How to cope with "losing" parent to dementia?

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How to cope with "losing" parent to dementia?

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Mum is 4 months into moving into a care home after starting to really struggle on her own. Dementia suspected at the time, and now confirmed. Care home is excellent in terms of looking after her, but I'm really seeing the evidence of this being a progressive disease, with weekly declines in her memory, speech and confusion. Although our relationship hasn't always been good, I feel such sorrow as she approaches the end of her life. Today I told myself I have to just let her go and not beat myself up about trying and failing to fix the unfixable. Anyone else in the same position had similar feelings?

Alzheimer's & Dementia Grief Mental Health Relationships

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It’s unfortunately, a grief that continues to punch me in the stomach, every dang time I visit my mother.

She has been in Memory Care for over three years now. I always have to pray in the parking lot before I go in. The emotional trauma of watching the downhill slide every week is too much to handle alone. God gives me the grace for another visit, then I leave and repeat the whole process.

Hardest thing I’ve ever been through, in my life.

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Reply to cxmoody

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Cxmoody, I'm sorry that it is so difficult for you too. I totally get that feeling of dread before I visit my mother, and afterwards as I walk back to my car I'm sometimes in tears. It helps me to look for small positives in the world: the birds are nest-building now, so there is new life as other lives are drawing to a close.

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I'm in a similar situation, its very hard. I dont think there is a easy way to figure out how to cope
Counseling is good. In person support groups for carers/ children of parents with dementia. To me, this forum is actually the best support group!

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Reply to strugglinson

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Strugglinson, I too have found counselling a great help, and forums like this, knowing you're not alone.

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Watching our parent(s) get swallowed up by dementia is absolutely no fun at all. They are not themselves yet here we are talking to "mom" who really isn't mom anymore. I hate it.

Definitely don't beat yourself up. It is what it is and you can't go back and try to fix the past.

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Reply to againx100

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againx100, thanks for your support. If I look back, I try to fix on the good times my mum had, the holidays and cruises she enjoyed, her garden, time with her grandson when he was young. The sad thing is that I don’t think she remembers much of that now.

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It's only been 4 months and the move itself is hard on dementia. Actually, it's hard on anyone, but your mom may not truly understand where she is and why. As she adjusts I hope she will not continue to decline, but you are correct, it is not fixable and beating yourself up will not help. I hated when I had to move my mom into care from her beautiful home. I knew she'd never see her home again. She at that point was not aware of what was happening to her. It hurt me to my core. However, she ended up doing much better in assisted living with fewer worries and people around all the time.

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Reply to ArtistDaughter

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ArtistDaughter, I don’t think my mum fully understands why she is where she is, nor the context in terms of what came before, but she is reasonably content, not distressed and is getting the care she needs. I do wonder whether one of the reasons it’s so hard to witness the effects of this illness is that you take on the burden of thinking about (and therefore grieving) for their past life because they are unable to talk through things with you any more. My husband was able to have good conversations with his mother before she died - they were able to look back and share a lifetime of memories. She told him she was ready to die, and had achieved all she wanted in life, which comforted him greatly when she had gone.

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It is a very sad thing, as you've said. Dementia affects the whole family, so what you're feeling isn't unusual.

I congratulate you on making the decision to move mom into a care home. Professional care means so much, not only to them but to us. If you were doing her personal care yourself, think how much harder it would be! I've done it and I know.

Good luck to you and your mother as you make your way down this unpredictable path. Please understand that you are not alone.

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Reply to Fawnby

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Fawnby, I really had to move mum into a care home, as in the space of just a couple of months my life was completely taken over with caring for her, to the point that my own health suffered. I am an only child so it was me or professional care. Sometimes I wonder how bad things would have got if I hadn't moved her, but then I tell myself it's pointless thinking "what if", and it's better to take each week as it comes, and to accept that mum will decline - but that she is now getting the best possible care.

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I told people that the last 3 years of caring for my mom was a continual process of grieving. She was still my mom and knew herself and knew me, but she was no longer the woman I'd grown up with. I worked to appreciate the bond we still shared, and she always smiled and thanked me when I kissed her goodnight. Now that she is gone I am trying to bring back the memories of her as I knew her in her prime.

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Reply to TopsailJanet

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TopsailJanet, I’m sorry you lost your mother to this terrible disease. You are absolutely right to try to focus on who your mother was when she was fit and able. It helps to set the final few years of decline in the context of a long and fulfilled life. Photographs help too. I have a framed photo of me as a young child with my father, on one of our family holidays to Scotland. Mum took the photo, we are in the great outdoors, suntanned (rare for Scottish holidays!), happy and full of good health. They were young parents once, not ill and elderly. I see the photo every morning and find these days it brings me more happiness than sorrow.

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You're trying to make sense of chaos, which is what dementia truly is.

When my mother first started introducing me to everyone as her mother, I turned around to look at her, expecting to see her laughing. She wasn't. She truly thought of me as her mother. And in a sense I was. We become the parent and they revert to being the child.

I looked back over her life too, with sadness for all we didn't have together, and all she'd missed out on with her complaining and bitterness. But it was HER life, Chris, not mine. I did everything I could do to make her life better, but she never gave up the chance to tell me what a rotten job I'd done at it. But it wasn't my fault that she was so old and sickly, or that we had a damaged relationship of 64 years. It was just sad, but not fixable, so it had to be endured. The dreaded visits to the Memory Care facility. The harsh words, the accusations, the ugliness, all of it. Watching my mother fade away into an unrecognizable person was gruesome. Right up until she became comatose for a week and then died at 95.

Only then was she finally free of what tied her down on earth and kept her anxiety ridden and agitated in her wheelchair. And it freed me too, honestly, to get off the 10+ year roller coaster of fear, sadness, resentment and stress I had been on with her.

She's at peace now, and so am I. It's a terrible road to get from where you're at now to a point of peace for both of you. May God grant it to both of you sooner rather than later.

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Reply to lealonnie1

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lealonnie1, thanks for your post, and good to hear you are doing well now. I’m thankful that my mother seems to have now lost the ability to expect me to do everything for her and to blame me if I don’t. Soon after she moved into the care home I got a phone call from them to say that she was resisting help, so I offered to talk to her to calm her down. She blamed me for putting her there, said it was all my doing and I shouldn’t have interfered in her life. I don’t know whether this was the dementia talking or my mother’s normal behaviour, but I decided there and then to just let it be and not over think it. I feel now that without that anger and blame we are in a better place relationship-wise, however strange some of our conversations are these days.

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It’s really hard. I feel for you and your ongoing loss. So difficult to watch your parent fade away. I hope you are getting the support you need and that you will be able to make some sort of peace with it.

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Reply to BayPoodle

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Thanks BayPoodle. It's just an ever-present feeling of looking back with sadness and sorrow over mum's life. There is help and support out there, and I'm finding it, but I guess it's a steep learning curve when dementia first hits, and you're trying to understand everything.

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Yes it is difficult to watch the progression of a Illness that you have No control Over . There is a lot of educational articles and support groups such as this One to educate yourself on what to expect . My best advice enjoy the time you have left with them and make good memories . Let them know you Love them and they are safe .

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Reply to KNance72

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Thanks KNance. I agree that it's really hard, especially if you're used to fixing things if stuff goes wrong. I keep telling myself mum is safer now where she is.

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Watching anyone you know and or love decline is difficult.
There are all sorts of emotions.
Sadness, fear, "guilt" (and I put the quotes around that because we feel guilt but there is no reason to feel guilty).
With the decline of a parent comes the sorrow that you are going to lose a part of what made you who you are.
Education is what will help you. Learn the stages, learn what she will be going through. You can anticipate the next decline she will have.
But also appreciate what she can still do, what she can still enjoy while you also mourn what she is losing.
Don't let the little stuff bother you and most of the stuff we fret over is little stuff.
Don't argue over stuff. You will NEVER win an argument with a person that has dementia. It will frustrate you as well as the person with dementia.
Just drop the subject, walk away. Try again in 5 minutes, 30 minutes or in a day.
Learn the art of "Therapeutic fibs" they can be a life saver.

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Reply to Grandma1954

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Grandma1954, there is a lot of wisdom in your post. I agree that educating yourself about dementia is a key part of coping. Understanding the stages and anticipating future declines helps to lessen the shock, just a little, of each new aspect of the disease as it progresses. I’ve also learned to go with the flow with whatever mum says, however bizarre. This week she asked me what school my daughter Margaret was at. I don’t have a daughter, only a son. He is not called Margaret, and left school 4 years ago. I gave her the name of his old school and that satisfied her.

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How to cope with "losing" parent to dementia?

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