Anyone else had experience of trying to sort care out from a distance?

[Roseylee]

Mum officially got her diagnosis of Alzheimer's a week ago, but things have been deteriorating for some time, and getting rapidly worse. She lives alone, is 81 and my sister and I live 70 miles away. She has been assessed by social worker and her care went out to tender, and an agency was appointed this week. Although she has had free care since coming out of hospital for 6 weeks, this is now the means tested, official care going forward. Last Friday she missed her hair appointment (unheard of) because she was fast asleep in the late morning, and today the carers cannot get her to answer door because she had been asleep most of the day. They nearly had to break in before she came to the door looking disorientated, and not even dressed. It is very worrying. She is very thin and frail and only weighs about 6 stone because she doesn't eat. Carers have said they will try to arrange a home visit by GP tomorrow. How do we know when to move her to a care home? Does GP suggest it? Do carers suggest it? SS seem to have washed their hands now that a care agency is in place, and we visit about once every 2 weeks so are not on hand to get a full picture. Do we go for a care home near one of us, or near where Mum is now, and near familiar things? It just feels like being dropped into a big black hole to find our own way through this, which isn't easy not knowing the area or LA. Is there one point of call who can oversee it all, and guide us through? Any advice gratefully received.

 

[Solihull]

Hi Roseylee, I had a similar experience although only ten miles away. Mom, 91, was not eating, drinking or generally looking after her self, just sleeping. She too weighed about 6.00 stone or so I thought! She started fainting and was admitted to hospital,weighing less than 6.00 stone. Three months down the line, she is now in a care home near to me and eats, drinks, chats to others and after a couple of restless weeks of settling in, seems contented although her dementia is obvious.
This move was my decision as it will be yours if your mom is self funding. The only advice I was given by SS was that she would need a care home not a nursing home, the rest was up to me if she did not return to her own house. After much soul searching I realised she could not go back there.
Really she is unaware that she has moved away from her old area but it is so much easier for me and I can visit her whenever I want. My visits are now enjoyable as the worries have been taken over after many years of struggling along. Perhaps you could start looking at care homes sooner rather than later and and talk to the staff there. They are VERY helpful. Good luck, Sue x

 

[Roseylee]

Thanks Sue. I think you are right and it will make the time we have left with Mum so much more enjoyable. Thanks for your support.

 

[Pickles53]

Hi Roseylee. We were in a very similar situation to yours at the beginning of this year and did our best to help mum with carers coming in, Carelink alarm systems etc. etc. We did have a key safe fitted, cost about £80 total, which meant the carers could get in if mum didn't come to the door. This turned about to be a godsend when she had fallen in the bathroom and wouldn't have been able to get up; otherwise the paramedics would have been called and would have had to break the door down. She was not eating properly even then and refused meals on meals.

Things were going downhill and we had started looking for a care home near us; mum was very lonely and miserable at home as she couldn't go out at all and had almost no visitors except me. After the fall she never recovered her mobility at all so we arranged the move sooner than planned. Although she never got any better, and also ate less and less, it was for the best. Her care home was lovely, we could see her every day, and we were no longer anxious about her being at home alone.

She died just over two weeks ago. I don't at all regret the decision to move her.

 

[Roseylee]

Hi Pickles, firstly please accept my sincere condolences on the sad loss of your Mum. I'm so pleased you were able to share your experience with me. Things have moved on for us in just one day. Mum spent night being Ill, and an ambulance was called this morning. she is now back in hospital, dehydrated, confused and poorly, not to mention thin. We only saw her a week ago. Seems (reading between lines) that carers accept the fact that she is tired and wants to sleep all the time (not like her), that she says she will get dressed once the carers have been (she doesn't), and has already had a meal (she hasn't). Quite how they think someone with Alzheimer's can make all these decisions when it has been clearly documented that she is unable, is beyond me. At least she is in hospital for now so I know she is safe.

 

[Pickles53]

Thank you for those kind words Roseylee. I miss mum, but it's hard to feel sad for her as in the last few weeks of life she was barely with us and sleeping almost all the time. I felt that she just didn't want to be here anymore.

There does come a time when safety has to be the priority, and the best thing about mum bring in a care home was just that. 24 hours a day there was someone on duty and the GP did a regular 'ward round' so they were on top of things as much as it was possible. Mum was prescribed Fortisip drinks as she was eating so little which did help a bit. The other best thing was just having her nearby, which made organising all the appointments etc a million times easier.

It is hard to plan as it seemed to us that the illness was always one step ahead of us and things could change so quickly. We kept hoping that mum would improve a bit with each new thing that was tried but nothing really stopped her decline. I'm sure you will do this anyway, but please don't let the hospital discharge your mum without a full assessment taking place including an assessment for CHC funding.

 

[little shettie]

I can identify with what youre going through. I have managed my mum (and dad when he was alive) from a distance. Mum had carers four times a day. I use the word 'carers' loosely as they were absolutely useless! Average age 18, not a clue how to deal with mum and like yours, she would lie in bed, refuse to get up, eat drink take her meds etc etc. We had a key pad installed so the carers could letg themselves in, but they would come in, write in the book mum had refused all help and leave! bearing in mind each visit for for an hour, they'd be there barely 5 minutes! Mum was losing weight, not showering she looked awful. I began staying over with her several nights a week but it was taking its toll on me and hubby. I felt mum was not bad enough to into care so we took the decision to sell mums house and we all moved into a bungalow close to where we live. That was in June. Mum has deteriorated further, we thought she might with the change of moving house etc and shes still not over losing dad last year, but shes put on weight, showers daily and takes her meds. I can also rest easy knowing shes safe. I acknowledge that not everyone can do what we have done or want to do it. Its very difficult at times. But what I would say to you is, now your mums in hospital absolute insist she is not let home, you must be firm and demand things otherwise as I found to my detriment, ss and whoever else youre dealing with, will just let her back home as that's the easy and cheaper option for them! Its all down to money and sadly our elderly folk are suffering. Care home may be the best option for mum, as others have also said. You know your mum and whats best. Good luck, its a difficult time. x

 

[Neph]

I was in your situation just over three years ago,I live about 15 miles from what was the family home. For a while we had carers going in but mum ended up in hospital and I just decided enough was enough and moved her to a care home just up the road from me, for a while she improved and loved the company of others, she never really asked for home.I would seriously consider this for your mum and your peace of mind.

 

[Roseylee]

Thank you everyone for your kind words of encouragement. Mum had already received free care for 6 weeks and was only 1 week into a means tested new care package which we had not been consulted over, nor knew about. Apparently they had phoned Mum to see if she was happy with a change of care!!! Aargh! How they expect an elderly lady with Alzheimer's to make these decisions I really don't know. Due to the geography of the situation we were supposed to be kept informed of any changes, it was well documented, but appears to have been completely ignored. Judging by the new carers notes in her home they have just popped in for lovely chats rather than done anything useful like get her dressed, washed or fed, completely taking her word for it that she has 'already eaten' or will 'get dressed later'. Incredible. Sadly now Mum is still in hospital and the rigmarole of a formal complaint looms, as if we didn't have enough to contend with. still if you don't make a stand nothing every improves for the next person. frustration doesn't come near.

 

[Roseylee]

Moving a loved one to a care home under a different LA

Hi, now mum is stable in hospital we are going to try and seize the opportunity to move her into a care come. She is simply not coping at home, carers are worse than useless, and we all need peace of mind that Mum is safe. Mum is a "part funder" for the existing carers where she lives at present, and we are told that SS will assess Mum in hospital to see what she can and can't do, but this in itself is worrying as Mum is a brilliant actress when needs be.....But we want to move her to a care home near me, 70 miles away and under a different LA. How does this work? Does anyone have experience, and how long does it take? Certainly don't want her discharged from hospital until we have got her going straight into a care home that we have chosen, and haven't been to see any yet.