Refusing care

Oh dear ,so sorry to hear all this .
Will it have to be a nursing home if she's permanently cathaterised ?

Keep strong ,she may improve a bit with full nursing care .
Please don't feel guilty ,she needs care .

I'm sorry you're going thru this OP ,she'll probably be fine once moved .
Why has she got a catheter ? I don't want to add to your distress but my understanding is that prolonged use actually causes /contributes to loss of bladder control .
So I think i'd be asking why it was necessary and when it could be removed .

Hi LadyBeagleEyes, I felt like you when my mum was first diagnosed with dementia. I thought it was best to keep her at home for as long as possible. But the behaviour that comes with the disease makes it so difficult for carers to live a normal life. I am the only family member around (DB lives abraod), and at the time it all kicked off my DCs were both still primary age. Even with regular carers coming in I ended up abandoning my Dcs with only a bowl of cereal for tea while I sorted out my mum, not to mention middle of the night phone calls, hospital appointments etc. One day I cracked after she'd phoned me 40 times in a morning despite having had carers in. Luckily the community psychiatric nurse organised an immediate respite placement at a local care home for her, and she's been there happily ever since. She is well cared for, always has company, the food is great, so are the staff. With hindsight I wish we'd done it sooner. She is much happier and better off.

I wish you all the best whatever you decide , it ain't easy.

((Hugs))

x

Please do not worry too much about her going into a Care Home. My husbands grandmother is in one and it is the best thing that could have happened to her. She does not have to worry about meals (no meals on wheels in our area) and she is looked after brilliantly. We looked at several homes before choosing where she should go and she was very unwilling. My parents-in-law live 50 miles away and we were the nearest family. She is happy there now as she feels safe during the day, her meals arrive regularly and there is a choice at lunch and supper. Her incontinence is managed professionally, the staff are lovely and there is always something going on although you do not need to join in if you do not want to. We visit her regularly and she come to us for Sunday lunch fortnightly. We can take her out shopping or for walks in the local area (in her wheelchair) when the weather is fine and her quality of life is vastly improved.

Hi - didn't want to leave your post unanswered. The really hard thing is facing up to the fact that the parent/child role has reversed. I was so shocked when I realised that I had to take over the decision making for my mum - because you're so used to regarding her as a fully functioning, comptetent adult - it's so hard to get to grips with the fact that she can't do it any more.

This may sound harsh but it's really not meant to be - I think you need to calmly think about why you want your mum to be in her own home - is that really and truly what is best for her ?

I spent quite a long time taking it at face value when my mum said she was "fine" because part of me didn't want to face up to reality - my sister was the same and she resisted moving my mum because she didn't want to let go of the image of mum living capably in her own home and going out and about. It was hard moving mum but I have no regrets because she spent her last few months clean and comfortable, enjoying the social activities and I got to spend more time with her.

On a practical level I think it would be worth contacting AgeUK.

Hope this helps - hugs

glad you're feeling a bit more reassured op

one word of warning, do not let her leave hospital without the care in place, I have been promised meetings and care set ups before and they are impossible to start once they leave the hospital care, its out of their hands then and becomes a community problem

your mum will probably get rapid response, this is a 4 week care package 3 plus times a day which is great, but its when that dries up the problems start

you will have to grit your teeth and push for all the help you can get, the social worker, the doctor and the ot don't work together so don't assume they'll all know about your mums problems, you need to get on the phone and start the ball rolling for better care or residential care

its crap and so hard going

good luck

It's so hard isn't it?

My mum would say she is fine too and wants to go home. However she also thinks I am having an affair with a guy in the IRA and my dad is having an affair with a 17 year old!

Is your mum showing any signs of confusion?

The time in hospital will give the doctors time to really assess her capabilities and the level of care she will need.

To get my MIL to accept carers her GP told her that the drugs she was on were v complicated and so he would be sending someone to help her with them. (One is a patch and they put it on her back where she can't reach - although it's not strictly necessary for it to go there).

When she stopped answering the door to carers we had a keysafe fitted. This is a small box just outside her home with a numerical code to open it. Her door keys are inside so carer (who knows the code) will ring bell and open the door within a minute or two and walk in.

Her demential is getting worse but she is not incontinent. She wasn't doing washing or cooking (I used to wash her stuff and cook for her and put in freezer with instructions stuck on) but now carers do this and she pays for it. She has a carer for half an hour twice a day.

I think you need to think about the fact that if she was in a home you would be able to visit and enjoy the visit with her, rather than run around doing things in the home whenever you or your sister go.

We have POA (which is registered) but my MIL is adamant that she won't go into a home so, until she is actually unsafe (not too far from that now), we can't make her.

We recently had her gas hob cut off, for example, as she had attempted to boil a plastic kettle on top of it. Fortunately a carer arrived and took control of the situation. An hour later (when I arrived) she had no idea why there was melted plastic on the bars of the cooker. We called a registered gas engineer in and had it cut off a day or two later. Didn't need to ask anyone and didn't ask her.

I think of it as leaving a child alone in the house e.g. you wouldn't allow a 6 year old to cook (except under supervision).

Lady - the sheer fact that she is not admitting to the incontinence and sitting in a urine soaked chair and cleaning herself up with toilet roll and leaving it around is fairly indicative that she may well be much worse than you realize.

My Mum is currently in hospital and will be there until a place is found in a nursing home as she is now not able to be at home. And this is with my very capable dad being at home.

My mum is in Ireland and there are already 90 people waiting for nursing home places in the hospital she is in so we are not holding our breath!

I know it is horrible to think of your mum being in a nursing home but she is obviously not coping at home so you may need to think about it more.

Hi,

We've had a similar situation with an elderly relative, though not my parents. She was very stubborn but much too confused to be able to look after herself, and SS were reluctant to help because when she saw them she was very lucid and articulate, and told them that everything was fine (eg told them she was cooking for herself, that she's organised to have a stair lift fitted etc even though she could barely walk and wasn't eating.) I think it was partially a pride thing.

She suffered from a bad urinary infection and was taken to hospital for treatment before being discharged to a old people's home with round the clock care from nurses etc. To come to the good bit of the story - after six weeks there she had improved so much she was unrecognisable. She was talkative and sociable, she was walking a little, listening to her music. Once the infection was cleared and she was eating properly and regularly (she had been incredibly dehydrated too) she was much more like her old self. She agreed to move into a different residential home with someone on call, cleaners and meal on wheels etc but more independent with her own front door. We also gave her the spiel about having a "housekeeper", "cleaner", and "cook" rather than "carer" or "nurse" (white lies serve a purpose). She's got a better quality of life than she's had in many many years.

Good luck for helping your Mum.

I find the hospital meetings not much use, the old person is usually assessed as being able to live independantly by the ot and they are shipped out as fast as the hospital can manage

part of the problem is that you see what your mum is like day to day, when she is assessed she will put on a show and manage to do things she never usually does

its so very hard, but you aren't alone, it seems sometimes like everyone except us has mums that drive about taking the grankids out and being helpful, whilst ours are old and worn down

someone said here once its like having an extra child at a point in your life when all you really need is an extra pair of hands

My concern is ( of course with no real knowledge and looking in from the outside ) that 80 is quite young and that the worst case scenarios being discussed may in fact not be appropriate .
It's just possible that she has an infection - which would make her seem confused ,increase any tendency to leak and fall - which ,if sorted ,could see a dramatic improvement .
Of course it won't mean a personality change and the appearance of a co operative person happy to accept care . But it might help .

If she is deemed as not having capacity they can make best interests decision around her future. If she has capacity it is more difficult. Would suggest you look at power of attorney too if you need to for care decisions in the future

While she is in hospital you need to ask for her mental capacity to be assessed and ask for a family meeting so you can raise your concerns to the drs and therapist and sw. Hope you get some help

I dont know, Lady, I do feel sorry for you.

But you need to think deep within yourself whether the reason why you dont want your mother living in a nursing home has more to do with you and your own emotions, rather than what is actually best for your mum.

At some point you need to face that fact that this is life, and this is how it goes. Your mother is 80, incontinent, possibly demented, has problems walking, and you dont want her in a nursing home, most likely because YOU are not ready for her to have entered this stage in her life.

Life sometimes deals cruel blows. This is one of them.

Thinking of you. Good luck.

Lady, can you tell us why having your mum move into a home is unthinkable?

Hi Lady. thinking about you.It is hard and you do have to be firm.Look after yourself.
I've been gettting my mum M&S meals for one which she is really enjoying-v easy and quick.
We found a good carer who has been brilliant- showers her and sees what she needs.it is possible.
You can't do it all-help is there.Age UK also are good.Good luck but keep coming back.

We did black economy with some of the people who she would leave in just left a brown envelope in the porch for them
We had to be really mean and tell them that they smelt of urine/BO whatever and here are the clothes go wash and change and let me helpit was awful
And now I can see my Mum denying her age and ability and doing stupid things, standing on the kitchen table to change a light bulb at 11 am when we are there at 12.30.
TBH my Mum and Dad should be years from the situation of needing carers but I think we need to have a chat now about what we each expect from the other. I feel awful saying this but in some ways my life was on hold with caring for the Grandmothers and while I would do it all over again without hesitation I find myself getting stressed and physically sick at the thought of doing it all over again for my parents and mil.

I'll PM you

Can I suggest you find a Qualified Carer?,having just gone down the same road with my mother who is 85 and had series of falls, she had a cleaner but , I felt it was at the stage now that she needs help dressing and showering, and she is slowly accepting the fact she needs help, and it is great peace of mind as i work full-time, and live 20 minutes away. The carer is brilliant and will do anything, she worked for our local council for 20 years, took early redundancy due to cut backs, and now goes private she is not to exspensive and worth her weight in gold and i feel she know what to do if Mum falls or needs medicine urgently, good luck and hope you get sorted with your Mum.