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Married for over four decades to a nice, successful guy. Now? Nothing is left. He is happy in his own world.


Life must go on but how? What is the new purpose, the new meaning that would bring fulfillment?

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It is truly a mini death, one in which we are in no way "freed" to move on in our own minds. But we must because there is no other option. For some it is a matter of time. For others, they actually ARE freed by fully knowing and understanding just exactly what you wrote so well. For still others a few hours with a counselor, either Church if they are believers, or trained licensed Social Worker trained in life changes, or psychologist, will work better in terms of helping you see your way forward. Don't have expectations of yourself. Give yourself time. You don't say how long your husband has been in care, or how long ago he descended into his own world. You have much to be grateful for in that he is somewhat content in his world, as you can see from reading the Forum that so many are not.
As to "life's purpose" I would bet that your only purpose in life was not simply to live it for your husband. I would suspect you have things that you liked to do. The end of life is generally a time for contemplation, hopefully contentment, to explore travel if you are able to wish to, to work in a garden, walk, read, enjoy time with friends. If you are able it can be a time to volunteer and share experience. The meaning of life is what we make of it, to my mind. An individual journey, not dependent wholly on another person or persons.
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Reply to AlvaDeer
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Congratulations on beating the big C. Your in good company with others, including myself, on this forum.

Whenever I hear someone say their LO is aging backwards, I recall the movie The Curious Case of Benjamin Button, where a man ages backward and finally dies as an infant in the arms of his elderly sweetheart. LOs with PPA or dementia symptoms do become more childlike as the symptoms progress.

Asking how life goes on, its new purpose, and how to seek fulfillment, are questions we usually ask after the loss of our spouse. You apparently, are anticipating that. And that's not all bad. You realize that you will be on your own soon. Your new purpose and your new meaning of life is something you must discover.

Your husband is only 60 y/o and may have many years of life ahead of him, and although he is in MC, you are still his advocate, his caregiver, his wife of many years. I'm pleased to hear that he seems to be happy in his environment, that implies a caring, thoughtful staff. As happy as he is, you seem to be distraught over the future without him. This is the anticipatory grief we all go thru in looking into an unknown future, the ambiguous loss we as caregivers suffer knowing our LO is still alive but, nevertheless, is lost forever. These are normal emotions and the only preventative for them is to have never loved, as C S Lewis says. It wasn't until the loss of my wife of 52 yrs that I asked myself “Who am I w/o her?”, “What defines my life?”, “What will be my new normal?”. All of those questions I had to answer for myself and you will also.

Once your DH passes away, the grief of losing him will continue for a long while. That, too, is a normal emotion. But you can work thru it if you choose. Although it may be early to recommend this book, I think it will help you in working thru your questions. The book is “Getting to the Other Side of Grief- Overcoming the Loss of a Spouse”. It may be at your local library or you can buy it from Amazon.

You know the Serenity prayer, “Lord, grant me the serenity to accept the things I cannot change (your husband's disease), the courage to change the things I can (re-inventing your new normal), and the wisdom to know the difference. I wish you the fulfillment, comfort, and peace you're looking for.
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disgustedtoo Mar 9, 2021
Very nice comment! Well said.

It is good to hear that OP's husband is relatively happy in his own little world. So many of those with dementia are not. It probably makes it harder for OP, because he's still so nice, probably as he was before.

Losing a spouse or other LO before their time or even later is rough on us, but when the process just lingers on and on, with no end in sight, it makes it hard to reconcile.

OP does need to follow your advice about "reinventing" her normal, but can continue to express her love and care for her husband even if he doesn't recognize her (at least once lock-downs are over,) Some time and care is devoted to him and his needs, while some time is devoted to doing the things one loved doing before, keeping or rekindling old friendships or finding new things to try and making new friends can be part of finding that new "normal." Dwelling on the loss won't change anything, so it is better to put that aside and revel in each new day. The sun shining, birds returning from their winter retreats, vaccines bringing us closer to more freedom, the grasses and trees putting on their spring finery!

Look to the future, but hold the past close. Recall fond memories of the good times together. Spread your wings and fly when you can.
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I think you are mourning the loss of the person you married, even though he is physically still living. You no longer fill the role of wife or life partner, because he is no living in his own reality. You will have to define a new purpose for your life. Do you have any hobbies- sewing, quilting, gardening that you can now indulge in?
As a breast cancer survivor you are perfectly qualified to talk to other women who have been diagnosed and help them. Volunteer to help adults learn to read, volunteer at an animal shelter, take a cooking class, or learn another language. You will find something to do to give yourself a new purpose. Sending you a giant hug, because I'm facing your same issues, only my husband is not quite ready for memory care yet
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Reply to Maple3044
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I'm also having trouble dealing with accepting that my husband will not be getting better. He's in a memory care facility since Sept., 2020, and only 68 years old. Dementia set in over 6 years ago, now diagnosed Alzheimers since 3 years ago. He knows me, but now having a hard time with conversations since he can't verbalize what he wants to say. It's so hard to deal with, and I get as depressed....maybe more than him....with adjusting to my "new life", here alone. Very little family support since most live distant. Hardest thing is that a couple "close" family members haven't reached out to give me support, leaving me distraught and helpless, sometimes not wanting to go on. I pray every day/night for strength an courage. The constant thought of guilt for his condition and putting him in a memory care facility overwhelms me, but after several years of dealing with this, people tell me not to feel guilty. It was becoming physical at times with his anger issues, so I had no choice. Now the stress is that his care is draining our retirement fund to pay for his care, and now having to worry about my health and future and how to deal with this alone, with no help. In our county in Ohio, there are no support groups to lean on, plus Covid has deterred many places for people to meet and connect with. Starting over in life is so hard....my lack of concentration due to worry keeps me from getting into any type of hobbies. Any suggestions would be helpful.....thank you.
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Mrsrubee Mar 9, 2021
I’m in exactly the same boat. I moved my husband to a small, residential care home the end of Jan. He’s upset just about every afternoon and beside himself with anxiety by evening. I have to constantly remind myself that he was this way at home. Only the stories he comes up with to explain his world have changed. And the financial worries with paying for this! Yikes!

I so wish for him to be happy. But he wasn’t happy at home and now he’s not happy there. But knowing that doesn’t make me feel better. I know I need to start living my life again. Do the things I haven’t had time or energy to do for years. But guilt is a hard thing to get past. And that robs me of some of the pleasure these activities could give me. And Covid doesn’t help.

Hang in there. We took care of our husbands for many years. That took fortitude. We’re both new at this living alone thing, but we’ll get the hang of it. We just have to work on our “second act.” While we still have a lot to do for our husband’s, caring at this new distance gives us some breathing room. I think we need to use that space to rediscover ourselves. Speaking just for myself, I know I got lost in the daily drama of caring for my husband and living in his crazy, fractured world. I know I’m not yet a whole person again, but I’m going to get there.
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Thank you AlvaDeer,
Your answer is very inclusive and wise! I do volunteer, garden , read, see family and friends, count my blessings and give love to every one around me. As we age, which comes so fast, we are done with careers, raised our children and now watch them be good people.
What a drastic change. I am working on accepting that all of this is normal. Yet a difficult new norm. We must stay strong, taking it one day at a time. God is a step ahead of us, but it is hard to remember. 🙏
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vicky64 Mar 9, 2021
You are so right!  It is hard to remember that God sees the other end and we just see the here and now!!  but it is so comforting to know!!
I sounds like you are doing 'all the right things".  Now maybe is the time of life when your life shows someone else "how its' done".!!  God uses our lives differently as we age.  Rest in Him.  He really will see you through!!  And know that you are an example to all those family and friend who experience tough times!!  God Bless!!
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Caring for Someone with Alzheimer’s is a state of continuous grief. If you don’t have a support group in your area (although try the Alzheimer’s Assn spot), I would suggest a therapist. It is someone you can unburden your fears and grief to. Anti depressants and anti anxiety will also help - they are not miracle drugs, but make it easier to handle the day to day. My husband is now in late stage under hospice care in aSNF - 67. Since I can’t help him, I find it helps me to do things for others. Until covid hit, I would hand out blessing bags and coats to the homeless. Now I’m making quilts for children and infants for Project Linus. Yoga has helped me immensely and I’m able to do it on zoom. The advice of looking at your hobbies was a good one and any interaction with people (covid safely) also helps you keep contacted - book group, walk with friends, etc. I’m Best wishes- this is such a tough journey. HUGS.
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Reply to Franklin2011
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Only you can decide that.

BUT, even tho you don't think your husband knows you any more and in a world of his own, you should continge to visit him.

You should join a support group with others in the same boat.

Keep yourself busy, Volunteer, make new friends, take a free course in College that you're interested in like Astrology, Photography, ect.

Prayers
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Reply to bevthegreat
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Are you talking about a new purpose and fulfillment for yourself? Look around you for things you want to participate in and look for new friends who share these interests. Maybe it will be a sewing circle or online Physics classes or a Book Club or volunteering at a Food Bank. Look for people who need you.

How nice that your husband is happy and comfortable in his own world. Make the time you spend with him as happy as the moment allows.
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Reply to RedVanAnnie
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My LO was in MC but had to be moved to SNF . He is not content. I only wish that he would be “happy in his world because there’s nothing I can do. He is being well taken care of by a skilled caring staff. This makes my life difficult knowing he’s so unhappy a good part of the time.
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Reply to psuskind1
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He is still a nice guy who was successful. Visit and be his friend. Find ways to bring the joy and beauty of the outside world into his place.

You are still a woman with needs for friendship, joy, and purpose. Take time to look into your heart to see what your passions and abilities are. Use them to make life better for yourself and others. It might take the form of volunteer work, a new career, helping family and friends, creating beauty.... You have time and this new chapter in life.
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