Help and Advice needed - Dad with Dementia and my Mum having a breakdown I really don't no where to start

[underactivethyroidmum]

I originally posted this in carers however I'm hoping for more response here ..

Please can someone help because I really am lost.........

My Dad has dementia - not really bad but deteriorating all the time, which is as a result of him having a series of strokes.

He had another stroke just before Christmas which has resulted in a 3 week hospital stay and he is now in temporary respite to undergo intensive physio.
He is now unable to climb stairs and can walk no more than 10 steps and the physio yesterday told my Mum he is unlikely to improve. He is also now urinary incontinent.

They have a social worker who has now told my mum that they will discharge him within 2 weeks even if he is unable to walk and that she will have to arrnge for a bed to be moved downstairs and a commode

My poor mum is inconsolable. They live in a little terraced house and a bed and commode downstairs would have to be put in the living room which leaves virtually no room for anything else. She has a few health issues herself and physically cannot empty a commode, and although my Dad can wash himself he can't get upstairs to have a bath.

My Mum also minds my DS who is 2. He is the light of her life and the only time she goes out alone is to take him to the park or the local shops. Obviously a commode downstairs is not toddler friendly and my Mum is very tearful at the thought she won't be able to mind him. Last night in a very stressful conversation with my Aunt she said she has thought of commiting suicide but my DS and DD are the only thing that stops her

I really don't no where to start - can my mum get help with any care ? I have looked at stairlifts but the cost is way out of reach so what else can we do ? Does my Mum have to have Dad back at home ? I no she doesn't want him in a home but she also can't cope on her own.

Any advice or help is greatly appreciated as I really don't no where to turn ....

its a bit drastic, and it may not be something that either one of you wants, but, could you perhaps all move into a bigger house together? that way your mom still gets to be with her grandchildren, your father has his physical needs met, and most likely emotional too. you get to be with your parents when you both need each other.
a bit drastic, and possibly difficult initially, but its the reason for people living together in the past, could work for you. i didnt want to leave your post unanswered.

Has the hospital referred your Dad to a social worker, and Occupational Therapist?

They can help look at the practicalities of your Dad's disabilities and all of the solutions that are available. That might include downstairs living if it's at all possible or if your Dad now needs more care than your Mum will be able to provide or cope with, then the possibility of a nursing or residential home placement might need to be explored.

How is your Dad? Is he able to tell you what he thinks in a reasoned and considered way? Can he weigh up risks? If not, it may well be that he lacks "capacity" to make decisions for himself, and in that case the multidisciplinary team (Drs, Nurses, Physios, OT's, Social Workers and Family)at the hospital should make a decision regarding his discharge that will be in your Dads best interests.

I hope that has helped a bit, sorry to hear that you're going through such a stressful time.

No she doesn't have to have him home. She needs to tell the social worker though.
Request a multi-disciplinary meeting with the team to discuss the plans for discharge.

Good grief. Bumping for you. Feeling for you all so much, wish I had more advice.

If your mum doesn't think she can cope they can't send him home, he sounds like he needs more rehab tbh.

It sounds like your mum is feeling a bit bullied by the social worker which is not how it should be at all.

Your mum could appeal to the council for help with housing and it sounds like he will need a hospital bed and pressure relieving mattress if he does come home.

Your mum can say no - and it is probably the fastest way to some care package being put in place if she can care for your dad with assistance. For instance, they can send in carers twice a day to get your dad up and washed, there should be a day centre that he could go to to give your mum a break in the day etc. Some day centres can bathe people too.

She'll need support to get this, so you'll need to go with her to see the social worker to talk about a discharge plan and be really, really firm. Insist on an OT assessment to check they both could cope.

Is there a carers centre locally ? They can be great advocates. Also the Alzheimers society are super helpful and may have a local drop in centre

the above equipment can be ordered and provided by the nhs x

If he can't manage stairs then the choices are either bed downstairs or stairlift (and not all houses are suitable, not all patients can use them safely) or going into residential care (its unlikely that they would both be rehoused somewhere suitable in a time the NHS would consider reasonable for him to stay in hospital).
TBH residential care is the commonest outcome of this situation that I see. He isn't going to get better sadly in the long run he will get worse so maybe its best to make that decision now. If he is able to make that decision himself he is entitled to say yes or no. If he is not then a decision can be made in his best interests and by law the family must be consulted.
If he stays at home he will be entitled to a care package from social services for washing and dressing and probably a day centre one or two times a week. This is means tested so depends on their savings whether they will have to contribute. Same for care home but as long as your mum still lives in the house the value of the house doesn't count.
You and your mum could ask to see the consultant in charge of his care if you feel the social worker isn't listening

DSis and BIL have a similar problem with his parents (his father has dementia) - if anything a bit worse because his brother had suffered brain damage and was also looked after by his mother. His mother did end up having a breakdown, was admitted to hospital, and has been unable to cope since. BIL and his sister were stuck with what seemed like an intractable problem. However, after a great deal of effort, they managed to get his brother into some sort of sheltered complex and set up carers to visit his parents twice a day. Obviously the family do an awful lot, and it has been a great strain on BIL, but the situation is manageable (just).

If you could accompany your mother to any meetings with social services you could make sure she stresses the impact on her mental health and that she really needs support. Many older people don't like to admit to this. Also, she ought to be entitled to a carer's allowance (if they still have them - they did three years ago).

Your poor mum, and poor you. So sorry you're having such a difficult time.

Re stairlift - my mother had lung cancer and became too breathless to climb her stairs. Her MacMillan social worker got her fixed up with a stairlift which was free for a six-week trial, and then she paid rental on it (six-monthly, I seem to remember). The company involved removed it when she died.

This was more feasible than buying one outright. I suppose it would be worth asking if your local authority has a similar scheme.

It's hard to comment on how your dad might cope without knowing and seeing him but on the face of it your mum has been coping and now your dad has had a stroke .
It seems early days to be making decisions about residential care .
Sadly I think support does vary from area to area but I help support a 96 year old lady who is completely unable to move but lives in her own home on her own .
I've been involved with her care for 10 years and her mobility and amount of care have changed over time .
But I'm here to tell you that she gets 5 ( yes 5 ) double handed ( 2 carers at a time ) visits a day . She has a hoist and profiling bed ( like hosp bed ) with air mattress and reclining chair ,pads etc all provided by soc srvices /NHS .

By the way there's an aid called a cricket hoist
www.thiis.co.uk/new-products-cricket.aspx
which is fantastic - it's not standard issue and professionals ( occup.therapist etc ) tend to order standing hoists and full hoists ,but its easy to use ,quite small and might help your dad ( I've heard of someone who used it on holiday in their caravan ) .

It's really upsetting to me to see how some people ( like the lady I support ) can get so much and others don't - a lot of it in our case has been learnt over the years and doggedly persuing the powers that be - and sometimes striking lucky with an excellent professional .
Good luck and let us know how it's going.

PS - not obvious from my link ,but cricket hoist good for transfers to commode ,bed etc and for washing .
Might be other links giving more detailed descriptions .

Thank you all for your support.

We have now been assigned a social worker who has basically given us two choices. My Mum can have him home and she could have someone come each morning and evening to help get him washed and dressed etc with a placement 2 mornings a week at a day centre 10 miles away. She would however have to install a stairlift and do some modifications to the outside of the house (install a ramp etc). We can apply for a grant but the waiting list is currently 2 years in our area !!!

Or she can ask for him to be placed into residential care. At the moment I think this is the better option as he could still come home for weekends etc but he would recieve full care. I also think this would be the safest option - he is nearly 18 stone and I'm terrified he will fall and hurt himself or Mum.

But my Mum is worried about the financial implications. They own the house but have very little savings - approx £5k, and my Mum does not have a pension or any income in her own right, and although my Dad gets a modest pension from his previous job the Social worker has said this will be taken to pay towards the care home.

We have just over two weeks to decide what to do because he is going into respite as I have a holiday booked.

Thank you all once again for your support - its good to know I'm not alone x x

Hi Under.Sorry it's so tough.Sounds like you need some good financial advice-try age uk or CAB.She must have an entitlement to a pension of her own.

They may be able to help in other ways too.Good luck.

I think you really need more advice - it's a big decision to go suddenly from living at home to residential care and your dad might improve physically and be ok ,with more support at home .
Though of course I don't know the circumstances .
It seems unclear if the residential care is temporary or permanent and this will affect cost .
It also seems as though no one has given your parents adequate advice about their financial situation .
Please try and get better /clearer advice ,the legal bit on mums net is good
www.mumsnet.com/Talk/legal_money_matters and CAB might help as well .

Also would renting a stairlift be an option as suggested by roxyrobin ? - seems lots of companies do it www.stannahstairlifts.co.uk/renting-stairlift .

Good luck .

underactive sleeping downstairs and having a carer come in everyday is fine. It works very well for my parents. It means they are still in their own home and it is nice that someone comes everyday to help out. They have the same carer who is a pleasant person- it took a while before they found someone they like but its nice that it is the same person everyday- its nice for the carer too.
The downstairs room had to be made pleasant and was decluttered so as to get a bed in- all the cousins helped out.

underactive your mums priority is going to have to be looking after your dad and that is the priority for their home adaptations too.
your toddler has you. your dad doesnt. your mum already looked after you when you were a baby. she doesnt have to look after your toddler if she cant manage it. make that clear to her otherwise she might feel guilty.

I was told in passing that unprocessed virgin coconut oil is helpful for dementia.

Hope things are OK.