Hi everyone, please let me know if any of you have gone through this. My DH who is in about stage six is now doing things I thought we were done with. All of a sudden be starts to sundown again. He also started to get up at night and put his clothes on, well some of it. And wanders all over the house. I thought we were finished with all this. And I thanked God for it. He complains about the bed not beeing right, we went through this months ago and it went away. Anyway I feel like I am back in hell, I thought we finaly have come to a breather stage, we start all over again.
I too went through the same thing with my DH and he is still in Stage 6. He would wander all day and then sundown at night. To me this was one of the worst stages I had to endure. He would wake me up at night and tell me to get up as we had to go to work. It would be 3AM in the morning. He would leave the water running, move things around in the house, etc. There was no way I could sleep with all of this commotion going on. Then, there were days and even months where he would not wander quite as much. But, unfortunately, for me the wandering did start again in Jan. of last year really bad and he would walk out of the house and just keep going. It was so scary. He is much taller than me, so, when he wanted to go, I would try to re-direct him and sometimes it worked, but, then there were the times it did not and he just kept walking. One night I ended up calling 911 as he was not coming back. They did such a good job calming him down. It was a coincidence, but, the lady police officer that responded, I found out later, her mother has AD and is in the same home my husband is in. At night I locked our doors so he could not get out and wander away just in case I was lucky enough to fall asleep for an hour or two. At the beginning of last year he started having problems walking as he would shuffle his feet and sometimes trip and fall. I had to be very careful of this also. In May of last year, I had to make the very tough decision to place my LO in a NH as my health was starting to decline. In, Sept. of last year he got his feet tangled up getting out of a chair and fell. This time he broke his hip. He is in a wheelchair and has now lost his ability to walk as the disease progresses. We tried months and months of therapy, but, to no avail.
He seems to be in a very different place with his AD now. When I go to see him everyday, he is usually smiling, watching TV, or just snoozing. He also loves music, so, they take him into the activity room when they have something special with music. He just smiles and claps. I feed him at least one meal a day, if not two. We go for strolls around the grounds, etc. One year later things are totally different now. Who knows with AD, what to expect.
I will pray that your DH does not keep up the wandering and settles back again. My stress level was off the charts during this time period and I am sure yours is also.
Thank you Kay Kay for your response. What I can't understand is that we went throught all of this month ago and he finally went back to sleeping most of the night, unless he had to get up for toilet visit. I was so excausted during that time. But now it seems to start all over again. The doctor has been telling me for month to start looking for a NH for my DH. But I had no way of looking, since I'm his only caretaker 24/7. I am finally getting some respite and maybe I will be able to handle it again. I had no idea that when one phase was over it could come back and start all over again. Yes my stress level is way off the charts. And I'm beginning to get tension headaches, wich I never had before.
carma - Did you know most states allow funds to get respite care? I think there have been threads about that in other discussions. In New Mexico we were told they provide $300 twice a year. It would at least give you time to check out NHs.
Yes, frand is correct. Check with the Alzheimer's Association; Elder care services in your area; Medicare; and your secondary insurance if you have it. Respite services are available. It sounds like you need more than that - but at least it will allow you to check on NH's.
AD is an unpredictable roller coaster ride - so yes, stages overlap, come and go.
Thank you all for your responses. I got a phone call a few days ago from the Senior Services. I had given them a call last year in the spring. The lady told me that our name came up on their list and someone would come next Tuesday to talk to me and ask me some questions. This is for respite care. She told me that I would be eligable for about 200 hours this year. I hope that I can get it, this way I can look and check out some of the NH in our area. I am just so darn upset that those things I thought we got through allready rear their ugly heads again. I don''t know if you all remember me telling you in an earlier post that I quit smoking on Christmasday last year. And my nerves are so frilled that I allmost smoked a cig.from my neighbor. But I didn't, I came awfull close to it. But I quit for my DH sake, so I guess I better stay strong. Thanks again for all your input, I needed it in the worst way.
Respite is supposed to be for respite. You desperately need a few hours of peace to recharge your batteries. I'm really worried that you need time off but won't get it.
When the social worker shows up tell her you need help locating a good NH with an Alzheimer's unit. If nothing else, you will get a list of nursing homes that take Alzheimer's patients and know how to handle them. It will cut your search down by at least half. You won't go looking at places that can't serve your needs, or spend hours on the phone with the phone book in front of you calling NH that can't help you.
If it works out the way I think it might, she will actually be able to locate a short list of places and might even facilitate the move for you.
Starling, i live in a small town and there is not one NH that has an Alz unit. they have their regular patients and the patients with Alz and Dementia together. The Assisted living facilities have Alz units. But I cannot aford their prices. But I will do as you succest and ask and see if they can make a recomendation. I will keep you all posted.
carma, while you are talking to that social worker, find out if there is any way to get help with paying for a Assisted living facility. You might qualify for more than you think you do.
Update on the respite care. I was told that we would get up to 208 hours of respite during a year. We would hve a co-pay but I don't know how much yet. She will call me in a day or two and let me know. Starling, I can get help to pay for Assisted Living, but it would not be enough because I would still have to come up with another $4000.00 a month, which I don't have. We live in a small Town and we don't have a lot of choices.I will look into some facilities further away from here, once I get some time off for myself. But I will do it slowly, I need some time for myself to recoup from all the stress. My DH is back to sleeping at night. I don't know how long this will last, I hope we have no more sleepless nights. The doctor put him on Namenda besides Aricept and Risperdol. I don't know why she waited so long to give it to him. I guess it's because he is declining so fast. He was diagnosed last year in Feb. And it seems like he fell of a cliff so to speak. His Alzheimers progressed so quickly. He now is in stage 6,if you go by stages. His sundowning just about killed me. So when he started it again, I just freeked out. Well I keep you updated when I find out more
My husband also was diagnosed a year ago, and like carma he is changing quickly. He is not at stage 6 yet, but I can see major changes already. I'm dealing with pacing, and a lot more isolating strategies on his part, and repeating, repeating, repeating and loads of stress (he can't take any and he makes me feel stressed about things that just aren't stressful).
The problems with the drugs is that they never turn the clock back. They might make things a bit easier for the caregiver. They might slow things down. They might not. And it can take up to two months to get the patient up to full dose, and you might not see changes until the dose is up to full dose.
I don't think they've got anything that will work on sundowning.
hi ladies, he had my husband on zyprexa for the aggitation/sundown periods, basically knocked him out so to speak and he slept alot but it was for a short period. hes now early stage 6 and on no alz meds due to side effects, he is doing the 4pm pacing everyday and wears himself out walking over 2hrs if dont intervene. our neuro gave me the ok for a 25mg of benadryl to settle him in at dusk and its working well and helps him sleep plus helps his sinuses. a mild sleeping aide may be the answer to help them during this time. divvi
Starling, I know that everyone says that AD drugs only slow progression, they don't cause any improvement. Well, that's on average, and over an extended period of time. The way clinical trials are designed and the type of data that is produced, that's the most that the drug companies are allowed to claim.
However, some patients do experience improvement, even significant improvement, when first put on namenda. My husband is an example of that. He did so well that when his neurologist saw him again three months later, she kept calling him a "miracle." She began to worry that her diagnosis was wrong. (It wasn't -- it was confirmed by a team of world-class experts.) Some of the improvement may have been due to getting rid of some very serious stress -- my husband's symptoms are very sensitive to stress -- but surely not all of it. It's three years later, and I'd say my husband is perhaps now slightly worse than when he was first diagnosed ... in between, he was much, much better for the first couple of years, and then slowly started to slide again.
Another lady who posts over on the Alz Org site had the same experience. And I just read a post there that one-quarter of the patients put on namenda show significant improvement. I've also seen posts from people whose LOs improved when first put on aricept, too.
Granted, not everyone gets better for a while, and some patients have bad side effects, actually get worse. You never know which patients will be helped and which won't, until you try.
I sure do wish you and your husband had had the same experience we did.
Sunshyne, my husband DID improve once the full dosage of Namenda was reached. Not a lot, but he was nowhere near as confused as he had been the month before when he was on a half dose. I think he actually got several months of improved or stopped decline before the decline started again. And it is very possible that his current decline is slower than it would have been without the drugs.
It is also possible the diagnosis just came too late for the medications to help as much as they sometimes do.
Sunshyne. My husband had been on effexor for depression and a Aphedimine for extreme tiredness . By the time he was diagnosed with AD and went on Aricept he had been in a sharp decline. Once starting the aricept I saw no change , infact it appeared his decline was continuing. I am eager to put him on namenda in the hopes that this decline will at least level off. Perhaps you already answered this but what is the likely hood that namenda will act differently than aricept. Any experience that aricep t didn't do much but namenda does??? We see the doctor this month and I know that last time he was considering namenda so I think this time he will consider adding. I am so hoping that we can slow this decline....
I saw noticeable improvement when hubby reached full dose of namenda. he was on it for 5+yrs then developed side effects but did well while on it during those yrs. i would try any drug in the early stages to help retain cognitive abilites longer. if you dont try you wont know if its working.good luck, Divvi
I realy think that they waited too long to put my DH on Namenda. As I said in my first post on this subject, it seems as if he is going through all the stages all over again. I'm not sure if I can handle all this again. If he keeps getting the same symtoms that he allready had, I will ask the Doctor to take him of Namenda. I don't know, maybe I'm not giving it enough time. He is on the full dose now for about 4 day. I guess I wait a little longer and see what happens.
Each person reacts differently to the medications. And the dosage. The doctor needs your input on his/her reactions to the medications to determine what to do next. Does your husband drink a glass of red wine each evening? If not, it is a good relaxer for both of you and may help calm him. It works with my husband. For now, at least. He gets sundowning earlier than he used to. It used to start at 8 p.m. and now it sometimes starts at 6 p.m.
Aricept and namenda work by two entirely different mechanisms. Aricept (and most other AD drugs such as Exelon) are cholinesterase inhibitors, whereas namenda is an NMDA receptor antagonist. So it is entirely possible that namenda will help even if aricept did not noticeably improve your husband's symptoms.
Also, studies have shown that the combination of aricept and namenda can be more effective than either drug by itself.
We kind of went backwards -- my husband was put on namenda by itself, because the doctor didn't believe cholinesterase inhibitors do any good, and because he was diagnosed as having moderate AD and aricept, at that time, was only approved for mild AD. (I'm not so sure she's a very good doctor for AD patients. We've stopped going to her.) Then I was looking for a clinical trial we could participate in, and the most appealing one was for huperzine A, which is a cholinesterase inhibitor, but structurally different from aricept and exelon.
My husband did not have any significant improvement when the huperzine A was added, but his decline has been very slow (the people running the trial are thrilled), and who's to say which drug is the reason, or whether it's both?
Mary, it is refreshing to see someone advocate a glass of wine. Other caregivers sometimes act like its criminal to let an AD patient have any alcohol. Funny, when I first found out my husband had AD, I did a web search to see if alcohol was a problem. The only thing I found was that AD patients often have the opposite effect desired from sleeping pills, and that wine can help the patient relax enough to sleep. And his doctor, and the people running the trial, are fully aware that he imbibes... He loves red wine, is very knoweldgeable about wines, and I would feel like a criminal to take it away from him. I did cut back from his usual two glasses to one, and he accepted that pretty well, but no wine at all? Bad, very bad.
Joe also knew a lot about wine and really enjoyed it. I'm cooperating with his desire to have both a little wine with dinner and beer as well. Who knows. Maybe that is why he is relatively mellow. He enjoys it and none of his meds came with a DO NOT DRINK statement.
I also have a tendency to take the DO NOT DRINK statements with a grain of common sense. I had one pharmacy that put it on ALL of its prescriptions, including some where I already knew it wasn't a problem. So if I see one these days, I look the drug up.
Our nighttime stuff was awful. The lack of sleep was unbelieveable. Please do not let yourself fall into the trap of "being on alert" all night, then try to function during the day. You will end up sick.
Our solution was to baby gate the door. I placed it about 1-2 feet off the ground. My DW would wander up to it, look over, and then wander about the room. Since I knew she couldn't get out, I felt secure enough to get some sleep. I facilitated 'potty privileges' by buying several baby gates and making a path to the bathroom. It was like being a mouse in a maze! I cleared these two rooms of anything harmful, turned OFF the water at the sink (under the cupboard), and slept. Basically, she wandered this maze as she pleased. I usually woke up to TP shredded all over the place, but at least she couldn't do any harm.
It wouldn't work in every floorplan, of course, but if you can do it, it really helps. Just like childproofing a house!
This was at about stage 5-6, when she didn't realize she could probably yank the gates down or try to crawl under. Probably wouldn't work if they are still clever enough for that!
trisinger, I've seen someone suggest installing French doors, if something more stable than a baby gate is needed. The bottom half can be used to control wandering while still being able to see and hear the patient, and the full door is available if you want a closed door.