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I. How We Work in Washington. Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services. APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
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V. Complaints. Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights. APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.I agree that: A.I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information"). B.APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink. C.APFM may send all communications to me electronically via e-mail or by access to an APFM web site. D.If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records. E.This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year. F.You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
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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.
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. 🙏
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!!
Few of us die at the same time as our spouse. If it happens, for example in a car accident, the pain is transferred to our other loved ones. I can’t really focus on preparing for life after my husband’s death, and in fact my life expectancy is probably shorter than his. I hope that he would get a dog (which I don’t want), and find more friends and be happy. I’m not traveling all that well physically (back troubles), and he copes brilliantly with that, but I don’t know how he would go without my mind as well.
I don’t know that either of us have prepared for an ‘after-life’ without each other to relate to in the same way, but I hope that each of us would have the courage to do our best. I hope that you can do your best as well, for everyone’s sake, including yours and the husband who loved you. Very best wishes, and thank you for re-inforcing something we too need to think about.
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.
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.
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.
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
Time to redefine yourself on your own, not as part of a couple. Find your own hobbies, do what you yourself enjoy, travel where you want to travel, etc.
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.
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.
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.
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.
There is no "moving on" but accepting what has happened. Alzheimer's is a lengthy grieving process -- my mom had it for 15 years and over the years I watched her deteriorate more and more. She lived to be 90 but the last 6 years required 24/7 care, with each year worse than the last.
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.
If you truly love your husband you will share his life with him during his remaining years, but if you loved the life you “had”with him more, it’s gone and not coming back. You need to decide, what do you want to do; be with him or try to find the life you had with someone else.
I feel bad for him but you are here and still going. Face the fact he is gone. Now think of what you like to do, hobbies? Clubs? traveling? whatever. Then start doing things like that and enmesh yourself in new adventures. You will find doors open up to you. You don't know it but you have a golden opportunity to live your life to the fullest without responsibility for what you once had. Don't lose that chance.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
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.
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. 🙏
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!!
I don’t know that either of us have prepared for an ‘after-life’ without each other to relate to in the same way, but I hope that each of us would have the courage to do our best. I hope that you can do your best as well, for everyone’s sake, including yours and the husband who loved you. Very best wishes, and thank you for re-inforcing something we too need to think about.
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.
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.
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
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.
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
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.
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.