I have been caring for my elderly disabled mum for 17 years. She lives in a bungalow (we bought for her) directly opposite me. She has severe osteoarthritis plus other medical issues. She has had 3 bad falls within 3 weeks, the last being on Thursday and is currently in hospital. The first fall she fractured her hip.
Social Services devised a care package in place 3 weeks ago with 4 visits a day. Mum is deteriorating rapidly, hardly able to move, sits/sleeps in a recliner chair and is incontinent. I am still doing a lot for her but my husband has just undergone chemo for terminal lung cancer (form of asbestosis) and has been given 12 months to live. I am caring for him as well but am having an operation myself this week.
I feel stressed to the limits and unwell myself. Social Services are being unhelpful and mum expects me to carry on. I have no-one else to help me and am literally at my wits end. Mum refuses point blank respite / nursing care home but no-one is listening to my needs. I feel I can’t carry on. Sorry for the long outpouring but any advice would be appreciated.
Quick questions, how old are you, mum, and husband. Whose name is one the property mum lives in?
Back tomorrow!
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CHC / NHS Continuing Healthcare ?
Main thread … colour coded for ease of finding anything :
I have been in a very similar situation. Counselling helped me develop clear priorities.
My son with learning difficulties had to come before my mum’s needs, she was disabled but could speak up for herself and afford additional services, like cleaner and gardener.
I was waiting for 2 knee replacements, so both son and mum had to accept I couldn’t do the things I usually did for either of them.
Your mum is in hospital. IF she is determined to go home, you must make it very clear that you CANNOT do anything at all for her. I’d suggest a nursing home for the time being to “help her recuperate” until she is “well enough to go home” with carer support. Of course, that’s probably never going to happen. What mum really wants is to go home fit and well, again, not going to happen!
YOU are the top priority this week. As a poorly carer, your LA should be arranging services for your husband while you are ill and recuperate. (What sort of op is it, no need for full details, but knee, abdominal, gynaecological would help us give best advice. I’ve had all 3 types!) Make sure your consultant knows you are a carer, and ask how long are you going to be out of action for.
YOUR HUSBAND should be accepting help himself, as you can’t do the things you usually can.
Make sure you make this a “Life Changing Moment” in your life, when your role changes from care provider to care manager, checking everyone else gets what they need, so you can get a life of your own back.
Is your husband getting any help from the Asbestosis Compensation Board? This is a horrible problem, I worked in a hospital in Western Australia near an asbestos mine, and several of our patients had asbestosis. Is he claiming Attendance Allowance? Getting any hospice help?
Thank you all for your ideas on how I should be tackling my situation. Mum’s still insisting she wants to come home but on asking her how the nursing staff were assisting her, she said she had to be moved by hoist for bed, chair and toileting.
I am going to have to be brave and insist she goes for rehabilitation care on discharge from hospital and stick to my guns with both mum and social services.
I’ve told mum I’m going to be out of action for a few days after my operation and inform the nursing staff accordingly.
Wish me luck !
Will take on board the safe guarding advice.
Thank you
Does mum realise that going home means that she will have to wear a “nappy” and if there is no one around, she will have to sit in her own mess until the carers arrive? This is the brutal reality of what is being proposed.
For my own mum, always very fussy about cleanliness etc., she couldn’t bear the thought of this - especially as her bowels were somewhat unpredictable. It was the deciding factor in choosing a nursing home. Not what we WANTED but what she needed.
Sorry bowlingbun, didn’t answer your questions.
I am having a breast operation to remove ducts and biopsy for any possible cancer that might be there.
My husband is in receipt of attendance allowance and I qualify for carer’s allowance for him. Unfortunately, the Insurer’s cannot be traced for his employment when he worked with asbestos.
I have been an unpaid carer for mum for 17 years now.
Gillian, I have a friend visiting for a few days. Google “Asbestosis Compensation Scheme”, I’m sure it covers everyone regardless of tracing the insurer.
Yes, bowlingbun, she has been wearing pads and unable to get to the toilet. Refused to wear pads and a lot of arguing ensued. She won’t always wear them and refuses to change them.
Will do bowlingbun, thanks