Newbie - struggling to cope. Mental health suffering

Hi, I’m not sure what I want to say!

I’m currently shielding with my parents have been here 14 weeks.

Mum has motor Neurone Disease, diagnosed almost 2 years ago.

Dad has diabetes, type 2 but insulin dependant, vascular dementia and Alzheimer’s.

Doctors, community nurses, adult social services and continuing health care have all been so amazing, cannot fault them at all. Same goes for Motor Neurone Disease Association and Alzheimer’s Association.

Mum has funding for full time live in care.

We took the decision that I would move in and look after them both when COVID hit as the agency could not get long term cover, the carers were changing daily, every day was stressful as they couldn’t find cover until the last possible minute. Some of the carers were not suitable for mum, she struggles to weight bear, uses a rotunda for transferring, she’s not over weight but is a dead weight. She had a couple of falls because the carers weren’t strong enough to hold her when her legs gave way (she doesn’t need lifting, just leaning into to keep her upright but also turning the rotunda at the same time) I showed each carer how to transfer but she still ended up on the floor 4 times in a week having to call me or paramedics to get her back in her chair or bed, she was left on the floor for between 15 and 90 minutes.

The agency still don’t have anyone who can do more than 3 days, she is supposed to have a live in for 6-10 weeks on, 1-2 weeks off and then back in. It’s too stressful for mum as she has to tell new carers how everything needs to be done, she cannot talk, muscles in her throat and neck do not work so has to be done on her iPad, (she’s 75 and hates technology!) or I have to be here every change over. Also the added worry with 10-21 different people in each week, potentially bringing in COVID (mum - possibly up to 7 full time, another 7 break cover. Dad - community nurses daily, could be a different nurse every day) Dad cannot cope with new people in the house with his dementia and locks himself away to deal with it. The carers are supposed to support dad too, remind him to take medication, prepare lunch and dinner etc, some do but some don’t which meant I would have to be here for both of them most of the day so figured it would be easier and less stressful all round to do it myself. If either get COVID they would not survive.

Now the reason I’m posting. I’m not coping. It’s the lack of sleep more than anything, mum goes to bed around 11pm, she is very noisy through the night, coughing that sounds like she’s choking, I go in and most of the time she’s coughing in her sleep. She hums in her sleep! She needs help to turn over or reposition herself in the night, some times once or twice, sometimes 6-8 times. The last 10-12 nights she has decided she wants to get up at 3:30/4am and sit in her recliner but as she can’t talk she waves her hands about and growls at me but won’t use her iPad to communicate, the more I guess what she wants, the angrier she gets. I try to get her to do thumbs up for yes, down for no but she’s tired, cranky and frustrated and takes it out on me. It can take up to 30 minutes to get her up and by then I’m wide awake! I’ve had less than 4 hours sleep for the last 10-12 weeks and it’s torcher!!

I’ve spoken to CHC about reinstating the carers, a lovely lady (with much more patience than me) who got stuck abroad at the beginning is able to get back in 3 weeks but nothing else will change, there will still potentially be up to 14 others coming in weekly.

And the guilt!! If I leave, I cannot come back. I live in London, they live in Hampshire. The nature of my work, I cannot work from home, I have to mix with others. My brother is nearby and does all the shopping and other running around so he’ll still wave at her through the window but as I cannot mix with my brother and my niece except at a distance, I probably wouldn’t risk public transport for a 15/30 minute chat so if I walk away I may never see my parents alive again.

Sorry it’s so long and thank you to those who manage to wade through all of it!

Hi Ali,

I’m sorry that you’re having an extremely difficult time at the moment. Caring can be hard enough at the best of times, but with the current pandemic and all the added extra stress of trying to keep our loved ones safe and shielded from the virus there’s far more pressure and responsibility being placed on us as carers.

Are there any local support groups in your area that could help? Even if it’s just for some emotional support for yourself?

You now have to make a difficult decision.
I know that if mum had more carers you might be able to cope, but clearly the toll on you is too great.
Has anyone talked to you about how much longer mum is likely to survive, not a nice question, but one that needs answering.
It sounds to me like the only REALISTIC option left is a nursing home, as near as possible so you and dad can visit whenever you want, but you can get a good night’s sleep, and eventually go back to work.
Sadly, you also need to think about how dad will b looked after once mum has passed away.

I don’t say any of this lightly, at one time in my life I was supporting not just my brain damaged son but all four parents, all living locally, all entitled to highest DLA care. The toll on my husband and I was huge, and I’ll always believe that the heart attack that killed him was the result of all that stress.

Without the night time care you might cope but only just

With the night time care and lack of sleep its impossible without a huge mental and physical toll on you.

Your health matters too

I agree the only realistic option does seem to be a nursing home.

Hello Ali
I’m really sorry to read about your terribly difficult position. This must be so hard. If I had any wisdom I’d willingly share.
One of the worst things ever is the lack of sleep and I can understand how you must be feeling. It colours every waking moment, I hope you are able to find a solution to this aspect - I’m still searching. Sending you many compassionate thoughts…