I’m so done

[LawrieForShepherdsBoy]

I love my mum so much. She had a rare dementia that affects language and communication. My dad also had dementia.

It just takes so much to keep pushing and advocating for my mum. I’m so angry. I’m so tired. I’m so depressed. I have a great support network. But there are not enough hours to do what I need to do and everything is an uphill battle.

My mum would hate to know how much this is destroying me, but I don’t want to give up on her.

My Dad died of cancer last year, and the last 10 months of his life were unbelievably hard. I'm still recovering from it all 18 months on. I've never been so physically and mentally exhausted from having to constantly push for medical help/care help/advice/benefit claims - it all fell on me.

My only advice is to remember that you can't set yourself on fire to keep them warm. You need to be fully functioning to be her best advocate, which means breaks and chance to reset. Respite in any form needs to be grabbed with both hands - I was lucky that my DC stepped in and made me have the odd evening at home. And if you're not eating/sleeping well, take a good multivitamin because stress slams your immune system. I'm sorry you're feeling like this - and hope things get better soon

Thank you 💕

Dh has taken my dc abroad for a four days. We haven’t been away for two years. I knew I couldn’t go - I’m just so broken. I can’t even imagine packing a bag. I thought a few days to myself would help me recharge. I’ve spent all of it doing admin related to my parents. And I still feel so guilty for everything I haven’t done.

I had a counselling assesment this afternoon through local carers charity. I had two calls from parents gp during the assessment then my time was up. Then I had another call when driving home. And another when I got home and was video calling my kids.

And tomorrow I have booked myself a massage, but I need to call my dad to diffuse a situation re him driving which will push his relationship with their live in care over the edge. And make my mum distressed about going to her weekly music lesson. Today I meant to get in touch with the DVLA about his driving - he had a letter this week saying he’s fine to drive. And he was fine for a while, but he isn’t now. He will really kick off tomorrow and it will be so distressing for my mum.

And the doctor said they would call me again tomorrow to update them on somethings with my mum. And I felt like such a prick telling them not to call during the two hours ring fenced for my massage. Obvs didn’t say I was at massage.

I don’t have the knowledge to help, but you’re not at all unreasonable to ringfence those 2 precious hours. Enjoy them.

If your dad’s not safe to drive then he needs to be stopped before someone gets hurt. We’ve got a broadly similar situation and had to do the same. It’s plain crap but it needs to be done.

It sounds like you’re desperately in need of help. The systems really should be better.

He got a letter from dvla this week saying he was fine to drive. Based on doctors assessment from when he got dx in January. And he was doing ok then. But that was eight months ago. But he’s worse now and driving is something he’s clinging onto. Even though they have live in carer ti sort taxis and loads of money to afford them. As long as I have a chat with just before their planned activities, he’s okay. But that dvla letter has fucked me. And it’ll put carer in such a bad position and cause my mum huge distress. The music session tomorrow is so important to her.

Thanks goodness they have a live in carer. Or it would be even worse.

Or presumably they'd otherwise be in a care home? Would that not be better?

I hear you. My dad has delirium post a pacemaker. I have had to move in to care with him and give up work for the foreseeable, as apparently familiar people will help him recover. He became paranoid about his carer saying she had scammed him, so I reluctantly had to let her go.

Everything is a battle and I am exhausted making decisions on his behalf, and dealing with medical apts, medicines, finances.

He can be paranoid and anxious and needs constant reassurance and it’s exhausting.
I took two hours today to take my nieces swimming and he called me distressed wondering where I was.

Best wishes to all carers. It’s an uphill battle.

@78Summer im sorry about your dad. The admin is insane, isn’t it? My sister tries to pick up as much as possible, but in reality that means she just texts me.

I would consider a home for my mum, I really don’t think it’s the right decision, but she would hate to see me broken like this. It would be the end for her, the loss of independence and activities she goes to would be awful. But she would do it to stop me going through this. But then where would that leave my dad?

Could you ask for an urgent call to the gp and tell them about the situation with the driving ? Ask them to review him urgently ( maybe put it in a mail) and for the GP to tell him to stop? if the memory clinic hadn’t firmly told our Mum we’d have never managed to persuade her , she didn’t really comprehend she was ill ( and had driven all her life with no accidents )

You are amazing.

Im probably nearer your mums age than yours, and I would move into a home in a heartbeat if it made your life better.

And your mum might flourish in a good home - the right place (and some £) will arrange for her to continue with her lessons and give her the consistency she needs. Maybe not yet but don’t rule it out.

My advice would be a care home. There are some wonderful places out there. This might go on for decades yet.
I sometimes think modern medicine is a curse. Years ago, we got old, ill then died. Now we get old and limp on for years, usually at someone’s expense, 95% of the time a daughters life sacrificed to the care trap.
Put your own self first OP, I’d be appalled if my kids sacrificed their life for mine.

What did the counselling assessment say OP?

It strikes me from your posts that you seem to feel a huge responsibility for how everyone feels about any given situation - happy, sad, disappointed, kicking off, awful etc. How other people feel isn’t your responsibility, and you will burn yourself out if you are trying to make people (everyone) around you happy. I understand you are dealing with people (your parents) who are not necessarily able to process situations rationally but that’s not something you can do anything about. They are going to be sad and angry and disappointed.

You are clearly doing so much to help them practically and administratively: try and step back a bit from how they feel.

Thanks for your replies. About to have massage - managed to leave house without keys so have locked myself out 🤦‍♀️

I'm in a similar position as I sort things out for a parent with Alzhiemers and work full time. I was close to breaking point with it all recently but was able to take some time to rest.

It really is ok to accept that you need extra help or to admit it is too much for you and take a step back. I know there is guilt with doing this! You can always speak to a social worker and see what your options are.

I have found that the Admiral nurses helpline is great for advice and support.

Wishing you all the best with everything. You can only do your best and you need to think of your own mental health