I am seeing some changes in my dh. For some time now, he's sleeping a good portion of the 24 hours. It's 5:20 pm now, for instance, and he's still asleep with his afternoon nap. He gets up about 10 am, has his morning ritual of pills and insulin, and then we go to lunch at the senior citizens center. After we get home, he goes back to bed for a nap. I would say that he sleeps about 16 hours of every 24-hour day. Maybe more.
Another change is that for some time now, he hardly talks to me. We can be eating lunch, and he doesn't say hardly two words to me. No effort at any conversation. Yet, he can readily talk if I get him going on something that catches his interest, but then it can be a short conversation.
His demeanor is flat, with that dementia look in the eyes. When he laughs, and he does if I say something funny, his demeanor is still removed somewhat and flat. He spends a lot of time in his recliner asleep with his head hung over to the side.
He was dxed about three months ago with mild cog impairment (MCI). He has exhibited all of the symptoms of bvFTD for the past 23 years. Yet, the neuropsy and his neuro didn't take the behaviors into consideration, only his testing, which he did pretty well on.
What is your opinions of his current behaviors, please? It seems to me that he's slipping into stage 5, latter phases of that stage, of bvFTD, or perhaps stage 6.\
I don't know Hanging On. Jeff got real quiet and sleepy for a spell before he went utterly batsquat crazy. But, as they say, it's different in every case. If you perceive slipping though, odds are...he's slipping. Sounds like living in his brain is just tiring him out, which tends to happen in this gig.
I don't remember how old your husband is, but I see by your profile that you have been posting since 2008. My husband had Alzheimer's diagnosed when he was 87 in 2007, and held pretty steady except for the last 6-7 months when he went quickly from about stage 5 in mid-2010 to his death at age 91 in early 2011. So I think that age has a lot to do with it. Many have said that each case is different. Did you do the calculator test ? I did it the other day at his different ages, and it was surprisingly accurate. I think that is hadn't been for the Alzheimer's my husband could have lived for more years because his lungs, heart, kidneys and liver were in good shape.
My dh just in the past week is coming out of the phase of sleeping between 16 to 20 hours a day. This went on for about 4 or 5 months. I just let him sleep and after the first several months I no longer gave it much concern. He just turned 65 and was dx in 2007. Some said maybe he was bored, and he probably was and still is. But, he can't do anything except watch TV which he only understands a small part of what is going on.
My dh also was always a great talker. We both could talk and talk when we went out to eat. Now, if we go out to eat and I don't say something he probably would never say anything. I think they don't know how to make conversation any longer and they don't know how to bring up a subject, any subject. Also, they have little interest in anything.
As some would say...these things are just part of it....makes one so sad doesn't it? At least there is no pain.
DH will be 82 in July, Mary75*. In Nov. 2011, I had to call the cops. He said he was going to shoot me and the cops. He went to the hosp and had a med adjustment. It was an exciting afternoon. He's been extremely difficult ever since I've known him, some 25 years now. Yes, I did do the calculator test. Interesting.
I've begun looking into respite care, so I can get some much needed rest away from him. He's willing to go. That's good, and a relief.
I just really believe that DH is towards the end of the bfFTD continuum, and is not in MCI. Those abusive behaviors that so many of us post about on this site have been a part of my life ever since he's been in my life. I think what I'm seeing in him lately is his shutting down, and giving up. He's not interested in his beloved projects hardly at all. Just sits around and sleeps in his chair, or in his bed.
He could have bfFTD and be in the early stages of Alzheimer's.
As for talking, we can sit here for hours - me on computer, him doing word search and both watching TV with nothing said unless I start. If he does say something is either something he said before or he will be say something dumb. Of course, I don't let him know that. Now that we are back in the park he is going to see his buddy here. I know he repeats everything and they guy doesn't seem to mind since he has some problems too but his is mostly due to drinking.
Hanging on, Lynn went through this as well. Now that he gets more stimulation at the nursing home he doesn't sleep as much, but does still sleep a great deal. I think Emily is right, it must be very tiresome living in their heads. Sleep is a relief I would imagine.
Please do look into the respite, take some time for you ((hugs))
Hangin ON,A year ago my DH was sleeping 15-16hrs. a day. To tell you the truth,I was happy with that.I feel he was in stage 5 then,now I have trouble getting him to go to bed.He also went thru the no conversation stage.He talks a lot more now,but can'tunderstand what I say to him. Ijust figure it's part of the disease and go with whatever pleases him. I want to make whatever time he has left happy for him. I know he is frustrated by all that is happening to him.
Lloyd's sleep depended a lot on the medication he was taking. When he took Keppra and Depakote he would zonk out anywhere. He took those within the last year briefly. Two years ago he couldn't ride in a car without falling asleep. Now he will take a little POWER nap in the middle of the day. I just started him on Dilantin yesterday and had no sedative effects. I was surprised. It seemed like he was seeing things or some sleepy part of his brain started to wake up. Absolutely NO sleep since he took the first dose. Au contraire! I found him at 5:15 this morning standing in a puddle in the kitchen. Had that deer in the headlights look on his face. Stripped him, scrubbed the floor, brought him upstairs, bathed him, put a Depends on him and tucked him in. He actually saw the displeasure on my face and made the same face back at me. How funny! God, what a grumpy bitch I must appear to be at times like these! Poor man got a life sentence as did I. At least Dilantin hasn't turned him into a slobbering zombie!
Update.........Lloyd just went in and sat on the toilet and peed. Didn't get his Depends down far enough, but nonetheless! I have been putting him on the toilet myself on a schedule for the last year.
maybe the dilantin is helping him. its always good to see Any improvements in this dept! i do know after a couple doses of neurontin my DH seems clearer without the tics.
So far...so good. This was the first time he woke up without twitching and jerking in a week. Of course, it was almost noon after the 5 AM pee fiasco. If the Dilantin works, I will be more than happy to say I was wrong for doubting!! So I guess we will forego the quest for Neurontin for now. I was all ready to go to the family doctor tomorrow and make my pitch.
Yeah, I too don't mind the sleeping. It gives me time to myself. I'm just trying to put two and two together, ie, the sleeping and the lack of talking, to come up with some idea of where he is stage wise.
Well, Divvi, the first day of the Dilantin was good. The second day all he did was sleep and he could no longer navigate the steps. Last night he was up all night. I spent the night reminding him it was night and time to sleep and please lay down......for what seemed like a thousand times!!! Called the doctor and left a message saying that I would not give him any more until I heard from them. I just hate when you call and you know someone is there and you get a message if it is an emergency to call 9-1-1. Jackasses. Venting. Sorry.
maybe talk to dr about reducing the dose? if they sleep all day they will be up at night. no brainer. haha. mine did it yesterday with a pedi dose of methadose for the pain for contractures. the tiniest dose that could fit in the dose and it caused him to sleep most of the day. but he did sleep at night. catch 22. its ongoing. i may opt for just childrens tylenol for pain or a suppository as needed.
hes probably getting too much. these guys dont need full doses anymore.
The Dilantin he has is in a capsule and I can't get the damn thing open. It's been a day since I stopped them and he is so much better without them. I think I will take my chances. He is still asleep so he had a good night...almost 7 hours of sleep so far!! If I don't hear from the family doctor today, I will make an appt and ask for Neurontin. I wish I knew someone w/o insurance who could use all this Keppra, Depakote sprinkles, Depakote, and Dilantin and Aricept. Of course, it's illegal to give away meds, isn't it? Dirty conniving pharmaceutical companies!
The Dilantin he has is in a capsule and I can't get the damn thing open. It's been a day since I stopped them and he is so much better without them. I think I will take my chances. He is still asleep so he had a good night...almost 7 hours of sleep so far!! If I don't hear from the family doctor today, I will make an appt and ask for Neurontin. I wish I knew someone w/o insurance who could use all this Keppra, Depakote sprinkles, Depakote, and Dilantin and Aricept. Of course, it's illegal to give away meds, isn't it? Dirty conniving pharmaceutical companies!
i use the liquid neurontin aka gabpentin generic. its easier to dose and can be controlled. you may need to ask for it or it will be capsules as well. sorry to hear the dilantin is having side effects too but keep in mind they probably all will have some effect on him. we just chose which is the lesser of all involved.
I wish I could get all his medication in liquid form. He has taken to chewing them up most of the time. I put them in his mouth and give him water. He drinks the water and I ask him if they are down and he says "yes". Next thing ya know he is chewing and then the taste kicks in. What an awful face! I don't think the Dilantin helped, but he seems to be getting worse. He seems to roam the house like a cat with its whiskers cut off. The Pisa syndrome seems to be kicking in. I worry so when he slumps over that his back will start to hurt him. And then sometimes he walks with one shoulder higher than the other. He is starting to have more accidents and has difficulty eating sometimes. I am calling the family doctor tomorrow and seeing if I can get him in so I can ask him for the Neurontin. I just want him to be comfortable.
most drs will rx an adult dose right off the bat. i found a smaller dose 100mg to start worked to get DH used to it first. you have to ask for the liquid neurontin i think the dr can order it. i hope it helps. its sounding like your DH has these symptoms without the meds on top and and they probably make them worse if its a large dose. talk to his dr and see about using a tiny dose for a few days and see how he reacts. good luck. divvi
divvi, I have had to stop the Dilantin and the Neurontin. The Neurontin may be perfectly fine, but I think I need to wait for this rash to go away! A day after I stopped the Dilantin I found a rash from his neck to his groin and from his hands all the way up to his armpits. It has been 3 days since the rash and our PCP ordered the liquid Neurontin and I gave him half a teaspoon and the rash got worse. It just may be the Dilantin working its way out of his system. So-o-o I will wait for the rash to go away and then I will try the Neurontin again. I hope it doesn't take long because he is not sleeping.
i am surprised the dr didnt give him something like benadryl for the rash ? poor dear, i hope it clears up soon. yes i would think being cleared out of all meds would be critical. best of luck
with this rash issue, if it were me, i'd wait a while after the rash cleared up to start a new med. sometimes these meds can stick around in the system for a bit. i hope hes better.
Divvi, the rash cleared up a lot and I started him back on the Neurontin - half a tsp at bedtime. He is doing well. He sleeps peacefully and minimal jerking when he wakes up. The jerking in the morning used to be so violent and now it seems to be more of a twitch. That twitch can still send him to the floor and I so worry about him breaking something when he falls. Oh, how to keep him down!!! Actually the only thing that works is laying down with him. He has gotten so clingy lately. He used to be satisfied just being in the same room, but now he wants to be touching all the time even if it's just leaning against me. I guess I have to get to the point of savoring the fact that he is still here....right here!
Linda...hugs and so sorry you are having these "problems" with you dh. What we must all go through to make them comfortable and comfort them when they us so close takes it toll.
linda thats similar to how it worked with us too. stopped the more aggressive jerks into twitching which is manageable. but yes DH can still have one sometimes in th shower with aide and it will drop him if we arent careful getting him on his chair. seems our spouses have the same kind of myoclonous.! the neurontin has been good in as it has had minimal side effects compared to others tried. i have used it off/on for 6yrs plus. and maybe you will notice he sleeps a bit better with the tiny dose. the morning jerks are much less TG. eventually you will need to up the dose a bit more as they grow tolerant to the same dose like all these other meds we use. i got up to 400mg /day at one point. then now we only use like you half a teaspoon. i think its worth a few minimal side effects that may go with it, to releive the hard jerks that seem to distress and cause fear and maybe headaches in DH. after all our jobs are to make them as comfortable with whatever the ailment. i was also told early on to not treat at all could lead to having grand mal much much worse, and i didnt want to get that far. good luck. i hope he fairs well with it.! you can use every other day if it builds up in system ...yes keeping them down if they are a fall risk is a huge issue. get a small gerichair with wheels *medicare may pay) get a rx from dr--you can move around and a table tray to hold him in:) in the NH its not allowed you know but at home... we do what we have to! while hes in with the table tray locked in, give him lots of treats and things to entertain. i found it was a huge safety factor for us both. divvi
Divvi, I got Lloyd a transfer chair, but had to pay for it. I was told that Medicare will only pay for one ambulatory device every two years. So our one was a walker that he never even used one time. I tried to use the chair in Florida on vacation, but he would only stay in it for walks around the neighborhood. I belt him in, but if he stands up; the chair collapses behind him. We are still on the half tsp of Neurontin. He is still twitchy in the mornings, but not really jerky. And the side effects are nothing compared to those from sleeping pills and he is sleeping through the night for the most part. I think the Marinol has really helped the most with the headaches. His headaches are nearly nonexistent since he started the Marinol. Thanks, JudithKB and Coco for the warm thoughts. Lloyd is sleeping a lot more lately. I have noticed after his morning shower or after breakfast, he has a tendency to crawl back in bed for a nap. It really used to annoy me when he would crawl on the freshly made bed, but I have had to get over that. Now if I can get over the occasional agitation when he pees on the floor. I do try to tell myself it is my fault - that I should have gotten him there sooner. I do try to keep him on some sort of bathroom schedule or he would be completely incontinent. Divvi, I will try to find a sturdy table tray for him. It would be such a blessing to have him sit for any length of time.
((Linda)) isn't it amazing how much we change, how what we consider a blessing changes..... You are doing a fantastic job and have my admiration! I am glad to hear the Neurontin is helping some and that the Marinol has helped with his headaches. I do hope the table tray will allow Lloyd to sit better. ((hugs))
Anyone on this journey deserves admiration. I am fortunate here because I have family living with me and my best friend is basically living with her mother who has AD. She and her mother are all that is left of her immediate family besides children and grandkids. She has buried her dad, her brother, her sister, and 3 husbands and is only 62. So I feel lucky compared to her and a few others. (((Hugs))) to you, Nikki and Divvi!
Divvi, I attempted the every other day thing. I didn't give him the Neurontin last night and he had a seizure this morning. So-o-o he will be getting his Neurontin every night. He is still taking a half a tsp.
hi linda. sometimes its needed as you see to just make it part of his daily schedule. i am sure your dr put the correct dosings on the bottle. i try to give as needed but last night remember it was a super moon!! it affects my DH myoclonous so much worse! like you we had a bit of jerky this morning but its settled by the time hes up for breakfast. so strange that others have the same symptomology huh? i do want to try to keep the jerks at bay as you see they can become full blown harder type seizure so use whats right for you.! i am so glad to hear its working out for you and him linda. like we say its trial and error to find the right meds! divvi
Found out yesterday DH has A-Fib. Not going to give him any blood thinners. Also has Parkinsons symptoms - no MRI either. I have suspected both of these, so this just confirmed my thinking and explains a lot of his behaviors. Another downward spriral.
Not nice to hear, is it? I know your dh and mine are close in age and about same stage of Alz. I took dh to pcp last week and hoped he would agree with me about canceling procedure to have the batteries replaced in dh's defibrillator. My kids all agreed with me and the pcp also agreed. My fear was the anesthetic and I didn't want to take the chance of dh's quality of life getting worse. A steep decline could possibly mean dh would not be able to stay with me. PCP told me to keep dh out of the hospital unless absolutely necessary. No more heart, lung, stomach, kidney or liver procedures. Now dh will have only one physician, the PCP. Now I feel as if I have some control over what goes on. Like you, Vickie, I am doing everything possible to make dh's life happy and fairly healthy. He would do the same for me. I will keep you in my thoughts and prayers. We will all get through this together.
Vickie, My DH had by pass surgery in 2005 ( that is when slight memory issues started to present) and he went into A Fib...then last Feb when he had his annual holter monitor test it was discovered he somehow is back in normal rhythm! He is on pacerone for it.
Yesterday he went to breakfast with his pals...had a good time...one came with him to the house ( our next door neighbor who went along) and DH had one heck of a time getting in...I think I need some sort of ramp or something now... and our friend said " He doesn't walk so well now"...no kidding...but try to get him to use is cane ( and he has several stylish ones)..but it isn't macho! STUBBORN TO THE NTH DEGREE!
Today in the Wall Street Journal there was an article about the St. Jude Medical defibrillators (my dh has one). Some patients are opting to have them removed because of problems with the leads. What gives? Are they using devices which are not fully tested? Another decision to make and I see no other solution but to just take our chances with the defibrillator he has had for the past 6 years. No problems have surfaced and device has never fired. DH never had A-fib to begin with. Implanted because he had insufficient pumping power due to heart attack in 2002. Alz symptoms began shortly after. Thank you, PaulC, for the encouragement.
Mimi - maybe when his buddies come to take him they all can use a cane. You could have a selection right by the door. That would make quite a picture wouldn't it? :-)