Hello my ma is 94 she had a stroke in 2021 (after Covid shot) she came and lived with me for a month to recuperate it worked as we were decorating at the time and living toom was empty. She wanted to go home and did. Her stroke aphasia has left her with word/sentence forming issues and cognitive decline. I live 3 minute drive away so have always looked after her. She has arthritis so mobility has declined to she can only stand with rise/recliner chair. She suffers feet/lower leg odema. She has copd and it seemed fluid was in her chest GP doubled her water tablet to 80mg which put her in hospital with dehydration. She was confused so had 6wk recovery place. She couldn’t stand/walk. They decided she needed residential care. The care homes were abysmal and the suitable ones had waiting lists. She’s been in residential/hospital like care for 2 weeks. I’ve been walking her everyday with zimmer. She wants to go home my dilemma she needs more care now and carers aren’t good I had them for a month they are young and do basic. I previously installed cameras for my benefit to see how she manages so can see they get food and ask anything else and they’re gone. So I go back to this with my support, clear out my living room my 20something kids are living here or leave her there they are all altzimers no one speaks to each other. Like I said the better care homes are full. She’s a lovely lady quiet she just wants to be home in her chair looking out the window.I’ve no siblings so this is alot to take on. My husband and I haven’t had a holiday in 12 yrs luckily he’s wonderfully understanding but thinks she needs more care going forwards and its too much to start again. I visit daily for 2 hrs it’s just so difficult maybe if there was women more on her wavelength I’d be happier but in the lounge she sits with only men. I haven’t told her this could be permanent as she keeps moving her legs because I told her she has to walk before she gets home this guilt is overwhelming.
This is what she wants, but what she needs is way more than this. And her care needs will increase, not stay at the current level she is at. What will you do when she can't walk on her own anymore? My best friend's Mom had aphasia so I understand how worrisome it is to leave her where she can't communicate her needs well.
My own 96-yr old Mom now has agency provided caregivers. After 2 months and experiencing 6 aids, she finally has 2 she really really likes. They happen to be older ladies in their 60s. Just want to point out that this is the state of employment today: for in-home aids you will need to expect to cycle through several people before finding "keepers". It was this way back before covid when I had to find an in-home aid for my 2 elderly Aunts. It took several people but then we landed a lovely woman who was with them for 6 yrs, full time.
Please don't feel guilty since you've done nothing wrong. Indeed, you're doing yeoman's work for your Mom. It's ok to feel grief, since everything about age-related decline is hard and is mostly about loss.
No one gets to stay here forever. No one is promised Hollywood exits. May you receive wisdom and peace in your heart as you work out solutions.
Now that's out of the way, it sounds as though your mother has an end stage situation with the fluid retention in both her peripheral system (right sided heart failure) and the lungs (left heart failure). If she on lasix then 80 mg is a large dose. You as her MPOA or Proxy should now discuss with MD and with mom the possibility of hospice care. The failure of the pump that is crucial to life means that you are facing the end of mom's life, and decisions should be made.
Meanwhile your mother will have to be in care with help hopefully of hospice or in your own care with help hired in and help of hospice as well. There are really no other solutions. There is more than your mother's needs here, there is the needs of your own nuclear family and yourself.
I am sorry. This is an imperfect situation in which no perfect answers are extant. You will have to do the best you can for mom and this you need to discuss with her. But throwing your own life onto the burning funeral pyre will not help in the situation.
The choices aren't good and I am so sorry for that. It is, if you stay on Forum and read, the norm. I can't tell from your wording if you are in UK or USA but while your health care system is (in my opinion) better than ours, the basic problems exist. They come down to needs versus costs and ability to pay for those needs. Just a tragic situation to walk through. Get the help of all social services you can access. Wishing you the best of luck, I am hoping it goes well as it can and you'll update us on choices as you go.
My mum had the same health issues. The district nurses on the palliative care team came every morning to change the meds in Mum's syringe driver. She was on morphine, which was gradually increased according to Mum's needs, a high dosage of glycopyrronium to stop secretions and decrease the fluid on her lungs (which eased her breathing, although caused dehydration) and midazolam to sedate her and prevent seizures. If my stepdad had known exactly what these drugs would do, he would have fought against them being prescribed, but I pretty much took over at this point.
I wanted Mum to stop feeling frightened and to have as pain free and peaceful a passing as possible. And I knew that's what my mum wanted. She had been a geriatric nurse, a carer, and the manager of a sheltered housing scheme. She'd sat with enough people as they died and she knew what she did and didn't want. I first sat at the bedside of a dying elderly woman (at the request of my aunt, the ward sister), giving comfort, at 9 years old.
Death shouldn't be scary or painful if it can be helped.
There are people in all levels of dementia residing in Memory Care. Ask the staff to seat mom with folks at her cognizance level, and that can help. My mother called the residents "stupid morons" yet she was there for the same reason they were. Anosognosia is real.
Best of luck with a difficult situation.
You didn't make your mother old or to have a stroke, so now all you can do is your very best to make sure that she is receiving the care that she needs and that she is safe.
And with everything she has going on health wise, it may be time to bring hospice on board as well so you can have extra sets of eyes on her while she is in the facility, and they will make sure that she is kept comfortable. Plus they will provide any needed equipment, supplies and medications all covered under your mothers Medicare, along with access to their chaplain, social worker and volunteers.
And when she gets placed. make sure that her chair is by the window so she can sit and look outside. You can even put a birdfeeder outside her window so she watch the birds.
I wish you well in finding the right facility for your mother.
God bless you for being a loving daughter.
Focus on your husband you made vows to, not so much your Mom. Don't even attempt to bring your Mom to live with you now. She needs to be somewhere with trained people to deal with her medical issues. Your Mom won't be the same since her stroke, it is very hard on anyone.
Let your Mom handle herself and who she talks to, it seems she is adjusting. She may do even better if you didn't go orbit around her every day. Different people will come and go, or you could try taking her to Adult Daycare a few days a week to meet new people and have some simple activities.
Be very glad she is not manipulating you, crying and whining, or trying to move in with you! Good luck!
* contact a medical social worker (independent or through MD referral)
* get into therapy to discuss your concerns / feelings. This is a lot - if not TOO MUCH for you to be doing.
* If there are funds, you should be getting paid for the care you're providing. Document everything.
- Google "family caregiver and payment" - find out how to proceed
- See an attorney if you feel it is needed - to get legal documents and financials in order.
You and your husband need and deserve a vacation.
You cannot run on empty.
If you do not take care of yourself, it will present somehow - a breakdown, depression, not taking care of yourself (over-under eating... not exercising or enjoying lif, sleep issues.
I know ... we know ... many of us have been there.
Gena / Touch
Because of the NHS and social services being different in the UK to the US, accessing services is slightly different too. Social Services is a government run agency and there are no independent social workers.
However, not everyone knows what services they can access. As this used to be part of Mum's job, and teachers also sometimes deal with social services, my family was probably lucky in knowing more about how to access help.
My friend, who was being treated for cancer over the last year, was lucky that I knew what help she and her husband could access. Like my stepdad though, my friend turned down having carers when she was discharged, despite it being free for a month or so. (I don't know if this is usual, but my friend was in hospital for months.)
I feel that the information about assistance isn't always as transparent as it should and could be. I get the impression that this is the same for government agencies everywhere :(
As far as getting paid, it depends on the age of the OP and how much caregiving is taking place. It's worth looking into Carer's Allowance, but I suspect that 2 hours a day won't be enough to qualify, especially as they do not live together. Carer's Allowance is usually paid because full time caring prevents the carer from working.
However, depending on the OP's mum's savings, care may well be free. If the mum has more than £21,000 in savings, then care will be self-funded. It's worked out on a ratio between £16,000 and £21,000. I think it's free if the mum has less than £16,000 in savings, but don't quote me! Double check on the government website.
If the mum goes into residential care, then any home she owns would need to be sold to pay for it (although the last £16,000 they have doesn't need to go towards care and housing, as far as I'm aware - check). If they don't own a home or have extensive savings, then they apply for benefits to cover the costs.
Of course, all medical fees are free.
I don't think it's that help can't be accessed, but that the OP isn't happy with the standard of the nursing homes in her area. I can understand that and it's particularly difficult when her mum is still aware enough to not want to be with people whose dementia is more advanced. My own experience tells me that not all homes are the same and it's worth looking around. Also, that she needs to realise that she may be thinking of this from her own perspective and about how her mum seems to be (or used to be), not actually how she really is.
my prayers are with you.
We all enter this world the same way but we don't know how we will leave and cross the veil. I pray for your moms peaceful existence in the meantime. I am going through a very similar situation.
A suggestion for you...
The two best..BEST caregivers I hired were from the local Community College. The College has a CNA certification program and people that go through that often continue to Nursing School, go on to be Paramedics but some will work in facilities near by. Al and Memory Care as well as Skilled Nursing.
I hired 2 that were waiting for the Nursing Program to begin. I said I would be able to work around their class schedule. (Never needed to do that as my Husband died before the classes began🥲)
So if you have a community College near by you might want to contact them. There are other "Trade or Institute" Schools that offer CNA classes it might be a good idea to check those as well.
You also have nothing to feel "guilty" about.
You did not cause the illness.
She is 94!!
She has had a good long life, and I presume she has been a good mom or you would not be feeling the way you are now.
If you could get into the "WABAC Machine" (Rocky and Bullwinkle) What would your mom tell you if you could go back 30 years? I doubt she would want you to rearrange your life, your husbands life, your kids life for her. I am sure she would want you to enjoy time with your husband and kids.
I think it's hit and miss with carers. If the mum is self-funding, it may be easier for family who arrange it to state what they want carers to do while they are there. I know that when social workers arrange care that the carers stick to exactly what the social worker states is needed. I made a point of liaising with my mum's social worker to get the best for Mum.
Hospice is a place for people who are in need of intense care so that they can live while they are dying. They are usually run by charities.
If the mum is deemed to be at end of life care her GP (or the hospital doctors) will recommend Palliative Care.
The palliative care team would probably recommend that she is placed in a nursing home (sometimes a hospice home, but these are few and far between) because she lives alone.
Because my mum lived with her husband, they agreed to care for her at home. They offered to place her in a nursing home, but her husband said no.
The district nurses visited my mum every morning. They changed the meds in her syringe driver and checked on her wellbeing. The GP visited so that he could prescribe the end of life meds and to give the district nurses authority to increase Mum's medication as they saw fit. We could call them out 24/7 if Mum became agitated or in distress. Carers came throughout the day to care for her. This was all completely free.
However, I have to say that I've discovered that the quality of palliative care is a postcode lottery, with some health authorities doing better than others. This was the subject of a newspaper report some months ago.
Palliative care is only introduced when a patient is deemed to be at end of life. This means that they are not thriving, no longer responding to treatment and are expected to die within weeks or a few months.
The drugs would not usually be suitable for anyone who is expected to live longer because of their high dosage or side effects (although not side effects that can cause discomfort, as that would be counterproductive).
Palliative care enables people to die comfortably, pain free and in relative peace.