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.

Its extremely stressful I agree, mum looks at us like a child sometimes, just wanting to be reassured and taken home and there doesn't seem to be anything we can do to make it any better for her. My dad was ill for years and in and out of hospital, before he died and when he did it was a blessing that he was out of pain, but his mind never went - in the end his heart gave up and he died in his sleep

The lady in the next bed to mum, is a couple of years younger, but in much the same sort of situation. Her daughter was telling me that her mum lives on her own, but has carers. She too has had a lot of UTI's and she has been fighting the carers. She too won't eat and only has small sips of drink, I havn't seen her out of bed in the last 2 weeks and her daughter says her mum has 'given up', she just wants to go.

Old age can be very cruel.

Mum looked very poorly today. Curled up, rattling sound in her throat, a bit of a cough, said she felt too warm. I sat with her for a while then went off to find a nurse. Spoke to staff nurse and asked what was wrong with mum. Was told 'nothing' she just won't eat or drink or sit in a chair, even though she would be better sat in a chair. ' She said if maybe one of us could come at mealtimes then we may be able to get her to eat. I told her that we couldn't get her to eat at home in the week before she came in. I asked what would happen next then, and the staff nurse said they were discussing it this morning and there would be a discussion with the doctor and possibly my sister and myself.

I said surely you won't be discharging her like this and she said no they couldn't while she was on a drip. Mum had mentioned she would like some tripe last week so I asked the SN if I could bring some in tomorrow and she said of course, we can see if she will eat that then we will know there is nothing wrong with her stomach. The nurse also said it was as if mum had given up.

I am going to take it but I know she won't eat it.

I also asked if mum did have Alzheimers and she said its not in her notes and they wouldn't be able to diagnose this on the ward. I have seen it written on the nurses notes by mums bed though.

Surely the nurses will have come across this refusing to eat and drink before in the very elderly but I didn't get the impression of any reassurance by the nurse - just, well if she won't co-operate with us then there is nothing we can do. Mums only not eating or drinking because she doesn't feel hungry or thirsty, at least thats what she is telling us.

I think she is on the way out but we will have to see what the next few days brings.

Hi Osky. The nurse may not feel empowered to tell you what she Thinks for various Reasons: she could be wrong, they haven t had that meeting yet and nurses are not empowered to make guesses at diagnoses or disclose them. Also every health care Professional knows it can be very difficult to estimate someone's prognosis. Your mum might rally round, but to an extent the hospital staff will be like every one, not able to say for sure how it will go. I hope the meeting is helpful and it definitely sounds like she is not any where near ready to be discharged.

hi was wondering where you were.
we had the no eating drinking problem with my gd - hidden home on here was a great help with suggestions.unfortunately it seems a lot of elderly patients are like this i'm not sure if it is part of gradually shutting down .... my gd passed away peacefully in his sleep at almost 88 yo not that long after being like this but we did everything we could to make him eat and drink tiny amounts.

sending best wishes for you and your mum x

Osky ask to be at the meeting, or for an appointment to see your Mum's dr or find out what time they do their rounds and be there. My Mum would not eat or drink in hospital so I went every day at lunch time to try. I could spend more time than the nurses. Mum was like this for 3 months until all infection had been treated and she was able to be looked after in a NH. This was last May and we thought she had 1 month left at the most - she is still here. How I do not know. She has weeks of not eating and then a couple of days eating. And so on.

I know I asked to see a dr on one ward, on another they asked to see me and I made sure that I was there for rounds on the last ward.
They will not send your Mum out like this. They will get more assessments done and liaise with SS.

The nurses at the weekends are probably not the ones who are caring for your Mum in the week, and cannot say anything without the dr's sayso.

Can you take some drinks in for your Mum that she really likes. I used to take in Lipton's iced tea for Mum. The nurses cannot force your Mum to eat and drink - that is why she is on a drip. I hope your Mum does try the tripe, even if it is only a little drop of the liquid. Also what about a little bit of ice cream.

thanks for your replies. We have been taking in all the drinks she likes, she used to like to drink water, so I take a fresh bottle of water with the sports top to drink out of as this is easier than the tumbler provided on the ward. Also we have tried drench, cartons of juice, tea, lucozade all of which she really enjoyed before.

I have been taking 2 small sandwiches with the crusts cut off, or her favourite sorts of sweet things, fruit she likes, pork pie, she just says she will have them tomorrow and refuses to even try a little bit. I only take small portions as she had stopped eating a lot of food before she became ill but at least she was eating and drinking, now she just says shes not hungry or thirsty. The other day the sandwich they gave her for lunch was still on the table, with just one bite out of it. I tried my best to encourage her to have something which I had brought her but she just didn't want it. The sandwich she left looked really awful though, fatty ham and no butter on the bread.

My sister and I are both going tomorrow and we are going to ask if we can have a meeting with her doctor, if not tomorrow then later in the week.

The ward is locked and they don't like people going in when its not visiting but as the staff nurse suggested someone goes at mealtimes it might be worth trying.

Her hair looks dirty, its pure white when its clean but now looks a very dull grey. Does anyone know of a good dry shampoo.

I will try the ice cream too, she really likes our local ice cream van, if I put a portion in the freezer until it was really hard then by the time we got to the hospital it might be soft enough to eat without being totally melted. They sell ices at the hospital shop but only magnums, cornettos and the like which she isn't keen on.

She was saying today the hospital is a dump [its not] she is just so fed up of it.

We do take her the local paper every day which we look at together and I leave it for her to read, but I don't know if she does or not. She doesn't watch tv or listen to the radio or read books anymore. She is also quite a bit deaf so if I were to read to her all the other ladies in the ward would hear it too.

Sorry I sound a bit rambling now so will just go to bed now.

ice cream sounds great how about asking nurses re fortisips they are good too.good luck with meeting.

Got a phone call this morning from the staff nurse who I spoke to yesterday. She said mum very poorly this morning and could we come up when we were able to.

We got there at lunchtime but to my surprise mum looked and sounded better than she did yesterday when I thought she looked very poorly and I voiced my concerns to the same staff nurse [who said there was nothing wrong with her]. What had happened was that she was retaining more fluid than she was passing which was making her legs and arms swell and the doctor told me later it was settling in her lungs as well, hence the rattling sound in her throat.

She was just drifting in and out of sleep while we were there and she was on oxygen as well.

We spoke with the doctor, who did seem a bit surprised that we wanted to know what was happening with mum, however he did explain about the fluid retention and that the drug they had given her to help get rid of the fluid was working and she was 100% better than she was at 9 o'clock this morning. He also said they would not be putting her back on the drip as her body is unable to cope with that amount fluids and that the drug they are giving her to get rid of the excess is a very high dose and after tomorrow they won't be able to give it her as her kidneys will just pack in.

He said we would have to think about what to do next, he mentioned if we wanted her at home then we would get full support and we wouldn't have to pay but if we wanted her to stay in hospital then she could. We are having a meeting with him on Wednesday about the next steps.

Basically if she doesn't start drinking and eating then she won't survive
He also said if her heart or lungs stopped working then they would not resussitate and he asked what we thought about that. I agreed but I am not sure my sister is in full agreement.

My sisters eldest son came and she recognised him straightaway which is a positive.

I did ask the doctor if he thought she had much longer but all he said was she will be alright for today, we will just have take it day by day. He said we could visit anytime day or night.

We came home at teatime but the staff nurse will call us if she takes a turn for the worse.

I'm sorry to hear that your mum is getting more poorly Osky.

heres a hand to hold if needed.
i remember we had the drugs issue with my grandmother too.
its a real balancing act at times ultimately though there is really only so much the doctors are able to do.
take heart that your dm is in the best place at the moment.x

I am so sorry osky. I am surprised at the attitude of the dr. I was asked a couple of times last year what did we want to do if Mum got worse, but it never came to that. Although we did say no resuss as Mum had signed a form for that. All the drs I saw were kind and considerate and wanted what was best for Mum. You might find your Mum improves when the fluid goes - my mum did.

Well we are just going to take it one day at a time. About the resuss the doctor did say that because of her age and the quality of life she would have then it would be best not to try to bring her back if she went.

Thank you everybody for your kind thoughts, I very much appreciate them and being able to talk to you all is comforting.

After a nearly sleepless night expecting the phone to ring, mum has taken us by surprise and was sat up in bed looking very well. They have taken away the oxygen. Some of the swelling has gone down although one arm is still very swollen. She was taking tiny sips of juice and there was an empty bottle of ...sips,sorry forgotten the name, on the table. Still not eating though, could not tempt her with anything, she completely turned her nose up a the tripe I took in, that she has been asking for.

She was quite chatty to the hospital chaplain when he called round and remembered him from last week.

I feel really stressed out now, after expecting the worst for the past 2 days and keeping it together I think its just hitting me now.

We will have to see what the doctor says tomorrow but I don't think he will be suggesting Rapid Discharge now.

Is your Mother the twin of my mother osky. This is exactly how she is. On her 90th birthday last year in hospital she was very very poorly. I got my son to drive me back to the hospital at night only to find her sitting up in bed reading the newspaper. She was discharged back to the CH the next day. Since then she has been in hospital another twice and I have gone through this several times. The same in the NH but at least they do not send her into hospital but care for her there. Several times I think I will get a call in the night only for her to rally round the next day.

We will have to see what the doctor says tomorrow but I don't think he will be suggesting Rapid Discharge now
They will now probably liaise with OT and SS to work out the best care for her.

Yes it is stressful and draining. The sleepless nights are dreadful.

glad today was better x

They are amazing aren't they. I warned all my sons yesterday that it may be bad news later in the week, I wish I hadn't now, because they will have been upset and worried as well.

It sounds as if this has been going on a long long time for you, I don't know how you manage.

Hope I can get some sleep tonight, you too.

Much the same today although she is eating a bit, a couple of spoons of porridge and a couple of spoons of jacket potato plus a few sips of juice.

The doc. wasn't there today but we are going to see him tomorrow. His junior doc. said mum still on the frusamide to get rid of the fluid. I said I don't suppose he will be still wanting rapid discharge now, but she said he may do - so we will have to see what tomorrow brings now.

Community social worker rang today - our first contact with a SW, I explained the situation and she said she would close the case as the hospital SW would take over now. She told us to ask for an assessment when mum is medically stable.

Another lady opposite mum was very poorly today, yesterday she was as bright as a button and signing a consent form for the social worker, in preparation for discharge to a nursing home or something, she wanted to go back to her own home and was reluctant to sign but the SW was telling her it needn't be forever.

The junior doc asked me how I was when we were talking, I said ok but tired, she said you look exhausted! Oh dear, I probably look worse than mum.

Try and get a bit of a break- you must look afte r yourself

Your health authority must work differently to ours osky. SS dealt with Mum all the time, and liaised with hospital, CH and NH.

Hi Pud, I must check this out then, did your mum have a SW before she went into hospital or care home.

Mum came to live with me because she had stopped eating. She had a warden controlled flat in a different town. I rang SS to see what help I could get. They sent me a dr and an OT, but no SW. Then she went into hospital for 8 weeks. She became totally immobile and my husband and I decided that I could no longer care for her at home. The hospital sent her to another one on a rehab ward. The staff there got in touch with SS and Mum got a SW. I chose a CH and all the moving etc was done by the CH, hospital and SS. The SW assessed Mum and helped me sort out the finances.
Last year the CH was no longer able to meet Mum's needs after 3 long stays in hospital. The CH manager helped me to get a place for Mum in a NH belonging to the same group but in a town 45 mins away. (there was nothing in this town). I saw it and was happy, so the CH, NH, SW and hospital all got together and sorted it all out. A few scares that she would not be well enough to travel in ambulance, hospital rang me the day she was going so that I did not visit when she had left, and the NH rang me to say she was there. I have found everyone to be so helpful and caring. Not just to Mum but to me as well. HTH A bit long - sorry.

Do SS know that you are looking for a CH?