How to cope with "losing" parent to dementia?

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.

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.

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.

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.

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...

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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.