Not to want to be bloody strong?

[tomissmymum]

DM, probable early onset dementia, age 56; waiting on scans to confirm and stuff although GP and consultants seem pretty convinced .

She needs 24/7 care, she’s having seizures, she’s needing help with all aspects of daily living .

I’ve had no break at all since the 10 March - no more than 20 minutes .

I’m physically and mentally exhausted, I’m crying myself to sleep every night then waking up in the same state the next morning.

two weeks ago I walked out, rang police, threatened suicide and told them I couldn’t do it anymore . SW told me that they’d help - then a week later they told me I probably won’t get any respite until 2023 at the very least . I think they said covid and staffing crisis .

GP said today even if she is diagnosed with Alzheimer’s there’s hardly any help for anyone under 65 .

My relatives are trying exceptionally hard to help which is good .

But I’m exhausted, I’m heartbroken, I’m angry, I miss my mum dreadfully . Im having dreams where she’s back to normal then I wake up and remember and start each day off by crying in the shower . I haven’t got any friends left, I can’t go out even for a walk alone to clear my head as carers are only here maximum 20 minutes.

I can’t keep doing this, I don’t want this anymore - I want to run away and never come back but that would be selfish and it would hurt and frighten my mum .

Surely there must be some help, somewhere, something? I can’t be mum’s carer forever surely? What about my life? There must be something somewhere that I’m missing .

I keep being told in r/l that I’m ‘strong’, but I’m shattered and so close to collapsing some days that I’m clinging on to the counter when standing . This can’t be the only way of sorting this, surely .

I used to work in care, and was going to post that it usually takes a crisis for something to happen....... but you now know that.

Whatever happens OP, you stand proud because you've kept your Mum safe and well for all this time - and now others can step in to help. Do not accept your Mum home again under any circumstances.

Take a breath and start to look after you now. You've been amazing, your Mum would be so proud if she understood Dementia is so cruel, you're mourning the loss of someone but they're still physically here.

You did nothing to upset your mum, remember that. It’s the dementia causing so much confusion in her brain.
Please take time out for yourself to recharge your batteries, have some rest.
If you can, make sure your mum has tests for her thyroid, all vitamin levels and UTIs. It’s a very slim chance any are wrong but any of these things can aggravate her situation.
Im so sorry this has happened, it’s a vile illness. If I ever win the lottery Alzheimer’s Research is top of my donation list.

I'm so sorry this terrible, undignified disease has hit your mum so young, and you've been forced to make these decisions decades before you would have expected to.

You're doing your best, for both of you.

You are being strong. Being strong does not mean always coping, it means facing what is happening. You are, it’s hell and you are allowed to cry, rant, feel like you’re going crazy. It’s a terrible situation and a travesty that no help is available.

I’m so sorry, your mother is heartbreakingly young to get this awful disease. My mother was older but I still remember how she would get lucid moments when she understood exactly what had happened to her and she would cry and cry and all I could do was hold her.

sending you hugs/virtual handhold.

You know it's the disease to blame for everything, so you don't blame Mum for what it's doing to her. The same applies to yourself. DO NOT blame yourself for what is happening to her. YOU ARE NOT GUILTY.

The good news is that the episode forced SW's hand and she is now getting the assessment and care she needs. Because she has dementia,
she almost certainly has no memory of what she did and said to you.

You both deserve kindness; you can still give it to her in little ways, a loving card, holding hands, and you still need it too. So be kind to yourself.

🌸❤️❤️❤️ I’m so sorry xxxxx

thank you ❤️❤️❤️❤️

Mum’s still in hospital, she’s not likely to get home any time soon . Her GP said she doesn’t want mum being discharged into my care just now, and social worker said they’d do a full assessment of her needs first .

all her tests are coming back normal , apart from the brain scan she had done a few weeks ago .

I so, so desperately want to see my mum, the last thing she said to me was angry and that I’d caused all this to happen, and I was told to leave the room asap as she was so angry, I want to go in and see her but family are saying no, not just now . I don’t even know if I’m allowed to talk to her on the phone, I don’t want to make her worse or more unsettled . I’m not sure if I talked to her if it would make me feel worse .

I rang the hospital very late last night as I couldn’t sleep for worrying, and they told me mum was still on 1-1 obs as she was agitated/upset but she was safe and they would tell her I was asking for her .

Her brother went into see her but I think found it very difficult or something like that, I’m not sure .

I’m scared something awful will happen and the last thing she said to me was how much problems I’ve caused her .

OP you have my deepest sympathies, I've been through the same very recently. When your Mum suddenly isn't your Mum, but an aggressive sweary stranger who hates you and behaves in a way they never have. That awful feeling of guilt/relief when they're in hospital or a care home. Needing to speak to them but knowing it won't do you or them any good. The littlest thing setting you off. And the overwhelming impact on your life and mental health.

Be led by the advice from the hospital, but sounds like she'll be placed in a care home.

Take as much support as you can from family/friends/work/counselling, anything. Hopefully if she is in a decent care home you'll at least have the assurance that she's being cared for, and there is NOTHING more you can do. That will feel utterly alien, I know.

Take care

I’m scared something awful will happen and the last thing she said to me was how much problems I’ve caused her.

That wasn't the last thing your mum said to you. That wasn't your mum. That was her illness speaking - whatever that turns out to be.

What was the last thing you mum really said to you OP? What was the last real conversation you had with her? Remember that.

Dementia doesn't kill people. The mistakes they make because of it can put them in danger but she is being protected from those at the hospital. You will get to see her again. And she will get over this patch - but it will take time. She will be your mum again - if only for fleeting moments... but she will.

and hugs. Another echo of its the disease speaking not your mum I remember the tears - it just used to hit me. I was grieving for the person that was. It is so difficult but hospital / care facility is about loving your mum.

just quick update … I do read all your lovely messages thank you so so much , it really helps .

mum is still in hospital … she won’t get home until she’s had more scans which will be days- weeks potentially .

I ended up with covid on Monday night - couldn’t get out of bed on Tuesday, ended up crawling downstairs at one stage .. todays the first day I’ve been able to sit up for longer periods and gotten dressed . Still feel exhausted/breathless on movement but not as bad thankfully .

isolating certainly isn’t helping the loneliness though .

I have managed to FaceTime mum a few times . She had a lovely 4 min chat with me a couple of days ago in which she told me how much she loved me, and then the same again today, told me how much she loved and misses me . In between that I get some very confused chat but I’m hanging onto the ones where she’s more lucid. She seems to know who I am now . That’s good .

she’s got a room of her own, a lot of her own things with her, and she’s safe .

I miss her like crazy, I keep looking up to ask her a question then remembering she’s not there to talk to … the jubilee stuff isn’t helping much as it’s all happy people together and here’s me totally alone !, but I’ll get there in time .

Oh how awful for you both. Please don't try and be 'strong' though. You can see it will take a team to look after her. You will need your strength to be there for her - perhaps not as a career.
I hope you get some answers

Just sending you some love OP

It’s an awful disease and it’s so painful watching those you love succumb to it. Please remember that deep down she loves you and that any anger comes from the disease and not your mother.

Can you join any local dementia carers support groups? You may find the support and experience of people who are going through similar with their loved ones helpful.

You poor pet.
I'm around your mum's age and that is so sobering to read.

It is a dreadful disease.

I am so sorry.

You sound like an incredible daughter BUT no mother would want this for their child.

Your mother was/is so loved by you.
She knows that.
Please try and block the disease from souring your memories.

I would never want my children sacrificing their life for me in this situation.
I hope you feel better soon.