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.

Shame you do not have CCC in your area.
I am not going to say anything at funeral and no one else wants to. We have all put our memories down and I am collating them for the funeral celebrant to read out. I have found a lovely poem to have instead of a second hymn. There will only be about 18 - 20 at funeral. So hopefully after today I can relax a little before the 21st.

A poem sounds lovely, what is it. Is the funeral on the 21st, thats a long time to wait. Did you decide on the orchids.

I got a phone call this morning from the lady who arranges the care co-oridinator and she said there was only one vacancy meeting the criteria in our area and we could go and look at it tomorrow. I hadn't heard of this one and she said a new owner had just taken over. She did mention one belonging to the same group as the one we had already looked at and she said she would try them. I mentioned we had been to look at their other home in the area where my mum grew up and she said she would try them as well.

She rang back and she has got mum a fast track continuing care nursing bed in the home which we originally wanted her to go to. There are no costs involved and no top up fees as the NHS will be funding. So she can be discharged there tomorrow.

I honestly don't think mum has long left to live but she will be happy just knowing she is back in Holmfirth. The room may not have much of a view depending on which side of the building it is but the main thing is that we have seen the home and liked it and its, as far as mum is concerned going back 'home'

My sister is ill as well now but we are going to go see mum this afternoon and give her the news.

Look after yourself now, knowing you did everything you could for your mum.

Remember Me:
To the living, I am gone.
To the sorrowful, I will never return.
To the angry, I was cheated,
But to the happy, I am at peace,
And to the faithful, I have never left.
I cannot be seen, but I can be heard.
So as you stand upon a shore, gazing at a beautiful sea - remember me.
As you look in awe at a mighty forest and its grand majesty - remember me.
As you look upon a flower and admire its simplicity - remember me.
Remember me in your heart, your thoughts, your memories of the times we loved,
the times we cried, the times we fought, the times we laughed.
For if you always think of me, I will never be gone.

Mum loved her holidays with us and her grandchildren at the seaside so I thought it was appropriate.

That is just beautiful, it brought a tear to my eye.

We went to see mum this afternoon. She is not well but she did ask for an ice cream which is a bit of improvement. The doctor wanted a word with us in private and basically mum is very poorly and prognosis is not good, especially if she won't eat or drink more, she has heart failure and kidney failure. My sister got very tearful.

We told her about the home and she seemed to be happy with it and knows she will be going tomorrow, all being well. There was a bit of drama as well, another lady across from mum decided to throw her water at us all, followed by the jug which bounced off mums bed and nearly hit me in the face. The lady from the hospital chapel was visiting mum at the time and when the nurses had cleaned up and calmed the lady down a bit she went and sat with her and was very patient and just lovely with her.

Osky thinking of you today. Hope your Mum's move went well and she is settled in. I bet you go home and have a good cry. I know I did. And try not to feel too guilty - you know you have done your. We never did get continuing care nursing so Mum had to pay nearly all her pension.

Its been a funny day, I got a call at 9.30 to say mum being discharged to nursing home today. Rang ward at 2.00 to see if she had been discharged yet and if it was worth going up to see her but told just waiting for transport. I rang the home and asked if we could take some of her things and some flowers.

She has a nice room with a lovely view of the Holme Valley, a comfy chair, tv and own bathroom as well as ususal other furniture stuff. My sister was especially delighted she had the view as the rooms on the other side of the corrider just have a view of a stone wall and hardly any natural light.

We arranged her photos and wash things, I had taken a vase for the flowers so DH dealt with them. We did wait a bit but the nurse said depending on how busy patient transport is then it could even be 7 o'clock before she arrives. Would you believe it we had just arrived home when the phone rang and it was the home saying mum had just arrived so we must have missed her by minutes. We wanted to go before the high winds and blizzards set in, forecast for teatime.

So for the first time since she has been in hospital neither of us has seen her today. I just hope she is ok tonight as my sister would never forgive herself if anything happened tonight. My sister is going to see her in the morning and I will probably go in the afternoon.

I actually feel relieved in a way because she is back in the Holme Valley where she comes from and where she wanted to be, my only concern is that she will just be isolated in a room on her own. The doors seem to be left open and all the people seemed to be in bed and there was no one in the residents lounge. When we visited there were a lot of people about. They are having the home re-carpeted so that could be a reason people not about.

Hope you are ok today and the weather is not affecting you too much.

Your Mum will be fine. When Mum went into NH they told me not to go on the day she arrived so they could get her settled. The room sounds lovely. You may be surprised like I was with my Mum and it sounds as if they leave the doors open so that the residents can see folk going by and people can say hello to them. Just make sure you don't take anything expensive like jewelry in, and don't leave any money in her room. Also label her clothes.
Very windy here as well - but we are so lucky compared to some. I think we have booked a coach holiday to near Holmfirth in May.
Hope your Mum has a good night.

Thanks Pud, she doesn't have much jewelry only her rings, and I don't think she will be wanting any money. I ordered some woven name labels from Ebay, they should arrive tomorrow and the home said to put the room number on as well.

If your coach holiday mentions Last of the Summer Wine Country then that is Holmfirth area. You will have to let me know where it is you are going.

We are lucky too as its very hilly around here and we live on a hill too so we are very unlikely to get flooded, the noise of the wind is scaring the dog though.

Pud, mum died this morning. The home tried ringing me but they had written the number down wrong and my sister never heard the phone call to her so the nurse stayed with her until the end.

The nurse said they got the doctor out at 1 o'clock this morning because her breathing was very raspy he gave her some medication but she died not long after.

They called him back but he didn't get there until later and then wouldn't sign the death certificate as he said it was 'unexpected' so they had to get the police in and they had to take her to a funeral home within the hour so and by the time I had decided I wanted to go see her in the home she had been moved. Policewoman said Coronor could possibly order a PM which would be so so awful.

I knew in my heart of hearts that she wouldn't last long and feel as if the move might have hastened her end, the stress of it and us not seeing her yesterday - but we will never really know this.

I phoned all my sons before they went to work, 2 of them live in different parts of the country - I didn't know if I should tell them so early in the morning but in the end I had to or it would have been on my mind all day wondering when would be the best time. But there is no best time is there.

The nurse said she was peaceful at the end, I asked the nurse if mum knew she was back in Holmfirth but she said she was asleep all the time she was there so never saw the view which is a shame but my sisters husband said not to tell my sister this.

It feels like a great empty void - and we are just waiting for the coroner to ring now before we can do anything.

I feel awful telling you all this as you are going through this with your mum as well but you have been such a support to me in the last few weeks, i just want to say thank you from the bottom of my heart.

Oh Osky I am so very very sorry. You must feel numb and so many other emotions.
Please don't feel bad-you did an amazing job caring for her.
Sending love.Look after yourself.

Oh osky I am so sorry that it had to happen like this. My heart goes out to you. You were a lovely daughter and she will know this. Your Mum is now free from pain and her mind is whole again. Take care.

Thank you Pud and Twentyten for your kind words. I really do appreciate it so much.

The funeral is going to be on the 21st, same day as your mums Pud, so I will be thinking of you too on that day.

I have put more on the other post.

Things just get better! I had to have chest x ray and blood tests last week. Went to docs earlier good new my lungs are ok, but I have a borderline thyroid reading for hypothyroidism, doc says this could be one explanation for why I am so tired all the time and breathless. She has given me another course of antibiotics for this chest infection and will see me in 4 weeks to see if I am still breathless if I am I will have to have a heart scan and another blood test in 8 weeks.

My sister brought round a bag full of papers from mums house, I know mum and dad had a joint will and I was executor but have no idea where it is. Dad was very organised with all the bills, insurance etc and always took care of the financial side of things but mum was very disorganized and just shoved things in cupboards and drawers.
There was an envelope with some cash in it and no doubt there will be cash hidden elsewhere in the house. I have found the things I need for the registration.

I was thinking about mum in bed this morning and thinking of writing an open letter to her.

I have to do something I am eating like there is no tomorrow.

Oh dear osky, I hope you get better soon. My sister has tablets for hypothyroidism and they do the trick. I found that the registrar did not want to see anything, but asked a lot of questions. Has your Mum now got to Chapel of rest? I bet she is looking down and laughing at the trouble she has caused. Mum only had her pension, so not got a lot to sort out in that way. We are having donations for the NH instead of flowers. The funeral director said that as Mum's cremation was Friday afternoon flowers would only be there til Friday night as they clear them all away on Saturday.
A letter would be good.

Oh you poor thing osky.No wonder you are tired.you have been living on a knife edge for so long now.

A letter sounds really good-do whatever you feel will help and be really kind to yourself. So much to do but it doesn't have to all be done today.

Eating is fine-chocolate is medicinal.Big hug.

Registrar asked for marriage or birth certificate, proof of address, national health card and number plus proof of my identity and address. Appointment is for 3.30. Mum can't be moved until undertaker gets the certificate so will take it straight to undertakers and hopefully they will be able to get her to chapel of rest today or tomorrow.

Spent the last couple of hours sorting out the bag of papers and found some Income bonds, premium bonds and a really old life insurance policy for mum as well of a bag full of old bills and bank statements. My dad had made a list of all their assets but I don't know if these are still current or mum closed accounts or cashed them in after dad died.

Also found some of their old passports, when you used to be able to get an annual one - there was one with mum on when she was 60 and she looked amazing for her age.

My daughter in law is arranging the flowers and we have asked for donations to Help the Heros instead of other flowers. Dad was a paratrooper in WW2.

Andy is coming down on Thursday from Inverness and going back on Sunday and my middle son is also coming on Thursday and will go back Friday night. youngest son lives very near by.

Thanks for letting me know the tablets work for your sister, if I have it too I hope they work for me.

Allow yourself lots and lots of time to get over both the physical and emotional exhaustion. For at least the next two weeks only do what you have to do. Dont be surprised if you find yourself needing day time naps and feeling really out of kilter. Be kind to yourself and allow yourself to recover.

Expect the paperwork to be a real bore. Get hold of as many certified copies of the death certificate as you can. I am told that the probate people are very helpful. My experience was that taking all the right paperwork into bank branches, etc and sitting there till you got what you needed was the fastest way. Individual branch managers tend to be far more helpful and knowledgeable than people in call centres. Premium Bonds are not too bad as long as you have the death certificate. However don't tackle any of this for a couple of weeks, unless you absolutely have to.

I have a link somewhere which you can use to discover old dormant accounts. Let me know if you need it. The bigger nightmare is if your parents bought shares as part of the privatisations of the 80s.

Did your mum own her own home. If rented how quickly will you need to clear it?

Thanks, I havn't done any housework all week, today I called at my sisters after the doctors, then spent a couple of hours with all mums papers and letters listening to my favourite scottish music cd and then I realised I hadn't had any breakfast or dinner. We went to registrar office and then took green form and release form to undertakers.

My sister brought us a stew she had made in slow cooker which was lovely.

My cousin rang and told me he was coming to the funeral, his dad, my mums older brother was 95 when he died - so we had a bit of laugh about long life in the family.

Mum is in a council flat and they only give you a week to clear everything out after you give notice so we are going to leave this until after the funeral as neither of us is up to dealing with that yet.

I don't think they bought any shares but the dormant bank account link may be useful if you can find it. We don't need to deal with banks etc yet as mum had left loads of cash hidden around the house and had accumulated about £4000 worth of pension my sister hadn't collected for her.

I have told DH he has to cherish and look after me for the next couple of weeks at least, he says he will but we will see how long he can keep it up, not that long I suspect.

I have just found this thread, am so very sorry for your losses. But I wanted to thank you so much for the useful advice.

90 year old FIL has been in hospital 6 weeks tomorrow and is getting a bit better, diabetic, kidney infection, severe bladder infections, various things in last 6 weeks.

He lives alone, nearest family is my dh, 40 mins away and he works in London, as do I. Docs keep saying to FIL, you can go home soon! am horrified. No OT has visited house, only saw him briefly to do a stair test. NO SW has seen him at all, no financial assessments etc.

He does not have a bathroom downstairs at home, steep stairs and can barely walk, just off oxygen for COPD but no idea how long for. Where do we start!?

He own his house but we have no idea what he has in the bank, what does this £23000 figure mentioned earlier mean?

We feel he could cope at home if he has a daily carer pop in, stairlift, walking frames etc, but does he need to pay all this? he gets low rate att allowance and his pension, but nothing else I know of.

Any help soooo much appreciated ... thanks

I'm afraid I haven't read all the thread, but I think the £23000 figure you mention is the maximum amount of savings you are allowed whilst still being entitled to state funded care. Significantly over that amount, and you are considered 'self-funding'. I don't know how ownership of a house affects things with regard to care for people who wish to stay at home, but if your FIL were to become resident in a care/nursing home, the property would have to be sold to fund his care, until his savings fell to around the £23000 mark, AFAIK.

I can't be completely certain of the detail, as my 92 yr old mum now lives with us, but we did explore other options, and I believe if your FIL is eligible for state funded care and wishes to remain at home, a 'care package' is put in place by the local authority. Depending on level of need, this is usually 3 or 4 half hour visits per day, I think. If he isn't eligible, then he could have the same sort of package, or a more 'tailor-made' one paid out of his own funds. On discharge from hospital, he should be entitled to a six week non-means tested care package of 3 visits per day, in any case.

I think there are various items of equipment which are available, whether you are self-funding or not. You will need to get an OT assessment of his house before he goes back home, I would have thought, so that things can be put in place for him. It might be an idea to contact your local branch of Age UK for more info, and the Adult Care team of Social Services, who can arrange for an assessment (of need) to be carried out. I think that would be once he had returned home, however. He may be entitled to Attendance Allowance as well.

www.ageuk.org.uk/money-matters/claiming-benefits/attendance-allowance/

I don't think this is means tested.

I hope you get things sorted out. I know from experience how difficult it can be. You need to keep badgering the hospital community care team and social services to see what's available, and it sometimes appears terribly complicated. I was lucky to find some members of staff who knew exactly what they were talking about, and were able to explain it in simple terms to me! I hope you find the same.

thanks so very much, total nightmare week, they discharged him home on Tues, one hour there and care team arrived, horrified! he readmitted 2 hours later :(

Contact AGE UK first.
They will advise you how best to proceed.

will do, thanks