Dementia at Fifty!

“I’m not defensive, I just sound defensive when I say I’m not.” Greg the Defensive Duck

Dementia At Fifty

OK, Rebecca you got this! I talk to myself a lot these days; it’s crazy how you can be this independent woman able to do as you please while waiting to earn your mermaid tail, to this. . . dementia at 50!

First, a little history, I’m married. Larry and I met in August 1989, the year I graduation high school. By February 1990 I knew I was in love. He was 38 to my 18, yeah, I know. . . that’s 20 years. My dad and him graduated the same year AT the same damn school! That’s a story for another time.

We’ve made it work somehow; thick and thin, richer or poorer (these days, it’s the later), better or worse, and so on. Here we are 2023 and life has given us dementia, I’m fifty-one, Larry just turned seventy-two in February, and if you’re wondering, he’s the one with dementia, not me. . . but it’s a life sentence for each of us one way or another. 

I’ve always loved writing, I began writing a book about 7 years ago that will most likely never get finished much less, read or published, but that’s life and love, and heartache, and fear. Larry was officially diagnosed with Vascular Brain Disease. . . or dementia February 21, 2023. He had a stroke in 2011, it was mild then, but it sure has wreaked havoc since. In 2019/2020 the neurologist we were seeing told us he was most likely in the very early stages, but Christmas Eve 2022 he went from being able to take care of himself to being afraid to be alone.

Christmas Eve was a nice day. I rode with my parents to our annual family gathering, Larry didn’t go because he had not been feeling well for a few days. We had been busy preparing for the holidays and running around like crazy. He tested negative for COVID so the trouble he was having breathing I chalked up to allergies. Damn, I was so wrong! If only I would have paid more attention before it got this bad, he was struggling by the time I got home, but I had to convince him to go to the ER, finally he agreed. By then the anxiety he was experiencing was so overwhelming for him I ran in to the ER yelling for help. They took him back right away, ran the EKG before they even knew his name! The test showed abnormal heart activity, but that’s all I remember. He was admitted around midnight, I was exhausted so as soon as he was tucked in his bed, I went home to get some rest. I had no idea what was coming.  Christmas morning I woke up alone for the first time in my life. I didn’t call anyone, I didn’t want to ruin their Christmas and I didn’t want to call Larry’s sons until I was sure of what was happening. I shower, get dressed and make my coffee to go. When I get to the hospital and walk into the room, I saw my husband sitting in the chair, it looked exactly like him, but it wasn’t him.  He was broken. I sat across from him on the bed and held his hands.  He cried, I cried, and he begged me to take him home, he apologized for whatever he had done, told me he learned his lesson and he would be good. He went on to tell me the nurses and doctors restrained him so they could hurt him and telling him things he didn’t understand. Seriously, I couldn’t grasp what was happening, but all hell broke loose as soon as I left the night before. He fell asleep for a short while and when he woke-up he had dementia, just as simple and complex as that. He was in Congestive Heart Failure and Renal Failure. His kidneys were stage 3 and getting worse, his lungs were full of fluid, and he was so swollen. None of that matter at the time, the look in his eyes told me he needed comfort more than anything and if he was going to die, I wanted him to have it too. The next few days were tough on us both until I got a good routine down. I’d stay up with him at the hospital at night and a hospital sitter would stay with him during the day so I could go home, get some rest, get some work done and eat. For two weeks things went up and down, the fluid was leaving his body, but his kidney function was now at Stage 4 failure and the dementia got worse. If I wasn’t at the hospital with him he was making it miserable for his sitters. One even looked me up on FB messenger and sent a message asking me to return. At one point, it took several nurses to get him back in his room as he was found wondering the halls naked. He would pee wherever and whenever the mood would strike him ~ in the toilet, a corner, the trash can or just right where he was standing. He was angry and confused every day. It felt like he hated me, and I was exhausted and felt like I hated him too. Discharge day came, I met with all the doctors; cardiology, pulmonology and nephrology and was told he had a 50/50 chance of going back to his old self. Seriously??

Now, we’re home, and life is so busy. The first couple of months was nothing but doctor visits, testing, lab work, x-rays, MRI’s, pharmacy visits, medication changes, more lab work, home healthcare nurses and physical therapy all trying to help. One medication may have been ok for his BP, but it would cause his kidneys to spiral out of control. Fistula mapping was suggested to prepare for dialysis at home, a sleep apnea testing kit was sent overnight for him. He was supposed to test with it for 3 nights and return it, we still have it and he’s only tested 1 time because he’s just like a toddler sometimes at night and I get so tired of arguing with him about it and give up.

• Here’s a sample of a regular day:
• We sleep in separate rooms because he has sleep apnea and we just sleep better like that. I wake up for the final time around 4:30 am with Larry standing over me asking what time it is?
• Next, its coffee, but he takes his differently now, he likes for me to put it in the freezer, so I do. I make a cup for myself and sit down to start work.
• Approximately 2 minutes later he asks me for a cup of coffee because he’s forgotten that he asked me to put it in the freeze, he gets up and gets it.
• He eats two eggs and a piece of toast for breakfast every morning around 9:00 am.
• Next up is meds, he takes his morning pills, a total of 7 and his Tresiba for diabetes. Yea, he has that too!
• I’m still working between all of this also.
• Around 11 he takes a nap and I can work freely for a little while. These days most of my real job priorities are completed while he’s sleeping.
• Throughout the day we go on quick golf cart rides. He loves them as long as the conditions are right; this means the weather is optimal, but he wears his North Face vest anyway, we take our normal route with no deviations and if I stop to say hi to a passing neighbor that’s all it is, a simple hi. My parents are here too, sometimes he’ll agree to stop in there for a quick visit.
• I don’t really cook anymore, he doesn’t eat. He’s never hungry, so when I take the time to cook he turns his nose up.
• Bedtime routine begins as soon as the sun begins to set, it’s called sundowning and it sucks! This is the worst part of the day, for me anyway. I don’t think he realizes how mean and anxious he gets.
• Once he’s down for the night, I relax and drop to my knees asking God to ease my husbands mind and help him get his much needed sleep. Amen!

March 14, 2023

Today was a good day, however tonight not the case. I have been trying so hard to keep my shit together all day; I’ve lost it a couple of times; first, Larry questioned my reasoning for having the kitchen faucet on “shower” instead of “stream”, he doesn’t like shower, but I do and I do the damn dishes so I won that one. He walked off huffing about it though. Next, I bought a bike to get some exercise and to be honest to get 15 minutes alone with my headphones in. I decided to take a bike ride this afternoon, put my shoes on and grabbed a water, told him I was going to ride my bike and before I could get out of the door he said don’t be gone long, don’t stop to talk to the neighbors, come back soon and be careful, don’t talk to strangers! Lord, Jesus help me! Larry went to bed at 9:15, it’s 10:54 pm and he has been in and out of the bed 4 times. He is supposed to be taking a sleep test, and every single time he gets up he calls me. . . “baba”, but I swear it sounds like mama so I go to him, unhook the sleep test shit and he gets up for a few minutes before going back to bed where I hook him up yet again, only to have him repeat this 3 more times. This last time he went to bed we decided the sleep test would have to be another night. Finally, I put my child like husband to bed telling him not to get up again. Tomorrow is another day and maybe I will see a glimpse of him then.

March 22, 2023

Today has been a fantastic day, my husband showed up! We ran errands, he had lab work, I donated a pint of blood. . . you know, trying to pay it forward, and had a late lunch at Sonny’s BBQ. We came home and went for a golf cart ride, it’s his favorite thing to do these days. He has a new bike too, insisted on it, but has yet to give it a ride, I was able to get a bike ride in this morning, it cleared my mind. Larry helped me bring the groceries in and take the garbage and recycling out to the road for pick up in the morning. Some would say this was a boring day, but it’s these days, amongst all the bad days, that give me hope! It’s after 9:00 and he’s been walking the house exercising, thanking God for days like this!

Dementia, it’s not for everyone!

There are 10 warnings signs to look for, what you don’t know is these warning signs can be associated with so many other things too! Larry has exhibited all 10 signs at one point or another. Some signs have stuck around and some pop up on special occasions, and not the fun occasions.

1. Memory Loss affecting day to day activities. Like even though I remind him repeatedly that we need to be ready to leave at a certain time he is never ready.

2. Difficulty performing familiar tasks. Dressing himself is not an option, he can take a shower by himself but now I have to dry him off and help him put his underwear on in fear he will fall down. It doesn’t matter that i have asked him to sit and do it, he doesn’t remember that. Everything goes on backwards or inside out if he does it himself and then he’s mad!

3. Problems finding words or what you want to say. Trying to explain how he’s feeling or what is hurting him is impossible.

4. Disoriented, not knowing the time or recognizing places. We have an atomic clock in the living room, he will look at that and still guess the date or time!

5. Impaired judgement. I can’t say for sure we have experienced this one yet. He does like to wear long sleeve shirts and sweat pants every day whether it’s hot or cold, doesn’t matter.

6. Problems with abstract thinking. Well, all I know about this is he’s never balanced our checkbook so there’s that. 

7. Misplacing things. My sweet husband has done this since day one after his stroke, he has accused almost everyone we know at one point or another of taking something that’s his only to find it later…it may be 2 years later or the next day, but still finds it. 

8. Changes in mood and behavior. Lordy, this is a big one. His mood changes in the blink of an eye, from good to bad usually and sometimes just plain UGLY!

9. Changes in personality. This is the most heartbreaking so far, he is so different from the man I married. I get glimpses of my sweet husband occasionally but those are few and far between. 

10. Loss of initiative. I seen this one coming hundreds of years ago, I’m not sure if it’s in his genes or he just stopped giving a shit, either way it’s always been unattractive to me, now it’s just sad.