And did they adjust well to the more structured environment? I have read many times how well some AD pts have done when placed and feel like more regularity of days may have something to do with it. I know my DH asks me, what am I supposed to do now? A lot. He can't remember what to do , and asks me. I usually say, watch tv or some such thing. Please respond to how you think this has affected your spouse and what stage you think they are or we're in, and also your own frame of mind at placement.
I'm interested in the same things. Seems I live my life in Alan's world since I'm with him all the time. I'm fearful I'll not be able to pull back out. I'm getting where I don't want any company, phone calls or reasons to leave home. I have trouble doing even the necessary things at home, such as laundry, cleaning, etc. Always think, well, I'll do it tomorrow. I don't have any energy or motivation to do it. I sure didn't use to be like that.
I placed him at roughly the beginning of Stage 6, I'd say. The main markers which, in my case, I was waiting for were that place and who'd be caring for him were not really relevant to him. At the time, he'd recently lost his awareness of who I was and where he was, although these changes corresponded with his hitting a new state of confusion which led to aggressive, paranoid behavior, and required a stint in a geripsych hospital for med regulation before he could go back to the ALF. I am certain, based on the way he was trending, that the crisis would have occurred whether he was still home with me OR at the ALF.
For me, after he was placed, there was no looking back, and I realized it should have been sooner.
And sometimes, it is not about when THEY are ready, but YOU. Carolyn, yes I had those symptoms of withdrawal, and after over a year of him in placement, I am just barely putting my head above water, and seeing, that happiness is still in the world, that there is a "later", and that there are NICE people out there. There were very few nice ones when he was at home with me, little help, and platitudes being their way of "caring"
If you are not sleeping, constantly depressed, and your mate is a real challenge., it could be time. Sadly it seems like MOST of us have to go through the time before placement, the very hardest time that is.
One big lesson for me, was looking back and realizing I was fighting his diagnosis, that it was not really real, and that I was trying to stop it.
Coco, I have a huge hatred for ALZ. My precious Aunt Mary lived with us for 1 1/2 years before we had to admit her to a NH. By that time, she was only the shell that had been left behind. Alan and I together, saw what ALZ. did to her so you're probably right. I'm trying to fight the diagnosis and I'm sure not winning the fight. It was extremely hard emotionally with Aunt Mary but it's a lot worse with Alan.
Carolyn - the fact you are asking, from what others say, means it is time to seriously start planning and looking. Often it takes time to get a bed, so you need to be looking and getting on a wait list.
Charlotte is so right - it often takes a lot of time to find a good bed. I know. I tried - but ended up at the ER, then hospice - where they did find a place for him. It took an incident and the ER and hospice to make it work. Look carefully and early.
I called hospice first because the doctor didn't think he was 'ready". And...he did not qualify, although he could not walk, could not get out of bed by himself nor hardly with my help. I had to do everything for him. Twice he was turned down. I finally took had him transported to ER, called his doctor and begged him to contact the hospice unit at the hospital to evaluate him. He did, they did - did not qualify again! But...they were aware of my dilemma and I was totally exhausted, so they admitted him to the hospice unit for 3 days to give me respite. Met with the hospice social worker and 3 hours later she had found a bed for him. He died 13 days later in the nursing home. I had been looking for 3 months. Yes, the doctor can and should call hospice for an evaluation. All hospice units have different rules/regulations. And, no, they can be on hospice for longer than 6 months. And they can be released from hospice - then accepted back in. Ask your doctor to order an evaluation.
KY Caregiver I think most of placed our mates when we lost the capability to manage the well being of our mate and ourselves. Stage level is meaningless when making the decision. It's all about you being able to survive maintain your health and well being and remain safe while your LO receives the car you can no longer provide In my case it was after 2 in patient Hospice attempts to regulate my DW's meds failed and even with 24x7 nurses she wasn't getting the requisite care. She passed only 9 days after being placed
I still am looking or information about how the patient does, after placement with the more structured, regulated environment. I have even looking at NH s and assisted living. No line in the sand yet, but he is degreasing pretty fast now. Thanks for your comments and God Bless!
Some people do better after placement from the greater structure, others do worse. In some cases the person might have been on the edge of a major loss and moving to an unfamiliar place put them over the edge. And keep in mind that most people are placed because they are doing worse so it isn't surprising that they continue to do worse. Unfortunately I don't have any percentages on how many improve at AL/NH, just anecdotes.
I hired an Alzheimer's Case Manager to help me navigate the maze of placement. She told me 1) that placement was necessary, 2) that there would be a decline after placement due to the stress of a new environment and routine, and 3) that this decline might or might not reverse after acclimation. In retrospect I see that placement was a lifesaver for me, that DH did decline and cognitively has not recovered BUT he is much less agitated and much calmer. As I watch the staff tag team care for him I realize that it is a job one person cannot do.
The trade-off is not in cognitive improvement, but in the calming effect of routine, a smaller, less confusing environment, and staff to help with his care. This is huge and it requires you to change your thinking - not what is important to you, but what will make your DH more comfortable. It doesn't matter if his clothes match or if he doesn't get shaved until later in the day - the point is that he is now being cared for by a village and that is what it takes with this disease.