Today my husband had a check up with his PC and I was able to chat a bit with him alone.......He said that it was "time".......Time for placement.......NOT that I didn't know that, but hearing it from him was very difficult.

My step daughter was to take him for 2 days too, but the doctor felt that my husband wouldn't be able to handle that either.........

So my cyber best buds........Now what do I do? Face the truth? I don't want to.....His family wouldn't support us before, so you can imagine what will happen now! And, how DO I pay for this?

Thanks for listening.......

Ann

Ann - my heart goes out to you. I walked in your shoes just a few of months ago. I knew "it was time" even before the doctor told me. I didn't want to face it either, but I knew in my heart that it had to be done. I can't help you with the family support problem as I am very fortunate that Charlie's siblings and his son give me their full support. We had to get Medicaid to pay the bill. All things considered I still say that it was the hardest thing I ever did or ever will do.

Yes, my husband is 62 and I am 52. No, we aren't eligble for Medicare or Medicad......yet. My husband should be eligible for Medicare in March 2010 (30 month disability period).

We had looked into a few places some time ago. Of course, we both knew the time would come, but he doesn't see it now---of course. I know it is time, too.......probably past the "right" time, but who ever knows when that will be?

Our son who is still in college is our only support. The rest of his family is in denial.......however they haven't seen him in 5 years either! My family is all gone.......How I miss my mother!

Thanks for listening everyone!

Ann

Hi Ann,
I am at the same place you are at. My DH is only 53 and we made the same doctors visit 3 weeks ago. There is a free service in my area called Senior Living Consultants that helped me look at different places. They took all the info about my DH how much I could (or really couldn't) afford and took us to 4 places. I reluctantly decided on the cleanest one and told them he would be joining them at the end of the month. How does one make a decision like this? Numbly I guess. I have cried all the tears I have and will barely make my own mortgage payment with having to make his monthly payment too. It will be like make two house payments. Even if I can get Medicaid for him they would take his Soc Sec which is what I will be paying a month for the place I found for him, so it is the same either way. I hope things work out for you. I am just beginning my journey into aloneness. Hugs to you
Denille

I also marvel at the fact that the Doctor is making this decision for you, unless the physical or violet aspect of the disease is such that he can no longer be cared for at home. I would think the caregiver alone would know when the time has come for placement.

Dear friends...having just gone through the placement process I might have some incite that will help. Our trusted and long time PCP also made the reccomendation to me about ten months ago. I was surprised because I didn't think it was anywhere near time for placement. He quietly told me he and his staff had noticed a significant decline over the previous four month period. As spouse/caregivers we can be too close and emotionally invested to see what others see. Our PCP saw in John a rapidly declining 65 year old with FTD. He knew all too well what the future would be but I was still in denial. More importantly, he saw in me a stressed,depressed,sleep-deprived,underweight 55 year old. Did I listen? Noooo! Not me. I know my husband better than anyone else in the world. How dare our wonderful Dr. tell me it's time for placement. He dosen't know what he's talking about. I'm young and strong, Johns not that bad. I can take care of us indefinatley. Boy was I wrong. I've tod my story before so I won't go into it again.
I'm not advocating placement because someone said so. It's the most heartwrentching personal decision you'll ever make. I waited till it was the last possible option. I understand now that my reasons were so very selfish. I HAD to know I fought the good fight. Done everything humanly possible to keep us together. Sacrificed everything in the name of love. I was so focused on keeping John at home I didn't see what it was doing to him. I no longer feel guilty for placing him but the guilt of not doing it sooner will take forever to get over. cs

cs,
You have nailed it.........This is exactly what is happening with our situation too. Certainly the doctor can't force me into anything.....however, he is seeing the rapid decline and safety issues. I do believe he can see how this is destroying my health as well. I actually thought I could hide THAT one. (Minus the underweight issue) LOL

Starling.......I have been in contact with the both the COA and our local Alz association. Both say they are sorry, but there isn't much they can do. Granted, I live in a small state, but there still should be something that they could do.----I've taken his family out of the equation. If they can't be bothered by me, then I won't bother to have the doctors explain the situation to them. If they ignore it, it will go away..........

Again, I don't think the doctor is making the decision for me........Just telling me what I already knew, but didn't want to hear.....

Thanks everyone.

Ann

Ann I am glad you have such a caring doctor! I didn't listen to mine *sigh. Now I wish I had. CS, I agree, now looking back with brutal honesty, I was very selfish not placing him sooner. His adjustment period about killed me, but in truth he settled in just as they said he would.

There reached a point where I just had to love him enough to want what was best for HIM. He needed 24/7 care, and I am but one person. My health was suffering, I was having TIA’s, I was stressed to the max, there was NO quality time. He needed and deserved better care than I was able to give. That was a bitter pill to swallow. I felt like such a failure, that I had let him down. Placing him was the single hardest thing I have ever done. Yet it has also been a true blessing.

Now, it is ALL quality time. I am no longer the nurse and the enemy. There are no battles to bathe, change clothes, take meds etc etc. Every single time he seems me, he smiles a smile that lights up my broken heart. He hasn't hit me or yelled, screamed or sworn at me once since placement. Instead he hugs me and tells me how much he loves me throughout the whole visit. We hold hands all the time now.

I miss him like hell. And I still want him home with me more than I have ever wanted anything! But, he is where HE needs to be. He is content for the first time in over 5 years. He is SAFE. It will be unbelievably hard ((Ann)) we will be here to help you through ~ ((hugs of understanding)) Nikki

.I feel the best part of placement is the activity and interaction we can't them at home. When I visit I see women holding hands like children as they walk around the grounds. There is so much activity going on that at least they aren't bored.

Nikki, that puzzle looks like lots of fun.
Don't blame yourself for not placing him earlier. We do what seems best at the time, and there's never any certainty what the best course might have been. Perhaps Lynn just isn't the type to get involved in those activities.
How much time do you spend with him?

Dear Nikki: I am listening to what you have been saying, and it all makes sense...especially when they are at home with us...there is very little that will stimulate them...that is what bothers me the most...I can handle most of the challenges...but then when I see him sit in his chair, saying nothing, doing nothing, that upsets me...We were doiing 4yr old jig-saw puzzles for quite some time, now he seems to have lost interest
I have started to check on some N.H. I want to be informed as to what is out there. I am in the process of seeing an Elder Lawyer, when we get some answers from him. I will know more about taking the next step.It is one of the hardest things we have to face, we just have to realize that it is for the benifit of our loved one, that this step has to be taken....Reading all the comments, has certainly been an eyeopeneer..Bless this web-site.....

My husband, 85, is level 5-6 - but he has physical problems - a leg with chronic phlebitis and edema - so that he walks with a walker or leaning heavily on a cane. He comes up and down stairs with a stair glider chair. Lately he's been saying how very hard it is for him to walk, moaning I'm used to but this is more than that, and saying that his arms hurt and his legs hurt. I think he wants me to push him in a wheelchair. The house isn't built for that. I think HE'S beginning to think he should be in a facility.

I've been trying to avoid this, both because there isn't a good one close by - he could not manage in an ALF, it would have to be a nursing home - and because of course the cost would quickly be prohibitive. We'd have to go to medicaid within a few months, I'm sure. (I've been to the elderlawyer) And mentally, he is still too "with it" for me to think he'd be comfortable there but maybe there would be more mental stimulation than I expect.

So I'm thinking about investigating them further. I had planned/still plan to keep him home. Toileting issues I can deal with, at this point I can still deal with the physical handling - and I have a CNA coming in now twice a week. But everyone says "sooner rather than later" and I wonder. He may be ready before I am.

Me too, Nancy, even though I've got my daughter here with me.

My plan had always been to keep him home until God called him home....It just wasn't a very good plan.
If I had it to do all over again, I would have placed him sooner. Around the time he started staying in bed 20 hours a day, sleeping or not, just laying around. I think at that point the adjustment period for him would have been the same. It would have been even harder on me though. (if that is possible!) I just keep thinking IT IS TOO SOON! I worried and worried that he was still too aware....

Fact is, even in early stage 7, he was still very aware on the day of placement. He was pissed, outraged and very sad. He had every right to be, this disease sucks! :( ..... But he DID settle in right in the time frame they told me he would. So my point is, the transition is going to be hard no matter when we choose. I truly do think he could have benefited more if I had placed him sooner.

We had no one come to the house to visit us, not even his own children. It was just him and I.... an AD victim and an overwrought, stressed out caregiver. There was no quality of life for either of us! He lay around most of the day and when he did get up he was physically and verbally abusive. I swear he hated me, and in truth, I didn't much like who "he" had become!

Now he has plenty of people to chat with and visit. He is well cared for, there is always someone awake to keep an eye on him, he has 24/7 skilled care and above all he is SAFE. But more, he loves me again. In his mind, I am no longer the "mean witch" that made him get up, try to bathe him, change his clothes, feed him...etc etc .. I am once again simply just his wife. One he can't wait to see, and one who he WANTS to let help him. I am a much better caregiver now than I have ever been! I am rested, I am not stressed out. I miss him like hell!!! But that only makes my time with him more precious.

I tried to stimulate him at home, but he would have none of it. And frankly, weighed down in the day to day stress, I didn't have the energy. Now, all our time is quality time. Every second is a blessing. So yes, I do wish I had placed him sooner.