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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just Got mom in her mc village today. Had to leave previous one because of her horrible sleep pattern and understaffing. Was a great place tho. This one is all dementia people, she the young kid on the block here. She is very alert and active, even with the rapid decline of dementia. I could see in her eyes she noticed it was different with less active people. Luckily she met people that she could hang with. She does know why she is there. Previous 4 days of living with me was driving me insane. Absolutely no sleep. Tired of people who have not been with a dementia patient giving there 2 cents of worthless knowledge. First time I felt guilt. Now I feel relief and will finally sleep tonight. I have stated before I have never been or needed to seek help for me for anything. This was the first group chat I have ever joined and you people have honestly saved me lol. Don’t even know if I’m doing this right. Such a relief to chat with people who are dealing with this disease. Was/ is so helpful just getting all this off my brain. Sorry for going on so long( if anyone read this). Thanks again.

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William007, very pleased for you both. Sounds like she’s in the right place now, and that you can get some proper rest and start to take care of yourself. It’s the best outcome, and you’ll likely have a decent relationship with your mum for whatever time she has left, as you’ll be less burned out when you visit her. I’m finding I can cope better with whatever weird stuff my mum says and does now - I just agree with her about everything. I’m able to park much of the dementia burden at the care home until I visit again. I hope that it will be the same for you.

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Yes!!! Trying to fix what can’t be fixed. Had to take mom out of Al. Bring her home for a few days. Did this before was not good. For the most part we do get along. Always been close. Her decline was with in the last 2 months. Luckily for me she wants to go to mc living and is aware she will be going soon. Horrific disease. This morning almost seem back to her old self, boom!!! The arguing and repetitive questions started. And yes, up every 20 minutes pacing. I did and do feel guilty having her move to Mc. But it is the best thing for her. Socialization and the right medical care. Huge respect for all that take this on themselves for weeks and years. She came home, Ai said they couldn’t take care of her after a few weeks. She does get around on her own but needed a true MC. This place will take care of her till the end. I can’t wait for her to go, sounds horrible but I would like 1 hour of sleep at least. Can hear the pacing now. You have to have your life too!!! Better for them to be in a safe place that is made to take care of them completely. Hope all goes well for you.

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William007, it sounds like it’s a huge burden for you, having your mother at home, especially as it’s impacting your sleep and therefore your own health too. It’s better that your mum is accepting of the upcoming move. My mother was in complete denial and wanted to go on living how she was - without going into gruesome detail she had become incontinent amongst other things, and was unable to manage that, which then lead to other health problems. I was round at hers several times a day cleaning up after her. Her doctor agreed that she needed to move to a greater level of care, and with his help we told her she needed respite care for a few weeks, even though he and I knew it was a permanent move. Basically I had to pitch the move at the right level so she would accept it - otherwise I honestly believe she’d have been carried out kicking and screaming and that thought tormented me every sleepless night until we actually made the move. After she’d moved out of her old place I had to deep clean it and discovered more evidence of problems and strange behaviours that I hadn’t even known about. The care home is so much more equipped to deal with the difficulties and challenges of this awful disease, so moving her there was the kindest thing to do. Since then, she hasn’t once asked me when she is going home. I’m not sure she really remembers it anymore. But now she is safe, clean, as comfortable as she can be and her meds are being managed properly. Try not to feel guilty - you have done so much for your mother already, and it sounds as though you both know that getting professional care in a care home setting is the right and best route for her. When my mother had made the move, I felt a huge sense of relief, but the emotional impact of the situation leading up to the move was so acute and intense that it takes a while to recover from it. I’m still not back to getting enough sleep but it’s better than it was a few months ago, so I just hope for a gradual continued improvement to get my own health back on track. I wish the same for you: that your mum’s move to a greater level of care will be best for both of you.

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Chris,

Adding to my earlier post. I like what you wrote about having to “let her go.”

You have a realistic view of your mother’s situation.

Your outlook is much healthier than someone who isn’t willing or able to accept changes in life.

The beginning of life and the end of life are polar opposite experiences.

The beginning of life is filled with discoveries and adventures. We look forward to a future.

At the end of our lives, we are slowing down. All of us will eventually say goodbye to the vibrancy of our youth and middle aged years.

We face a much different set of circumstances in our older years.

This time of our lives is also tough for us as caregivers because so often it brings to mind our own mortality.

You will get through this. We are here for you. Reach out anytime.

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Thanks Needhelp. I do appreciate the help and support on this forum. I know I'm not the first person to go through this experience, nor will I be the last, and the advice others give, who have already been through this, is so valuable.

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I feel for your situation. In the normal course of life, few of us are trained or educated on dementia or end-of-life.

I suggest that instead of holding that your are "losing" her - embrace her as changing. Think of the reverse of childhood. You don't know what a baby or toddler is thinking. They have no language or have only limited language. Yet we (okay, most of us) love and cherish babies and toddlers. I'm not saying the developmental processes are identical, but they ARE similar in ways. I believe the soul is the soul regardless of how it expresses outwardly.

Just food for thought.

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Thank you elisny. I get what you're saying. I'm thinking of it in terms of the inevitable cycle of life, and that makes it better to cope with.

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Same boat. In the middle of moving parent from Al to Mc. She was only in Al for a month before she had to move(dementia). Rapid decline. 2 months ago she was driving. Dementia is horrible. Care home or memory care is the best thing. They will be taken care of. You got to live your life too!!!

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William007, I'm sorry you are in a similar situation. The speed of decline can be shocking - just as you start to process the current situation, it changes again, and once again you are adjusting. And on it goes...

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Chris,

Caregiving is never easy. We experience many different emotions during this time. Honor your feelings. They are normal. It’s okay to validate how you feel.

Mother and daughter relationships can be complex, which makes it difficult at times.

When dementia is added to the mix, it becomes even more challenging.

There were so many times that I felt sad for my mother as she grew older. I felt sad because I was powerless to help in any substantial way. We all do the best that we can.

I couldn’t take away my mother’s Parkinson’s disease, dementia and other issues. I couldn’t give her independence back to her. Our lives change as we age.

You are doing all that you can by overseeing her care. It’s heart wrenching to watch our parents decline.

Wishing you peace as you continue on in your caregiving journey.

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Thanks NeedHelp. I completely agree with how you see things - that's pretty much my take on the situation. Acceptance of the way things are is a healthier approach than wishing things were different. It's my birthday this weekend, and I mentioned it to mum earlier this week, and whilst she responded with a "yes", that was about it really. Usually she asks me to organise a card and present for a family birthday, but not this time. I don't have the heart to write myself a card and cheque from her, and would rather go without, but it's a strange feeling that she is "here but not here" this weekend. I think the "yes" and "no" answers are basically what she thinks she needs to say in response to something anyone else may say: guessing the right response in the absence of being really able to think about it any more.

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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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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 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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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 for sure.....going on 9 weeks now since mom passed in hospice...and I am still numb as hell! I am navigating the best I can ..... to the world, I paint this picture of "happines and everything's just fine"...but that's not the truth...the truth is my soul is broken and everywhere I turn is nothing but sweet memories slapping me in my face.... I do hope what everybody says is true that with time the pain becomes less intense. Peace.

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elvisman67, I’m sorry for the loss of your mother. It is early days for you, so don’t be too hard on yourself and expect too much of yourself too soon. And don’t be afraid to tell your family and friends how you are really feeling. I think to start with you just go through the motions of daily living, on auto pilot, without really feeling anything. After my father’s death, there were plenty of times I thought I was in some kind of parallel universe, looking in at the me who seemed to be coping, compared with the actual me who was in despair. The pain DOES become less intense, and for me it mellowed into a lasting but manageable sadness. I wish the same for you.

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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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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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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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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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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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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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You are so perfect in your description AS WELL AS what can be done about this.
This is some of the worst grief there is.
It leads us to a place where we long for the death of our love one as the only relief we can find for THEM as they suffer loss after loss after loss and for us as we stand witness to it.

You are so ahead of so many who ascribe what they feel to guilt. Who expect that they can be Saints or Gods and capable of the omnipotence to change this. You understand that this ia about grief.

I am so sorry, but I am so glad to find someone so in tune with the whole truth of what this is and what can be done about it. My heart goes out to you. And my thanks for posting this.

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AlvaDeer, thank you for highlighting something that many may be afraid to acknowledge - in wishing the suffering would come to an end through death. This goes against everything we would normally feel in life so it’s understandable to feel guilt. I think of my mother as she is now, spending her days sitting in a chair staring into space, disengaged with the rest of the world, with nothing I can do to improve her situation, and also knowing this will only get worse. Dementia is like a personal prison and she is locked up inside it. I wish for her to slip away in her sleep and whilst I would grieve I would also feel relief.

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

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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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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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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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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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How to cope with "losing" parent to dementia?

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