I just miss my mum

[hookystreet]

I've NC as long time user and I think I'm only writing this to get it off my chest. Keen to know if others have been in the same situation and how you manage to cope.

My mum has advanced dementia and now barely registers who I am when I go to visit.

I'm in my 30's with a young DC and the grief of not being able to speak to my mum or her have a proper relationship with her GC feels just unbearable at times.

Most of the time I plough through and try not to think of it but I feel so angry and sad that this opportunity has been stolen and she's a living ghost. It seems so horrendously cruel to expect people to suffer the indignity of this disease.

I just want my mum.

I had to reply- just to share solidarity. I'm same- I was 29 when my mum was diagnosed with early onset Alzheimer's. I just wanted to say I totally understand- the anger and just wanting the lovely mum I had back. It's really unjust

Hi OP, I'm so sorry - it's awful isn't it. So strange and sad to see the person that you know and love but they are not really them.

My father has advanced dementia, and similarly hasn't recognised any of us in a long time. He has good days and bad days, but is wasting away, so thin and frail. He has no life now, just existing.

It feels like we can't really grieve because he's not gone, but he's not here either, just a shell of a person, and only going to get worse. I dread the future, and sometimes pray that he will just go to sleep and not wake up so he's spared even worse to come.

Also wanted to say that I'm also late 30's and most of my friends' parents are much younger, so they don't really understand either. It can be lonely at times.

Thanks both, it's very hard. It feels especially difficult when it's at such a comparatively young point in your life where big changes like children happen and the people who would be most pleased for you can't share that happiness.

I'm sorry you're both going through the same thing. As you say @Farmageddon it's like a grief limbo.

I too often wish she would quietly pass to save her anymore confusion or the anxiety that accompanies it. Then I feel bad for feeling that way, can't win.

I visited my mum today. She hasn't recognised me for a couple of years. She became distressed, saying "Where's Neolara?" I was holding her hand, and saying "I'm Neolara. I'm here. I'm your daughter". I couldn't get her attention at all and she continuing to look around the room in distress, trying to find the me who I am in her mind..it's a terrible disease.

I feel grateful that this has only got so bad now I'm in my 50s. I'm very sorry for all of you who are experiencing this in your 20s and 40s. Too cruel.

It is so unrelentingly cruel. My heart goes out to you all.

I too wished for my parent's end to come, and the relief when it did was very real.

@Neolara sounds like you had a tough visit today, it doesn't matter what age you are, your mum is still your mum.

@SerpentEndBench I'm sorry for your loss but pleased it gave you some relief. I often think this disease is like grieving in reverse.

I lost my mum in February.
I’m 61 and it was extremely traumatic to watch her deteriorating before my eyes.

She didn’t know me as her daughter but thought I was her mum. She seemed to think she was just a little girl and I ought to be look after her as ‘That’s what mothers do’.

It really was a blessing when she passed away and I hate saying that as I miss her every day 💔

I wondered if I wrote this post and forgot, based on the title. I absolutely understand the feeling. So often I feel sorry for myself because honestly I still need my mum. But she’s just not … there anymore. I want to share parenting stuff with her, and get her advice, and make plans and it’s not possible. Then I feel guilting for thinking of myself when she’s going through this horrid disease.

This is me during and after every visit with my lovely mum. She’s gone and in her place is an empty shell. I miss her and feel sad for her ~ she would hate to be like this. I can’t see an end to it as she’s fit and healthy it’s just her mind that has gone.

Guilt comes with the territory. I do wish it was over, but just have to accept how unknowable it all is. I do hug her a lot and it helps.

Just wanted to join in and say how much I hate dementia.
My mum died of breast cancer 18 months ago and I miss her every day, but in addition my dad has dementia and has got so much worse and more demanding and frail since she died.
Effectively I have lost both parents in 18 months.
I have no one else, my adult children are all neurodiverse so they can't support really me.
My mum was always my go to person and I have physical pain I miss her so much.

I've been there OP I totally understand. My lovely mum died last year after 7 years of dementia. Visits towards the end were incredibly hard as she slept most of the time and when awake didn't register me at all. She was my rock, best friend my everything, we used to speak at least once a day, always at the end of the phone for advice, a chat, a laugh. The first person I would call with news good or bad. When she died last year I felt relief that she was free of this awful disease but grieved for the mum she used to be.

I miss my mum too. She's in a care home and hates me for putting her there. We used to be so close and I now have no-one to confide in. F**k dementia.

It’s so horrible and sad. I saw my mum today and she needs me so badly. I hate leaving her. It’s so lonely supporting our parents with dementia but so much worse for them.

Hi all, I'm sorry I hadn't replied to your posts, I don't seem to get notifications through the app.
Thanks for sharing and I'm sorry we've all got experience of this.

I find it very difficult sometimes as I would love to just have a normal conversation with who she was and so sad that I had the last one and didn't realise that it wouldn't happen again.

I try to get something positive out of the visits and it often sharpens the mind to put things into perspective on the short life we have, reminding me to take advantage of experiences whilst I can, as god only knows what happens to us in our old age.

It truly is a cruel disease that robs everyone of the opportunity to have a meaningful goodbye

Big hugs. Yep, it's shit and so tough.
My Mum also had dementia. But the part where she didn't know me nearly broke me.

I was 28 when my mother was diagnosed. I’d lost my father to cancer at 17 and am an only
child so it wasn’t ideal. The first few years post-diagnosis were broadly fine. She was forgetful but made a lot of lists, knew me, managed at home and then with carers. But she’s now been in a care home for seven years, she’s skeletal, hasn’t known who I am for at least three years, has no idea that I’ve had another child, has no speech. It’s horrific.

She had a chest infection and nearly died in September and I was so hoping she would pass away, but instead she turned a corner and is now back in the living dead. Doubly incontinent, eating puréed food and fortisip, unable to walk, no speech.

I’m now 41 and haven’t had a mother in years.

It’s the most horrific disease.

I needed to find a thread like this as there is no one in my life who can relate to the pain of my mum having dementia. I'm so sorry for those who can as I know how awful it is.

My mum was diagnosed at 60, when I was 35 and had just found out I was pregnant with my first baby. She was desperate to be a granny and never really has been. She is now in a care home and my kids are 4 and 3.

I find it very hard to visit. She has what I call the rubbish dementia as she doesn't live in the past, she doesn't get confused by the present, she just isn't here. She says very little now. We get a big smile initially, then she'll space out and fall asleep.

I am exhausted by the constant, ongoing grieving. I hate that she is missing out on my children. My MIL passed when my eldest was 1. I grieve for my kids having no grannys and try my best not to think about what they are missing out on. It is so fucking hard.

This is why euthanasia should be legal, especially if people have left wishes. My mum died last year and left a letter of wishes....it wasn't respected. She would have hated her last few months and shouldn't have been forced to endure them.

I feel exactly like you are all describing about my dad. However, after reading this post i have decided to give myself a bit of a talking to! I am 48 and my children are 15, 18 and 21. So my children and I did have my dad through the years when they were little and I am so grateful for this. I miss my dad being strong, the go to person. He is becoming frail and looks to us to guide him, he doesn't speak much anymore, he cant find his words. I feel so guilty for not wanting to see him get worse.

The other thing i miss is he would always be willing to do anything if it involved my children or when i was younger me. When i was doing A levels he took me round Shropshire graveyards measuring gravestones to look for acid rain erosion , now he is becoming very selective about what he will do and where he will go. If he doesn't want to do something he takes to his bed with a tummy ache like a naughty toddler.

I don't know why I haven't seen this thread before. I am in a slightly different position - I am in my 60's and all my children are married adults. I am an only child and was always very close to my parents. Along with my dad I cared for mum who has severe osteoarthritis and when she died I took over everything and tried to fill the gap that dad had left.

Then in 2021 she had a fall, went into hospital with a suspected stroke and from there, via a rehab facility, into a nursing home.

Two years after being in the home she has very little language, doesn't know me most of the time, she can do nothing for herself - arms and hands are twisted from contractures.

She lived for her grandchildren. Now she has no idea who they are. When the last of the grandchildren got married we had a party at the home with the bride and groom in their wedding clothes, speeches, photos, cake and toasts. She looked beautiful but she has no recollection of it at all.

She now has two great grandchildren and although she seems pleased when I show her photos she is always shocked when I tell her she is a great grandma.

I visited her on Tuesday and a school choir came to sing. During one carol I told mum "I remember you saying that this is Dad's favourite." Her eyes lit up and she sang every word. The song finished, the shutters came down and she was back to being blank. I miss her.

Ithink it is such a cruel disease isn't it? You experience grief for the DP yet physically they're still here.

@SiouxsieSiouxStiletto it really is. She changed so quickly from my fun loving generous mum to a mean spirited stranger and now she is just a shell.

It's several years since my parents died in old, old age but this is what I did a lot as I was losing one to dementia after the other had died and I was grieving the real death alongside full-time caring for and grieving the one whom I was losing at a very fast rate. I put, propped up in their easy chairs opposite me, my favourite photos of them and I would drink a cuppa and talk aloud to them as if they were still there and able to be their old selves when they'd be sharing a cuppa with me. I'd tell them all my and my children's news, talk about what was going on in the world in general, and I'd ask for advice about things that were bothering me. I'd cry (a lot) as well and all of it helped. I felt - and still do - as if I could tap into what they would have been saying back to me if they'd been able. Oh, and I also use the excuse of their birthdays to eat birthday cake for them on those days while I chat to them. I'm pretty strict about limiting things like eating cake nowadays but their birthdays are a good excuse. I think it would make them smile.