RSS

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.  

 
2 Comments

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.

 

 

 

 
Leave a comment

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.

 
Leave a comment

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

 
Leave a comment

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!

 
2 Comments

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.

 
2 Comments

Posted by on June 12, 2020 in Uncategorized

 

A is for Advocate

We had some excitement the last couple days.  Keith had been told to go to Urgent Care whenever it was convenient, so he could have a back x-ray.  He’s been having terrible pain in his back for many months now, but hasn’t been able to see his primary care doctor (it’s actually more that his primary care doctor had left and hadn’t been replaced yet, but that’s another story).  He’d had appointments with doctors on tele-health, but it’s hardly the same thing.

I think he finally has a doctor now (I’m knocking on wood as I type), and she seems to be a little more proactive about getting to the bottom of what’s going on with his back., including leaving orders for this x-ray.   So, on Saturday, I took him in.  Naturally, I couldn’t go back with him (thank you Covid), but I didn’t think it would be a big deal.  It was just an x-ray.  Keith was going to ride his bicycle home, but I waited a while in the lobby just in case.  It was a good half hour before the nurse came out to let me know what was going on.  He had seen a doctor, who gave him an IV and some anti-inflammatory medication.  I was surprised but thought, well, ok . . . weird, but no biggie.  It was going to be another hour before the IV was done, and I had flowers waiting at home to plant, so I left.

When Keith got home, he said something about a prescription the doctor gave him.  Oh?  What did he give you?  Prednisone and Vicodin (aka hydrocodone).   While all the red flags in my head started waving and alarm bells went off all over, I mustered the calm to ask how much Vicodin he gave him and how he’s supposed to take it.  He wasn’t able to give a clear answer – something about 6 days worth, half a pill a day,  the doctor told him 3 pills, but there were 6 in the bottle . . . it was clear he didn’t remember/understand what the doctor told him.  Meanwhile, my brain is screaming – Did the doctor even look at his chart??  Who thinks it’s a good idea to give a dementia patient who has a history of alcoholism, who has it in his chart that he gets 2 beers a night – Vicodin!?!?!?

I looked over the discharge papers and the meds they gave him – it was 6 pills, and the bottle said to take one every 12 hrs.  I asked if the doctor mentioned anything about not drinking alcohol with this medication and he said no.  I told him that if he takes it, he can’t have his beer.  No problem – he’s not going to start the Vicodin till the next day when he has to work.  So . . . then, you’re not going to drink beer tomorrow?  No … maybe – can’t I just take the pill in the morning and not take the one at night?

. . .. . Can you see where this is going?  Only in FTD Land do I get to be both the Policeman AND the Bad Guy.

I called the doctor.    I told him about my concerns and that he put me in a very difficult position.  To his credit, he owned up to the fact that he missed the dementia diagnosis on his chart and suggested that I hang onto the pills.  He had been reluctant to give them in the first place and only wanted Keith to take them when the pain was unbearable.   I asked if he realized that Keith was going to get angry with me if I try to take the pills.  He started to suggest several other approaches I could take but I stopped him.  How about this, I said – you can tell him.  I handed Keith the phone telling him that the doctor had called back and, having had a chance to look at his chart better, wanted to clarify a few things about his meds. (Remember the 4 D’s and Loving Deception?  Pretty good, huh?)

Keith was agreeable and polite with the doctor, but was NOT happy about me taking the pills.  I have them, but that doesn’t mean it has gone well.  There has been a lot of very hard feelings about being treated like a baby, I don’t trust him, I get off on emotionally abusing him, etc., etc., etc. . . ..

Ok, so, why am I telling you this?  I want to impress on you how important it is to advocate for your loved one.  It is an absolute must and you can’t allow yourself to be bullied or intimidated out of your responsibility.   I let my guard down.  I made assumptions.  I let my desire to go home and enjoy the rest of my Saturday afternoon take precedence over my duty to Keith.  And I paid for it.  Do not get me wrong – I am not beating myself up or running myself down, but I’m owning my mistake and I am using it to strengthen me for the next time.  I will not leave him alone at the hospital or doctor again.  Not ever.  I don’t care what disease or pandemic or other issue may be happening – he and I are a package deal and if they don’t want me there, they will have to bodily carry me out.  And I’ll be on the phone with 911 and reporting them while they do it.

If you think I sound like I’m being over dramatic, consider the “could have’s” here.

  • He could have not told me that he got that prescription.
  • He could have taken the Vicodin/hydrocodone and then drank beer.
  • He could have taken the Vicodin and then snuck upstairs while we were outside or not paying attention and got into harder alcohol that our daughter hides in her closet (which she needs to hide because he has been known to go looking for it).
  • He could have taken a half pill, decided it wasn’t working (or not working fast enough) and taken more – lots more.  I know this because he has done this before with other medications.
  • Bottom line – he could have died.

Hydrocodone and alcohol is a dangerous mix.  He could have very easily overdosed and I would have had no idea what happened.

So, the take home today, folks – advocate.  When your loved one – regardless of their condition – can no longer process doctors’ instructions, does not have the ability to reason and use logic, doesn’t understand the consequences of their actions – you can’t assume that the doctor has read their chart or understands their condition.    You have to be their voice.  They may not like it.  They may get mad.  But the reality is, you are all they have.  Their ability to make decisions and know what is best for themselves has been compromised and they need us to do it for them to the best of our ability. **

This, folks, this is dementia.


**PS.  I feel compelled to add – do not put yourself in danger.  If your loved one is explosively angry or you risk some sort of physical harm – don’t get in the middle.  Make sure you are safe and then, if you are able, do what you can.  If you can’t call the doctor in front of him, call from your car or a friend’s house, or hand carry or mail a note.  If you are at the hospital or clinic with him, say you need to step out to use the bathroom and speak to the doctor or nurse in the hallway.  Finally, if you are in danger with a suddenly out of control Loved One, DO NOT hesitate to call 911.  Explain that he is a dementia patient and is in a rage.  They are trained to handle these kinds of situations and they can help.

 
1 Comment

Posted by on May 25, 2020 in Uncategorized

 

Going it Alone

Over the years of dealing with FTD and getting to know many caregivers, one of the hardest things to deal with seems to be loneliness.  For most of us, our kids are growing, or grown, up and these are supposed to be the years to reconnect with our spouse, go on vacations, be spontaneous.  This is not what any of us signed up for or could have anticipated in our wildest dreams.  Just on a day to day basis, the house gets mighty quiet at  night when he goes to bed at 8:30, and I’m still winding down from the day and/or waiting for adult kids to come home.

I think it’s the day to day stuff that is the hardest.  Many FTD patients become apathetic – that’s often a first sign, very often mistaken for depression – and they just don’t want to do anything, even things that are important to others, or that would have been important to them before.  Of course, it’s a double edged sword because, if you do get them to go, they might act in inappropriate ways, say things that are embarrassing, drink too much, etc., and you might just end up asking yourself why you were so insistent that they come.   But our memories play tricks on us.  We long for things to be the way they were, but then forget that the person who lives in our memories, isn’t here anymore.  More and more, we just find that it’s easier to go by ourselves, but then, there’s nothing easy about that either.

Over the course of this journey, I’ve lost count of everything I’ve done alone.  Weddings, funerals, reunions.  The things that hurt the most, of course, are the things for the kids – games and sports meets, First Communions, Father/Daughter/Son events, teacher conferences, doctor appointments . . . . I could go on and on.

20190316_181838

On the other hand though, when he does come, it really means a lot, even if he acts kind of out of place.  One particularly memorable event was a father/daughter pizza making contest for a group our youngest is in.  We really didn’t expect him to go, and we had a few guys in line for a back up plan, but he surprised us by saying, yes.  Well, not in so many words.  I think, what he said was, “I suppose she really wants me to go.”  But what’s important is that he went, and he had fun, and so did our daughter. He has surprised us on a number of occasions.  They don’t outweigh the times he hasn’t gone, but we’ll take what he’s able to give.  I remind the kids we need to just be thankful he came this time.  I know it still hurts, but I feel like they’ve handled it fairly well for the most part.  As the kids have gotten older, it stings to hear them talk about memories they have about their dad and that there aren’t very many good ones.   I wish I could change that for them.  In the end though, I know I did the best I could and now it’s up to them to decide how they want to deal with it.  My dearest hope is that they don’t let resentment eat themselves up and, instead, they eventually find their way to forgiveness.

I don’t think you ever get used to it exactly.  I’m not sure it even gets easier.  I think, like most things involving grief – for this is very much what it is, grieving a loss of what was – it comes in waves.  Some days you’re sailing along smoothly, confident in your new reality, ready to take on the world, and then all of a sudden you find yourself crying in the bathroom because someone came up to you at a party that you haven’t seen in years, asking about your spouse, and you get to watch “the look” come over their face – sadness, sorrow, pity – and then they go off to the dance floor.  You’re happy for them that they have each other, but also miserably sad for yourself because, even if he was there with you at the party, it wouldn’t be the same.  It sucks.  And it’s always when you least expect it.

So, we grieve, and move on.  We know we’ll grieve again.  And even if it isn’t full on grief, as we get ready to go out and face the next social event, there will always be that twinge of loneliness, of longing for what was and won’t ever be again.  Our grieving comes in stages and waves, always knowing that there is more to come.  It may look different over time, but it’s always with us.  This, too, is dementia.

 

 
2 Comments

Posted by on May 9, 2020 in Uncategorized

 

To Pick, or Not to Pick – That is the question

Caregiving is a game of picking battles.  You have to decide what is important enough that you need to stand your ground, and what is worth letting go to maintain peace.   Even when something is important, many times you have to find work arounds (see my post on the Four D’s) to make your loved one see things as their idea or have enough incentive to agree.

I like to think that I’ve managed this particular “minefield” fairly well over the years, but it can be tough.  When I’m tired, stressed, or hormonal (don’t even get me started on that!), it can be really hard to keep the priorities straight and stay calm.  There have been many times when I have handled things poorly.  It’s those times when I have to remind myself that I’m only human and, no matter how much I know better,  I am simply not going to be able to respond the way I should every time.  It’s that old scene where the logical side of the brain is tapping me on the shoulder saying all the right things, but the emotional side is screaming about how mad, hurt, or lonely I am.

Some battles are easier to pick than others, and it’s a very individual decision.  What one person can let go, another person absolutely can not.  For example, I can live with Keith not showering (most of the time).  At least, I can live with it enough that I’m not going to pick a fight about it.  Could I stand at the door of our bedroom every morning with soap and a towel and demand that he shower before getting dressed every morning?  Sure.  Am I going to expend energy on that?  Nope.  But that’s just me.  For someone else, a daily shower is something that must happen.  This is especially true if incontinence is involved.  I haven’t decided what I’m going to do if/when that becomes part of our story.   I guess I just hope it won’t and, if it does, will figure it out then.

Food choice is another thing I can live with.   If Keith wants to eat bowls of cereal filled to the brim, go ahead.  If he wants a steady supply of chocolate – I can do that.  If I walk in the kitchen and see fork marks in the cake I made – no problem (I actually find that fairly amusing).  I try to keep an eye on his diet and offer him good things to eat, but I won’t fight him on it.  He generally always eats what I make for dinner so I count that as a win.  For other families, however, a loved one might want to eat constantly and they have to put locks on the refrigerator and pantry.  Or they might try to eat things that are harmful.  In situations like that, the family has to figure out how to put down limits, or stop them outright.

So, what battles do I pick?  Put simply – as few as possible.  I try to focus on safety and well being.  When we were still in the diagnostic stage, I insisted on the doctor appointments.  I always put the blame on the doctor – “Dr. B wants to run this test,” “Dr. C wants to rule out ‘x’.”   We needed to know what was going on for both Keith’s sake, and for the entire family’s sanity.

Driving has been a very thorny issue, and it is sometimes incredibly hard to stand firm on that, but I know I have to.  He’s had 3 different doctors say, very clearly, that he shouldn’t be driving, and I know myself that his judgement is impaired enough that he wouldn’t be safe on the road.  So, that is one I not only can’t give on, but if Keith ever tries to drive, will be forced to hide/take away keys, do something to make the car inoperable, or find some other means of preventing him from getting behind the wheel.

Recently, I’ve had a few times when I’ve let my emotions get the best of me.  I started to pick a battle that, in the end, wasn’t worth picking.  They were situations that really didn’t have long term consequences and were things that, in the short term, we could manage.  Luckily, Keith is to the point now that, though he gets really mad, curses, and yells, once it’s done, it’s done.  The last time it happened, as soon as I stopped talking about it, you would never have known it happened.  He was back to his usual self and nothing else was said.  Now, this also means that there’s no apologies.  He seems to have no concept of how angry he was, what awful words he said, or anything else, but that’s just another battle to either pick up or leave down.  What good what it do to insist on an apology when he has no understanding of how he was acting or how it could have affected me?   Even if he did apologize when I demanded it, would it be because he was sorry, or simply because I told him he needed to say it?

In the end, I know, because he’s sick, he doesn’t mean what he says.  His perceptions are skewed and his ability to empathize is gone.  What he says when he’s angry doesn’t hurt me because it’s not about me – or about him.  It’s just the sickness in his brain railing at the loss of control, the inability to do what he wants, and the way everything about his life feels unfair.  This is maybe the hardest battle to pick – choosing to not let ourselves take their anger personally.  It’s hard, but it’s necessary for our survival.  This is dementia.

 

 

 
Leave a comment

Posted by on May 3, 2020 in Uncategorized

 

Long Way Home

When I was 15, I spent 8 or so of my Saturdays, attending Driver’s Ed. I would come each weekend, dressed in my fringed leather jacket, looking like the punk I thought I was, counting the days till I could drive. To be able to come and go as I pleased, go wherever I wanted, and the freedom to do whatever I wanted to do without my parents being involved! I couldn’t wait!!

When I sat in the driver’s seat for the first time, I was terrified! (Full disclosure: I had once driven about 50 feet with my friend, Barb, but I scared us both, so that was the only time I’d driven before that day.) Thanks to my excellent teacher, Mr. Radar, I got through driver’s ed and got my license. I got my first car – a powder blue Volkswagen Rabbit – and I was FREE!!!!

For most of us, driving is equated with independence. We long for the open road, plan road trips, write and sing songs about driving – driving away, driving home, driving just to drive. As much as we curse the morning commute, the very fact that we have traffic jams attests to how much we covet our cars and being able to drive them. For most of us, the ability to drive, is part of who we are. We are so used to just walking out of the house, jumping in the car, and going wherever we want. It’s easy to take it for granted.

So, what happens when someone tells an FTD patient that they can’t drive anymore?

Now, just because someone has FTD, it doesn’t automatically mean they can’t drive. Unfortunately, though, many people with FTD lose their ability to plan and multitask, or they may have slower reaction times. Couple that with a loss of inhibition and difficulty regulating emotion, putting them behind the wheel of a car could be a recipe for disaster.

Remember, too, that most people with FTD have little to no understanding of their condition. In their mind, they are fine, nothing is wrong, and – quite often – everyone is against them. The loss of their driving privileges is just another blow.

For Keith, this blow came last year. After undergoing neuropsychological testing, he was strongly advised not to drive. A driving evaluation done several months later was the nail in the coffin. Until this past week, we hadn’t seen the results of the evaluation. Having been told at the time that he did, “fine,” Keith was convinced that the doctors and I were conspiring to keep him “locked up.” (Have I mentioned paranoia and suspicion as a symptom?) As this sentiment brewed and stewed these past months, it increased Keith’s agitation whenever it came up. He was certain that a trip to Mayo Clinic for a second opinion in February, was the answer and looked forward to it with anticipation. He was convinced that he would leave Mayo with the diagnosis changed and his driving privileges restored. When this didn’t happen, it was a second low, hard blow.

Recently, he requested the results of his driving evaluation. After being momentarily convinced that they had been “lost,” by the hospital, they came in the mail this week. Watching him read the analysis was sad. Reading them myself was sobering. While he did well initially, when speed and distractions increased, he was unable to keep up. His performance was poor enough that he was not allowed to complete the Interstate portion of the evaluation and the tester officially recommended the revocation of his license. The third blow.

After the initial dejection, there was anger and accusations. Because I had answered some questions for the evaluator, I had influenced her and this was all my fault. Anyone could have make those mistakes. There are people out there driving right now that shouldn’t be driving. He could drive better than anyone, especially the doctor!

By evening, things had settled down again and I haven’t heard any more. I’m sure I will eventually, but for now, all is quiet.

Keith has a local senior ride service that brings him home from work when I can’t, he could take the bus anywhere he likes for free with his disabled veteran card, and I take him anywhere he needs or wants to be. The reality is, however, he doesn’t generally go anywhere. And none of that is the same as being able to get in his car and go by himself.

As hard as it is for me to watch him be so down and miserable, I can’t even fathom how hard it must be for him. He feels betrayed by everyone and stripped of a fundamental part of who he is. Keith was one of the best drivers I knew. He loved driving! He liked nothing more than getting in a truck full of boxes and accepting the challenge of finding a route across the delivery area. He thought nothing of driving 45-50 hours a week, through rain, blizzards, you name it – whatever the weather threw at him, he didn’t stop and he always made it home.

Now, his pride and joy, Packer green Taurus sits in the driveway. Keith won’t ever drive it again. Keith won’t ever drive anything again. I can’t blame him for being mad. I don’t know that I’d handle it any better. It’s just another one of the casualties of this war.

This war . . . This is dementia.


*Along with being a song about driving aimlessly on “the long way home,” the title is a nod to Supertramp and Keith’s enduring love of classic rock.

 
Leave a comment

Posted by on April 26, 2020 in Uncategorized