How do you cope with the grief?

[BulbasaurusRex]

Just that really. My mum has front-temporal dementia. There's still lots she can do but a lot that she can't. We can't have a proper conversation anymore.

It's agony that she's still here but not here. I feel like I have to detach myself to cope but then every now and then I have to feel it? My dad is her main carer, so it's not like I even have to deal with it full time, but it takes up so much of my head space with worry and sadness.

Are there things that you do to help you cope?

Have you seen that advert where the person dies over and over - that’s how I felt. When I realised my dad no long knew who I was I wept for many days. It’s a cruel cruel illness and I’m so sorry that you’re going through it 😢

I was just thinking about my Mum when your post popped up...
I'm very sorry you are going through this..

I'm 4 years into my grief about my wonderful, funny and amazing Mum.
2 years in a care home now..

All I can say is it gets easier.. still could cry at the drop of a hat but easier..

I try not to think about the time just before she was admitted as I was devastated and cried almost non-stop for days..

There's nothing I can say that will ever make this ok but I'm thinking of you...

You cope because you have to.

Can I offer some advice for further down the path, please?

First of all, hugs. Don't tell anyone, I have a reputation to upkeep. (hug)

Okay. Think about building a team around your person with dementia. You can't do it all yourself, you will burn out and make yourself ill. A team might look like: getting in a regular cleaner, engaging the services of a couple of carers and getting the carer to take your person to activities (memory cafe, to the hairdresser/barber) to get your person used to other people being involved.

Finances obvs are at play here, adult social services can signpost.

You, the carer. You need time away from the role of carer. Something absorbing and uplifting like Community Choir, a two hour slot once a week just for you.

Think about the future. Care homes can be lovely, but you need to know that care homes don't have nursing care - which your person might need later on. You don't want to get your person beautifully settled and then be forced to leave (this does happen) because the setting cannot meet your person's needs. Start looking now, ask around, visit a few, get a feel for what is available locally. What you don't want is a crisis catapult into any old place because it's all gone horribly wrong (quite likely)

Counter-intuitively, the person can be very much better in themselves in a safe setting like a nursing home, with trained sensitive skilled staff, meaningful activities, meals tailored to the person's likes, lots of stimulation and interaction. You the carer can return to being beloved wife, daughter, husband, whatever - shedding the mantle is very freeing. Don't be guilted by well-meaning busybodies people into keeping your person at home; keeping them safe at home can mean a very small life for the person, when more opportunities can be had in a formal setting.

Wow sorry for the essay.

Big love, people, this is an awful disease.

"Have you seen that advert where the person dies over and over "

• that’s how I feel. This is me and I always hated those dementia ads until I saw that one and it is so real.

My husband "died" to me last September after a UTI and I wept buckets when he became so incapable of doing anything except sleeping, incontinence and talking to the other people in the room except me. y

It really is grief by a thousand cuts - my mum had fronto temporal dementia and I cried when she couldn't remember my name. And when she didn't know hers. And a million other times as she disappeared. When she died I was upset, but it was much easier than for my dad who had been mentally fine till the end. But then slowly I was able to think of her more as she had been

carpe I am so sorry.

In a grim way, the death of my person wasn't hard, the worst thing to happen had already happened. You get numbed over and over by the losses of skills, the big jumps down, being frowned at because the person doesn't know you.

It’s awful - every time I saw my DM, I cried when I left as she increasingly departed. Her death was a relief.

Your DM may have good days - my mum did sometimes, stay around for these and enjoy every drop. I wish I had stayed for another hour the last time I saw her. She was
on good form that day. Just go with whatever she wants and wherever she is going in her head, don’t be rationale.

and if your DF can no longer cope, a care home is ok, caring for my mum came very close to finishing him off.

I’m sorry OP. Not sure I can help but I do understand.

My mum has Alzheimer’s and has done for almost 10 years now. Still fit and healthy but gone mentally. Those ads on TV at the moment kill me ~ it’s the long goodbye true enough and so, so hard.

What helps? Accepting it I suppose and not railing against it. It makes me angry when people say ‘But at least you’ve still got her’ because I haven’t. She’s long gone.

I am trying to detach emotionally because I’ve just worn myself out. And, unlike so many illnesses, it can go on for years and years. I can easily see another 5 years ahead if not longer. Sorry I can’t be kinder but I find facing reality helps.

Thank you - this is how I feel now, thank goodness somebody else feels like me.

ln a grim way, the death of my person wasn't hard, the worst thing to happen had already happened. You get numbed over and over by the losses of skills, the big jumps down, being frowned at because the person doesn't know you,

I also think it will be a relief for him when he passes - he cries, shouts, is unable to walk etc.and sees so many people in his room who are not there but give him grief all day. Thank you for your input which has helped me so much.

I am so glad it helps. Much love.

You are saying goodbye a few times. My mum did know me for the majority last 2 years of her life.

We had around 15 minutes one day when she knew who I was and we laughed and cried.

The blank confusion came back and I never saw "my mum" again.

Sending love

I’ve just come back to this thread after a busy day. Thank you all so much for your thoughts and kindness and pragmatic advice. I’m so sorry there are so many of us going through it 💐

My husband is great and my friends are too, but I somehow feel so lonely with it. It helps just to hear how other people are doing and coping (or not, like me), so thank you.

My dad and older sibling are not the sort to talk about things and my dad will very, very rarely ask for help.

i like the idea of building a team around the person - that makes a lot of sense and takes the load off one carer. I hope we can do that.

i have felt guilt many times at wishing it was a quick illness and would be over sooner, such an awful thing to think isn’t it.

Those of us who have trod your path will not think it awful, I promise.

If there's one available, try to join a support group, either in person or on line. It can be comforting and useful to talk to others who are going through it.

Firstly it is ok to grieve even though the person is still alive. If you need to give yourself any kind of permission for this then do.

My mom died four years ago this week.

My dad hid her dementia from us for a while. He was very clever at that, bless him, my mother and I had always been really close and I noticed very quickly. Slowly she faded. Forgot where the toilet was in her house, forgot where her bedroom was. We managed with carers to begin with, but eventually it got too much for my dad and she went into a home, where, when Covid came she passed away.

It was really in the home that the dementia ramped up.
She forgot my sister's name, had me explain over and over who the people were in the photographs in her room. But I also got stories of times in her youth that I had never heard before. Boyfriends before me dad, liaisons she had had. She was a funny old lady, but she slowly stopped being my mom.
So for a while I visited this funny lady who looked like my mom, but had stopped being the person I knew - and this was hard, but this was ok.

She called me Liam, which is not my name, and we sang childhood songs and had the same conversations over and over and even this was ok.

Some people say you grieve twice, but I think you grieve many times, and when she finally died - and I admit this to you, but not my family - I was relieved. My mom died almost eight years ago - the person who could strike fear in my heart by using my full name - the person who could knit do a crossword and watch tv at the same time - the person who could make a Victoria sandwich, a set of curtains and a matinee jacket on the same day - she had gone.

The little old lady who I was very fond of was somehow easier to let go of.
Be hugely kind to yourself OP, talk to whoever you can, both professional and not. It will be fcuking hard, but your mother is a fantastic woman, and fantastic women make other fantastic women.

Thank you - I did pop along to a carer cafe recently and it was nice to chat with people going through similar things. Could do with finding one that is dementia specific. I’ve attended some webinars by Rare Dementia UK which have been good but a local/more regular meet up would be great too.

Thank you so much for your lovely message. I read it last week when I was having a low day and it really helped - needed to come back when I wasn’t a sobbing mess to reply 😆

My dad tries to hide my mums dementia too - although she has a diagnosis now he still tries to pretend everything is normal and fine. Probably trying to shield me too! But then I worry about him. These parents eh?

I can relate to the funny lady taking over your mum’s place. Very early on my aunt told me to try and find humour where I can (her FIL had Alzheimer’s), so I will try and do that when I can and cry and rage when I can’t.

Hey @BulbasaurusRex . It's rubbish and unfair and cruel.

Dementia is often called "the long goodbye" and it really is.

I'm grieving the loss of my mum when she's stood right in front of me.

The mum I've known all my life has gone and a stranger has taken her place. She looks like my mum but she isn't my mum, not the mum I used to have anyway.

Practically, it does hurt less over time I am finding.

@Dementiadaughter I feel exactly the same. It’s really very rubbish isn’t it. Some days are harder than others - overthinking and ruminating over ‘what could/should have been’ are often my downfall. Trying to just accept things as they are.

hugs and solidarity 💐