How do you live with a spouse who has Alzheimer's and keep yourself happy?

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How do I live this life? It has been very isolating and empty. We have actually lost "friends". We have 2 family members that are barely involved. So there is our little world. I do not enjoy being with my spouse because of the constant questions that make very little sense, so I try to get friends to take her for an over night visit. I am grateful for that time, but it happens every 3 months. I find that I am running away from her because I am so unfulfilled and unhappy. It has been 5 years now and she is still home with day care 5 days a week. Yes, I again am grateful for that, but nothing seems to be enough for ME. Yes I said it. It is about me. I am 62 and feel so hopeless and unhappy.

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Pammer, I lived with my husband through his 10-year journey with Lewy Body Dementia. How to be happy? There were certainly times when I didn't think I would ever be happy again. But I was! My suggestions are:

1) Try to create some moments of joy with your wife. "Dance" around the living room to music you both like, even if there has to be a walker between you. Often music is still appreciated by person with dementia.

Sit and look at old photo albums with her. Both my mother (also dementia) and my husband liked this very much. Even if she doesn't recognize the people or events she might like looking at the pictures. If you don't have albums dig out the shoeboxes of loose pictures.

Figure out what makes her happy and try to make that happen often. Does she light up when offered a Popsicle? Make it a routine of offering her a Popsicle every day after day care. Sit on the patio or the porch in good weather.

I know you were asking about your own happiness. But I honestly think/experienced that finding ways to connect with your spouse in the here and now helps reduce the feelings of isolation.

2. Find ways to connect with other adults. I highly recommend joining a support group of people caring for someone with dementia. I don't think I could have gotten through the 10 years of my husband's dementia without the wonderful supportive group I belonged to. Some of us were caring for spouses and some for parents, but we all understood the special challenges of dementia.

Get out of your rut. Think about something other than the woes of your marriage and talk to intelligent adults. Try your senior citizens center. You don't say where you are from. Small towns sometimes have fantastic centers and the people who go frequently develop into a close-knit group. City centers are sometimes better funded and serve more people. Our local center sponsors a senior bowling league. They bowl every Tuesday morning. They get a discount. And mostly they have a lot of fun! That is just one example of activities. They have book clubs, scheduled card playing, always something going on. Since your wife has day care, their daytime activities would be perfect for you!

Most activities happening in the daytime will attract mostly retired people. There will be many people in your age bracket.

Did you used to golf? I'll bet you that your local course has a special time and discounts for seniors. Check it out. Whatever your interests were before your wife got sick, pull them out of mothballs and do them!

You are still young. Your wife's illness will not last forever. You still have a future ahead of you. Look forward to that. But take action in the here and now. You're not the one who is ill. Get out and do some fun things!
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Pammer, your feelings are very understandable and normal. You are doing the right thing by reaching out and looking for answers and support. There are other people in your situation who may be able to offer you a lot of support and information. I'd keep trying to find that.

I would also read as much information as you can on options. Options are important, because they give you the ability to control your life. I would explore what options you have available to you and then make some goals and plans. As family members of those with dementia, we know that there is only so much we can do, as this condition is merciless. I might consider what is reasonable and what you are going to be able to do and then act accordingly. I would not give up on happiness. There is still hope for you to have that. Sometimes, when you are in the midst of a situation, it's difficult to keep that in sight.
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You're not alone in your feelings. The person you are with now is not the same person you married. I have the feeling you're longing for human touch and intelligent conversation. You're probably looking for a little enjoyment in life. There are no easy answers. Perhaps you could find a group of like-minded people, maybe in a support group for spouses who are caregivers. They may be longing for the things you are, but understand your limitations at this time.
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I agree Sunnygirl that you should not give up on happiness. When my MIL (now deceased) was diagnosed with a neurodegenerative disorder, my FIL became severely depressed and highly anxious. He always was a tightly wound man but knowing that his retirement would be nothing like what he imagined was more than he could handle. Dealing with his neuroses about her illness made matters much more difficult on everyone, including his wife. But my MIL's brain was fully intact until the end. She was still his companion. It took time but they adapted and moving them to independent living helped.

Now that MIL is gone, FIL talks and behaves as if he has no more companionship. And his perception is his reality. He's also more than 20 years older than you. We make efforts to spend time with him but it's important that he spend time with his peers. Unfortunately, he chooses not to and he is deteriorating quickly. Give yourself permission to put you first.
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She is no longer capable of providing you with wifely companionship and comfort. She has become a burden. Were she able to engage with you on a meaningful level, a support group would help you learn how to adapt. But that is not the case and a support group in your situation is about coping. It sounds to me like you want more out of life than just to cope. You are only 62. Have you considered joining a group where you can engage socially and find the companionship that you so clearly desire?
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I really feel better already with the support you have all given. I would love to join a social group. That is a great idea. I think my focus and decision making has been clouded by my unhappiness.
I also agree about finding options. I really appreciate all the ideas. Thanks so much!
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Wow! That was a bunch of great advise. Since we both just turned 62 I never thought of myself as a senior. So I have some work to do.
Thanks for the kick.!
How long has it been for you?
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My husband has had dementia for about 4 years now. This past year he has gone downhill at a faster rate. I am still able to leave him for about 2-3 hours at the most, but I joined a card group here in our development and am able to get out among "normal" people once a week. I also joined a support group for memory loss/Alzheimers that meets once a month. Getting out has helped me cope better. Check out a senior center near you. Ours has lots going on. Our church also has things to do. I feel like I am being denied a lot of living. He is 81 years old and I'm 75. I still want to travel but can't anymore. Besides his dementia, he has congestive heart disease and now it looks like his kidneys are starting to be compromised. I feel like I lost him when I first heard the diagnosis. I've pulled away from him emotionally, physically etc. He's not the man I married anymore. So if I don't get out alone I become depressed and lonely. I feel isolated. So my advice to you is to get out and do things while you still can.
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You might find this helpful. I did. From something I was reading today on types of grief.

1) The Loss of a Person We Once Knew

Sometimes the people you love change in significant ways. They are still in your life—but not in the way you remember or once knew them. Illness often changes people, especially mental illness or dementia. In dementia, a person still is with us, but is not like the person we previously knew. The ties that bind us to one another, the shared memories and even the personality are no longer accessible.

2) The Loss of a Person We Haven't Yet Lost

Anticipatory grief is a term that refers to the grief felt about someone with a life-limiting illness; friends, family and caregivers often experience it in anticipation of an eventual death. These losses are significant. The loss of health—even the prediction of loss—contained in a diagnosis can be a source of grief not just for the person diagnosed, but also for his or her loved ones. We lose our assumptive world. All our plans, thoughts, our sense of the future— even our sense of safety and security—are now challenged. The future we know is not the one we once imagined. As any illness progresses, we continue to experience additional losses and grieve each one.

3) The Loss of the Person We Used to Be

Waiting for the school bus with my grandchildren recently, on the second day of school, I heard a young neighbor complain to his mother that he went to kindergarten yesterday! His mom patiently explained that he would now go five days a week to kindergarten—instead of his two-day-a-week preschool. The boy looked at her with disappointment, tears in his eyes. This changes everything! he complained.

It does. Everything changes as you age. Some changes you take in stride, but others affect you deeply. Consider the birth of a child. You may have anticipated this event for years and be overjoyed. But you also know life will be different now; over the next couple of decades, your own freedom will be limited—and for a shorter period, so will your sleep.

Each transition in our lives—no matter how positive—has an undercurrent. The thrill of passing your driving test and earning your license held so much meaning, a mark both of accomplishment and maturity that promised new freedom and adventure. Now, imagine the pain and grief when, through age or disability, you are forced to surrender that license and all it has meant.

Remember: Grief is not always about death, but it is always about attachment and separation. Often, people endure pervasive and intense distress without having faced the death of a loved one at all. Further, in these cases of unrecognized losses, our grief is often not recognized by others, either. But you can grieve the loss of anything, anywhere or anyone to whom you had become attached—no list could name all the possibilities. To deal with the sorrow, you may need to find confidants, counselors and support groups that can assist you. Above all, you need to have your grief acknowledged. Allowing yourself to understand the validity of your emotions is the only way to begin feeling better. You are not the only one to have mourned in these situations—and you are not alone.

This adapted excerpt was taken from Grief Is a Journey, by Kenneth J. Doka, PhD. Dr. Doka is a professor of gerontology at the Graduate School of The College of New Rochelle and a senior consultant to the Hospice Foundation of America.


Read more: http://www.oprah.com/inspiration/the-kinds-of-grief-nobody-talks-about#ixzz4gMTpAWWN
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I could have written this...
My husband had Dementia for just over 10 years.
I always said I would keep him at home as long as it was safe to do so. Safe for him and for me. I would have had no option but to place him if he ever became violent or even a bit aggressive or combative.
So be prepared to make that tough decision if you ever have to It is NOT giving up it is getting the best care possible. I am sure if you went back 20 years and asked your wife "what would you want me to do if this happens.." she would tell you to do what you have to do. So no guilt!
Back on subject...
I got caregivers to some in and that helped a lot.
I also got involved with support groups. There were people that knew what I was going through. I was also able to help people that were going through what I was going through. Together we all seemed to manage and help solve problems. and we cry a bit together if that is what is needed.
The other thing that saved me was Hospice.
I knew he was not going to get better.
After he broke his hip (true slip and fall, blasted mid west winter and black ice) I called Hospice to see if he was eligible and he was. Through Hospice I got equipment that I needed, help that I needed, support that I needed.
Together we all went through the Journey.
My husband died at home the way he would have wanted, no feeding tube, no respirator, no IV's.
And please, as difficult as it may be later on I urge you also No feeding tubes, respirators or IV's.
Enjoy the good days you have now, but get out and do something for yourself at least several times a week.
Volunteer, go for walks, join support groups, go to a movie. You need to do things to care for yourself.
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