Grief when parent has dementia

[Secondtonaan]

I'm just looking for some similar experiences as I don't know anyone in RL in the same boat.

DM has Vascular Dementia. diagnosed at Christmas but signs obvious for 3ish years.

After much battles with F she got a diagnosis, they went from crisis to crisis... It has affected her mobility a lot so she kept falling. She has osteoporosis so broke her neck and back. F hasn't accepted it at all, he's controlling and abusive at the best of times and was shouting at DM if she forgot anything or couldn't walk.

A few months ago I managed to get her in a care home. Since then I feel so overwhelmed with sadness, it's basically like she's dead to me now and I keep remembering happy times I had with her and crying. It just feels like I'm wearing a heavy coat and can't move in the world. I'm almost finding the dementia worse than a death as I can't have a proper conversation with her, feel like every time I see her is different and upsetting. I couldn't explain this to someone in RL as DM is alive... she still recognises me and asking after the kids etc. Just feel such grief.

I'm in the same situation. Both parents diagnosed. Dad much further gone than mum. Mum is early 70s, early stage Alzheimers. Its taken us 2 years to get mum diagnosed. I am able to put on a pretty good front of being ok, but Im definitely not. Im so sad. Especially for my mum as we are so close. Its devastating. I can't bear the thought of what the future holds. One minute I can be fine and next I'll think of something and I'll be crying. I feel like Im grieving and my parents are still here.

My DM has vascular dementia, she's 71 and has been in a care home for just over 2 years. DF died 5 years ago and my Dsis lives a distance away, so I do find it very hard. I've gradually reduced the amount I visit, now average every other week - I sometimes feel guilty, but I know that she isn't aware how often I come and I've realised I need to look after my own wellbeing too.

I feel like I really miss her, which may sound odd to people who haven't experienced it, but it's because she isn't the same person any more. Her old outgoing personality is gone and its so hard to have a conversation with her. But she does recognise me at least still.
Horrible illness, absolutely devastating.

I lost my dad to cancer 10+ years ago. At the time that felt brutal but he was my dad until the end. My mum is in the initial stages of referral/assessment/diagnosis but she hasn’t been my Mum for a few years now - it’s the small changes that hit me hardest.

I very strongly relate to this, I miss my mum SO badly, I get pangs of it all the time, it's definitely a form of grief but it's so much harder to talk about as people don't really understand in the same way they would if my mum simply wasn't around any more. She's end of life now and a massive part of me will be relieved when she's gone as I'll be able to process all the accumulated grief and loss in a less complicated way, and a way that people understand. My mum is in her 70s too, i find it hard as that's comparatively "young" to be at the stage she's at, so none of my friends/peers in my age group have experienced this with a parent, I find it hard to talk about it with people as often people don't really understand so I've mostly kept it very private which is difficult now things have accelerated so much and I'm in need of more support. Sending solidarity, it's so hard and heartbreaking. Reading about ambiguous grief and listening to a few podcasts from other people with similar experiences has helped me feel less alone.

I say this from experience (twice over) so please don’t think I’m unsympathetic.

I think you need to stop dwelling and get pragmatic.

She’s being physically well cared for. What you need to bring her is the personal touch. Find what she needs from you and deliver it.

For my dad, it was his favourite food treats and just being in the room with him. For my mum it was physical touch, ABBA, and reading her nursery rhymes.

Of course, you’re allowed your moments, but don’t let them blind you to the connections you can still experience.

@Heddagarbled Yes I think there is a lot of truth in what you say about appreciating the connections you still have - my mum loves nursery rhymes, and singing her songs or reading her some of the poems I remember her reading me as a child has brought a lot of joy to us both. Her reaching end of life was a bit of a wake up call about this actually and I've really varied my approach to my time with her and tried to focus more on these moments of connection, and physical touch, especially as her ability to communicate has deteriorated. Playing her a voice note of my son singing one of the songs he learned at school while she was in hospital recently was a really moving experience for us both, even though my mum wasn't able to speak at all in response, I'll treasure that moment forever.

That being said, I do also wish I'd allowed myself a little more space to grieve the many losses of over the last few years, it's all catching up with me now. I'm sorry you've been through this twice.

I am so sorry, I really do feel for you.

I'm so sorry you've had to deal with this without support and have kept it to yourself.

I'm fairly lucky in that I have friends who understand - my best friends partners DF has both Alzheimer's and Parkinson's (albeit older in his 80s) and a friend of a friends DM actually got dementia very early in her late 50s!

I mentioned my DSis last time I visited DM and she replied Who? 😢 Which did upset me, but she can't visit as often due to distance and mom isn't good on the phone. I think it's more names atm, she just says kids to keep and your fella 😊 but I can feel it's getting worse and it's heartbreaking

I’m welling up just reading these. It’s been such a long and hard journey with my mum’s Alzheimer's. It’s ten years since we first noticed it and the deterioration has been long. She’s now totally gone mentally, but still fit and healthy.

I’ve said my goodbyes so many times but the wait for release goes on and on. Release for her - she would be devastated to be like this; release for me as I can’t help her but have to watch her struggle.

I miss my mum so much but cannot grieve.

Those who are further along this path than me, do you have advice for helping a parent with poor hygiene (they smell and I do t think they are washing clothes) when they are adamant everything is fine and they are coping?

I can’t even start on food (I won’t eat/drink anything when I am their house)

I am really interested in any advice on the points raised by @NortyTorty 's post . I'm at the beginning stages of getting my mother diagnosed (what an uphill battle this is). The emotional chaos aside (tearful every day, about everything, of course), I am really looking for any practical tips on how to care for an elderly parent as I have no experience of how to deal with the physical aspects of care. To get specific - how on earth do you deal with downstairs hygiene etc? Any information gratefully received.

Hi @AlwaysPudding , my mother sadly now in late stages alzheimers/dementia and still living at home with a LOT of help from carers/daughters.
We are in Ireland so may be different where you are but our first 'help' from our NHS equivalent was the showering help who comes in on weekdays to shower and dress my mother. When we applied for it she didn't need it but we knew to keep the lovely care assistant in case we wouldn't get offered her again so for the first few months my mother would have a shower (we got the bathroom converted to a wet room with shower) while the care assistant waited outside.

Fast forward about 6 years and that same lovely women is a life saver for us as she takes care of this one vital need every day and my mother knows and trusts her. I would get onto your NHS nurse or whatever equivalent about this as soon as possible. Also, in my mothers small community, these women are a mine of information of where to get extra help etc..
Good luck with it all

I am in very same situation, mother diagnosed about 2018 and still strong as an ox but mind completely gone. There is no joy left in her and she was the most joyful, happy, kind woman you could ever meet.
My heart is broken and I seem to spend half the day close to tears or worse!

Luckily I have 4 wonderful sisters and we are so close and going through this together and also caring for her together. I realise this is a blessing not everyone has in this situation.
I feel your pain.

@Infracat i could have written this word for word… we are definitely grieving whilst they are still here. I hope you are ok.

I have just reread this full thread properly and there is so much I can relate to on here, this journey is so awful. For those on a similar path, you are not alone x

Currently trying to get a diagnosis but it's more of a technicality, it's now obvious to everyone there is a problem and have been given an informal diagnosis before a brain scan. I'm late 40s and just was not expecting this so soon, perhaps naive, I burst into tears on the phone when I had to activate Power of Attorney. It's all utterly devastating - in tears most of the day and awake at night worrying about how on earth to manage the practicalities. Mum is single parent and my sister died so I need to work out how to manage it somehow.

How are others on here doing now? Not that anything goes away, but they do subtly shift over time for better and worse..

I have come back to this thread several times; there is some comfort in knowing others ‘get it’ and are in similar positions, even if wouldn’t wish this on anyone. I don’t know anyone IRL in a similar position so once again Mumsnet helps with providing similar connections.

Hi @rememberDecember. Things are still the same for me. We seem to have good weeks and then very bad weeks where mum just doesn't want to be here and loses her shit with everyone. Most recently that was last week. No matter what I try to do to make her feel better nothing works. I still spend most of my time putting a smile on and acting like all is fine, when inside my heart is breaking. Its just the worst. How are you?

I know that feeling of putting on a brave face @Infracat. Having repetitive conversations, not telling them about the 101 things you are worrying about. My mum would be horrified to know the strain her illness has put me under, but I try not to show it because what would be the point?

I have been there coping with their depression too, it sucks at your soul. All I can advise in that situation is to try to compartmentalise and make extra time for something that gives you pleasure content negate the impact. It doesn’t always work, but there is no harm trying - although finding the time can be a challenge, esp with all the extra jobs to do for them.

I feel so sorry for everyone who is going through this with a much loved parent. My wonderful Mum slowly disappeared due to Alzheimer’s and eventually didn’t know me. I never told her that I was very ill with cancer and had treatment for a year or that my only sibling died. I still feel traumatised and a terrible sense of loss when I think about it all.

Ha! 2 weeks after my post just up there ^, my Mum ended up in hospital with a heart scare and all sorts came to light. All our suspicions were confirmed just a week ago with a ‘mild’ dementia diagnosis after her first memory clinic appt and we are awaiting the scans for more information.

I am fortunate in that Mum chose to move close to my sibling a few years ago so they are baring more of the day to day stuff. I go and stay for a few days to a week, roughly once a month to give them some respite. That stay is exhausting though and I dread it each time.

I know what you mean. My dad is in his late 70s. A lot of my friends have parents in their 80s who are still fit and healthy. I wouldn't swap their parents for the ones I had though and I remember that when times are hard. Since I last posted on this thread we have moved into a phase where dad doesn't know who I am most of the time. He has had to move into a care home because we couldn't cope with trying to look after him and it's heartbreaking. He is physically fit and when I visited he said to me the people in the home are all half dead, and they are, it's awful. And visiting mum at home is weird because it feels like dad is dead because he is gone but he is not dead of course, even though I don't really have my dad any more. I liked the tip upthread about engaging via physical touch or music. This is something I will try.

We lost my dad a couple of weeks ago - he lived with dementia for about ten years. It progressed steadily and at the end it was severe - for example he was doubly incontinent. Nontheless, he still had lucid moments where he knew us and was able to talk to us.

I would say it got easier over time, because we became accustomed to it, and learnt to treasure the good times?

We were lucky in that mom was able to care for him at home (I moved across the country and bought a flat about 5 minutes away from them to support them in the final years).

I would advise anyone in this position to spend as much time with their relative who has dementia as they can, talk to them as much as they can, give them as many great experiences as they can..... Loving human touch is also important and powerful in this scenario I think.

When dad finally passed it was in his own bed. I was next to him and had spent the whole morning by his side, holding his hand and talking to him. My brother and mother were also at hand, and mom had spent the night lying with him, her last night with her husband of 50 years.

He may have lost most of his faculties, but he did still know that he loved us and that we loved him, I am convinced of it.

Make the most of what you have, while you still have it. And I am, of course, so sorry for your loss.

If anyone has any questions, please DM me. Especially if you would like to know more about letting a relative with dementia die at home with only palliative care. I don't want to post too many details as they may be distressing for anyone who is not in that position - but equally I think it's something that people need to go into open eyed, if they do make that choice.

Just found this thread, what a relief! We have my 81 year old MIL with vascular dementia living with me and DH. Think she's around a late stage 6 but difficult to tell. Mostly incontinent now, very frail and prone to falls. Sleeps a lot. Most frustrating thing is the communication, she speaks either in french (used to be a language teacher) or made up English. Can't understand us. She doesn't like being washed or changed and hates being wiped on the loo. I WFH ft and do all her personal care, washing etc. DH helps. No carers. Has to be supported all the time when standing etc. It's so hard at times. On her goodish days she's defiant and resistant to everything which fits her old personality! Agree @Ilovelurcherswith personal touch, trying to make her feel loved still. I don't know how long we have with her, she's been with us almost 4 years now.

My mum is 85 and not yet diagnosed . She is refusing to believe there is any issue with her memory so that’s a battle in itself . I also feel like I have a heavy weight on me . Some days I wake up and it takes me a few minutes to remember the reality of it .
I adore my mum but I feel she is just dying in front of me . Selfishly , I also miss her caring for me !!! What a baby I am . I miss being able to ask her advice and have her agree with me on things . The disease itself is so consuming for the person . Mum doesn’t realise that my brother and I are trying to organise our own busy lives around caring for her .
It’s so sad . The only ‘good’ thing is I am grieving already for her so when she goes it may not be as horrible as it would otherwise have been .