I wonder if we took a survey, would there be a particular stage of the disease where placement would most commonly occur? For example, my husband is at the end of Stage 6, and it pretty manageable at home. But I see big changes coming in Stage 7, and wonder if that will cause me to consider placing him.
Or is it all over the board, since each patient is so different? So in the end, do individual circumstances rule?
I think that what is manageable for one caregiver may not be manageable for another. It's more than just that each patient is so different. It's that we caregivers are so different. I marvel at some spouse caregivers in my weekly support group as they describe what they are dealing with in their homes. I know I could never deal with what they are dealing with. That line in the Kenny Rogers song, "The Gambler," comes to mind ... "Ya gotta know when to hold 'em, know when to fold 'em." I think I know what I can deal with and what will be too much for me. Of course, until I am dealing with it, I won't know for sure. But what I do know is that I want my wife to be home for me as long as I can deal with everything. However, the reason we took out LTC insurance when we retired is precisely because we both acknowledged that there may be situations where we would not be able to deal with things at home. And if/when that time comes for me, I won't feel guilty placing my wife. I'll simply feel that I am doing what I need to do ... both for my wife and for me ... so we can each have the highest quality of life possible.
I think the stage of placement occurs when the caregiver can no longer do it. I plan on keeping her at home until the end, but I can see myself facing more and more difficulty. I think the time for placement occurs when the caregiver reaches his or her limit, and often times, placement should have occurred much sooner. I wish I could plan ahead, but I am still trying to make it until 8P.M. Then, I hope to make it until 9 P.M.
In my case, I placed my husband in the middle stages...when he wouldn't bathe, change clothes, slept sitting up fully clothed, refused to take medicines, left used toilet paper in various places, ripped the handles off the refrigerator, and generally was a pain in the butt.......He was much larger than me and I couldn't deal with it.
But, when he got to Stage 7 and was bedridden, I brought him back home because all of the drama was over. That stage was the easiest for me to handle.
But, everyone is different, that's for sure. But one thing we can agree on....it is never easy.
As much as I would like to keep my dh at home to the end, I am beginning to see that probably won't be possible. I am only 5 feet l inches and there is no way in the world I could lift him if he fell or even give him a lot of help getting in or out of bed. I think I would get a lot of flak from my kids if I get too run down, depressed, etc. by keeping him at home.
I placed my husband when he was in stage 6 and was having a very steep decline. I was exhausted and was not able to do it anymore. Physically I was not able to lift him. For me it was hard to admit I couldn't do it anymore. Now that he has been in an ALF for just over a year, I think it is the best place for him. I was lucky to find a good place and he gets great care. I am still healing. Taking care of my husband tool a big toll on me.
When it was causing more harm to me than it was helping him to be home, I started to look for a Care Facility. Then when he was hospitalized for a month with a fracture of his lower spine (just happened, brittle bones, no fall), I knew I physically couldn't manage him, especially because he fired every aide I brought in to help. He wanted me to do take care of him. So it's a balancing act. How much do they need? Can you do it? If not, who can?
I agree that is is probably what the caregiver can handle more than the stage of the spouse. Charlie progressed so swiftly that it was impossible to put him in a phase. He went from diagnosis to death in just over 3 years. 18 months ago he could not walk without falling, and would not stay put, he was completely incontinent needed help with eating. Incontinence and feeding I could handle but I could not prevent falls and could not get him up if he did fall. He rarely slept. At that time I had no choice. We just have to do what we think is best at the time. I didn't even get to bring him home for the end. He was only bedfast the last 3 days before he died.
I completely agree that it's when the caregiver can't do it anymore. Actually, from what I have heard, it's 6 months to year BEFORE the caregiver can't do it anymore.
Joang...Sorry, but I don't understand your comment. It's 6 month to a year (from what stage..beginning from what point?) BEFORE the caregiver can't do it anymore.
Sorry, what I meant was that after many caregivers place their spouses, they say they waited 6 months to a year too long. They should have done it earlier, but didn't recognize just how much of a toll the caregiving was taking on their health.
I've seen husbands and wives who are getting an hour or two of sleep a night, whose knees and backs have given out, who can barely function, and are not taking care of their own health, continue to try to care for their spouses at home. This goes on for up to a year before they finally place them.
There are a handful of us whose husbands are bedridden, who are keeping our spouses at home. They are in Stage 7, and basically helpless. One has in-home care coming every two or three days to take care of him and allow her to be able to go out and do shopping, etc. There are at least three of us who have daily in-home caregivers to take care of our spouses Monday through Friday, with additional help (with me it is Hospice) coming daily to bath, shave and brush his teeth. I give him his medicine morning and night, and feed him his dinner and snack. Only on the weekends I am a truly hands-on caregiver all day.
Due to finances, I will have to keep him home and continue to do it the way I have worked out that works for me. I have to work, and so not only do I have time to continue my life, but am providing good care at home. If I were wealthy, I would probably place my husband in the nursing home two blocks from my house and just stop by every morning and evening as I went to and from work. It would be easier on me, but financially it would be very difficult, and I'm not ready to take that step yet.
I think it depends on whether or not your spouse can stand up - or help you help him - and be cooperative. And it depends on whether you have Hospice to help you as well. Some states offer more help than others. If you are feeling tired constantly and lack the energy to do what you used to do, then it is time to get daily help. If you are STILL tired and lacking energy, then it is time to place him/her.
Several spouses have become ill AFTER due to hanging on past the tired and lacking energy stages and their bodies shut down. With some it took several months before good health returned to them. So, as Joan said, by the time you do place them, you find you should have done so 6 months ago.
I totally agree with Joang. I made the decision as I awakened this time last year and decision was clear as a bell. I do think I received a big Spirtual nudge. Carol was stage 7but I was not able to pick uer up if she fell with out a great effort on my part. Plus bathing and dressing where getting harder for me.. I have degenerative arthiritis in lower back, left hip, (right hip replacement) and left knee, along with rotator cuff damage on both shoulders.
The six months late is very valid. I still tended to visit with Carol from 3-12 hrs a day which I then realized was too much for me to handle because of guilt of not doing things that needed to be done. wash clothes, go shopping, clean house, etc. I actually got disgustedwith my lazyness while at home.
Carol is now in a Spc Care Alz Unit and walks all around on her Merry Walker. Needs help with all other physical things like bathing, eating, clothing, etc. But I still get the urge to bring her home as she becomes more bed ridden and with Hospice care plus day care that LTC Ins will pay for. It is actually better than I thought they would pay.
I was one of the caregivers who kept dh at home. I was lucky in that I have helpful kids near, and also lucky he did not progress to the degree most of you are dealing with. My dh diag. was Parkinson with both AD and VD. So he had 3 fatal diseases. I had chosen an NH I would prefer about a year before he died. I made funeral arrangements also about that time for both he and I.
I called Hospice for an assessment about the time the Home Health Agency were wrapping up their time with him - following a UTI. I really didn't expect him to be admitted into their program but I wanted their opinion about how things were going. Surprisingly they did sign him up for 90 days. 2 weeks later he was dead. All unexpected and sudden. I recommend you do your homework and check out available facilities ahead of time in case you need it suddenly, and make final arrangements early - you can update later.
My plan is to keep Kathryn at home as long as she knows where she is and who I am and I am able to take care of her. Is that what will happen in the end? I'm not sure. However, I plan to do everything in my power to follow my plan. Once she is placed I will visit her everyday and do whatever I can to care for her. If they will let me I also plan to keep fresh flowers in her room. She has always loved the smell of fresh flowers.
When we found out Kathryn had Alzheimer's we talk it over and decided that neither of us want her to pass at home. If that happened I would have to sell our home because I wouldn't be able to live here anymore.
So far, I've been able to handle everything. But, my spouse hasn't progressed to the point some of you are going through. I was having trouble with his anger and accusations, but since he's been on the Seroquel things have been so much better. Most people don't even realize he has this problem. I'm going to have him home as long as possible, but if it comes to having to lift him, unless we have help (which I will do when I can't do it anymore), then I will have to consider something else. I admire so vey much what many of you do for your spouse. I hope I can rise to the challenge, although there have been other challenges in my life where I had to take care of someone before death, and one of these was a baby. I was very surprised at what I could do when I had to. I hope this extends to my husband. The difference will be if there is anger or he threatens me; that, I believe, I won't be able to handle. And, of course, there was a time limit to my other challenges. There will be none with this one.
i will always be keeping in mind my MIL who refused help or respite and died suddenly of massive heart attack. My FIL went on to live another 9 years. It should have been her. My hb made me promise to not risk my life taking care of him.
My DW, late stage six, early stage seven and I’m ready (need) to placer her soon. Even with seven hours of in home help, five days per week and two days in adult day care, I’m completely exhausted (mostly mentally). I wasn’t sure five months ago when I put her on a waiting list, but I now know it will be the best thing I can do for her and for myself.
Jerry, my DH is at the same stage as your DW and I had to place him three months ago. I'd say it's just recently that I've realized how bad off I really was and am just now coming out of the fog. Much longer and I would have been another Alzheimers victim, I think.