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.

Physio's had mum up and walking a few steps with a frame today. She is still on a drip and we had a word with Doc. who said her kidneys were showing slight improvement and she would be having another blood test tomorrow. She also did a memory test while we were there. mum didn't get one answer right. Mum also asked what time we would be going home and which bus would we have to get.

I think I have been reading too much, I was really worried last night. So many people seem to have to fight social services to get what their loved one needs in the way of safe care in their old age.

My mum has outlived all her friends and family apart from us and our kids so if we hadn't found her on the floor, unable to get up she could well have been one of those people who are found when its too late. What on earth do people do who don't have anyone. Mum isn't capable of dealing with social services on her own especially if you have to fill in forms, answer questions, prove this, that or the other. She can't even remember how to use the telephone.

I don't want to have to fight social services to get mum the right sort of care thats right for her and acceptable for us. I will do, if I have to but why should we have to.

It would be impossible for her to self fund a care home her money would run out in less than a year. We don't have much in the way of savings and not much income either, we couldn't afford thousands of pounds a month for care home.

My mum was an auxilliary nurse in the war and my dad was a paratrooper and war hero. Not relevant in this day and age where budgets and finance seem to take precedence over the dignity and care of people who can no longer manage on their own.

Sorry for the rant, I will have to stop reading and scaring myself.

Osky I'm glad she's doing a little better.
You shouldn't have to fight to get the right care. Social services do have to find the care that is needed but that also can be paid for within their budgets. They will do an assessment and her case will be taken to panel and the level of care needed will be decided- this can be challenged if you disagree with it but mostly this doesn't cause an issue as the homes themselves do an assessment and if they say they can't meet a person's needs from that assessment that pushes ss to alternatives anyway.
If there are homes available that can meet her needs within council costs then there will be a top up payable if you choose a more expensive home. She won't be self funding if she has under £23250 - she will pay a client contribution leaving her with a personal allowance of £23.90 pw(possibly up to £5.75 pw more depending on her income).
I'm a financial assessment officer for a county council so pm me if you want any advice i would be happy to help.

you won't have to fight op - we were in a similar position with my granddad once the wheels are set in motion everyone should be helpful.it is a v stressful time though.x

SS are very helpful. The SW looking after my Mum now was brilliant when I had to get her into a NH. I rang her in floods of tears and she told me what to do, left a list in Mum's locker at hospital and sorted all the funding out as the NH I chose was in a different authority to the CH. She liased with the hospital, NH Mangeress and me and it all went smoothly.

Thanks everyone I feel a bit better about it now. I think I had read too many horror stories of peoples experiences.

Mum taken off the drip today but my sister says she seems more confused now and she had been telling nurses she was going home today. As far as we know she hasn't had the physios today.

We will have to see how things go next week. Occupational therapy havn't seen her yet as far as we know nor the hospital social worker.

Sister now worried they will just send her home in a couple of days.

one day at a time osky - every day will bring up something different.

Upsetting visit today, mum very very confused. She thought she was in the pub, she wanted to come home with us, seeing kittens and dogs on the ward. The drip has been put back in, but not running while we were there though. She thought my dad was at home and she said he would be fed up being on his own. On the nurses notes it says Alzheimers.

Hope they have tested for a UTI as well osky. My Mum sees animals when she has a UTI. A horse came to lunch the other week. Hope she gets the help she needs.

Pudcat, a horse coming to lunch made me smile. Mum seemed better again today, the only 'odd' thing she said was when she asked when my dad was coming home. They have taken out the drip again but are monitoring her fluid intake, but goodness knows how, she only has the smallest sips of drink, either water, lucozade or drench. The change of shift nurses came round to be brought up to date, about 6 of them round her bed and she thought they were a choir come to sing.

My sister is talking about her coming home rather than a care home now but I told her I don't think I can manage and I don't think she would be safe either. I suppose we will have to see what level of care the Social worker and health care staff thinks she will need and take it from there. Not that we have got that far yet, she has only seen physio so far.

Osky, you will have to be firm with your sister and not give in. If your mum is falling she is not safe.

The nurses will measure how much fluid has been taken from the drinks each obs time. They will also measure urine output.

Thanks pud, how is your mum.

She was in quite a good mood yesterday but she could not remember the lovey birthday she had had on Friday. The NH made her a lovely cake and we had a lovely time.

Thats good that she was in a good mood just a shame she couldn't remember her birthday.
My sister went to see our mum today and she thought she was in good form, but back on the drip again. Would this be because she isn't drinking enough do you think.

Yes, if she won't drink enough they will have put the drip back up to supplement her fluid intake

Putting her back on the drip also means that that they have been monitoring her fluid intake.

Thanks ladies. She is on drip today and has a catheter in. i assume this is so they can accurately monitor input and output. Tea lady nurse tried to get to have half a cup of juice this afternoon but she would only have about half an inch of it. She was also in bed, probably because of catheter. She wants to come home but knows that she can't until she is a bit better. just have to see what next few days brings.

mum pretty much the same today, only my sister says she sounded a little breathless as well. She is also repeatedly asking to come home.

This is upsetting my sister a lot and she thinks I am harsh in not being upset by it too. She is in the best place for now - until she improves and starts drinking.

Of course i am worried and concerned about mum but its no good getting upset and wanting to bring her home.

If your mum has dementia, then asking to 'go home' can also mean 'I'm scared' or 'I don't understand' or 'I don't feel well' rather than wanting to be actually at home. But right now, hospital is where your mum needs to be, and as you say, no point in getting upset about it.

Good point CMOT. My allotment neighbour is in his 80s and cares for his wife who has dementia, in their own home, with great patience and fortitude. She regularly packs a bag and says she wants to go home. She means her parents' farmhouse in Ireland, she's probably also expecting to see them and all her siblings when she gets there. "Home " is often an emotional state of mind, not the last place of residence.

My Mum is always saying she wants to go home, but the home she is thinking of is her childhood home. She wants to see her Mum. Tell your sister what we have said on here.

Thank you so much ladies, I was feeling that I was somehow letting my sister down by not crying with her but its really not the time for tears, there is so many practical things need to be thought about - like when are we going to see a SW, how is she going to manage at home or in a home, is she ever going to drink enough for her to come off the drip and show some improvement. One good thing when she is getting enough fluids as she is with the drip then she is not so confused or hallucinating.

I hadn't thought of 'home' in the way you describe, i was just thinking she wanted her own home.

Mum still in hospital - week 3 now. Still on a drip and with a catheter.

She won't walk, physios get her to stand up but that takes so much effort she says she feels sick and doesn't want to do anymore.

She barely eats or drinks. She says she doesn't feel hungry or thirsty.

I think the nurses help her with her food but its a bit of a battle.

On the positive side she doesn't seem half as confused now and she is much more 'with it' - although fed up with the monontony. Still keeps asking what day it is though.

Her legs, feet and hands look quite swollen, and her hands are shaky when she tries to drink.

I had a word with physio, and asked what would happen if they couldn't get her to walk. He indicated that she would probably go to small local hospital for rehab and hopefully they would be able to get her going.

We havn't seen or spoken to a doctor and mum doesn't know if she has seen one or not, though I suppose she will have.

I just don't know what is going to happen or how long she is going to be in hospital. No sign of hospital Social Worker.

Its such a worry, we feel quite stuck about what we ought to be doing about care homes etc.

Ok when my Mum became ill 7 years ago and was in hospital, she couldn't walk. She was sent to a small local hospital to the rehab ward. It was brilliant. Didn't work for my Mum as she ended up in a care home afterwards. But the hospital your Mum is in now will not send her out. She may have to wait a while until a bed becomes available on rehab. Can you ask the ward sister for an appointment with the dr? I did this the last 3 times Mum was in and they were good at seeing me. Mum did not see a social worker until she was on rehab, and then they were very helpful. And again when moving into a NH 7 years later they have been brilliant.

Oh thank you Pud, you have been so helpful. Its difficult isn't it

Yes it is difficult. The physical side of looking after my Mum has got better , but the mental stress is still there. I sometimes dread going to see Mum because I don't know how she is going to be and I get so upset if she is very confused or saying she is frightened of dying. I don't want her to be be in pain or scared or unhappy. I know that she is going to die and I really would like it to be sooner rather than later, but I want her her to be peaceful when it happens.

About the care homes - there is no harm in going and looking at as many as you can and finding out about their charges etc. Can't remember if your Mum has her own funds or not but again worth finding out what to do if she has.