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Spouse or Partner Caregiver Forum
The humdrum, limbo-life I lead...
The humdrum-ness of it all, the limbo-life I live, feels all so strange. I live with this lost-man, and at the same time watch both our lives slip through my fingers. I try to recreate meaning for our marriage, for my own life. Sometimes it feels as frustrating and futile as trying to grab handfuls of melting jello. And here we are with so much more than many, many others; in a long plateau where he does all his ADL's just fine and appears normal to unsuspecting outsiders.
I just needed to write something, connect with somebody. No point to it really, but, thanks for reading.
All ADLs in tact here, yet there are daily incidents of insanity. The bad moments are ALWAYS reserved for an audience of one — me!
Yesterday we hosted a party for our daughter’s HS graduation. DW had a GREAT day and was a great hostess. Long story short, the day was very taxing and she melted down at bedtime - again when I was her audience of one. I am the only vessel for her frustrations, whether those frustrations come from her disease or from everyday life.
I’m lucky to have friends and family who care and seem to “get it” but none really understand how soul crushing it is to live with a loved one who continues down the path of progressive dementia.
I liken it to living in a shadow world where things only vaguely resemble reality. Dementia is one of the only diseases that takes two lives instead of one.
I have been doing the 24/7 caregiver gig for just under 7 years now. I have abandoned any idea that my life will ever be the same as it was, or even somewhat as it was. That door has closed; that season has ended. This season is nightmarish.
What will the next season be? Will I still have any purpose? Will I even recognize it as a life? I don't know. Maybe it will be like awakening from anaesthesia. Maybe this season will linger on. Maybe, as many caregivers do, I will die before my LO, so this is all there will be for me.
For now, just the waiting...
So much here I could have said....many friends have vanished, the ones I could most count on are gone for summer—like we used to do until this disease. Marabella and Gig, I know, my DH can’t even have or respond to conversation., and the house is quiet as a morgue..I think I could handle the work if there was someone to talk to...I’m so darn bored I think I’d cut myself just to get a break and see if anyone noticed, but I doubt I’d be able to walk away when I wanted...
Molokai, we too had a great life. We shared things. Now I have to do every single thing, plus prevent and “fix” his messes. How can I be so tired and so bored at the same time? There is, in fact, plenty to do, just nothing any sane person would want to do.
John, the last couple times we saw family—the only semi-large group DH tolerates at all—he behaved appropriately in their presence. (No conversation, but no bad actions). Then melt-down at home. Try to explain that to them later....the most common response is but he looks so good.” Yeah, because I fought for hours to get him bathed and dressed.
Gig, on house repairs...our house needed serious, major repair. DH kept saying He’d take care of it (this was before Dx, he was showing signs but still thought maybe he just not in mood, etc). Of course repairs never done, almost has catastrophic failure. In meantime, got Dx and I proceeded with contractor. DH stood there, heard and approved everything. I warned contractor he had Alzheimer’s. Contractor says “oh my grandfathers old and forgets things, I get it.” Well, he did not get the Alzheimer’s patient he had to deal with, who forgot who the worker was, why he was there, and screamed he’d fire him, every hour or so..
I should go back to some of the support groups I tried earlier, when I wasn’t so bored and desperate. At least it would be somebody to talk with who gets it. At least they wouldn’t just say “but he looks good” if I mention DH problems.
I used to think about the life I’d have after he was gone. But I’m in my mid 60s, I question now whether I’ll be able to last long enough to have any kind of life.
I relate to a lot said here. I have zero help or support at home and we’re three years past diagnosis. It’s soul crushing to see him fading away and living a smaller and smaller life.
I would never understand how this feels if I hadn’t lived it. I love my husband but he’s going where I can’t go. This is a lonely life. We are married 41 years and I’m with him to the end but trying to redefine “normal”.
Thank you all for sharing the reality of your experiences. It’s painful to look ahead. Today is enough to deal with. Who could see this coming? The emotional drain catches me by surprise sometimes.
I know the rigors of caregiving because I went through them for 7-8 years. I realize that my caregiving years were much easier than most. Up until two weeks before he left me, Charles was ambulatory, could feed himself, dress himself but did need help with other things. He enjoyed going to town and walking around in the stores. He even used the electric carts in the stores until a month or so before. He never ran into anyone or into any of the displays. We had conversations and watched TV together. Sometimes I didn't fully understand what he said but after being together 44 years I had a good idea of what he was saying. We enjoyed being together.
Then, in two weeks he was gone, another victim of dementia and aspiration pneumonia. Now, the house is lonely and empty except for my dogs and cats. I do the same things each day - if I want to - or I let them go until tomorrow - if I want to. I watch TV and talk to it. I play with the dogs and cats and talk to them. I walk among the cattle and talk with them. All of this makes me feel better because Charles and I did the same thing when he was here. I've become somewhat of a recluse although I do enjoy talking to my friends on the phone and to visit with them when one does drop by. I go into town very infrequently and probably wouldn't go that often if I didn't have to get feed for the cattle. I have most things delivered such as dog and cat food and heavier items for myself. I don't enjoy going to town by myself and probably never would go if it wasn't necessary.
I realize everyone is different and most do have a good life after their caregiving years. They're able to move on and find another person to be with. I'm happy for them but that's not for me. I found the one love of my life and have no desire to try to look for another. I once told my sister, after our parents passed away, that one day she and I would sit on this hill and live out our lives. But, that was not to be, she developed alzheimers and is in a MCC 150 miles away. So, I sit on this hill with the cats, dogs and cattle. I'm not unhappy because I guess I've reconciled myself to the fact that this is the way my life will be. For some reason, and I have no reason why, I'm in a rather gloomy mood this morning. The day will get better and my mood will change.
I just wanted to tell you all that if you're still caregiving, you have with you the person with whom you wanted to spend the rest of your life. Enjoy each moment you have with them, try to be patient with them - you're their security blanket, the one person they have they can depend on and give them love. I did that to the best of my ability but I'm sure I failed in many ways. I wish I had it to do over again - there would be things I'd do differently.
I do not want to come across as preachy - just wanted to share what our lives can become after caregiving. Tomorrow or later today will be better for me. Just in an odd mood right now. Caregiving life is hard but many of us the years after are also hard - just in a different way.
In Dante's <Divine Comedy> and in traditional Catholic theology, Limbo was the first circle of Hell, where virtuous pagans (Virgil, Plato etc) and unbaptized babies were confined for all eternity. They experienced "sorrow without torments" -- sorrow at not being in Heaven, but none of the brutal punishments of the rest of Hell. There was No Exit, no way out -- they were in the best place in Hell, but still, they were in Hell.
We are in our own kind of Limbo, and I identify with everything those of you still in that crazy-making place have said above. Some of us will have a life after ALZ, but for many if not most of us it will define the rest of our existence, and some of us will in fact die before their spouse -- this to me is the worst of possible fates. But the universe is random and spares no thought for any of us -- we are just road kill, collateral damage to a disease process that isn't even understood -- a fact that remains as annoying as it is difficult to comprehend. But the brain, I guess, is still the last frontier.
When I have really bad days, I tell myself that I'm not in prison, not being tortured, not homeless, not a refugee, etc. I try to think of the things I still have, but like the sad pagans in the First Circle, it doesn't usually help much.
PS: The Church recently announced that unbaptized babies probably can go to heaven, but I don't know what they've decided about the pagans. There is that nasty N.T. verse: "He who believes and is baptized will be saved."
I know how that feels. I’m sorry that this is happening to you.
I agree that the caregiver loses touch with reality when you're around the dementia patient 24/7. This was a totally new revelation to me. Sometimes I feel like I don't know how to act normal anymore or have relationships with friends like I used to have. My DH is non-conversational around me but with others he is so outgoing, it's impossible for them to understand what life is truly like for me. Very unemotional and self-absorbed. I just want to scream at times. I have been doing everything, as for keeping a household running, for the last 3 yrs. Last October we sold our house and moved into a condo. I did all the packing, disposing of items, and arrangements for the move and remodeling of the condo. I could have had the walls painted purple and he wouldn't have cared or even noticed. The last 6 months I've had to pick out his clothes and help him get dressed. He's less interested in showering (once a wk now) and before he was so particular about his hygiene. He wears depends all the time although rarely has accidents, but because of residual effects of strokes, etc he goes very slowly with a walker, so can't always make it to the bathroom on time. I hate taking him out because he stares at people and gives dirty looks if a child is noisy or someone's laughing loudly. His inhibitions with speech are gone and sometimes says very embarrassing things to complete strangers. So it's a relief when he spends his time watching TV and napping off and on all day. It's so depressing being around him, and yet I feel guilty when I do things without him. And I know it will only get worse. I do find solace working for 2 days a week 6 hrs each day. He stays by himself and I do worry about him but we have a medic alert system which gives some peace of mind. I also find comfort in talking to my pastor. I find it's hard to share with friends and I really don't understand why, although they all are aware of the situation.
Storycrafter, you have done an excellent job of describing the life of the caregiver, It is a dark tunnel with no light at the end; just descending one slow step at a time. The worse part is the hopelessness. Knowing it will never get better, only worse.
DH is stage 6 or so. I often feel out of touch with reality, though we have some connection with the "real" world through nearby family members and our church. I had to quit my part-time job, and we had to sell our home and move; actually, I had to sell our home and move to a new area near family. As others have said, I made all the decisions, made all the arrangements, packing, unpacking, finding new place to live, etc. DH can't even choose which shirt he wants to wear, or select an item from a restaurant menu.
Fischie7, you are an inspiration to me! I am also determined to survive this! I have only one child, and DH's children have nothing to do with him. I cannot die first and leave my child the burden of caring for stepfather with AD. Fortunately, my health is excellent. But you, Fischie7, have spurred me to take some on line courses. I love taking classes, but cannot leave DH alone. He panics whenever I am out of his sight. I can continue to study by taking courses on line, and even though it might be difficult, I am determined to do it. I may be in a hard place right now, but I am still living.