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

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.

Thank you. I appreciate your thoughts and suggestions. Intelligent conversation would be wonderful. I have had difficulty finding the right support group but will keep looking.

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?

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.

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.

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!

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!

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?

My husband died 4 and a half years ago, after living with dementia for 10 years.

Jeanne, it doesn't seem like that long that Coy has been gone. Time keeps passing, but it still feels like it was just yesterday. I know you still miss him. He seemed like a good person, even when Lewy was with him.

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

Thank you for sharing that. It does help with perspective.

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.

Pammer, not knowing where you live (metro or rural), there might be options you haven't come upon. I belong to an online/interactive Alz support group with a large/mixed demographic that is helpful for venting, advice, sharing info, etc. Meetup.com has a variety of outlets and I know one man on the support group site found a social niche - much needed after his wife passed - that had nothing to do with her illness...I presume you've explored your "alternative" living options whether together or separately? So many decisions. I had to chuckle about your "realization" that you're "senior-ish" - funny how that sneaks up on you?! Reminded me that it wasn't that long ago, 62 would have seemed "old" to me (no offense!), when in reality you only have 12 short years on me.

Agree about Senior Centers. True, most members are older than 62, but that doesn't mean they are dull and boring! They often take interesting outings as well as offer dancing or Spanish lessons! The YMCA also has a seniors' program. Take classes at a local college offering continuing education if you can. I have played bridge for most of my adult life, but having moved "back home" to near family, I had to find a new group at the local bridge club. I don't attend church, but if you are so inclined, you'll find lots going on there as well. Since your spouse has day care, you have time to pursue interests that perhaps you have not tried since before your marriage.

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.

Hi pammer!
I agree with everything jeannegibbs said. I have only two things to offer.
1. Keep searching until you find the right support group. Even if it's in the next town over. If you can't find what you're looking for then start your own. That's what happened in my community. We have people who drive from town to our group in the county. We have had whole families show up. We are a very proactive group that is always searching for solutions and ways to work around problems. The right support group is critical.
2. Besides finding groups to join, get away. Daycare is wonderful. I wish we had it. Go on a trip. Go visit friends or family. Join a tour group and go someplace you've always wanted to go. Check out the colleges around and see if they have any study abroad courses. My local community college has classes to Italy and Greece. Getting away where you can step out of the caregiver role is critical to self care.
Good luck.

I don't know if it is possible to put her in respite care for a few days or so. But if it is or you can get someone to come in that you trust. Do something. Our Senior Center sponsors both short and long trips. For example, I live in So. Calif. and they have both day and overnight trips to Las Vegas, NV. Train trips to the beach and bus trips to say the Zoo. You don't have to be a couple to do these things. In fact most people aren't couples.

Pammer, have you read "My Two Elaines: learning, coping and surviving as an Alzheimer's caregiver" ? It was written by a former Wisconsin (Governor Martin J. Schreiber) who cared for his wife for over 10 years. You may see yourself in the book but get the benefit of what the author learned. Good luck.

I think you are getting wonderful support here online and it is time to go to support groups. The Alzheimer's website can connect you with some local groups.

Start looking for activities for you while she is at daycare. This could go on for a very long time, and you need to make friends, and manage the friendships you still have to keep them going. I never thought my mom would be around this long. I've been dealing with it for almost 12 years, and I'm 50. Stopped dating, stopped traveling, stopped really everything because her care agencies have been so unreliable. Now that I have 3 good caregivers (for right now, anyway), i have no money, so I can't go to a movie or go out to dinner anyway. I just throw myself into my job and keep my head down. I pray a lot, and that seems to help. I also know by following this forum that my problems pale in comparison to those of other folks. Try to maintain your friendships, and look for a book club or something like that. Meet up . com has been a good resource for me in the past.

Not only do you need to worry about keeping yourself happy, but you also need to worry about keeping yourself safe start chance start becoming combative, but they also start becoming physically combative and start assaulting people at some stage of the disease. You might need some help with this because even if you can't put him into a memory care place right away, you can move him to a granny pod now available for elders. They sit in the back yard as a guest house. I'm not sure if you buy or rent them, I don't know because I've never had one but I have seen them online. You may want to check into this because moving him to a granny pod will save your sanity to some point. If that don't work, you'll probably have to move him to a memory care facility

I am also 62, and remember my husband saying we would go traveling when he couldn't use his boat or fish. Well, now he can't because he has Alz. I feel very depressed at times because I would like to do things that I am unable, because he can't be left alone.
I have gotten some help and have a few close friends that keep my spirits up. We play tennis and keep in shape. And I keep telling myself things could be worse, I could be the one lying in the bed.
I want to feel good about my taking care of my husband, because I know he would do the same for me.

Are you at all interested in family history or geneology? Your wife might have memories and stories of earlier times in her life that might bring back good memories for you, as well, and if you like to write, you might be able to write up some things that would have family and/or local historical value. Take advantage of what memories she still has! My brother who had dementia with Parkinsons used to tell old stories that would have been lost. Sometimes it's amazing how clear the old memories are--take advantage of it, spend some time in the "good old days".