The Limits of Caregiving

Karl38 · June 10

I am 87 and my wife is 85. It's been 8 years since her Alzheimer's was first noticed and now she is in Stage 6. We have had a wonderful life overall and a great marriage (67 years) and two sons we are proud of. But face it, our life is over. We have no friends now, nothing to look forward to except a struggle to get through each day. What's the point? It would be so easy to end it all for both of us. I'm giving it serious consideration. If any readers have reached this point in caregiving I would like to hear from you. If you respond you are obviously still alive so it would be interesting to see how you got through it.

BPS · June 10

Karl I am only 70 and my wife was diagnosed over 10 years ago and I have thought some of the same thoughts because this disease is so depressing. I would never take a life even my own, I have seen what it does to the remaining people like your sons. It haunts them for the rest of their lives, wondering if they could have or should have done something different. Dealing with this is not only an act of love for your spouse but also for your kids. They may not need your help or involvement but they need your example of dealing with this, the hardest part of life. They may be grown but they are still learning from you. I have four kids that all live pretty close but only one stays in regular contact with me. Even though the others have made other decisions I still care about them and want to be an example of what a person should be and do. I ask that you stay strong long enough to talk to someone that can get to know more about you and can give you better help then I can.

trottingalong · June 10

https://alzconnected.org/discussion/76248/the-limits-of-caregiving

@BPS said it perfectly. Talk to your boys about how you are feeling. My husband has dementia but prior to him, my mother in law had it for many years. She was 88 when she passed and my FIL was 90 when he lost her. He as a very religious man, but he did wish he could end it in such a way they could be together. He would talk to me instead of his sons. He lived a full life for nearly 3 years after she passed and he was devastated when she was gone. He made it his mission to visit elderly people within his church that were alone and lonely. It helped him. I wish you the best.

Quilting brings calm · June 10

I think your title says it all- you’ve reached the limit for caregiving. consider moving your spouse to memory care. Maybe think about a facility that would also be able provide independent or assisted living for you. The freedom of having a staff to care for your wife while you attend onsite activities, socialize with other people, having meals made for you, laundry dove for you would go a long way to make your days more enjoyable.

Biggles · June 10

https://alzconnected.org/discussion/76248/the-limits-of-caregiving

Karl38 you sound so tired and sad it’s such a hard slog and I feel for you. For me I would really like this nightmare to finish. I too am tired and so sad. I am 76 my DH has VD and Aphasia, he is 78, about stage 5 or 6, fabulous exciting marriage of 54 years and two wonderful children. Sadness was overwhelming me a couple of months ago, then I received a card from our daughter the front of the card said ‘Mum all my love forever’ inside she had written “Dear Mum, thank you for showing me how to be determined, brave & courageous. Thank you for loving and caring for my beautiful Dad with such gentleness. I love you. I am so lucky to have such a wonderful Mum”. As BPS has said so perfectly the bourdon on our shoulders is the example we set to others, they will remember and carry that for the rest of their lives. Take heart.

Sunfish47 · June 10

This is how I see it: everyone who is elderly & taking care of a spouse suffering dementia or another terminal illness will ponder this. What is the point? We know the story’s ending, the inevitable slow decline over many years. Nothing will stop it and all we’re doing is just walking them home. There is no quality of life, it’s pointless.
I need life goals outside of this. In my situation I am 77 and DH, stage 5, is 84. He’s not much aware anymore of whats happening, but I am still involved in the daughters and grandkids lives, and also the 2 dear friends who haven’t yet died or abandoned me. I stay in constant contact, physically if possible or by phone or text messages, trying to be immersed in their lives, helping them with their life issues. It brings me back mentally to the world, to other people, I try to help or console them over their problems. I am grateful that I still have people who look to me for advice or consolation.
I have no in-home help yet but am considering bringing in someone a couple days a week so I can get out to some kind of volunteer activity in the community. I have to get out of myself mentally, and somehow feel like I’m giving back even in a small way so my life still has some purpose.

Maru · June 10

I love what BPS said about being a living example for your children. So important. I understand the depression part. I am 86 and DH is 91, and I struggle with depression. There are drugs out there for you to help with your feelings of hopelessness. Please talk to your doctor about you getting on medication. Memory care for your LO…sounds like it is time. Holding you in prayer today Karl.

Michele P · June 10

https://alzconnected.org/discussion/76248/the-limits-of-caregiving

I understand that you have reached your breaking point. My cousin’s son took his life several years ago. His suicide has destroyed the lives of my family, especially his parents. The pain and guilt that they carry is untenable even though they did everything possible to help their son. Our family will never get over this loss. Your family would never get over it. Talk to your children and ask them for help. Call the 800 number on this website and ask for help. This is a cry for help. Please, reach out and get help. ♥️

BPS · June 10

https://alzconnected.org/discussion/76248/the-limits-of-caregiving

Karl38 please post back and let us know how you are feeling. I can't say I know exactly how you are felling because I don't know anything about you except what you posted, but I have had some of the same feelings, probably not same as you. I have prayed that God would take one of us. I didn't really care which one. I was depressed and wanted this to be over. I still do. There are examples in the bible of men asking God to take there lives. I didn't find any examples of God granting them that. From your post I am guessing that you have been a good husband and father and a caring caregiver. I have read you post over a couple of times and I don't know why it matters to me but please just let us know how you are doing.

trottingalong · June 11

https://alzconnected.org/discussion/comment/274493#Comment_274493

I think your daughter may take after you. She sounds like a wonderful and kind human being.

Chance Rider · June 11

@Karl38

I’m sorry to hear that you’ve reached this point in your life after caring for your wife through this horrible disease for 8 years now. I can’t imagine what that feels like.

My husband’s diagnosis was just a year ago though there were signs for years before. My initial reaction was that I shut down physically and emotionally. Fortunately after a few months I saw my doctor and asked for help. I now take medication for my depression, anxiety, anger, hopelessness, etc., and it’s helping me so much.

I hope you take the advice given by previous posters to seek medical attention and, especially, talk with your sons.

My experience is a bit extreme but it has impacted my whole adult life. I grew up knowing that my mother would likely take her own life as by the time I was 18 she’d tried twice, finally succeeding when I was a very young 20. My maternal grandmother also took her own life before I was born. While I don’t have any guilt or think there was anything I could have done, it’s had a lifelong impact on me. I’m now 73.

I hope you’ll touch base with us and let us know how you’re doing. We’re here for you.

Jgirl57 · June 11

karl38,

Struggling to get through each day is such a hard thing. When I was feeling at my lowest I cried to my primary care doctor. She gave me low dose medicine to help with anxiety and depression and then told me about the local Alzheimer’s office to learn about getting home help .I do wish you some years of joy when your wife passes. Please contact a hospice agency for an evaluation if she is not already on hospice. Hugs to you Karl!!!!

Bill_2001 · June 13

Hi Karl38,

You are at risk and need someone to guide you. Please call the Alzheimer's Help Line at 1-800-272-3900. I have been where you are and caregiver depression is real.

You are also a hero. Caring for your dear wife for 8 years is a monumental and honorable achievement. Find something to do each day that brings you some joy: Listen to music, watch some comedies, read your favorite books. And stop by here often to chat with us: Only other caregivers really understand how you feel and what you are going through.

My wife (stage 6) had a very bad day yesterday and I felt helpless and ready to give up too. Give yourself a moment, take a deep breath and let the moment pass. It is ok to acknowledge the difficulty of your situation and allow yourself to feel sad and frustrated, but you must rise above it and talk to someone. Make the call my friend.

Love Bill_2001

ALZCModerator12 · June 13

Karl38,

Recently you shared a post on our AlzConnected discussion boards. Given your post of "ending it all", we wanted to reach out in hopes of offering you additional support and information.

Supporting someone through this illness can stir up so many difficult emotions - fear, hope, grief, denial, and sometimes even guilt - and all of these feelings are normal. It is understandable that you may be feeling overwhelmed, uncertain, or even lost right now. You are not alone in this journey and it takes great courage to open up about how you are feeling.

We want you to know that help is available, including our 24/7 Helpline at 1-800-272-3900. We have compassionate Masters-level dementia experts who are ready to talk whenever you need. They can listen, help you process your emotions, and connect you with resources in your area to provide added support. Please don’t hesitate to give us a call. This service is here for you, free of charge, whenever you are ready. In addition, we want you to know you can also reach out to the National Suicide and Crisis Lifeline by dialing 988, available 24 hours a day, to speak with someone right away about how you’re feeling.

We recognize the strength and courage it took to acknowledge your feelings. We are here to walk alongside you and help support you as you work through those emotions. Please call our 24/7 Helpline at 800.272.3900. Specialists are available around the clock.

Biggles · June 15

https://alzconnected.org/discussion/comment/274498#Comment_274498

I really like your positive attitude and take on life. Thankyou

Biggles · June 17

https://alzconnected.org/discussion/comment/274565#Comment_274565

Oh trottingalong we are so lucky our daughter is such a caring girl who loves her dad dearly she is loving, determined and practical. Our son too is the most caring, gentle, big business man. He lives 1500kl from us. Last Friday he flew up with our 8 year old grandson for one night, he had a new work station and set it up for me in our little office. They are beautiful children who are both trying their best to help and are both heartbroken too. It’s so sad. I can hardly cope with the heartbreak and love that I feel. Thank you for noticing.

tboard · June 17

https://alzconnected.org/discussion/76248/the-limits-of-caregiving

"my life is over" I have felt that way many times. All I can say is that you should keep in mind that life is short but death is forever.

trottingalong · June 20

https://alzconnected.org/discussion/comment/275101#Comment_275101

Your children are a testament to who you and your husband are.

The Limits of Caregiving

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