Dementia at Fifty!

I watched Larry for a few minutes as he fumbled with his water bottle, he kept turning the top as if he was unscrewing the lid, but the lid wasn’t on. I told him the lid was not on, and he could take a drink repeatedly until he finally just turned it upside down to see for himself. . . this is dementia, and it pisses me off. As I cleaned up spilled water from the floor, him, and the recliner he asks for another bottle as if nothing happened. YES, this is dementia, it has taken over our lives even more in the last few weeks. Larry suffered a stroke on October 26th while sleeping. He woke me yelling he couldn’t feel his arms and legs, I went to his room and found him standing frozen and unable to move. His arms were outstretched, and his legs were stiff as a 2×4. His neurologist sent him for an MRI the following Tuesday to confirm it was in fact a stroke associated with AFib. I thought the watchman he had placed in July was supposed to prevent this type of thing from happening, but it’s not 100% especially for someone with dementia that has issues expressing his emotions now and suffers from agitation, aggression, paranoia and everything else his mind has trouble understanding. We had already had this appointment scheduled for weeks because of the subtle changes I have seen recently, mainly paranoia and aggression. I have said it before, but it must be said again, Larry’s neurologist has been a blessing to us, he’s so knowledgeable about this disease and offers much needed insight on how to deal with things. Moving forward he recommended Haven Hospice come in for an assessment on Larry and because I value his opinion the referral was made and by Tuesday afternoon Haven called and set up the evaluation for Thursday, October 31st. Monica arrived that morning with an armload of information for me and sat at my dining room table with me while I absorbed all she had to say, I cried, she hugged me, and Larry just looked on as if we were bothering him as he watched Two and Half Men. I’m exhausted, I cry a lot these days, I just can’t stop it or help it, I have bags under my eyes from lack of sleep and I just can’t take it anymore. I second guess every decision I make for Larry, at this point I can’t think straight. As Monica explained what exactly hospice care would provide, I made one of the hardest decisions I have ever had to make, it broke my heart, but at the same time a weight was lifted off of my shoulders, I’m no longer alone in making decisions for Larry, they are here to help him and take some worry off of me. For this I am beyond grateful. I am still so sad though, I can’t shake it, I pray and pray, one day I will be ok but the next I’m not. This isn’t easy no matter which road we take. Anyway, back to Monica, she was here about 2 hours and when she left, she said someone would be in touch in the coming days to set things in motion.

Friday, November 1st I woke up to Larry lying beside the bed as he had slid out of it and couldn’t get back up. I was trying to get him up when I met Sheri and Lynn from Haven, they texted but I had not seen the message before they were knocking on my door. I answered in tears as they came in and took over for me. Then we discussed what our new plan moving forward would be. It was a rough morning, I cried ALOT that morning sitting at my dining room table with Sheri and Lynn sitting on each side of me, they went over his medications, sleep routine, bathing issues, food, exercise and anything else you can think of including a DNR ~ Do Not Resuscitate that we had to discuss with Larry, it was hard but the way they explained it to him helped him to understand why he needed to make the decision instead of leaving it to me “when the time came”. I also reminded him of the need for this decision when my momma was dying and how hard it was for me to make that decision, let alone the guilt I carried afterwards, but by the time they were leaving I felt safe.

Since then, we’ve also met the Haven Chaplin, Michelle, she visited with us for over 2 hours recently. Michelle was an active-duty Army Chaplin overseas and had the calling for hospice. She is amazing, she sat and talked with us and prayed with us. She’ll be back for visits periodically or when we request a visit. I’m looking forward to it. Finally, the last person we’ve met through Haven is Larry’s CNA, her name is Shakira, she’s been working with Haven for 15 years and has a knack for making Larry feel comfortable. She comes in to help bathing, dressing and cleaning his room, or whatever he needs done. Larry was really apprehensive about it when I first told him, and I totally understand that, but me helping with showering has proven to be a struggle for both of us, so I begged him to give her a try. He agreed and I heard them laughing and talking the whole visit. Another positive direction we are moving in to ensure he is getting the proper care he deserves!

As Friday progressed, I saw a Haven Hospice van pull into the drive, the man getting out, LJ, approached me asking where everything went? I must have had a confused look on my face, and again on the verge of tears and he said he had a bed, oxygen tanks, a wheelchair, a cane, and some day-to-day supplies for Larry. I blinked and the tears are rolling down my face again! He put his arm on my shoulder and said “Look, he may not need all of this right now, but it’s better to have it and not need it, than to need it and not have it”, looking at things from that perspective helped a lot. LJ had the new bed set up in no time, it even came with a set of starter sheets. FYI. . . Larry loves his new bed and the other stuff; well, it’s tucked in a corner of his bedroom in case it’s needed one day down the road.

It’s been a tough few months, one of the hardest things about dementia is 24/7 it’s all about that person, Larry is pretty much oblivious to how this is affecting me, and I totally understand that it’s not his fault, it’s the disease, but I’ve really felt myself slipping away recently and needing to recharge. It was hard for me to reach out and ask, but I’m so thankful Larry’s two sons were completely on board to come spend a night with him so I could get away for a night to enjoy some good food and company, my girlfriends, the ones that will make me laugh or cry with me and show no judgement. I’m so thankful, first that the boys were able to come spend a day and night and that I was able to head to the beach for a little R&R. It rained the entire day, but the time away, even just one night, was what I needed. Thank you to Larry’s boys and thank you to my GIRLS who knew exactly what I needed. I love you all!

Larry’s brother has been sick and in hospice care for a couple of months, our plan was to get Larry well enough to make the trip to Michigan to say our goodbyes to him, but between his hospital visit and the stroke I knew this wasn’t possible, I told Larry we would go as soon as he was healthy enough, but Boomer passed away peacefully at home surrounded by his children and his sister before we could go. He’s no longer suffering and reunited with Carol, his wife that passed away June 2023 during their Alaskan cruise. He will so be missed, and breaking the news to Larry was very hard, I was thankful Larry’s sons were here with me. Larry took it as best as to be expected I suppose, he hasn’t brought it up since we told him, and I don’t know if it’s because he is processing the news or if he doesn’t remember it. Either way, I have decided not to bring it up unless he does, as I am sure his heart was broken into a million pieces by the news and maybe if he doesn’t remember that’s Gods way of protecting him from further heartache.

Thanksgiving is approaching fast; it will be here before we know it and I’m looking forward to having family all together here at our home this year. We certainly have a lot to be thankful for.