advice please - 96 yr. old mother - long.

[oskybosky4]

my sister and I care for our DM age 96. We both live within 5 minutes of her so visit 4 to 6 times a day. There are no other carers. Ny sister and I are both in our 60s, both with illness problems of our own. I have inflammatory arthritis condition and my sister has asthma.

she has been forgetful for some time but only such as repeated asking what day it is that type of thing.

last Friday she told me there was a man under her bed. There wasn't, all the windows are locked and anyone would have to get in through two locked doors. It didn't matter how much we reassured her though the man was real to her.

Saturday my sister went on quite early, mum was half way up the path in just a nightie. She never goes out. It was lucky my sister went when she did or goodness knows how far mum would have got. she claimed she was still seeing men in the house. Sunday she was asking me when her dad was coming home and she was telling me my sister had been crying because she had seen my dad, [she wasn't and hadn't].

Mum was very frightened about these men she thinks and sees are in the house and she clearly did not believe us when we said there was no one there.

Monday, called the doctors, the nurse came who can prescribe, examined her and blood press. temp and pulse all fine. She tested a urine sample and said there were leukocytes ? and she had an infection. apparently urine tract infections can cause hallucinations. She prescribed antibiotics but did say to call if she didn't seem to be getting better.

Tuesday much better. Back to normal we thought.

Today, fine this morning, lunchtime went into meltdown with my sister, saying the man was in the house again, she couldn't live there any more, she wants to go back to the village where she grew up even though we tell her there is no one there she knows now, she has outlived them all. My sister is so upset. I am going on this afternoon and teatime.

She has never been assessed, but the nurse did ask some questions on Monday, such as do you know your address and what season is it, she didn't know either.

We don't know what to do next. We have not discussed homes or even looked at any. I did see someone at Gateway to care and got a load of leaflets a few months ago but then she seemed to get so much better we didn't do anything about it.

Can anyone advise what the next step is, is the doctor, is it social services. She needs some sort of nursing care rather than just residential as she has to take tablets, doesn't eat unless you are with her, doesn't cook or even make a drink. won't go out, although she says she will, you get everything ready, the wheelchair, car etc but then at the last minute says she doesn't feel well and won't go.

sorry to be so long winded.

Sorry to hear your mum is in hospital, but it is the best place to fight for appropriate care for her.

As DowntonTrout says, insist on talking to the social worker and do not let them discharge her. Make it very clear that she has had multiple falls and you are now 'unable to keep her safe'.

As Downton and CMOT say you have to insist that she is not safe at home. I forgot about that. I know one SW wanted me to have her back home, but there was no way I could even lift her after her being in hospital.

I have nothing to add other than pass on my best wishes. It must be tough. There is nothing wrong with being clear with both the hospital and social workers that you cannot continue to care for your mother at home. You have already done your best.

Thanks everyone. Mum seemed to be quite comfortable today, she is on a drip and they are keeping her in bed. She didn't know if she had seen a doctor or not but I suppose she would have, they have moved her from medical assessment ward now.

I spoke to staff nurse, a really lovely young man, and asked him what was happening with mum and if she would be able to see a social worker. He told us they need to get her medically sorted out first then the occupational therapist will see her and OT will contact social worker, he said normally she would be seen by SW within 48 hours. SW will speak to us as well. I wanted to make sure that she wouldn't be just discharged and sent home if she wasn't able to mobilise herself and he assured me this wouldn't happen but he sort of indicated it might be a couple of weeks at least anyway.

I am sure the fluids she is receiving are doing her good she didn't seem half so confused today she was even asking us to bring some tripe in [used to be one of her favourites] needless to say we won't be even if I knew where to buy it.

more best wishes from here too

ahh tripe :)

osky this is exactly what happened with my Mum the first time she went into hospital a few years ago. Then again last May when changing to a NH. They will not send her out. Now you will be able to get some sleep and get yourself fit.

How are you doing pudcat? (Sorry to hi-jack!)

we are going to 'drop in' on a care home tomorrow morning to see if we can have a look around. Besides the obvious, cleanliness etc what other not so obvious things should we be looking for. Sorry to need all this hand holding, feel a bit of a ninny but want to get things right.

Look for how the residents are looking. Is their hair done? Do their clothes look like they fit ? Are they engaged in any activities? Where are the staff? Are they interacting with residents?

Age uk has a check list
www.ageuk.org.uk/Documents/EN-GB/Information-guides/AgeUKIL5_care_home_checklist_inf.pdf?dtrk=true

SS gave me a list of things to look for as well.

Downton I am OK txs. I posted on the main thread today.

Age uk has a check list
www.ageuk.org.uk/Documents/EN-GB/Information-guides/AgeUKIL5_care_home_checklist_inf.pdf?dtrk=true

I'd also look to see if residents seem to have some choice of where to sit - quiet and noisy areas. Is seating set up to encourage interaction or are chairs round the edge of the room. If there is a garden, can residents go out independantly, or is it 'pretty but not secure'.

Does the staff member who takes you round genuinely greet residents who you happen to meet as you go round?

Look at the loos - do they smell, or have they been kept clean and tidy.

Thank you so much, thats great advice. I will also look on Age uk site. It wouldn't have occured to me to look at residents clothes to see if they fit or if their hair was done. I did ring the home we want to go and look at and I was told to just go anytime for a look around and a chat. She said there were no vacancies at the moment but we could go on a waiting list if we thought it was suitable. I did ask if they take council funded residents, which they do but there would probably be have to be a 3rd party top up as the fees start at about £600 pw. Not too sure what this means.

Mum looking quite well today, not half so confused, she seems to be liking it in hospital and says everyone is very nice. I asked the lady who brought the tea round if mum was eating, we had asked mum but she couldn't remember. She said she was but because her hands shake so much she really needs help to get her food to her mouth.

One small dilemma that me and my sister can't agree on. Mum has money in the bank in a joint account with my sister. Thats not a problem, this was just done because everytime you rang to the bank about something they could only speak to mum, or needed her to go to the bank in person, so they suggested the joint account thing. my sister knew there was quite a bit of cash in the house
and as mums not there just now she went and collected it last night from all the hiding places.

When the social services do the financial assesment on mum I don't think we should tell them about the cash, as we could use this towards any third party top up fees but my sister says we should tell them. A moral dilemma. Mum has not exactly been a drain on the NHS or the benefits system she hasn't claimed attendance allowance, hardly ever seen the doctor or been in hospital in her life, apart from giving birth, so I am not in favour of her declaring it as it will take her just over the 23,500 limit and so will have to pay the full cost without any funding.

My sister says its cheating the benefits system, which it is

I remember looking at a booklet - maybe from council or hospital with all local homes in it with their star rating (CQC maybe) -it was v useful.
good luck with the visit.

Glad your Mum is doing well. The third party top up means you or your sister would have to agree and sign to say you will be responsible for the difference between what SS pay and the actual cost. I don't quite know how much SS pay, I'm waiting to hear about that as Mum is going to get 12 weeks. Think it will depend on the area. I have a feeling I have seen £450/£500 mentioned down here in the past but could be wrong.

Re the cash I hesitate to mention this but I thnk I saw on a forum somewhere someone outlining similar circumstances and someone else suggesting they take out a funeral plan as that is a legitimate expense. Sorry if I upset you mentioning it and I'm not 100% sure that's correct but thought I would mention it.

Assuming it's residential and not nursing care then say the gross fee was 700pw and the council would pay up to eg 500pw then the top up would be 200, but there would also be a means tested contribution from your mum's income and liquid capital. I assume she doesn't own her house. So the councils actual contribution would be the difference between the 500 and her assessed contribution.
I've used 500 for ease, at our council the amount we will pay up to for residential is 516.11.
A prepaid funeral plan would be an allowable expense for our council, but I think it's discretionary so I'd check if that's what you decide to do.
I'm sure plenty of hiding of assets goes on and we don't know- but if I were you I'd spend the surplus cash on things she needs (nice chair for the home for example) and always keep receipts!

And you can read cqc reports online a bit like ofsted.

Wynken, not upset about funeral plan, mum had put the cash on one side for funeral anyway as she didn't want us to borrow any money to pay for a funeral while waiting for probate. She and my dad has saved cash to pay for funerals as they didn't want funeral director to have to wait for his money. Dad died 13 years ago. She paid for his funeral straight away with money she had saved.

So using some of the cash for funeral plan seems like a good idea.

Ashtrayheart, another good idea. We had thought of some new things for her until somone said, maybe on another thread, that when they are in a home they don't always get their own clothes back from the laundry.

It would also be nice to have some cash so we could take her out, if she was fit to go, me and my sister don't have heaps of spare cash for treats like this. A nice chair is a good idea also. Made a note about keeping receipts. I have to do this for my business anyway so this isn't a problem.

yy to name tags in clothes

Your Mum will pay all but £23.90 from her pension to the CH. SS will pay their set amount and any top up fees have to be paid by someone other than your Mum. I worked it out that I could only afford 6 weeks of top up fees for my Mum, so we had to have a place which did not ask for them.

SS wanted to see Mum's bank account and any other assets she had eg Premium bonds. I was told to keep receipts for anything Mum spent out of her meagre savings.

I ordered the Cash name tapes for Mum and it was just like having children at school again.

Your sister is right, obviously, but if it is there I would be tempted to keep cash aside to help with things such as decent glasses or dentures, Tenalady, scope for buying Grandchildren christmas presents, trips out if she is able, suitable clothes, a regular hairdressing appointment, a comfortable chair, treats such as flowers or pot plants, snacks that she enjoys eating, and so on. There wont be much to spend money on, and old age in itself is not great, so small things matter. The relatives of one resident of the care home my mother was in, had asked if they could put a bird table in the garden outside her window.

Thanks everyone, i agree with needmoresleep, it would be useful to have some money on one side for the things you mentioned. Mum would be horrified to know how much care home fees are, she is way in the past about how much things cost, and if you tell her a nice bunch of flowers is about £4 [cheapest] she says I'm not spending that sort of money on flowers, same with shoes and clothes.

She does need some new clothes as she has lost so much weight in the last 18 months all her clothes are miles too big for her and as her feet are so swollen none of her outdoor shoes fit. She could do with a new lightweight wheelchair - the one she has is too heavy for me to lift into the car. She also needs a new chair as her own has had so many 'accidents' on it, its hard to keep it from smelling. New glasses as well and possibly a hearing aid.

i am inclined to think we should use some of this cash to get all these things which i think are essential anyway but we will keep all the receipts.

The home we looked at this morning was lovely, my husband was ready to move in! I did ask about the clothing issue and was told that if there were stitched in name tags with room number and name then more than likely they would end up with the right person, but obviously some people don't have name tags so they can get mixed up. They have a hairdresser, quiet room, smoking room, tv rooms, dining room and resteraunt, secure patio and garden, cinema room, activies room and activity co-ordinator. 24 hours nurse. They do nursing, residential and dementia.

We saw a lady resident there who my sister knew and she had a word with her. We were shown the superior rooms and the ordinary rooms, not much difference apart from one having a shower and a view and the other not.

No vacancies though, and a waiting list, they do take LA funded people but there is usually a top of fee as well. it all depends on what this is and if we can afford it between us. Will have to wait for SS assessment and means test for this also if she would need any nursing care or not.

We will go and look at some more of course to compare and some that don't need a top up fee. This one seems just perfect though and in the right area.

That one sounds lovely Osky. The best ones usually have waiting lists. Just a thought. Her room will probably have a good chair in it.

Your mother is generally allowed to make small cash gifts. For IHT purposes these can be up to £3000 a year. I dont know what SS allow, however unless the cash your sister found is significant, I assume your mother might be happy to gift it to both of you. (Seasonal gifts is part of the IHT jargon.) You then set it aside for small treats - a nice soap or perhaps a good moisturiser - which will make life more pleasant.

On wheel chairs, I found the home had a good stock of portable ones that could be borrowed for hospital appointments etc.
Walking sticks were funny. Everyone seemed to randomly grab the nearest stick after lunch so no one ever had the right size. My mum seemed to end up with three or four in her room. The physio was pretty despairing as none were right.
I hope a room comes up soon.