I think you look at the quality of life for both of you. If he does well in the nursing home- would that allow you to be less stressed and able to spend time with him that both of you would enjoy? on good weekends you could take him out and around and enjoy yourselves.
If you weren't bogged down by working, caregiving, dealing with nusrses etc- would you be able to relax with him? Placing him would not change that you are the primary caregiver- just would alter some parameters
Sharon

thank you everyone for your responses, they have been enormusly helpful to me.
Ray is home from Nursing Home and was in very good shape when I picked him up, this was followed by 2 excellent nights and reasonable days. But slap, bang big change from 5pm yesterday to 5 am this morning, very bad night, back to square one.
I take on board the comments about my irrational guilt (that is true) all of your observations are correct and I too have said all this things to myself.
You have helped me with the decision I know I have to make now, for my own self preservation, the guilt has been lessened greatly.
On Tuesday morning with my son, I sat down and spoke to the owners of the chosen Nursing Home for an hour (10 mins from our home) they are a husband and wife team in their 40's both Nurses and good caring people. Ray is open to going here for respite, not sure how I should handle the fact that it will be permanent, should I say this to him? my son thinks we should be completly honest with him. We have a rota of family/friends who will be with him and take him out when he is up to it.
Thank you all again, being able to contact people who understand has quite honestly kept me sane over the past year.
My heart goes out to those who maybe or not as fortunate as I, it really seems to me from reading the posts, that some carers are sacrificing their own health and wellbeing for their LO's.

I think I would tell him that he'll be staying there for a while- that you need to work and catch up. Permanent is a concept that he may find difficult. Somedays he'll understand other days you'll need to be strong.
Good luck
Sharon

Polly,
If it were me I would tell him until things improve , that it is too difficult to care for him at home!

There are caregivers that don't outlive the LBD spouse, so it is very real and I would almost bet the ones that do outlive their spouse come out on the other side with some medical issues, that they must now deal with!

Good Luck, just know we all know what you are going through and back whatever decision you think is best!

Polly--
I'm so sorry you're having to go through this and make these decisions. It is a terribly confusing disease, as I am learning here - and the opportunities to impose self-guilt are tremendous.

My husband and his mother are at the point of making the decision of placing Dad. The idea of respite care is one I'm going to suggest! We hadn't thought of that, and it sounds like a partial solution, at least.

How do you decide which facilities are high quality? Some of the nightmares we've heard - have scared the daylights out of us.

Hi Polly,

I was just recently in the situation you are in. I was able to keep John home with me for two years, he was going to an Adult Day Care during the day and doing well, but over the past few months he deteriorated fast. He was at the point that he couldn't dress himself, had problems going to the bathroom, feeding himself, needed guidance in everything he did. The Adult Day care also kept we updated on how he was doing there which he was a lot for them to handle. He lost the ability to hold a sane conversation with me, started hallucinating more and became a danger to himself. Took him to the VA hospital to have his meds checked, he walked through the doors but within 2 short days was unable to walk. I knew at that point that it would have been impossible for me to take care of him at home. I was able to find a small nursing home by me, just 10 minutes away, so I made the arrangements to put him there. Of course it was one of the hardest decisions I had to make, but I needed him to be safe and cared for by professionals. I have been going over twice a day to make my presence known there, and to be honest with you John doesn't really know where he is. Yesterday he thought he was at the airport waiting to catch the Red eye. This is a decision I had to make, because I was basically alone in taking care of him, his kids have their own life and had to be pushed to step up to the plate to help me out before. I want my life with John back the way it was, but we know that is never going to happen, so I visit him and will keep a watchful eye that he is treated good and cared for because I know I was loosing ground doing it myself and did not want to be mean or nasty to him because this disease is not his fault.
Take care and know that whatever decision you make will be in the best interest of your loved one.

B

Your story is almost word for word my story. You are correct, even when placed you have to make your presense felt at the facility.

B -
Sounds like you made a good decision. Hope it continues to work out.
Robin

My heart is breaking. I'm reading this - and thinking.."we're next. This is what is next for Dad."
I can't even imagine what my poor husband is going through.

Update on Ray and Nursing Home
Ray is suddenly going through a good spell, very clear, and no hallucinations/tremors for the last 2 days this has not happened in over a year. Last week my son and Ray went to review the Nursing Home, it was decided that I should not get involved in this aspect, as family were afraid he may be resentful towards me, and my son has an amazing relationship with his father and is good at handling the situation. to our amazment Ray was very happy after the visit,he actually interviewed the Manager himself, well as much as he could, she was very kind and reassuring.
How wrong we were about Ray.
Yesterday when Ray and I were alone, he brought up the subject himself, he asked was I okay with him going to the Nursing Home, he feels it is the safest thing for him, and he is happy that he would have the best of both worlds, being able to come home for a few hours during the day (not every day) and be in a safe environment at night.
I could not believe my ears, what a good man he is, he had pondered on the situation for a few days, and then came out with that yesterday. Taking all the guilt away from me, and arriving at the decision himself, he is truly a remarkable husband and father, even in his suffering he puts us all first. Family believe this sudden good spell is a result of the decision he has come to, he does feel more secure in the Nursing Home. this has not turned out the way I had thought it would, I expected some resentment and anger, but how wrong I was, I underestimated my truly remarkable husband. We are now waiting for a bed, and he is ready to go when it becomes available. I really think that others should take what has happened in my situation on board, because this may the solution for many, It may be that it is our irrational guilt that stops us from taking this step, but it may be where the LO may want to be when things reach a certain point. They may not want to see us struggle with toileting, straining to lift them from the floor, feeding, dressing,sitting up through the nights, maybe seeing us do these things actualy adds to their stress, in our case the family believe that this is so, given the type of man my husband always was, wife and family always came first in his life. I hope this helps someone. All I can say is I am happy with our deicision, I know it won't be easy when the day comes. I am crying as I write this, but I don't feel guilt, I know we have done all we could possibly do, I feel I am doing what is right for Ray.

Polly -
What a wonderful gift your husband gave you!
Robin

Polly,

What a kind, loving present for you...a final gift. You have a wonderful son who handled the situation perfectly. I too thought my LO would go into a home but one day he agreed the next he didn't. My neighbors offerr\ed to
"go look" at homes with us just in case one of them ever needed one too. But when the time came he would always put it off or was having a bad day. I think when they are making the decision it helps a lot. He always wanted to die at home...he got his wish. Your and Ray will be able to spend quality time together as you will not be worn down by the issues you stated. I sometimes wonder how we made it through all of that. Great decision! Blessings to you and your family.

Polly,
Yes truely a gift on your Husband's part and I think you might be right about adding stress to their lives watching the amount of care they need at home, none of us would want our LO"s to care for US in this manner either!!

Polly, you must be a wise and discerning woman to have chosen such a man. May your good times together outnumber your bad from this point forward!

Oh, Polly, how wonderful to have peace in a difficult decison right for both of you.