All of a sudden...my H went from sleeping very little to sleeping over 12 hours at night and 2 naps during the day and I don't hear him get up in the middle of the night like he use to. I guess what I am wondering is since it happened so quickly is this part of the decline or just a fluke? The first time it happened I was just about to go in to his room to find out if he was alive or not and he woke up. I had a friend tell me that what he thinks will happen to him is that his brain will eventually tell his body not to breath and he just won't wake up. I asked my H to describe what happens right before he knows he needs to go to sleep and he described it as his "mind stops" so then I asked him what happens to his body, he said "his body follows"
deb, mine did this too. By the time he was admitted to hospice unit in the hospital Monday night, he was mostly just sleeping - and not talking at all, couldn't get him to eat. So, he couldn't tell me what was happening. Does he ever hold his head or say his head hurts? DH started doing that last week and is still holding his but doesn't speak.
My DH is not sleeping more, but lays in the bed more with his eyes closed. He is awake. Vickie my DH started a while back holding his head and saying it hurt. I feel so bad for all of them. Sending out (((Hugs))) to us all.......
Lloyd had headaches for a long time. I have read that the plaque builds up on the neurons and the brain's defenses kick in and swelling occurs. That is where the headaches come from. I would give him OTC anti-inflammatories. It helped. The Neurontin helped even more. I personally think the excessive sleeping is more of a sign. Lloyd seemed to sleep more and more. His demise started with a seizure, a fall down the stairs and through the window in the landing, and the ER giving him TOO MUCH Ativan. Five days later, he was gone. I really believe it was the Ativan because after the fall, the grandsons took him to the bathroom to check his injuries and he was standing on his own. It seemed like after the Ativan, his mind was just gone.
My DH will take spells where he falls asleep in the daytime. Usually after a very busy day. I think that he concentrates so much when we go somewhere or are around a lot of people that it wears him out. But he has complained of head aches also. Long before his diagnosis he would take something for a headache. I wonder if this is an early sign of what is to come. He also use to say his head tingled, like a shock going through it. It wasn't a TIA or mini stroke, just a tingling. His headaches would be really bad at times. He said when he was young he had migraines, but his mom said he did not. He swears that an OTC called Vanquish is the only thing that will help his head aches.
My DH is in a hospital bed at home and sleeps most of the day, especially after any activity like the hospice aide giving him a bed bath, or me changing his "diaper" or feeding him. I sit in his room part of the day and I do think he knows I an there but he never says anything. He does have twitchy muscles in his legs. The hospice nurse said to give him extra strength tynolol. No headaches that we can see.
Vickie, yes he does hold his head, I don't know if it is because his head hurts but I will ask him and see what he says. He doesn't talk much but I can get him to say a few words if I keep trying. What he does is he makes a fist and puts in under his chin. In the past he has told me it is because it helped him breath but...He has been doing this for quit a while now. It takes a lot of effort for me to get him to talk and sometimes I just don't have the energy! I should know everything about him so that I can help him but I am just so tired of all of this. I need to take care of myself too and I have been sadly lacking.
Deb, my husband used to get up every day at 4:30am. The last few months he now stays in bed until I get him up. He's not sleeping but just laying in bed...
My husband sleeps a lot during the day. He is fatigued, but I don't know if it's boredom or just part of the disease advancement. He has been complaining of headaches for years and I attributed it to arthritis in the neck. Possibility they could be more tired as the are struggling with the input and it is wearing them out. Personally I think it's all of the above.
Has his medication changed? Of course now that the winter is upon us the days are shorter and this may also come into play as well.
When my husband was on Namenda and Aircept he slept all the time and had severe headaches when I took him off things went back to normal. I though it was an interesting issue.
Sherizee, in hindsight I wonder if all the meds were worth it. I don't know if the Aricept and Namemda slowed it down, hurried it up, or just made him foggy. I'm just glad it is over and I know I did the very best I could 99% of the time. I was still 1% bitch which I will be eternally sorry for, but he knew I loved him more.
They go through periods where they require little sleep and then periods that they sleep most of the time. You have to adjust your sleeping habits to match theirs. When you can't, you can do what I did, get key only doorknobs for the bedroom!! He couldn't leave if he woke up and I didn't...We were both safe. He would give up and come back to bed. We can't change their ever changing habits - we adjust our plans to ensure their safety and the safety of our homes. Most changes last 4 - 6 months, then something new will come along - like leaving the water running (they love the sound of running water!) - or following you around like your shadow (they need the security of seeing you) - to name a few! Life was hectic and stressful, but I can look back now and smile over some of his antics - which he had no control over. It has taken two years to feel this way! Good luck!!!
I don't know if the medication kept him from being bed bound faster or not. It did NOT slow down the disease. He was gone 4 1/2 years after diagnosis, but 6 years after I first noticed any symptoms.
Just make a bucket list for AFTER and think about it when the stress gets you down. I've now marked 5 off my bucket list - got 7 to go!!