I cannot believe the rapid decline my husband has had in the last year but specifically the last four months since placement.
Those of you who remember, he was dx with atypical Alz moderate stage two and a half years ago. Today, he only speaks gibberish in a whisper with occasionally a word mixed in. ( often my name or I think now mommy). He has to be fed, is incontinent , can only "walk" teeny steps with assistance ...I actually sadly realized he can do NOTHING on his own.
He is only 67 and walked into placement four months ago able to feed himself and walk ,. He spoke a little then. He was having a few bathroom problems but still managed. He started out in Arden Cts for two months and landed in Geri psych for last two months due to his unmanageable behavior and an incident where he hit another resident. Ramapo Ridge in New Jersey has given him exceptional care. Meds have been adjusted and he is calmer ..changed from seroquel to risperdal. Seroquel besides not helping made him a zombie. He is awake and not groggy now. He is being transferred to a Sunrise Alz unit near me where he will need their highest level of care. I am " happy" about that. Dr said if this was indeed Alzheimers he would be in twelfth year!! Can't understand what has happened and I find myself constantly trying to figure this out.
Hi Lorrie, I don't think it's unusual for a person with dementia to take a sudden downturn which precipitates placement, but since my husband is still home I can't speak from that particular experience. I can share with you our experience. Last December he fell and hit his head on the flagstone walk. Took him to ER and found he had a broken collarbone, but thankfully no head injury. Ever since the fall he's been incontinent (both) and has more confusion and less speech. His whole life changed dramatically after the fall. And so did mine.
Glad to know he's getting out of Ramapo Ridge soon....they have an excellent reputation for treating patients with difficult behaviors. It's been a long, trying journey for you both, hopefully things will settle down.
Lorrie, One thing I have learned with this disease is that we cannot figure it out, although we all certainly try. My husband has declined (been in placement for 17 months) but not the sudden onset that you speak about. he is still walking and eating and handling the toilet although that is hit and miss. they just started trazodone to hopefully stop the agitation and constant pacing day and night. He talks gibberish but is still somewhat aware of things in the distant past. Yesterday he had hallucinations. He is getting good care and every time I go I am grateful I placed him. Just remember to take good care of yourself.
Some can progress through the disease quickly, others can take years. Why, who knows. Coco's husband went quickly as have others. I wish my husband did. There is still so much unknown about this disease and why some progress fast and others slow is one of the big mysteries.
When my DH was diagnosed I was stunned when they said three dementia's. The geriatric-phycologist and phyciatrist gave me this explanation. They said dementia is like an umbrella and under that umbrella are diseases called Lewy body, aphasia, fronto, fronto with bv varient an Alzheimer's. There are also some variants that I just don't understand but what matters to me is that there are three that he has and they are what I have to work with. Some are slow advancing and some are slower. No matter what he has it and I need to live with it.
Lorrie, My DH went so fast. In a way I felt cheated, it went so fast. DH was dx at 58, one day he was working, driving, helping around the house. The day after his dx, no job, no driving, no more helping around the house. How long had he been so bad. Who knows. I was worried for about a year before the dx that something was wrong. From the dx to his passing, 2 months shy of 4 years. He changed every 7 to 10 days. The decline came weekly, I could not get his neurologist to understand. No one understood. I still to this day do not understand. Others here have years in different stages, we had months. Is this a different kind of dementia/Alzheimers? Some day we will know more, for now just questions.
Lorrie, our experience is very similar to yours. My husband is 65 and has been in care since last March - first at a Sunrise facility where he only lasted 3 months due to his agitation and aggression. After that it was another 3 months in hospital while they attempted to regulate his medications and stabilize him enough for another placement attempt......I was beginning to think he would never leave the hospital. Finally, in September he was accepted at a facility for difficult patients and his decline continues unabated. We have only been dealing with this since the fall of 2011 (fall of 2012 when he was actually diagnosed) and walking a bit on his own is all he can do now. He is incontinent and really has no coherent speech. Like blue says, I also feel cheated because at the outset I thought we would get some of the plateau periods that people speak of.......not so, just a slippery slope. Even the experts seemed stumped by him and are not sure if he has AD, frontal lobe, or some combination. It's all so disappointing and frustrating. One thing you learn with this disease is that no two days will be the same!
My husband had a huge change from April 13--walking with walker, pleasantly ditsy….to April 14--fell three times, could not walk (never walked again), completely disoriented. Lots of agitation and restlessness, more incontinence (both), more falls from trying to walk when he could not. Sometimes it seems like it goes on forever, and I guess other times there can be a really dramatic change in condition.
When you placed him I suspect he was close to seeing losses and that being in a new living situation put him over the edge. So I think he was close to seeing the losses that you see now, no reason to feel guilty. Like nbgirl my wife was at a Sunrise where she lasted almost a year, but had to be moved to an all dementia ALF which could provide much better care at the end of July. We (her sisters and I) feel that L has been seeing an acceleration of her dementia in the past few months. My feeling is that we moved her in time.
I'm new to this site. Spouse is between stage 5-6, living at home. To Lorrie: I understand that Arden Court booted him due to his behavior. Would they not take him back after the Psych Hospital? Is there any reason he's going to Sunrise now?
I decided that the level of care was not appropriate for my DH at Arden Ct. There was too much freedom and not a high enough level of care for his stage ..it was also over an hour ride away. Sunrise has levels of care based on need and payment is according to level. Sunrise is also nearby I'm hoping this will work out.
morgancastle. If you tell us a little about your situation, you will find assistance here. It is a site full of wonderful, caring people who understand.
Please go to the Welcome New Members thread for a welcome from me. If anyone would like to answer or welcome morgancastle47, please do so in the Welcome New Members thread. Thank you.
Lorrie, again our situations are somewhat parallel. My husband was placed at the same time as yours, also sent to a psych ward and has spent 3 months there. He just got his bed yesterday at the facility for 'chronic behaviour'. He has also gone downhill in the 3-4 months since he left home. He is now totally incontinent, needs help with feeding, is almost non verbal and despite the meds, is still combativie. I am more depressed at the facility than I was when he was in the hospital. It is so spartan, morose with people with odd behaviours. He still walks around with no problems but there has been a steep decline from when he left home. Makes me wonder, if it would have happened if I kept him home??? I hope we both adjust to his new placement.
Yes. It seems that we are living the same life with our husbands. Tomorrow, my DH will leave the psych hospital for Sunrise ALZ where he needs their highest level of care. He is now also incontinent, needs to be fed, cannot walk, Speaks gibberish , ... Cannot do any ADLs.
I continually wonder how he would be if I hadn't placed him 4 1/2 months ago. Then , I remind myself how this is only evidence that he was placed at the right time. I am sure you, as I did, kept him at home as long as we possibly could. So, no wonder, that the decline has been so rapid.
Let's try not to attempt to find the reason for that which has no reason. Heartbreaking to live through watching Our husbands disappear. Take care.
You know, in your hearts, that you have done everything you could possibly do for your husbands. I feel your pain - truly. This is such a cruel disease. I hope, sincerely, that you can find ways to cope with the pain and stress while you try to help the husbands you love.
Today is the move. Although the move is to my first choice facility, I am still feeling Soo upset and physically ill. While packing his things yesterday. All I did was cry and feel such emotional pain. I think it is the realization AGAIN that he is REALLY gone and NEVER coming home again.
Now, it is snowing and freezing too. The thought of an hour plus in the ambulate with him going to new placement Is making me Soo anxious.
Dear Lorrie, Good luck with the move. I'm sure the bad weather just makes the whole thing drearier. In the face of so many unexpected crises, you have carried on valiantly, as has abauche. Please do not try to second-guess your decisions. It's human nature to try to make sense out of events but some things are just not explainable. Please let us know what happens.
Lorrie, my thoughts are with you today and hope it went okay. The change will be hard on both of you. As long as my husband gets attention, he is ok. If he's left alone, he is like a lost puppy. I think he was spoiled in the hospital with a 1-1 care aide most of the time. Now he has to make an adjustment. He won't see me daily either as its in the opposite direction of where I work and go almost everyday, so I plan to see him 3 times a week. My second visit with him in his new facility was sad as he was agitated and even as non verbal as he is, made it clear he was not happy to be there. That wears on me all the time until I go again....and hope its better.
The move is a continuing nightmare. Somehow, my husband regained his strength and was aggressive and combative upon arrival in new facility. He hit, kicked, and yelled when touched by staff.i had to call an agency to send over one on one aide.
I just got home at 11:15. After leaving at 10:00 am. Don't know what outcome will be. Feeling this isn't going york. Then what ? Soo worn out. But. I'll never think maybe I could take him home again
Lorrie, I am so sorry for all you are going through in trying to get the best care possible. Adjustment to a new facility usually takes a while so try not to be too discouraged yet. After him spending so much time in psych hospital makes me wonder if they released him before getting his meds correctly adjusted. My DH is now 70 and has been placed for almost 4 years. He walks and by being fed he eats heartily. No communication whatsoever. It is downright depressing to me. Realizing that you can't take him home again is a huge mental accomplishment. I hope he settles down and you can get some much deserved rest peace.
I just want to say, that I marvel at the staff that work at these facilities. yes, we have all put up with aggression, poop, and all the behaviours that drove us crazy....BUT we had to because we married these men and felt responsible. Now that mine is in care, I must say I watch and wonder who would CHOOSE to do this day after day. I watched today as my husband finally consented to his am care after lunch and a well oiled machine of 3 aides did everything so quickly and efficiently. This is after tries in the morning where he lashes out and threatens to pop anyone who comes near him. I doubt I would last long doing this and just want to express my gratitude to those angels out there who take over from us.
I agree with abauche about the aides. A nasty GI bug swept through the ALF and those young aides just rolled up their shirt sleeves and cleaned and comforted and cleaned some more. Some days the unit was short staffed because so many of the aides and their families also got sick. Although they do not have a lot of formal training, many of them have an innate sense of what to do and great compassion. IMO they don't get paid nearly enough.