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Assisted Living

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Without belaboring what's been going on here, I really need some feel for why people in my generation, late 60's and up, get so on a high horse about putting someone into respite care or into assisted living.

We hit something of an ephiphany here yesterday in that after a weeks discussion, My husband said he wanted to look at somewhere for respite care. If I have gone away in the past, it's with a pasted together group of people who hopefully would show up when they said they would. Also, my girls have been great to take family leave and come care for their dad but they both have very responsible and stessful jobs and this is not fair.

We are fortunate to live in a very high rent district with excellent care facilities. The newest and the best was the last we visited and it was beautiful, alot of men around who enthusiastically endorsed the place instead of alot of really ancient people clinging to the walls or in wheel chairs.

The staff were young, bright and cheerful, not burned out.

I had lunch today with two friends (former friends?) and told them I thought this was a grand solution for my husband . They were shocked!! Felt I should take him into a total care facility and yada yada. They, of course, hadn't stayed up half the night with him nor had they just changed all of his clothes before we left (he had lunch with their husbands) because he had wet himself head to toe.

We have tried overnight in home help. They too have burned out. We have, thank heavens the resources to deal with this in a way that I believe will be good for him and good for me but the major feeling seems to be that I only think it would be good for me, ie., better throw yourself on the funeral pyre.

I wonder why the generations coming on can walk away from a hangnail with no blame while people my age resent and put down a cg who is looking for a solution that might be of more value to both people involved.

Obviously I am angry and really venting. We've really had 5 very hard years, and yes, I know many on this list have had it harder and for a longer period of time but I am so burned out at this point that I feel I have no peace of mind. One of the problems has been that my husband goes around the in house help to get to me if things aren't to his satisfaction.

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Do you think maybe many many people in our generation have somehow acquired an overblown and unrealistic sense of responsibility? And it sounds like this particular group of friends possess an oversupply of judgementalism :-(. Are they afraid that if they agree with you, their husbands will find out about it and worry that their wives would be willing to send *them* to respite???

I think you are incredibly lucky that your husband has recognized the need for respite, and I will keep my fingers crossed that you can strike while the iron is hot and that your husband will adjust well. Let's hope!

It sounds like you've found a good facility. One of the things they should be able to do for the 2 of you is give you an honest assessment of level of care that your husband requires. That should reaffirm YOUR need for respite, since you've been the one providing almost all of that care. You can probably get an independent assessment of your situation through your local Area Agency on Aging, too. (In fact, that kind of assessment is required, before NH placement, where I live.)

I can't begin to express my admiration for what you do for your husband and your generosity with CARE.

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I think YOU are the BEST judge of what solution fits your situation. The fact thay you have threshed this out with your husband and he is agreeable speaks volumes. When I had to have surgery, Peter chose to spend a few days in respite care in a local nursing home--not upscale, but he did get a private room. He felt that having 3 shifts of different helpers every 24 hrs would be "chaotic" (his word).

I would say, Go for it-_-you've done your homework, apparently, and your husband is agreeable. never mind those "former" friends" who are not wearing your shoes ! We all know very well what a caring CG you are--and how much you deserve that respite!

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I am sorry to hear that you have folks giving you guilt trips. You don't deserve them one bit. My mom spent 9 yr. in a lovely Assisted Living and it was great. she felt like she kept her independence longer, developed a circle of friends, with the assistance and 3 meals was able to put her energies into the pleasures of life, rather than the routine, maintenance parts of life. Where else could she have moved and within a week had 3 lovely ladies to play Canasta with 3 times a week. I could never have been able to provide that for her.

I wonder if the different reaction from people older than 60 is because of the relative newness of Assisted Living. They may just automatically conjure up a 1950's Nursing home in their brains, a time when things were rather bad.

For what it is worth I say - move into the lovely place, invite your hesitant friends to come and have a nice dinner served to them on a linen tablecloth, show off the place. Who knows, they may be putting their name on a waiting list.

Besides - it is a wonderful way to have your hubby's needs met without killing you in the meantime.

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Your question is a good one. I talked with my husband a few weeks ago about our age, our house, my health, his health. We decided together that Assisted Living would be the best when the time comes. And as I see it that might not be long off for us. I think it would be a hoot to have someone else come in and check on us. I'm tired of checking on us. And to make friends would be wonderful. All of our old friends never come by any more because they don't want to see my husband the way he is now. Well, I don't either but I don't have any choice.

I think your decision, together, is a good one. Don't worry about what other people think. They haven't been in your shoes and they just don't have any idea what goes on in the care of a loved one. Not all my children knew until I got sick a few months ago and had to go to the Emergency Room. The one daughter I count on all the time was in Dallas with her husband on vacation. I had to call on the other daughter who lives here in town to come to the house and take care of her dad until her sister returned. She (the one who took care of her dad) learned a lot about his care. In fact her and her boyfriend have agreed to take my husband to Georgia in October for a couple days. I am so looking forward to that time to myself. I can hardly wait. My only problem is I don't think 2 days is enough. They should be gone for a week. I could use that resting time.

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You have to do what is best for you and your husband. Putting it bluntly, to h--ll with those who choose to second guess your decision.

I am 62 and my husband is 74. We have both decided if he ever gets to the point again (we were there 1 1/2 yrs ago) where he needs constant care, assisted living is just exactly what we are going to do. We have a wonderful facility here in town. I have several friends that already live there and they are very satisfied. One friend is now in Italy for 3wks. She left knowing that her husband had at hand everything he could possibly need. She is in good health,he has multitude of health problems. People that have no clue what you both go through day to day really have no right to judge your decisions. Assisted living makes perfect sense to me. Go for it before you to become ill.

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Bless you for all you have been through. I don't blame you one bit for being upset with your (former) friends. I don't understand their objection to assisted living, though. Why do they think a total care facility would be better? I know people who think the caregiver *should* throw herself on the funeral pyre, as you say, and that anything less smacks of selfishness. HA, I say! Let *them* try it for 48 hours. However, the usual objection I hear is to any kind of out-of-home care, and I'd think that a total care facility would be sort of the extreme on the continuum. Do they think he won't get good care in the assisted living place? Do they think he needs more care than that can offer? Or did they bother to listen at all?

What you've talked about illustrates very clearly why so many caregivers, myself included, tend to reduce their circle of friends over time. Those who are devoid of empathy and make no effort to understand are not going to add anything to your quality of life, and in fact will simply drag you down at a time you need to be lifted up. Those of us on this list know what you've been through, and I suspect everyone is as admiring as I am of the way you've held up through all of this. When I think I'm having a bad time, you're one of the people I think of. It helps get me out of the "I can't deal with this" slump in a hurry. We're with you in spirit, and are here for you to vent to whenever you want.

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If there is one thing I have learned in this life it is that I can't live my life in such a way that everyone will approve of what I do. I do hate unsolicited advice about what I "should" do about my husband. I certainly hear you when you say the past five years have been very hard, and I think you are fortunate that your husband wants you to have some respite, and you have found a good place. nothing is really ideal in dealing with this dastardly (our Neurologist's words) disease, and when others try to tell you what to do, they are merely trying to be helpful, but they have not walked in your shoes.

The best thing anyone has said to me was my youngest daughter when she said,"Mother dad's life is really over, but yours is not, and we want you to know that anything you decide is right for you is right for us." And my children have stuck to that. I have done it all myself, put my husband in a full-care nursing home, and now (for the past four years) have him home with full-time in-home care for which I am using my children's inheritance. So far, the children have not tried to second guess me, but sometimes friends do. I figure they are just trying to be helpful and that unsolicited advice feels great to the giver but does nothing for the receiver.

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Only you and your family should make this difficult decision. No one else has the right to make you feel guilty, especially all those well meaning friends who think they have to give you advice. Only you know what your life is like behind your closed doors at night. It is your tears that are shed in frustration and anger at this horrible disease many a time.

My advice, get together with your husband and children and , perhaps, other close family, make the decision and follow through with it. And whatever you decide together, never look back,but make the most of the life you all have left. It might be the best move you have made in a long time..and try to minimize the guilt feelings. They will always be there to a certain extent at certain times. A friend of ours whose wife passed away a few weeks ago, she had Parkinson's, called recently. She had been in an assisted living place, a decision made by the whole family, and not an easy one, for about 2 years. He said that he was glad they had made the move. He went to visit her every day, she had the best care, was usually in good spirits when he visited, and they spent quality time together, looking at old photographs, reminiscing, holding hands. He could not have given her the professional care she needed at his home.

There are pros and cons, but you, your spouse and children only can decide what's best for you, not friends, neighbors, and acquaintances.

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