Coping with waves of ‘grief’

[tomissmymum]

I don’t know if it’s proper grief as my mum is still very much alive, but she has dementia, and she’s not very likely to make it to 60 - she’s 57 just now . She needs full assistance with all
activities of daily living, can’t really communicate verbally now at all.

I have a few weeks where I cope OK - was fine for about 5 weeks - and then something throws me off and I feel like I go back to square one. I’m not coping well at all these last few days, I had a really bad panic attack last Thursday and then nightmares again last night - have had them recurrent for about a year - dreamt last night I was desperately searching for my mum as she was under threat, but couldn’t find her - as daft as that sounds .

Then when I’m awake I can’t bear to think about reality so end up dissociating completely so I don’t have to remember.

Underneath it all is I can’t get my head round the fact that my mum will never, ever have a normal conversation with me again, my life has completely changed - I was her sole carer for years and years and she was my best friend. Now I’ve got a bit of a life of my own but it hurts so much that my mum isn’t a part of it at all, all I’ve got left of her is one visit every 2-3 months, photos and a couple of boxes of her stuff . I miss her, hugely.

When she got taken into care last year, at crisis point, she was so angry with me in a way she’d never been before and I know it was dementia causing it, I’ve been told that a hundred times over, that mum didn’t have a clue who I was, but it hurts so much that I can’t get that reassurance from her that I didn’t do anything wrong iyswim, I just want her to tell me everything’s alright but she can’t.

I had to get rid of so much of her stuff so quickly, had to pack her house up and house is now gone completely,
and I’ve kept what I can but I feel so guilty, my mum worked so hard to make her house the way she wanted it.

How can I make it easier to cope on bad days like today? I’ve got input from NHS MH team and have been given phone number for Alzheimer’s charity/rare dementia support and I’ve got a lot of family, friends who I know would listen but get told the same thing over and over ‘it’s normal to be sad’ and to ‘focus on the positive things’ but it’s so, so hard to do that sometimes .

It's called "anticipatory grief" although imo, when the person you're grieving for has essentially left you despite still being alive in body, it's just grief. Unfortunately the only thing that really helps is time, but for what it's worth, a few things that helped me cope with the worst parts after my DH died:

• Getting outside for a walk when I felt hopeless
• Screaming into a pillow when I felt overwhelmed
• Calling the Samaritans when I need to get it out
• Reminding myself that it was a wave of grief and would pass, just like it always had before, just like it always would
• Allowing myself to feel the emotions but moving my thoughts away from unhelpful ruminations

It's shit, there's no getting away from it. Sending you love.

People who say focus on the positives need to be hit with a wet fish. I hate it, I completely undermines and invalidates your emotions.

Had to have a leg amputated..”look on the bright side you still have another leg”

You are 100% allowed to be pissed off at the universe, it’s not fair at all. You are grieving for you mum already as the person she was isn’t here anymore. The cruel disease has taken her from you.

Im not sure I have a magic formula but allowing yourself to be sad and upset is step 1, if you keep pushing these feelings aside it just bubbles. Put on a sad movie with snack and cry your heart out on the bad days, go for a walk and scream from the top of the hill. Allow yourself to feel the emotions.

It’s ok to feel guilty about her house, she was obviously house proud and you know that. However that guilt shouldn’t be towards yourself. It should be anger towards the disease, that’s caused this not you.

Im so sorry that you going through this, it’s hard to loose someone you love without them actually being gone, you are in no man’s land.

I'm with you OP. My DF is in his last weeks, dying of asbestos related lung cancer. Anticipatory grief is the absolute pits and I'm so sorry for what you're going through 💐it sounds like you did the absolute best you could for your Mum at the time. I understand you miss her, even though she's still physically here ♥️

thank you . I'm so sorry re losses, its hell isn't it.

It's so hard to get my head round the forever aspect. I've never felt so desperate for a conversation with my mum. I find myself blocking it out as much as possible, and then as you say it all comes back at once.

I had a conversation with someone I trust this morning, she's the same age as my mum and she asked how I was, and what I wanted to say was, some days I can't bear to move from my bed and I find myself crying before I realise what I'm doing, I cry at the slightest of things, I go over and over things in my mind a thousand times trying to figure out if I could have done something differently. And what I really want is a hug and to not be alone all weekend and to be told it'll be OK.

Instead I found myself telling her I was fine and 'probably just a bit hormonal' because I didn't want her to worry or to think I wasn't trying.

I did manage to do a small positive thing, same friend I spoke to this morning, was sifting through some of the stuff I did grab from mum's earlier, and found a small thing I thought that friend would like, she's never met my mum. Texted her and asked if she'd like it. She's absolutely delighted.

I just get scared sometimes, that feeling you get when you're with your mum and you can completely relax and know your mum loves you unconditionally, I can't get that anywhere else and that worries me that I'll never have that feeling again - I've got a huge family and we are much closer now but it's so hard.

It’s awful. Your mum is so young. Mine was too. It used to piss me off that people thought I didn’t love her any more as she had dementia and was difficult. Or compared it to their distant relative. Or told me it was a blessing she didn’t know me any more as she’d hate to be in that condition.
I don’t know what makes it better. Talking didn’t help much because no one understood. Walks or breaks helped a bit. Just know that everything you’re feeling is valid and ok. It is shit. And of course you miss your mum dreadfully. I’m really sorry.

I’m so sorry you are grieving for your dear Mum and agree with letting yourself feel what you feel, it is a truly terrible disease and loss. Have you anyone in your family or close friends who you can be with to feel safe, held, hugged, accepted without having to put on a brave face? My situation is different, but I have a friend who is always there and it is very comforting, although sometimes it feels easier to be alone. Sometimes my dog really helps. I cuddle him and cry and just express grief. Do you have a pet?

No-one can replace the mum you love so much and give you that sense of security but you can and will find love and safety within yourself and others in your future. There’s nothing but to just get through it. I don’t really believe we get ‘over’ grief, it just becomes part of us. And your mother lives on in you, don’t forget that.

Being sad and upset is positive though, it's how you process grief. As many tears as you need are allowed. Your mum is very young so that must really hurt.
I've recently had a loss and sometimes I feel very guilty all of a sudden or that life is so unfair and what helps me is telling my DH how I feel or if he's not there I just say it out loud. The feelings always pass and sometimes I look at old photos and remember the occasion and shared happiness which helps a lot.
That feeling of missing them makes me feel sick, that's the worst. I find doing something like colouring, reading articles and jigsaws means I concentrate on something but my mind is constantly going over everything.