, doing things that would normally be shared responsibilities, it tacks on additional responsibilities that you wouldn’t normally have.  If Keith was absent, I’d be doing things alone, but I also wouldn’t have to worry about him and his needs.  Thankfully, I have some really great kids who continue to impress me with all that they do and their willingness to step up and take care of things.   Tony, the bride-to-be, has done an amazing job with her planning.  She and her fiance have been very determined to take care of things themselves as much as possible.  Our eldest, Emily, and her husband have been the same.  Planning a reception when you live almost 4,000 miles away is no joke, but she has it all handled!

I probably won’t be back on until after everything is over, but then I’ll be back with some pictures!  Wish us luck!

Till next time . . . . This is dementia.

 
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Posted by on June 12, 2020 in Uncategorized