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.

Yes it comes and goes for me (DF with Alzheimer's, mid stage). Sometimes the grief for the person he used to be is unbearable. Other times I visit and I hear his dear voice and hug him and feel his love which is still very clear and unmuddled it can feel for a short time as though everything is ok. It's such a gradual process part of me forgets he wasn't always like this. That may be a coping mechanism.

I've known a few people lose a parent with dementia and it seems common to do a lot of the grieving before they physically go. It's awful. You're not alone going through it.

Broke her neck! Oh bless her, she has been through it.

I agree with you totally. You are mourning the loss of your mum, whilst still visiting her. Its a cruel illness for this very reason and a horrible time for you.

I found that once I had good care organized that I detached a bit. My mum had gone. I visited this lady who looked like her, and did what I could to help to keep her cheerful and safe but I guess I protected myself by thinking this way.

Just one warning. In the final days of her life mum suddenly regained a sense of reality and an ability to speak that she hadn't had for years. It was a real shock to find that she was still there. I have met others who have also experienced this end of life clarity. Not sure if that helps you, but it's good to be prepared.

DM went into a care home in May. Only 71, some days are great other days are just a ball of confusion for her. Dementia really is the long painful goodbye. I'm lucky enoigh to be able to see her a few times a week but I never know which mum I'll get. It's such a cruel illness. I found the book Contented Dementia a very good read. 💐

I totally understand. My mother had advanced dementia and I was actually relieved when she died. She had been 'gone' for a long time by then and so frightened as she didn't know where or even when she was.

Oh that is so young. I'm 70 and I fear dementia more than cancer or anything else.

Yes you are not alone . I am going through it too. My mum was my best friend and it has been the hardest thing I have ever had to deal with . I feel like life will never be the same again. I still have a close bond with her though even in the later more severe stages I go in most days just to play music with her and give her a hug. She doesn’t remember who I am just thinks I am a nice lady. Your mum sounds in the earlier stages so try and be present with her in the moment . Do thing with her take her out where there is no pressure on her to remember anything.it helped me to try and make her happy when I am with her although sometimes I have to turn away blinking back the tears. Sending love

For me it was death by a thousand cuts with my mum. She had fronto temporal dementia so had personality/ behavioural changes along with a very early loss of language and then the memory loss as well. Each loss along the way - my name, who I was, who she was, and so on I had to grieve individually so it was strung out over 10 years. It was so hard, and no one who hadn’t been through it understood what that meant

Thank you SO Much for these. So powerful, I relate to a lots of what you've said.

DM is 87, in many ways hasn't had a bad run until the last few years. She's not unhappy, sometimes I have a hug or a few sentences that seem normal. But she's very vacant, just not "there" we were so close and I miss her desperately. Just feel there's no recognition of this stage, no leave I can take from work or reason I can give to friends for this horrible feeling.

Oh op, I’m so sorry, it’s brutal. You mourn them while they are still alive, then start again when they finally die. Like @CMOTDibbler my mum gradually disintegrated before my eyes over years. It was bloody awful. Take care of yourself. As long as she is in the best place with decent care, you have done your best.

We were lucky in that my mum was fairly free of anxiety/fear. (The rest of us were exhausted making sure she was as happy as could be, and nights were particularly long!) So she was rather cheerful - though soon let you know if things weren't right for some reason. She had a will of iron too!

However, I took a lot of comfort in the fact that she wasn't in pain (until her fall at the end.) Dementia is cruel but at least it was her family who bore the brunt of its cruelty. Although she wasn't herself, at least we didn't have to watch her struggle with some painful illness. And we could watch her joy at having a cup of tea and plate of bourbon biscuits to the end.

Do hope that in the midst of all of the challenges, you and your mum are able to find moments of joy to share too.

Oh I’m so sorry @Secondtonaan . I’m in a similar situation. My dad is “gone”. I’ve had my last conversation with him. I’m fortunate that he’s content at the moment and very loving, keeps telling us how much he loves us. It’s definitely a bereavement.

better than my friend whose dad has become very cold and won’t stop telling them all how good the sex is with his girlfriend who’s financially abusing him.

Thanks, sorry to hear about your DDad.

Hahaha yes I take consolation in the lack of sex chat!

DF went into a dementia care home at 72. It’s his 75th birthday tomorrow. He knows me but doesn’t ask about my DC or my siblings, and it’s impossible to have a conversation with him as he just babbles nonsense, but tries to get me to take him with me when I leave after every visit.
He wasn’t a good father, mostly absent, so I’m also mourning the loss of any possibility of a meaningful father/daughter relationship which I’ve been desperate for, whilst tearful over the very few happy memories from my very early years when he was actually in my life more. Every visit is distressing but, tomorrow I will slap on a smile, sing ‘happy birthday’ cheerfully and share cake with all the other residents, then sob alone in the car on the way home whilst feeling horrible guilt that he is in there.
We have already been through it once with my lovely DGM, always such a strong capable lady until struck by dementia, then she didn’t even remember being widowed or remarrying, I guess lucky in a way she didn’t remember losing a second husband. She adored my DC but didn’t even recognise them towards the end.
Dementia is awful. So sorry for others who have loved ones suffering

DM was diagnosed at 60 when I was pregnant with my first child. 7 years on she is in a care home and it has been an exhausting time full of waves of grief, for me, DF and me on behalf of my children. I struggle to visit as often as I feel I should. She can't communicate and only seems to recognise me fleetingly. Cruelly if I visit and she's engaging, I feel the grief even more and it sits with me for a few days, putting me off visiting again.

Last year she had an infection and ended up in hospital. That was really difficult as once she recovered and we went through the emotional rollercoaster, she returned to the home back at her base level. Explaining to the Dr that she was now well enough to leave was difficult as I was seeing how incapable she was through their eyes, while I'm realising that was her as well as she would get.

So sorry for everyone going through this- it is so hard.

DM was diagnosed with vascular dementia at 63 - shes now 74 and late stages. Been years since she recognised us, but has really deteriorated over last 6 months and is completely immobile and sleeps much of the time. I take comfort that she is now calm and seems comfortable - that hasn’t always been the case as she was very agitated for a long time.

I sometimes feel I’ve already grieved, yet when I think about her dying I feel a real sense of panic. I feel a lot of the time that I’ve lost a lot of myself, emotions are all over the place.

I’m so sorry OP. I’m posting from the other side as my DF had vascular dementia and died nearly a decade ago now. It was an awful time.

if it helps at all, I felt I truly grieved his loss when he was still alive and his death gave me a sense of relief/release. I had lots of other emotions to deal with (mostly anger) but I had grieved the lost relationship/person already.

I won’t go into detail because everyone has a uniquely awful experience with some common themes but I was lucky that my father was still loving towards me and recognised me until the end. Even if he couldn’t manage to say anything to me. That gives its own peace, after a time, albeit a sad peace.

I wish you (and everyone else posting on this thread) your own peace, in time. Xx

My mum didn't have dementia but she had a stroke and was hugely reduced from the person she was before. I do so feel for you OP as I remember how awful it was to sit with her and, whilst she looked the same dear old mum, she just wasn't in there any more.

She was quite elderly and the medics sort of assumed she had been the new her for a long time and I would try so hard to stress how, just months before she had been volunteering for charities, creating amazing needlework, a voracious reader and going to evening classes full of spark and joy. Then there she was sitting in a chair struggling to remember anything and form a sentence. They just saw an old lady but I was still looking for the woman I knew she was inside. I would read books aloud to her that I knew she'd loved with tears rolling down my face because the words meant nothing to her.

I do know exactly what you mean about wearing a heavy coat. You carry the pain with you all day every day and, if I'm being honest I found the fact that I didn't know how long I would have to wear that coat or how heavy it would get (I don't know how else to say this) overshadowed my life and made me feel like a bad person all at the same time. It's like a terrible situation with no good, easy way out for you or your dear mum.

When she died everyone was so kind to me, but I didn't grieve, I'd already done all my grieving when I lost her to the stroke. I do understand and send you love and strength.

MIL also has vascular dementia (alongside Alzheimers) and I don't think people realise vascular is not just about memory loss. So you are seeing a body in breakdown, not just a mind. It is a bit of a double whammy.
She went down the standard route of falling frequently, hospital stays, carers, convalescent hospital and now a nursing home. She is bedbound. Cannot use her feet or legs, doubly incontinent and her core muscles are the latest to go, so she can't even sit up any more, or adjust her own position. It is hard to watch her decline - as you say it is like grieving her whilst she lives.

Jumping on to say I'm so very sorry for all who have to suffer any kind of dementia or the effects of it.. my DF is going into a home next week. I have cared for him at home for as long as I can. It's not safe any more. In his more lucid moments, he still tells me his biggest fear is leaving his home and having to go into care. I haven't told him about next week as it's all been very rapid after a seriously quick progression over the last few weeks. Today alone I have been seven times to comfort him or deal with practicalities like food for him. Fortunately I am on summer holidays but this level of care isn't sustainable moving forward. But my heart is broken. He is very sad, whether more lucid or confused he's constantly sad, scared or anxious and whilst my heart breaks for him, the impact it's having on me is immense also. It's the saddest, most cruel disease. He's in good health other wise, and it terrifies me how long this could go on. Or not. I miss my Dad.

I think anticipatory grieving is very painful. It's not got a timeline, no end date, you know you're only just beginning and it caused me PTSD because the duration of agonising grief mixed with hope she'd be dead and out of suffering was a grinding horror.

Sorry OP :(

I'm so sorry op, I really feel for you as my dear mum is the same.

Mum was diagnosed with dementia 7 years ago. It was a huge battle to get her diagnosed as my dad was in denial and he has been hard work ever since, everything is a battle with him which makes things so much worse.

Mum was diagnosed with breast cancer last year and to make matters worse 3 weeks ago she took a fall and fractured her neck, she too has osteoporosis.

Mum got home from hospital last week and is a million times worse, she is now double incontinent and very vacant. I have cried almost every week for the last 5 years and now the tears won't stop.

My heart goes out to you and anyone else affected by dementia, it's a truly evil disease and as they say it is a very long good bye too. I grieve every time mum takes a turn for the worse.

Thanks for your response. Sorry you're in a similar boat! It's the hardest.

My Dad (can't call him DDad) has made it all so much worse. He keeps trying to get her out of the home and is constantly contacting medical people (some quacks some not) who he thinks can reverse dementia. It's exhausting and ruining DMs last years.

I deal mostly by compartmentalizing, so I only have to think about it when I go and see her but sometimes it just hits me like a train.

I relate to this so much. My mum was diagnosed 5 years ago and the last few years have been so hard, we're now in the "end of life" phase and I'm struggling with the limbo of not knowing how near the end is. She's only in her 70s and I don't know anyone else among my peer group who's gone through this so I mostly haven't talked about it as I find it so hard to explain, it's been really lonely and has definitely affected some of my friendships as i just can't cope with the "how's your mum" conversations. I feel so guilty for hoping the end is sooner rather than later, it will break my heart but I already miss my mum so much and at least then I could properly process and grieve, at the moment all my grief feels so "stuck".

OP I relate to everything in your post too, I've honestly found it mildly disturbing how effectively I've been able to compartmentalise - I have found it really difficult to let myself connect to any of the emotions I feel around my mum, and am numb a lot of the time apart from the times it hits me hard. I also massively relate to what you've said about your dad - it really adds a whole extra layer of stress to it all! I don't want to write too much about it here but please do DM me if it would help to talk more, I'm really struggling with it all at the moment too.

My heart goes out to everyone going through this. DM had dementia. It's a long grieving process. Every time you try to get yourself used to the new normal for that person then they deteriorate and you grieve again. My only advise is make sure you take care of yourself and get as much support as possible. I've been in an out of therapy for past 5 years - it has definitely help.