Don't know what to do

[leon8598]

Hi everybody, I'm completely new to this. Basically my mum has just been diagnosed with Alzheimers. She is 75 years old. I live with my mum and I have no brothers or sisters. It seems to have come on very quickly, as in the last 6 months. At the minute she is in hospital because I had to take her to casualty myself. She saw a psychogeriatrician on 20th May and he couldn't give a definite diagnosis because her answers fluctuated so much and he wanted to check her medical records for any other reasons for the confusion. After 2 weeks we still hadn't heard anything from him and I was at my wits end so took her to casualty myself to try to get and answer. She had been put on to Digoxin, (a heart tablet), in mid April and I honestly believe the confusion got a lot worse, but she has been off that now for 2 weeks and the confusion is still there.
Whilst at home she didn't believe she was in her own house and wanted me to take her home every night. She would say her Mum and Dad were coming for tea. She thought I was my cousin. She would be looking for my Dad who died in 1982. She would get really angry at night because I wouldn't take her home and then refuse to go to bed because "that's not my bed". Loads of other wee things too.
Now we are at the point were the hospital say she is medically fit for discharge. I work Full-time but have been off sick for the past two months with the stress of all this. Obviously my wage is the only wage coming into the house.
I had hoped for daycare for her but on really thinking about things, I don't know if I could cope with the night-times and also get back to work. A nursing home is the last thing I want to do but I feel like I have no choice as I have no family back-up.
Can anybody give me any advice please?

 

[Sandy]

Hi leon8598,

Welcome to Talking Point (TP).

You might want to look at the Alzheimer's Society's factsheet on the hospital discharge procedure:

http://www.alzheimers.org.uk/factsheet/453

Before your mother is discharged from hospital, there should be an assessment of her care needs and a care plan put together that takes your needs into account also.

There should be a social worker based in the hospital who can help with this.

It can be difficult as once the hospital has done what it can medically, the pressure is on to move her out ASAP. You need to be clear that about what you can and cannot cope with.

If you say that you are on the verge of a carer breakdown, then it might be possible to arrange some intermediate care at a care home to give all of you some time to sort out the options.

It's worth noting that if you are considering a care home, and you live at home with your mother, if the house is in her name, it could be counted by social services as an asset to be used to pay for her care costs.

It may seem premature, but it could be worth reading the factsheet on care home costs:

http://www.alzheimers.org.uk/factsheet/468

Take care,

 

[sistermillicent]

Hi Leon,

You sound dreadfully stressed and I am not surprised at all because what you write about sounds so hard.

Whatever your mum has got you have been faced with such a difficult time. It sounds like my mum, she has Alzheimers.
If your mum has that then it is unlikely that she will become easier to look after, sorry but I am sure you know that.

I don't know if it is possible, but could you get your mum into a care home for a period of say three months, while you get better from your stress and delay your long term decision about what to do? Your own health is so very important.

When you stop feeling stressed, which may need to be with the help of your GP, you then need time of feeling okay, don't jump straight in and start caring for your mum, take a while to be fully recovered.

Keep posting on here, and keep us informed, people here know what its like and will help you.

sending love
Pippa

 

[JackMac]

Hi Leon

I'm new here too.
I just wanted to say that when I was nursing (quite a long time ago mind you) if a patient was medically fit to go home, then the nurses checked with the rels first to make sure they were safe at home and any carers had the help that they needed. If not, they were referred to a social worker and moved to what they used to call a lying in wait ward.......i.e. waiting for help to be set up or a nursing home before they are sent home.
I'm assuming you're in the UK when telling you this but you might not be.

Please talk to her nurses and tell them the situation. They might just assume that because you live with her everything is fine. Although they shouldn't just assume.
Ask for a social work referral and tell them that you will not be able to cope as you work.

good luck

 

[boots]

hi leon i can read how stressed and worried you are a full assesment needs to be done social services should have visited your home to see what needs are met if you are not well yourself it is going to put more strain on you and make sure you ask for help its out there pls get in touch with the alz society they will be most helpful look after yourself....HUGS......

 

[oldsoulchild]

hi
i was in a similar situation when my mam was in hospital. i'm also an only child with a job etc. the hospital said they were ready to discharge mam but if i wanted social services to get involved then they would keep her in while that was arranged. i agreed to involve ss as i knew i was going to need them later down the line and would take any help i could get. it was definately the right choice as we were given 6 weeks of after care, when that ended they referred mam for more care and it all fell into place, luckily as i am clueless as to what i would have done otherwise
my advice would be to keep your mum there until ss are involved and take any help htey offer
good luck

 

[pucci]

Hi Leon

Last year I was in a very similar position to you, my Aunt was in hospital and when I visited her in London, (I live in Leeds) I was told that she was bed blocking they were discharging her and it was family responsibility to look after her!

I was devasted, I dont have children I am married and I have a job which takes me away from home a lot, I didnt have time to sort this out. Last year i used my holiday up and eventually managed to get her into a care home. She has to pay for it and so we have had to sell her property to pay for it.

I learnt a lot during may and June of last year, your mother is known as a vunerable person, they must be a appointed a social worker by law, get one as soon as possible, the council will need to make an assesment of her needs but she has a legal right to have the assesment to see exactly what her needs are.

I am not sure if this helps. I really hope it helps.

 

[leon8598]

Thanks every body so far. Went to hospital to see Mum tonight and she is in great form and remembering things from yesterday and last week as well as years ago, although a little bit of confusion there too. Then I start to wonder if it is far too early to think about a nursing home. I know the emphasis is to keep dementia patients at home as long as possible, but even with 4 calls a day, I worry that in between times, she could be doing dear knows what while I'm at work. Wish I could think straight enough to know what to do for the best.

 

[pucci]

Just hang on in there Leon.

Just remember that you are not alone. Your mother is a vunerable adult. It is the Law that she is appointed a social worker who will work with you.

My only advice to you after last year is make sure you're mother is in the social work system before she leaves the hospital.. Make sure the hospital is aware of all the problems YOU have too.. during the last 12 months I have learnt that you cant afford to say Oh OK.... and just hope. Make sure you get the help you, and your mother are entitled to. It is so important.

K

 

[Margaret W]

Hi Leon

Can I suggest that our mother should now go to an Assessment unit where they should be able to determine what help she actually needs.

 

[leon8598]

Just another update. Had meeting with social worker and doctor today. I am going to try day care for my Mum as I just don't feel she is bad enough yet for a nursing home. It will mean me having no life of my own because I will be at home with her every evening and weekend but I just can't put her in a nursing home as yet. I have no idea how she will be in the evenings, I just hope things will be better than they were before she went into hospital. She doesn't seem as agitated as she was but maybe that's a false impression. Don't know if I've just made a huge mistake but neither taking her home or going into a nursing home feels right. I just want it all to go away.

 

[Margaret W]

Hello Leon

We do all understand how it is, many of us have been in the same situation, so do keep us in mind if you want advice, or just to let off steam.

Sadly, it is quite likely that your mum's confusion will not improve - the best you can hope for is a little help from medication and some days better than others. Most people seem to cope best if they can chuckle about it, both to their sick parent and to themselves, but I know that isn't easy.

Do make sure that you claim any benefits to which you are entitled - your mum is almost certainly entitled to Attendance Allowance for a start, which is not means tested and is not taxable (at the moment). The application form needs to be carefully completed, with all questions answered as if it were your mum's worst day that you are telling them about, and yes, she needs care in the night as she is looking for your dad and her parents. You can't claim AA until the person has needed care for 6 months - so think very carefully of the date when she first needed care, from what you say it was 6 months ago, so there should be no problem.

You should also get a council tax reduction with a diagnosis of Alzheimers. If you are low paid, you might also be able to claim Carers Allowance. I'm not familiar with that, so check it out. I know you aren't wanting to think about all this right now, but every little helps to ease the pressure on you, and might give you extra money to pay for a sitter in the evenings or at weekends so you can have a break. Which you are more than entitled to have, and will need.

And remember, there's a whole world of people here ready to listen.

Love

Margaret