sigh.
A friend told me about someone they know with Alzheimer's. He had one of those rare moments of clarity we see with dementia patients. He told his son that dementia is like being in a fog. You know you are in a fog, and you are trying to get out, but you can't find your way and the fog is so thick and confusing you get turned around and lost.
I so appreciate hearing that.
It helps me understand Rob more.
Only, he is pretty much in the fog all the time now.
His repetitious phrases are about all we hear from him now. The same things, all day.
He starts over again after 5 minutes or less.
He is constantly saying Hi to the kids. They are like - we've been sitting here the whole time.
But for him, between the fog and the short term memory loss, he is starting over.
He has a reset button being pushed every few minutes.
When he isn't telling us the same phrases over and over, he is now whispering facts to himself.
I am 49. I have Huntington's. Today is Wednesday. I have Meals on Wheels.
OR, because he is trying to keep track, he asks us the same questions over and over and over.
"are you going to work today?" yes, it's Wednesday, I have to work on weekdays.
"are you going to work today?" yes, it's Wednesday, I have to work on weekdays.
"are you going to work today?" yes, it's Wednesday, I have to work on weekdays.
"are you going to work today?" yes, it's Wednesday, I have to work on weekdays.
"are you going to work today?" yes, it's Wednesday, I have to work on weekdays.
"are you going to work today?" yes, it's Wednesday, I have to work on weekdays.
"are you going to work today?" yes, it's Wednesday, I have to work on weekdays.
"are you going to work today?" yes, it's Wednesday, I have to work on weekdays.
"are you going to work today?" yes, it's Wednesday, I have to work on weekdays.
"Did you sleep okay?" (at least he is asking) No, I can't sleep in the bed with you.
"I like your body heat." or "I have Huntington's." or "I like sleep"
"Did you sleep okay?" (at least he is asking) No, I can't sleep in the bed with you.
"I like your body heat." or "I have Huntington's." or "I like sleep"
"Did you sleep okay?" (at least he is asking) No, I can't sleep in the bed with you.
"I like your body heat." or "I have Huntington's." or "I like sleep"
"Did you sleep okay?" (at least he is asking) No, I can't sleep in the bed with you.
"I like your body heat." or "I have Huntington's." or "I like sleep"
(at least I get a little variety with this one...ha ha)
Whenever someone leaves the house, "where are they going?"
then repeatedly, "So....whoever had to go to wherever?"
Paperwork for my long term care insurance is sitting on the dr's desk...waiting for some forms to be filled out and signed.
I had a cabin reserved earlier in the month and I just couldn't figure out how to bring Rob and make it work. I sold the reservation to a friend.
Rob's IBS is becoming worse and now incontinence (especially digestive emergencies) is getting more frequent. He attempts to clean up behind himself as he changes clothing, but he isnt' physically or mentally capable of either. I always have a mess waiting for me on the days he has issues. I am tempted to put him in a diaper or depends, but...I'm not sure he could clean that up by himself either. I'll give him a couple more weeks before I make a final decision on that.
I had another cabin reservation coming up, and we decided to give it a whirl to see if we could take Rob camping.
He did it...but...it did not go great...so...I'm pretty sure that was our last camping trip as a family.
It was lovely to go. I did enjoy parts of it. But Rob is so high maintenance that it is just too hard to do. He needed his nap, so we went outside in the heat and got ate by bugs for 2 hours, but when we went in the cabin, he said he didn't get any nap (oh we heard him snoring for 2 hours). He didn't sleep well, and his flopping and twisting and turning with the slickery sleeping bag was just too noisy. He fell out of bed once. At 1:30 he made me walk him outside to pee. We all had to help him with all of his food, hygiene, teeth brushing, pill taking, clothes changing, etc. I was so happy to get him out in the woods and proud of him for doing so well. We get out in those situations and his phrases change. We get to hear new things. We stimulate his story telling and conversations. He comes out of the fog - briefly - momentarily - then he sinks right back in. So, for his sake, I'm glad we took him. But...I just don't think we can do it again. It's too much work, and no one sleeps except Rob.
Once we get home, he seems to sink further into the fog.
This is where we are...
Whelp...we are at this point. I am prepping Rob for tomorrow.
Rob is having a hard time keeping track of his days. He repeats the same phrases over and over all day long. He does not know how long (or if) he takes a nap, even if he sleeps for 2 hours. Tomorrow he does not have Meals on Wheels for lunch, which has not been a problem. Everything in the fridge is labeled IF he looks through it.
I've spent the last 2 weeks working on getting my long term care insurance fired up so I can hire a part time caregiver while I am at work. I'm just waiting approval now. Not sure how long that will take...
In the meantime, if anyone would like to stop in for an hour or two in the afternoon and take him for a drive or a walk around the block, play a card game (he can remember how to play 31) or sit in the backyard or livingroom and try to get him telling stories (don't worry if you don't understand what he is saying), I created a sign up to help me keep track. We have been blessed with an abundance of friends and family who all want to help...so many, I don't know where to start. (Thank you all so much! Your love and compassion are overwhelming!)
You never know, he might perk up and get you laughing. Around new people (not us) in new places (not the livingroom) he sometimes comes out of the fog and can try to tell a story or memory.
Having someone every day will overwhelm him at first...and he has a very rigid (but empty) schedule. But...we'll try it...cuz why not🤷♀️
I'm only starting with a couple days these next 2 weeks and we'll see how it goes.
I picked up the insurance paperwork. I am sending it in tomorrow. We need someone watching him while I am at work.
I woke up having a panic attack. Panic attacks make my chest feel tight. Immediately, I think, "Oh now, what if I have Covid?" and my concern is not for myself, even though I have some lung issues - but my concern is - my daughter's job, my son's basketball, my son's summer vacation plans, my co-workers and my job, and all of these things - which only increase the anxiety. Then I get depressed. I decide to work from home. I crawl in bed and sleep another couple of hours, but can't really get good rest, because of the anxiety. Then I feel guilty, because I trust God with our story. But I don't feel like I am glorifying Him or trusting Him if i am stressed, depressed and anxious.
Meanwhile, Rob is rocking back and forth on the couch asking me about meals on wheels for the 87th time.
It will get better. I know it will. I am also trying to remain positive and focused on the known future in Christ. The unknown, ever changing, scary world around me, as I watch our country fall apart, and so much hatred and violence is not MY ultimate future. I need to keep my eyes on Jesus. He is coming back to set up His Kingdom...and what a glorious Kingdom that will be. Praise God! That's the goal. I might be sloggin through the mud and muck and mire of life right now...but Jesus is standing in front of me, leading the way, calling us home.
