Is there life after this
it’s early morning. DH is still sleeping so this is my precious quiet alone time. I sit here in the dark and pray. My prayers have changed and it makes me feel sad and guilty. I used to pray for my DH not to get any worse but now he’s in stage 6 Alzheimer’s and I just pray that once we are done with this terrible journey that I’ll still have life left in me. I’m 63 and still healthy and working full time mostly from home because he more needs 24 hour a day care. I’m blessed in so many ways. He’s really so good still so sweet most of the time but can do nothing for himself. I still love him so much but in a different way now. I feel like my life is just passing me by as I spend every minute just trying to do what’s best for him. I’m missing my grandchildren because my grandson is autistic and autism and Alzheimer’s don’t make for a good combination. We used to havesleepovers and vacations and more but that is gone. We used to have fun and conversations and laughter and now that is gone so I feel guilty but I pray for this season not to dwell so there will still be something of me left when this is done. Well I’ve probably created too long of a post but as many know it just feels good to say these things out loud in a safe space.
Comments
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((( hugs ))) to you. As I read your post I thought of how different FTD and Alz is, but the sadness, grief and guilt is so similar. I'm so glad you got to enjoy your husband for so long - even in this condition - but it's the feelings you have now that so resonate with me. They are so valid, understandable and relatable. Dementia in all its forms are thieves and so cruel to all who are affected by it. Caregivers make an incredible sacrifice and it's not easy. I'm so sorry we are all going through this. Sending love and support to you.
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@tryingtodurvive your post is not too long and your prayer is the same as many of ours by later stages. I pray my beloved (and I) do not have to ride this stinking Alz train to the bitter end of the line. He is early Stage 7 and has rebounded from very near death Easter weekend. I think he would approve of me wishing for the end and praying that I will survive his disease, relatively intact.
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You are not alone in your prayers. Big hugs. (( ))
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I feel exactly what you are feeling. I feel like my life is in a holding pattern, just waiting around for my DW to die. My wife is transitioning from stage 5 to 6 and I don't want her to have to bear the indignities of stages 6 & 7. I just want it to be over for her. I also hope I am able to have some sort of life after this is all done.
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We are all in the same boat. On hold, in limbo, wanting the suffering to end. I have a daily fantasy of getting a phone call that my dear partner has died in her sleep and what a relief that would be.
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My heart aches for you. We are all going through this awful nightmare and can only hope that it will be over before it gets as bad as it eventually will. Hugs to you. Please know you are not alone. ❤️
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Yes. There is life after this…. No two dementia journeys are the same, but all are hard. My DW just ended her struggle on Mothers Day and went home to be with her Lord. There were many difficult and frustrating situations for both of us along her dementia journey. Looking back, I am glad we had the opportunity to work through them together much as we had through a variety of challenges throughout our 42 years of marriage. I miss her every day. Yet both of us are at peace. Assuming we caregivers out live our PWD, all of us will learn to breathe again. Know you are not alone. And you are cared for!
Tom
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Your prayer is the same as mine. I feel a little bit of relief with DH now in MC, but I wonder how life will go for me now that I'm more of an advocate for him, rather than a direct caregiver. I'm able to remember some of our earlier, happier times now, so that's a plus. I have to believe there is life after dementia. I wouldn't wish this disease on my worst enemy.
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Yes, there is life after Alz. Everyone’s journey and aftermath is different, but “stage 8” can be beautiful and rewarding. You are young; you will enjoy your grandchildren, sleepovers, vacations, laughter, fun, and conversations again. Your “alone” time will just be different; poignant and reflective, but hopefully not sad. DH is gone 1 year after 13+ years of turmoil; I miss him every day. We were college sweethearts, married just shy of 55 years when he passed. I don’t regret a day spent with him; I see him in our grandkids and feel his presence in every sunny day. You can weather the storm; stay strong. You are not alone. ❤️
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You read my mind. I just posted a similar question. Some days I just can't bear to think how long we have to endure this suffering. This is not life, it is just existing.
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I may be wrong in assuming you have hospice involvement. Personally, I’m going to ask for it as soon as allowed by the regulations. It provides so much support. What made me think of this is your need for respite care. It will pay for time for him to be cared for while you have the opportunity to go be with your children. You need this! On a regular basis! Sometimes we just need to get out of town! Physical separation from the chaos! In fact, I’m doing that myself! My DH is going, but not my two older siblings for whom I’m a primary person. We’re headed out of state to watch our oldest granddaughter graduate. I’m dreading the long drive, 10 hours. But at this point, it’s worth it!
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SSHarkey, I don't know if you have tried Sirrius radio (or maybe there are other satellite radio stations to access in your car) — but they have every single musical era or genre you could want, on individual stations, commercial free (pretty much). My DH refused to leave the house for a couple of years, but before that, and afterward, (thankfully now we are no longer homebound!) long drives lost in the music is one of his happy places!
He will ride for hours listening to his favorite oldies, or jazz. I would love to listen to hours of show tunes, but it is all about keeping my PWD LO calm and happy. It might be a treat for you and your DH on this 10 hour drive. Good for you, for getting away!
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Oh my yes! You are so right! I couldn’t survive without Sirius radio! We listen to The Bridge all the time. Or 70s. I’ll sacrifice a lot of things before I have to cut off that service. That and OnStar. Just for my own personal sense of safety!
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I think a lot of caregivers can relate to your feelings. And I suspect the disconnect between your lifestyle and that of your contemporaries is all the more glaring given your age which gives you an even greater sense of isolation.
Is there any way to bring in some respite care to give yourself a regular break from your caregiving duties? You might not be able to say yes to every invitation, but you deserve regular breaks and social interaction.
Perhaps the parent of your grands could come stay with dad overnight while you had a sleepover with the kids at their house. My mom's experience in stage 8 has not been as rosy as Beachfans. Childhood is a "perishable" state. Maybe it's because the grandchildren were a bit older or maybe it was because dementia cost mom her beach house. Her oldest granddaughter (who lived with her from ages 12-15) tries to make time to see her about once a month but my son (mom and dad moved away when he was 6, the week he was diagnosed with high functioning autism) sees her more as a household job he does to keep me happy because she was absent when he was growing up.
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@tryingtodurvive under 60 here and a caregiver for most of my 30+ year marriage and now dealing with this… sigh. I no longer know what I would do if I had a normal life. I'm so lost in the never ending caregiving, which has become more intense in the last 10 years, that I feel I barely have time to think about what I'd want to do if I had more options. Luckily I have a counselor who validates what I'm going through. For now I'm focusing on slowly downsizing what we own so that if and when I get a chance to make decisions that focus on my wants and needs I will be better prepared to go ahead and do things like move or travel.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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