Mum with early dementia caring for housebound Dad

[Greycardi]

My brother and I are really struggling to help my parents and any advice or comforting words would be appreciated.
Dad (77) has been in and out of hospital about 12 times over the past 3 years, firstly having a pacemaker fitted and a double bypass, then with recurring bouts of vomiting and gallbladder surgery which was unsuccessful. He has low dopamine levels and therefore has very low motivation or decision making ability. This manifests itself in a really negative way, he refuses physio and refuses food/fluids a lot of the time, so he is very thin and has lost mobility unnecessarily.
He is currently at home with my Mum (77) who has early dementia (not yet formally diagnosed). They have carers going in 4 times a day to help with his personal care, but in the short space of time this arrangement has been in place Dad has fallen out of bed three times. He can't stand unaided so has to be helped out of bed using a turntable, which takes two people. He is getting very frustrated and so is Mum with the constant comings and goings, and having to wear incontinence pants.
Mum's memory is very poor now and we can't rely on her to make any decisions about Dad's care, or remember to feed him enough or give him his calorie shots or his medication. Dad has threatened to hit Mum today because the carers moved him into a chair and after a while his neck started hurting and he wanted to go back to bed.
We feel so trapped by the system as everything is determined by my Dad apparently having mental capacity, my mum being undiagnosed and no power of attorney in place. If Dad is moved to a home, it will be against his will and my Mum struggles to remember how to drive to new places to visit. At the same time she is worn out but won't/can't decide to move closer to us.
How can it be right to discharge someone with such extreme needs into the care of someone with developing dementia? We have explained everything to the social workers and it makes no difference.

 

[AlsoConfused]

A couple of thoughts -

Your Mum and Dad have carers going in 4 times a day. If this level of support is being paid for by Social Services or the NHS, the support they're getting is pretty close to the maximum anyone would receive before being encouraged to think about residential care. The level of support given is also not working (because your Dad has fallen out of bed 3 times already and is acting aggressively and uncooperatively, putting his health and your Mum's personal safety at serious risk.

All this suggests to me the Social Workers / Community health team are probably well aware matters can't carry on as they are.

It sounds like a "failed discharge" from hospital because the care plan isn't working. I'd try emailing and speaking first to your Dad's consultant (via his / her secretary perhaps?), listing and diarising all the events putting your Dad at serious risk of further hospitalisation and creating unacceptable safety risks for your Mum. Copy the hospital Social Worker in on the conversation.

A new care plan is needed - what are the options that the health professionals, hospital social worker and community social worker recommend? How might your parents be persuaded to agree to them?

Using the right phrases sometimes helps. Talk about the current situation being a "failed discharge", about the need for a "new care plan" and about both your parents being in their different ways "vulnerable adults".

Your parents' GP may be a good ally if you can recruit him / her. The GP may or may not be allowed to talk to you about your parents' medical state - that depends on whether they've formally given their consent - however doctors can and do listen to the well-founded worries their patients' relatives and friends may have about patients' health.

 

[Spiro]

Sorry to read about the problems you and your brother are having with your parents.

Once the Bank Holiday is over I suggest you contact their GP in writing outlining your concerns - one letter for each parent and then follow up with a phone call.

Mum needs to be assessed and diagnosed.

Dad should have had an OT referral and home assessment prior to discharge. If he had physio in hospital, then they should have picked up his risk of falling. Next time he falls, dial 999. It sounds as though he needs to be readmitted and reassessed and make sure the hospital liaise with SS

Getting your Dad readmitted means you can start to deal with your Mum's issues while he is hospital.

I would complain to the hospital about your Dad's discharge and speak to PALS. Contact your MP as well.

Realistically, your parents may need to be separated as they pose a risk to each other.

You need to get POA for both parents.

 

[Greycardi]

Dear Also Confused, Thank you for taking the time to write such a long and helpful reply.

Yes I think you are right, 4 lots of two carers per day is the maximum and we know this is the last chance saloon for Dad - at least in terms of his ability to live at home.

Dad isn't really under the care of a consultant - although we think he should be. The last consultant who dealt with Dad attempted a gallbladder operation on him and perforated his colon which led to his last hospital stay of 2 months during which Dad lost a lot of weight and mobility.

Should he be assigned to a consultant gerontologist?

The irony is that Mum and Dad have BUPA cover but as we don't have POA in place for either of them, we can't easily arrange referrals for them, and Mum has really lost any ability to organise things, make phone calls and so on.

Falling out of bed - the solution we have been given is a crashmat on the floor next to Dad's hospital bed, which has a half rail. The Occupational Health lady said full rails pose an entanglement risk. Essentially that means that when Dad falls out, he has to lie on the crashmat until the next lot of carers come..

I myself live 120 miles from M&D and go there once per week. I have 3 brothers, one of whom also lives just over 100 miles away but he goes every 3 days - which is very demanding. Another brother could visit but does not bother at all. The last brother lives in the US.

Worst thing is the watching the situation unfold like a car crash in slow motion and feeling so out of control and unable to help. Neither of them deserve such a painful and stressful old age.

 

[Greycardi]

Dear Spiro, thank you for your reply.
At the moment we are trying to act on Dad's wishes, ie to be at home. The hospital can't really do anything much for him, as he refuses physio. They have judged that he has mental capacity to decide where he lives...however we know he is starting to get confused (for example, with the names of his dogs), and he hardly speaks at all.
However at the same time this is taking a huge toll on Mum.
My brother took Mum to the doctor and told her to mention to the GP that she is having memory problems. However this made Mum really angry and she won't or can't acknowledge that she forgets most of what happens each day.
GP won't insist on memory tests if Mum is not willing.

 

[Spiro]

Essentially that means that when Dad falls out, he has to lie on the crashmat until the next lot of carers come..

Not ideal. Does your local council have Telecare? You wear a pendant round your neck or have a wrist band. By pressing the button you send a signal to the control centre which is manned 24/7. They then alert the emergency services.

I would consider writing a letter about your parents, because then you have a record that you alerted the GP about your concerns.

 

[Pegsdaughter]

Before the poa came through for my mum I had real concerns. I phoned her gp surgery and her doctor phoned me back. I told him and he took note and made the necessary referrals. It's worth the phone call. frankly they should take note of any concerns raised by the family. This deemed to have capacity really annoys me as it is made by someone who only sees them for a short time when they are presenting well.


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[canary]

I agree
Unfortunately, if he is deemed to have capacity and wants to stay at home, then I suspect you will probably have to wait until the car crash unfolds

I would start looking at care homes so that when the inevitable crisis comes you know where you would like him to go. I agree with spiro - send a letter to his GP outlining your concerns. I would also cc it to social services.

 

[dinny66]

This sounds just like my MIL and FIL almost to a tee. My wife and I are in a similar boat, and you have to wonder how bad it has to get before SS will actually do something.
The only difference here is FIL wants to go in a home, but we have no idea how to even start.

 

[Greycardi]

Today's episode of chaos!

Went to visit Mum and Dad today - Mum had given Dad two different laxatives, and he had explosive bowel movements just before I arrived. Somehow Mum had managed to get him out of bed and onto the commode, clean all the sheets, pyjamas and back into bed. She told me one version of events and told my brother another version on the phone in which she said that Dad had been throwing up bile! So my brother was desperate on the other end of the phone saying we should call an ambulance...I stayed a few hours and we managed to get Dad to drink water one sip at a time and eat a little food. Seems back to 'normal' now whatever that is.

Every day seems to be like this -full of anxiety and we never seem to know what to do for the best when things go wrong. Sorry to have a moan - I know everyone on this forum is in a similar boat, maybe much worse.

To add to the general feeling of chaos Mum seems to accuse everyone of taking things these days - she told me I had taken the spring from her curtain rod and the carers had stolen a roll of bin bags. In her mind these things are equally serious as Dad's illnesses and cause her just as much anxiety.

 

[Greycardi]

This sounds just like my MIL and FIL almost to a tee. My wife and I are in a similar boat, and you have to wonder how bad it has to get before SS will actually do something.
The only difference here is FIL wants to go in a home, but we have no idea how to even start.

Hi Dinny66, I am sorry to hear that you are also dealing with a similar situation. My dad has had two short stays in two different residential care homes and I just wanted to mention that they were poles apart in terms of the quality of care. The first one was a very cramped room, not purpose built. Dad was sitting in a chair all day but the window was too high for him to see out. The door of his room was always closed and the promised 'rehabilitation' never happened. The home could not seem to cope with anyone who didn't want to sit in the lounge.
The second residential home was far better laid out and organised - the rooms were airy and designed so you could see out of the window. The doors were kept open and there were plenty of staff around, including trained nurses who you could talk to and they would give you an update on Dad.
So I guess what I am saying is, it is worth looking around a few different places to get a feel for them.
All the best over the coming weeks and months, which I am sure will be very tough for you and your family.

 

[jknight]

Went to visit Mum and Dad today - Mum had given Dad two different laxatives, and he had explosive bowel movements just before I arrived. Somehow Mum had managed to get him out of bed and onto the commode, clean all the sheets, pyjamas and back into bed. She told me one version of events and told my brother another version on the phone in which she said that Dad had been throwing up bile! So my brother was desperate on the other end of the phone saying we should call an ambulance...I stayed a few hours and we managed to get Dad to drink water one sip at a time and eat a little food. Seems back to 'normal' now whatever that is.

Every day seems to be like this -full of anxiety and we never seem to know what to do for the best when things go wrong. Sorry to have a moan - I know everyone on this forum is in a similar boat, maybe much worse.

To add to the general feeling of chaos Mum seems to accuse everyone of taking things these days - she told me I had taken the spring from her curtain rod and the carers had stolen a roll of bin bags. In her mind these things are equally serious as Dad's illnesses and cause her just as much anxiety.

Greycardi,

I used to worry that my concerns were less 'worthy' as mum wasn't as far into the dementia journey as others! I have since learned that it is tough at any stage and TP is a fantastic place to offload. There is always someone to offer advice or just lend a listening ear!!
Keep posting
J x

 

[dinny66]

Hi Dinny66, I am sorry to hear that you are also dealing with a similar situation. My dad has had two short stays in two different residential care homes and I just wanted to mention that they were poles apart in terms of the quality of care. The first one was a very cramped room, not purpose built. Dad was sitting in a chair all day but the window was too high for him to see out. The door of his room was always closed and the promised 'rehabilitation' never happened. The home could not seem to cope with anyone who didn't want to sit in the lounge.
The second residential home was far better laid out and organised - the rooms were airy and designed so you could see out of the window. The doors were kept open and there were plenty of staff around, including trained nurses who you could talk to and they would give you an update on Dad.
So I guess what I am saying is, it is worth looking around a few different places to get a feel for them.
All the best over the coming weeks and months, which I am sure will be very tough for you and your family.

Thanks for the advice. There's a a book just been published by the local authority regarding care homes etc so we'll have to go through it and choose one.
It doesn't help that my wife has been in hospital for 3 weeks (she has MS and is wheelchair bound) due to some nasty pressure sores so can't do a massive amount to help. It's no wonder I'm off work with stress trying to look after her, our 2 sons and the in laws.

 

[Greycardi]

Dad not eating and being grumpy with Mum

Feeling exhausted today after a 250 mile round trip to visit Mum and Dad yesterday. Dad is hardly eating a thing - I got him to have a sip of water and a teaspoon of icecream..Mum knows we are really worried about it so she seems to be just making up things about what he eats and drinks. However as we are not there all the time we can't tell. The carers give him sips of a drink he was prescribed by the dietitian. He is supposed to have 4 bottles a day but it is more like 4 sips.
Poor Mum is confused and forgetful - they both have eye infections but i am not sure she is remembering to use the eye drops. I bathed Dad's eyes yesterday and clipped his nails which were really dirty. He snarls at Mum if she tries to do the same. He is using a urine bottle but seems to miss a lot of the time so we had to wash the duvet in the bathtub. Poor Mum, I feel so sorry for her having so much responsibility on her shoulders. What can you do when someone refuses to eat and drink? We are trying to get Dad into a rehab unit but no joy so far.

 

[Dothedealnow]

Some great info above.
Just a couple of points. We took my mother's car off the road three years ago when we realized she was getting confused and after she had a small accident. Luckily no one was hurt, but I should have taken the car off her at least a year earlier. Also you have to reapply every 3 years(?) if over 70 for your DL and inform your insurance company of certain medical and mental conditions otherwise your insutance is void. Something my mother had forgotten to do. Hindsight is a great thing.
My mother point blankly refused to sign a POA. This means we can do nothing about her affairs formally, in realty if you make a nuisance of yourself, things get done!
As we don't have a Power of Attorney, we have applied to the mysterious Court of Protection to be Deputies so we can manage my mother's financial affairs. Suggest if you think you may not get POAs that you read up on it. As mum is a self funder we are some 15K down as we have no access to Mums accounts.


Good luck.