I am very curious about this subject. I know for most people it is the straw that broke the camels back, kind of situation. I have a friend that didnt place her DH until he became such a terror she was afraid and couldnt handle it anymore. A lot of you I know have spouses with poor physical health, arent able to ambulate, or are incontinent, or a mixture of these things. I know Joan, our fearless leader of this group has multiple difficulties with her Dh. How many are placing your spouse with good health and Alz. For me just the alz is a killer. Its killed my marriage, my relationships with many friends, trying to kill me!! I just dont know where my line is!
I am in the process of placing my wife. I think she is more functional than many spouses her. She has all of her ADLs. She doesn't wander. Only now are we seeing memory problems. But her behavior is becoming more difficult and making life heck for myself and our son. While she is getting worse it is more the slow chipping away than any one incident. Based on what I have seen and the experiences of others I expect to see major problems develop in the next year, and decided she will be able to adjust better now to assisted living than in a fee months. I am fortunate in being able to afford this level of care now, but I'm not sure if ill have any retirement funds left when I turn 65.
This is a question with which I have also been struggling. I am reading too much of people who have drawn their line in the sand, because they didn't think that they could handle the next stage, and then find that they could, indeed get past that hurdle and move on, whether it was incontinence, mobility or something else. And although they say they got stronger because of it, there is a physical and psychological price to pay for every day we spend as caregivers. If my DH had continued on the rapid decline he was on last summer, before he was diagnosed, I would probably have had him placed by Christmas. But he responded well to Aricept, so now we are back to a manageable (albeit frustrating) stage and I am left again with the question. And I've been through some of what is to come already, and managed to get through it, without even knowing what I was dealing with. Now I know, I know what to expect, I know where to get help, so it should actually be easier. Although the NH figures I have enough assets to place him any time I want, I've calculated what the financial burden would be (unless I made some major changes to how my finances are structured). And I am only 61, so I have a long time to go yet (I hope). Going back to work is not an option - I've been out of my field for too long. So the cost of placing him is going to have to be part of my rationale for choosing the time. Another factor that will influence the decision will be how much assistance i can get for home care and respite time. I've looked at trying to hire QUALIFIED caregivers to supplement what I am getting now - they aren't available unless I want to pay them under the table. Which means I can't claim them on my health insurance, which means its an out of pocket expense. So perhaps I have answered my own question - if the cost of home care reaches a point where it equals the cost of an ALF or NH, then I would place in a heartbeat. I suppose that if my DH didn't know who I was anymore, even if he was continent and still physically mobile, I would also consider placement at that time. The romance left our marriage a long time ago, and if he doesn't know who I am, then I don't see any reason to continue looking after him. For me, that would be a sign that it was time to move on with my life. Some people may find that harsh, but they haven't lived my life.
I don't think your are harsh at all. I think you will make the best decision for you. I am placing my husband at the end of the summer. Most people would say "he's not that bad" but I know in my heart and soul it is time. He has been sick since 2003 with numerous hospitalization s for circulation issues and diagnosed with alz in 2008. I am just bone tired I wish you the best
I think it's not when he's ready for placement, but when your ready! There are so many levels of care and each of our situations has so many variables.
Possibly instead of running in full speed ahead you could try snippits of time ie, respite time once a month for several days etc. That would allow you and DH to adjust to this new transition. Best Wishes
I never had any intentions of ever placing Lynn. I had no imaginary line in the sand, I thought I could do it all. As much as I rebelled against it, I knew when it was time. Not when everyone told me it was, but when I reached the point of not being able to do it any longer. Every fiber of my being was screaming out for relief. It will be different for everyone, but you will know when you have reached your limit.
Ky caregiver ... when to place, and where, are personal decisions that each of us must make if we choose to even place at all. Whatever decisions we make as caregivers are, by definition, the right ones since no one else walks in our shoes so no one else can make those decisions for us. Some in my weekly support group clearly indicated they would never place their spouse in a facility and would prefer home health care aides and nurses. Others decided when the time came, it would be a placement in a facility. Ironically, for those who did place a spouse, each ended up saying that he/she had waited too long ... that he/she should have made that decision sooner. I am one of the lucky ones with long term health care insurance, so money is not a factor. I made the decision to place my wife when she became incontinent ... I said that would be my breaking point. But what turned out to be my breaking point was when we started arguing each morning and night, something we never did before in our 46 year marriage. We were arguing over following directions, basically ... getting dressed, eating, taking meds, hygiene issues, etc. Not wanting to wait too long, I placed her on a room waiting list 6 weeks ago and am now waiting for our number to come up .. she was #3 on the list. Ironically, now I, too, wish that I had placed her sooner because just in these last 6 weeks she has become incontinent (urinary only so far, thank goodness) and I am now cleaning up the bedroom/bathroom floors several times a day ... and sometimes stripping beds in the middle of the night ... and that is with her wearing Depends ... when she remembers to put them on. In my opinion, whatever decision that you feel is best for you, KY caregiver, and your spouse ... that is the right one to make, regardless of what others think.
acvann is so right.we cannot care what others think.10yrs.ago when we placed my MIL in a NH her family thought we were awful.She had a very extended family but my DH was a only child.Everyone thought sh should live with us.My DH said he would be dead in 2 mo. if that happened,she was a very caustic woman.She was horrible to her only son the whole 3 yrs she was in the facility. Maybe that's why my DH has adjusted well,he did not want to give me the grief she did.Nikki is right, once you place them and do not have all that stress, you can have a much healthy relationship,I do go every day and eat at least one meal with Sonny, every thing is much more relaxed.
I agree with everyone here.. it's time to place when you have had enough...then 6 months earlier.
Now that the decision has been made I can't wait for it to happen. It will be a better quality of life for him and for me. Why live out the last years of ours lives together with me burnt out and miserable and probably not giving really good care because I'm just not able.
The police, three doctors and my mother all told me to place him. He was violent, prone to disappear and I was getting sicker and sicker. Amber, I laughed at your comment ... then 6 mos earlier! How true. I would tell Ky caregiver that her 6 months are up. I pay out of pocket for DH's AF but it is worth every penny. He is safe, well cared for and I have gotten my life back. I'd rather be broke and have my life!
Bqd. I agree that if my dh gets where he doesn't know me, that will definitely be the time. If I van afford it.. I'm 67 an RN. And could go back to work, but my health isn't the best. I have been at this full time 4 yrs. and many before that. He was Dixon 06 but I new long before that. He has been a horror to live with. For yrs and now I know why. So yes I'm pretty burnt out. He has 5 siblings I never hear from. But if he was placed there would be quite an uproar. But likes said, they haven't lived my life.
Ky caregiver - you've been at this a long time, and it certainly sounds to me like you are ready to have him placed. He has five siblings you never hear from, who would raise h**l if he were placed. If they feel that strongly about it, and give you a hard time, I suggest that they consider taking him in, because I don't think you can do it much longer without it taking you as a victim as well. For me, yes, my life with my DH has never been easy. He was dx'd last September, but I've known for a long time that there was something wrong. Its only been in the last year that caring for him has become a burden, so as frustrated as I am at times, I do know that I am not burnt out and can handle it for a while longer - I'll just take it as it comes, and hope, as Amber advises, that I can figure out the six months in advance of when I have had enough.
Circumstances made H's placement necessary. The aggression was replaced by falling and I could not physically deal with the frequency. The problems started about 12 years before his death, and in 2004 the scale started to tip toward them interfering with daily life. By 2008- 2010 there was no looking back.
However, H maintained physical strength despite the cognitive decline. I could no longer physically care for him. Repeated falls caused me to call paramedics who transported him to hospital. They determined he was not competent. From there he went to rehab and from there to alf where he died.
If not for these circumstances I have no idea what I would have done. I had consulted elder care lawyers and a guardianship specialist because he refused to leave the home.
Did it. Last week. Wife in home now. Daughter and I were both exhausted. It was her or us. Not easy. I feel like I am abandoning the best friend I ever had. I feel pangs of that every time I leave her. But it has to be. "Get me out of here" was her comment when i went to visit yesterday. I wheeled her outside for a bit and brought her back. It still has to be this way.
There is no right time ever. There are only wrong times so as Mary75 said the caregiver has rights too and as Dave said "It was her or us".
That's when I did it. When it felt like it was her or me.
But for me there's one more point to make. I kept her until she could no longer tell what was going on and that last year and two were literally insane. The reason was I knew I couldn't hear her ask me to come home and deny her. I wasn't strong enough to do that even knowing it was better for her to have professional 24/7 care now.
As a result I think, I've paid an extra price.
I'm sorry for all of us to have to face this horrible day. But I also don't mind admitting that from the day I put my wife in a NH, I began going through all the built up reactions to what had happened to my life, and after a year and a half I don't have the high notes back magically, but the serious lows are truly gone.
Oh Dave, my heart breaks for you & everyone else who has heard those words, “Get me out of here” or, “I want to go home.” When I placed my DH last October he was pretty much unaware of where he was, & the few times when he said that he wanted to go home, I took him to his room & to him THAT was home. I know that he is getting the best care there. The aids are very attentive. (I don't know how they get all their work done, but they do!) Someone asked me how I cope with him being in the Veterans Home & this is what I said: I go & visit him almost everyday (I only live 10 minutes away) & when I am there I can look at him & feel the love that I thought was gone when he went through the raging stage (Dear Nikki told me I would feel the love again & she was right!). I feed him, & stroke his cheek & tell him that I love him. When I get home I don't think about him. Even with all the reminders of him at home, I don't think about him, because if I did it would break my heart all over again. I know that sounds cold, but THAT is how I cope.
It's a shame that there isn't a system in place that takes this emotional burden off of us caregivers. There is such a stigma attached to moving our LO's out of the home, and we do worry about what others will say, think, etc., even if they haven't been a bit of help during all the years of home care.