Am I weak and selfish?

[JurassicMermaid]

Sorry this long but I really need some perspective/advice please. I (54), no siblings and no other family, care for DM (84) who is in middle stages of Alzheimer’s. She lives alone in the same town as us, with three very perfunctory care visits per day. I visit every day, usually 10 until 3 doing lunch, cleaning house, shopping, stimulating Mum, doing meds, washing and showering shopping, gardening etc. I have been doing this with the care increasing over the last 7 years. DM is physically well apart from some arthritis but has no memory short or long term and when asked by a carer who I was recently, the best she could do was an uncertain “family?”. I don’t think she realises she lives in her own home. All but one of her friends have fallen away and she no longer knows who her best friend is. When I can get her to leave the house, she can go to a day centre which she enjoys. I also pay for a friend to spend an hour with her on non-day centre days so that she can see a friendly face other than me. She is largely passive and compliant apart from washing and moving. Her continence is declining. She is well looked after and it is killing me.

I have a teenage autistic son who is struggling in and out of school and whom I am failing. I am menopausal and depressed. My husband has been begrudgingly supporting me financially (but in no other way) since I gave up work in lockdown when I was working 50+ hours a week, homeschooling son and caring for mum. I am now working three hours a week and hoping to grow that soon. We are likely to separate and then I will need to find full time work regardless of mum and son.

Am I weak and selfish to not want to do as much caring for my mum? I feel I’m empty and failing everyone. My mum is not self-funding in any way. Does anyone know if or how I can step back from this? Thanks for reading this far x

You have way too much on your plate. Can you seek support for menopause (HRT?) to help you feel better?

Regarding your mum, it is truly heartbreaking when a parent with dementia does not really know who their children are (I have been there). But they will still know you are a kind and loving companion.

I think there will be no easy answer which will please everyone. Good luck.

@LulooLemon thank you for your kind words. I am on HRT and anti-depressants which help. I feel like I’m in an impossible situation where I have to choose who (other than myself) I am going to fail.

You contact social services and give them notice, verbally and in writing that they have one weeks notice and then you will be stepping away and doing zero. No visiting, no shopping, nothing.
Only when a crisis develops will things change. Do you have POA?
Console yourself with the thought that pre dementia your DM would not want this life for you and not expect this of you.
There is no need to try and please everyone. Only yourself in the prime of your life. You and your family come first now.

Please get in touch with adult social services to get a proper assessment of needs.You need to get proper support for you.I know the cursary 5 miniute call from carers are absolutely useless and offer no real care. Please get social services invoved.

@cptartapp Thank you. I seem to feel I need permission to save my son and I. I was afraid that telling social services that I am withdrawing care would be the only way. I don’t want Mum to come to any harm. I think the ideal scenario would be for her to go into a care home where she could enjoy being social but from what I understand that wouldn’t be able to happen until she needed care at night. My worry is that if I step back they will just add another 5 min call and I am still there as usual. I do have POA - does that change things?

@DebbyU the calls are almost pointless. The carers don’t understand that if you ask a person with dementia what they want to eat, they’ll say nothing. So nothing it is. I’m tired of fighting with the care company to get the simplest things in place. Which they sort of manage for a fortnight then you’re back to square one.

Sorry OP, I don't have any expertise in these areas, but I wanted to answer your question, which is you definitely do not sound selfish or weak in the slightest, quite the opposite in fact. Your mum and son are lucky to have someone so caring. Your DH, not so much. Let's hope he doesn't require your care later in life!! He obviously has zero appreciation of what a huge physical and emotional toll this is on you.

What a heartbreaking situation. I’m so sorry.

in your shoes I would call social services and ask for an assessment for your mum. Explain that you need to work more hours and are no longer available to take on this care work. There will be a waiting list and you will have to be pushy.

Think of it like this: the next stage of your care work for your mum is to not to do all the care yourself, but to activate the system to support her better. This is still very difficult and time consuming, but it is better in the long term because you will not burn out.

Good luck and I’m sorry you’re going through this

@emmylousings thank you. There is very little care left over for DH. I’m spread too thin!

@Roastingcoffee Thank you. I feel very alone with the decision as I don’t like to complain to friends about it as some no longer have their parents and am aware that sadly other carers have it much, much worse. I think you are right re: my caring role is to find an appropriate and sustainable source of care for Mum. Knowing the situation in my LA, I know that even the pushiest get little but I can be a professional irritant as required!

@JurassicMermaid you are not weak and selfish. I gave my mum a similar level of care. She lived in an annex in our garden. It broke me. Her dementia had started but because I saw her all day every day I didn't notice the deterioration because I was filling in the gaps.

I can't tell you what my life was like because even trying to describe it brings up the feelings of panic and anxiety.

Sadly for us it took a crisis before I got the help I needed (she was like a swan, all serene, floating down the river and I was the legs underneath, paddling like mad, caring for my kids and husband and house!)

Does your mum get Attendance Allowance? Do you get Carers Allowance? Those things might be helpful in the short term but what you are doing is not sustainable. I had a breakdown even with the support of my husband, cousin, and daughter. Please don't get to that position. See your GP and tell him how you are on your worst days .

I'll say to you what my friend said to me "This is the best your mum is going to be. In three weeks/three months/three years things will have deteriorated. Start looking for help now."

The crisis for us was mum having diarrhoea and slipping and falling naked in her ensuite toilet. The carer said she though mum had had a stroke so they took her into hospital. My friend who had previously negotiated the care system with her own parents told me to say that I was withdrawing all aspects of personal care. While she was in hospital with a view to an increased care package it became apparent that she was not safe to go home and she moved to a rehab unit and then into a home. It has been hard and I have felt so guilty and sad but it was the right thing for her and the right thing for me. Please take care.

Thank you everyone for your advice and kindness. I gave notice that I was withdrawing my care from Mum as of next week so we had a two-hour long assessment by Social Services today. It was awful sitting back and letting Mum answer their questions. She was totally confused and just intransigent about how she would cope if I were not around. Not wanting to consider any further help and actually totally unaware of the help she is currently receiving. It felt worse answering “No” to all the questions about what care I would provide going forward. Of course, I will still be caring but in a different, less intense way. She is deemed to have no night needs so residential care is a way off. There is a meeting tomorrow to sign off the additional care Mum will need and the Social Worker will update me after that. I suspect that in the short term it will mean slightly longer “care” visits but we will see. I’m actually taking my son away for four days on Sunday so they know they have to get it in place pronto. Once again, thank you do much. I wouldn’t have been able to see the situation so clearly and been able to take such decisive action without you taking the time to talk to a complete stranger. I’m really touched.

I am really pleased you have been able to make this adjustment, and that you’re going to spend some time with your son. I hope you have a wonderful time!

You've had sine really good advice on this thread and I'm so pleased that you've listened and given notice.

Hope you have a lovely few days away

Well done. Don't be tempted to intervene. You need the carers to report to the company she is not coping between their visits. Don't plug the gaps. Try and stay away to force the issue and enjoy your trip.

Your Mum needs to go into a dementia friendly care home. It will be much much better for her. The professionals can give her the care and stimulation that she needs, and you can get your life back.
Please start the ball rolling asap. Fir all your sakes.

If they Social Services won't find and the OP's DM can't pay, how that going to be achieved?