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.

How lucky your mum is to have such care from her daughters

Please don't apologise Pud, you have been so helpful, I don't mind how long your threads are, just look at mine! SS don't know we are looking at homes.

We didn't get to see doctor today either but mum seems to be so much better, she had us in stitches today. My sisters youngest son came too and she was calling him a film star [he is very good looking] Not sure if she is eating today, as she said she could go and get something from the fridge if no one brought her any food, I think she thought she was at home. The hospital chaplain came and she had a proper conversation with him, everything made sense, if you know what I mean. I also got a straw from the hospt. cafe and she drank a lot more of her bottle of Drench with the straw than from a sippy cup.

The lady across from mum who looked to be at deaths door yesterday, they couldn't rouse her from sleep - was sitting in chair, with make up on today - looking very sprightly. Amazing.

Thanks Fortyplus for your kind comment, much appreciated.

:) so glad you had a nice happy visit

Not good today. Mum was sitting out in a chair but didn't look as well as yesterday. She thought she was in a shop and asked me several times which bus we would have to get to go home. I must have told her half a dozen times she was in hospital but it didn't seem to register at all. I looked at her food chart and she had refused all meals yesterday and today although she did have a small piece of fruit cake and half a cup of tea while we were there.

I mentioned the confusion to a nurse on my way out and she said she would check her bowel movement chart?

Constipation can make confusion worse in the elderly.

Thanks Bob, that explains checking the chart then.

Surprising what makes confusion worse. Mum had a really bad day yesterday. She refused all food, meds, and drink. She would not let carers wash her or reposition her. She would not let them give her oral morphine to give her comfort and was trying to bite everything. I managed to get her to have a couple of sips of flavoured water. She has chewed her pull chord, bitten the end off her finger again and chewed a hole in the bumpers over the bed sides. She was little more settled today when I rang to see how she was.

Oh dear Pud, she sounds in a bad way, I hope she improves. You must be terribly upset.

I didn't go to hospital today as I am full of cold but my sister said doctor took her into a room and told her mum suffering from kidney failure and heart failure and they are trying to treat both but the treatments conflict with each other so its difficult. She said that they didn't think my sister and myself could cope with mum at home so asked my sister to think about care homes and then also suggested nursing homes. She said we would be put in contact with social worker - but don't know when this will happen. she also said mum is very down, and not eating or drinking very much and won't try to walk.

My sister said mum slept most of the time she was there only opening her eyes occasionally. I looked at her food diary yesterday and all she has had in the last 3 days is a couple of spoons of cornflakes at breakfast and thats about it. We try to encourage her to eat a biscuit or some fruit and are taking a sandwich in for her tea but they are usually just left. I did take her a tub of her favourite ice cream but she had one spoonful and my husband ended up with the rest.

We think a nursing home would be better for mum but is that up to the medical staff and social workers to agree on. Do we have any say at all where she goes or is it a case of there is a vacancy in this home so she will have to go there.

A woman my sister was talking to the other day said her mum had moved to a lovely home,[arranged by social services] and named the home, then yesterday we read in the local paper that a care worker at that home was being prosecuted for mistreating a 100 year old man who wanted to go to the toilet during the night!

My understanding is that they will offer you a choice of homes with vacancies, but I'm not sure if that's right - it might depend on the area.

It does sound like that's the right decision. Thinking of you all.

Poor you. A NH sounds like the right (only?) decision. I hope there is a vacancy in one you like.

When Mum went into a care home I was told to go and look round several homes by SS and the hospital. I went without appointments. I also looked them up on www.carehome.co.uk/care_search.cfm. I know they only put good recommendations on but if there are none it might tell you something. You can also access inspection reports from there.
The homes told me if they had a vacancy or a waiting list. Your Mum will have to be assessed as to whether she needs a NH or a CH.
Then you tell SS services where you would like your Mum to go, and hopefully they will agree (if funded). I imagine if your Mum can pay then it is easier. The manager of the home also comes to see your Mum to make sure they can meet her needs. Then I found that all went fairly smoothly as the home liaises with the hospital, SS and you. I just went and got Mum's room ready putting in her clothes and bits and pieces. I didn't have to arrange discharge, travel etc, but was kept informed. HTH

So sorry osky - it is such a sad and stressful time.

If you go on "age uk" website you can download a PDF of questions to ask when visiting care homes.

I will be going through this soon with MIL, don't think I can cope much longer.

Mum poorly today, only had 2 teaspoons yoghurt and sips of various drinks.

Thinking of you.

How is your Mum today osky?

Hi Pud, I didn't go today as I have been coughing and sneezing all day and feel like crap. I had to have a chest x-ray yesterday so I went to see mum although I probably shouldn't have spread my lurgy. My sister and her DH went today and she says mum is still much the same, food today 2 spoons of cornflakes this morning, nothing at lunch and nothing but sips of juice while they were there.

Its so awful and upsetting to see her just refusing food when it would give her a bit of strength, she says she is not hungry despite everyone telling her that she needs to eat to get better she just won't.

A couple of weeks ago we thought she was going to die and then she perked up, now she has gone downhill again and I keep expecting a phone call in the night. She must be incredibly strong she hasn't eaten as much in 6 weeks as a normal person would eat in one day.

I sometimes find myself feeling quite angry when I am on my own, because if only she would eat and drink a bit more then she would get stronger and feel better and we would have her for longer, as it is I am always expecting the worst whenever the phone rings. She doesn't know how much we worry about her.

I don't know if it helped you to be with your mum when she died, but you must have known it was going to happen or you wouldn't have gone to see her before they phoned you. I am not sure I want to be in that place.

It did help me osky. I did not want Mum to go on her own. It was not scary. The last 10 minutes of her life were so peaceful. She opened her eyes just before she went. I am sure she knew I was there, and I am sure she went to my Dad. All the carers came to say goodbye to her and held me while she went on her journey.

That sounds so perfect, I know from your past posts that you have had many difficult times with your mum due to her condition and yet you never abandoned her and you were with at the last moments of her life, it must be a comfort to you that you did everything you could even when it was hard and she didn't know you.

It sounds like the people at the nursing home were very caring and if you rang and asked to speak to someone there about your mum they would welcome you, it must happen with lots of people so they won't think it odd.

My friend was holding her sisters hand when she died. They knew she was going and her sisters daughter called her and asked if she wanted to say goodbye, my friend went and she said it was lovely, they were playing her favourite music and there were candles and soft lights but she said she didn't want to be there at the end and was just about to go when her niece said just hold her hand and say goodbye, so she did and her sister opened her eyes and smiled at her and then died.

My friend said she didn't want this to happen but in a way she is glad she was there although its taking her a long time to get over it, if thats the right expression.

My dad died in his sleep in hospital, I was the last one of the family to see him alive and will always remember that last visit. I took him a chocolate eclair, which he enjoyed. I have never been able to buy anyone a chocolate eclair since though.

Mum confused again, wanting to go home - however - first visit from hospital social worker today. It all looks to be positive she says medics saying mum needs nursing care and she is going to do whatever it is she has to do - says mum should be getting continuing care as she is only being moved out of hospital so she is in more homely environment but still getting the same level of care as she would in hospital. She did say this would not be means tested and we had not to worry about paying anything.

She did her assessment with mum involved as well, but mum basically said if we thought it was ok then it would be ok with her. SW did ask us if we thought we could manage at home but I was definite in saying that I could not and my sister agreed. If she was mobile and continent then it may be different but as she is now it would be too much.

Its hard because mum really wants to go home but she agreed that a nursing home would be better than hospital.

someone is going to get in touch with us with a list of suitable homes we can have a look at so we don't have to accept the first one if we don't think it suitable. I told her we didn't want a BUPA home as my dad was in one for respite care and it was awful. Lovely on the ground floor but stunk upstairs, the carpet stuck to your feet, the lift didn't work, the staff were few and far between and the room he had was dismal. He couldn't wait to get out of there and I said I would never ever be put in a place like that.

One question my sister did ask me, after the SW had gone that someone may be able to help with. If mum is in nursing care then would she be left in a room on her own all the time, isolated or would they get her out of bed and move her in a wheelchair so she could be with other people. In hospital there is something going on all the time and lots of people around.

So we will just have to wait and see what comes next. I nearly didn't go today as I am still ill myself but glad I did in the ned.

One question my sister did ask me, after the SW had gone that someone may be able to help with. If mum is in nursing care then would she be left in a room on her own all the time, isolated or would they get her out of bed and move her in a wheelchair so she could be with other people.
My Mum was taken out of bed most days into the lounge. Towards the end they had a special bed chair that they put her in, which meant they only had to hoist her from bed to bed chair and not into wheel chair and then another chair. They then pushed the bed chair to the lounge for a couple of hours so that Mum could see people and join in activities. There were several residents like this. Also they had an open door policy so that anyone in bed had their door open so people passing could wave and chat to them.
Have a look round the homes (don't make an appointment). If there are visitors there have a chat with them if you can. Get the check list off Age uk web site.

Thanks Pud, I remember you saying your mum had a birthday party. The home she was in sounds lovely, do you know which company ran it or was it a private one. The SW told us to use the Age UK site to look at what questions to ask.

Have you managed to speak to anyone yet. I was thinking there are bereavment councellers or perhaps the vicar who will be conducting the funeral will want to talk about your mum.

I spoke to my daughter in law and also my brother in law today. I think that because, although they loved Mum, they were not feeling as close and could listen. Sister and I sorted out what we want said at funeral today. Funeral director coming tomorrow.
The NH was run by Country Court Care as was the CH she was in before that. countrycourtcare.co/
They are in different parts of country

Thats good that you could talk to them if not your sister or son, perhaps in time they will want to talk too. I hope everything goes ok at the funeral. Are you going to say anything.

We don't have any country court care homes in our part of the north.