It's difficult taking care of my husband with Alzheimer's.

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I take care of my husband of 54 years. He seems to be progressing. I am fortunate that he is a very happy person. Never gets mad and loves to talk to people. I feel like I am loosing a little bit of him everday... which is probably true. I have a very supportive family except for one which makes it very difficult for me sometimes. He and one other son live close. The other two are miles away. I need the support of all of them. It really hurts because I do not get to see my grandchildren as much as I would like to.

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This is my first post on this site, although I've been reading it for over a year now. My husband and I live in Texas - he's 72. After extensive neuropsychological testing ordered by a neurologist, my husband was diagnosed with dementia almost three years ago. I thought, “OK, I can do this. I’m strong, I can handle anything.” Boy, did I underestimate what was ahead.

I am fortunate because my husband, too, is kind and loving. He's resistive sometimes, but not combative. He's only had a few outbursts so far. It breaks my heart to see him falling prey every day to this unrelenting disease. Although I reassure him regularly, he's terrified I will take him to a 'home' and leave him there. I, too, have promised him I would not abandon him and will keep him with me as long as I possibly can.

We did not plan well for our retirement, so I have to work full-time - but I am blessed that I am able to telecommute two days each week to keep an eye on him. He can wash himself, but I need to tell him each step, which he hates. He pretty much can't do anything by himself anymore. He's gotten to the point that it's probably not a good idea for him to be alone during the day, so I'm gently trying to get him used to the idea of going to Friend's Place, which is a day care here in Texas for those folks with dementia. He doesn't think he belongs there - so, for now, he won't go without me. We are going to lunch there on Tuesdays and Thursdays until he's not so resistive.

We've done all the legal 'stuff' - Durable POA, Medical POA, Health Care Directive, wills, etc., so I think we're O.K. from that standpoint. It took me a year to pay off the attorney, but I think it was worth it - especially since we did it early on while he was able to sort of understand what was happening. He regularly sits in front of the TV watching the Spanish channel - but he doesn't speak or understand Spanish. Or he'll watch TV with the sound off. I think it's because he doesn't comprehend what's being said anyway, so it really doesn't matter to him.

The biggest thing I've had to learn over the past three years - and I'm still learning this - is that I have to learn to live in his world, because he can't live in mine anymore. There was a lot of tension for the first couple of years because I kept trying to get him to adhere to my schedule. Since he had to stop driving two years ago - and I have to literally take care of everything - I wanted him to follow my directions. His pride gets in the way but, honestly, he really can't - and it's not his fault. He's doing the best he can with what is left of his thinking, which isn't much.

Sorry for the long post - and I don't even have a question. But it was one of the first comment strings I read that dealt with spouses, rather than parents - and I could relate. This is a second marriage for both of us, so we've only been married for 27 years and not as long as some of the others - but it's still hard.

Please don't think I'm complaining. I've been blessed with good health, a husband who loves me, the ability to hold down a good job, children who mostly understand what's happening and what I'm going through - and most of all faith in my Lord and Savior, Jesus Christ. I can do this with His help.
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Thank you for your words of loving kindness. I miss my other half everyday, he is in a nice home, but his children forbid me to see him. I am in mourning alone but holding on to my thoughts of our loving time we had together, even though he cannot remember our times, I know he feels he was loved deeply.
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It is very, very difficult to have a spouse with dementia. You truly do lose him (or her) a little at a time -- someone described it as losing someone one memory at a time. Dementia progresses. As it gets worse there are new losses. We grieve the new loss, but it is not an "official" loss. It doesn't get in the paper and friends don't send flowers or drop by with cookies and bars and hugs. It is a very lonely kind of mourning. Not only do we not have public acknowledgement of our losses but often outsiders or even family members make our lives more difficult with criticism or constant uninformed advice.

The best thing for educating children in my opinion is to have them fully responsible for the care of the parent with dementia for several days. Go away for some respite. Let the children decide who is going to take which days but make it clear that each child needs to take some days and you are available only in an emergency. Early in my husband's dementia I was hospitalized on an emergency basis and the 5 kids had to step up and cover care of Dad 24/7. Not one of them has ever second-guessed my care. They were very supportive.

I promised my husband that I would never abandon him. We talked about the possibility that a time may come when I couldn't personally meet all of his needs in our home. If that happened I would very carefully pick an excellent place near enough so I could spend time with him everyday. I would be his advocate. I would see that he got excellent care. I would never abandon him.

It is the nature of dementia that the loved one may reach a point where it is impossible to care for him at home. That, too, is very very sad and hard for the caregiving spouse. It is another huge loss, and sometimes the grief is exacerbated by criticism of family.

My heart goes out to you, lovingpatience and doedoe1237 and all of us caring for spouses with dementia.

My husband died last month, after having Lewy Body Dementia for nine and a half years. A book I found very helpful was "Loving Someone Who Has Dementia" by Pauling Boss. It helped me understand my own challenges and feeling throughout the journey.
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I am taking care of my husband of 59 years and mostly he is still a gentleman and
grateful for everything you do but he is getting more than I can manage. He has dementia and he shadows me constantly and I have a lot of paper work to do besides daily living i.e. laundry, shopping, giving him his meds, dr. appointments ,etc.
I have reached the place where I must consider putting him in Nursing care but I don't know what is best and the cost of some are so high our savings would be gone so quickly. I don't know what to do. My kids support whatever I decide .
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