Coping with parent's Dementia/Alzheimer's - does it fit here?

[silentcatastrophe]

Anyone else in the same situation? Just breaking through some of the barriers and finding out a lot of things that are not good, but from the POV of my parents' children, to be expected.

I saw my parents today. Mum said that she kept on thinking that there was someone else in the house moving her stuff around. I said that it was very important that she felt safe, even when these thoughs were annoying her.

It is delusional, and Mum is finding it very upsetting and interfering.

Sadly there are no Admiral Nurses where they live, but there is a contact number and they may have some helpful ideas.

It's so difficult, sort of beginning to grieve for the loss of someone, then there they are, living breathing, talking... It's a sort of dying process when the demented person seems to emerge from the dead, but each time a little bit more forgetful.

Alypaly, I found your post very touching. Thank you for being so open about a difficult situation. I know what you mean about reading the letters when writing was a possibility.

silentcatastrophe...its such a sad disease,it affects them all so differently. My mum never had the thoughts that other people were around.....the only time she was ever grumpy was when she had been in her residential home for about two years and i was just chatting with her carers. She piped up and said 'what are you two scheming behind my back'. we werent scheming anything,we were probably just talking to quickly for her to understand or process. At the time it was quite hurtful as i was trying to do the best for all the time...for her to even think that made me cry when i got home....but that wasnt really my mum lying in that bed...most of her had long gone.

Its a weird condition in that some days they are quite lucid,some days they are on planet zog.its so cruel.I often used to want her to go to sleep permanently as i know she didnt want to be on this planet.
When she was more lucid, she used to say to me...cant you just give me some tablets from your pharmacy and put me out of my misery.
Then i used to realise that there was still some of my mum in there ,thinking rationally.

Both my brother and I are feeling slightly more optimistic about mum's care. We will hopefully go throught the process of Power of Attorney soon, and then at least we will have the wherewithall to cope with what comes next. I told Mum that we were both working hard to make her feel safe and secure.

We all went out for lunch today and Mum ate well. Lunch was fantastic!

We are not including my dad in our discussions at the moment because I know he would cause more problems. I do think that he will accept what help is available when it presented to him as a simple proposal (basically that he doesn't have to pay).

I would like my mother to be looked after as well as she can be through such a difficult time, which may drag on and on.

Then I stop smoking (again)

my mums ordeal was 6 years.
I looked after her for 7-8months 24/7 until i had to put her in a residential home, for my health.

I was up at least three times a night to the toilet with her,she didnt know where she was in my house even after removing her bedroom door. I was and still am a single mum and my boys were 8 and 13 and i was trying to hold down a job. I was knackered.

I visited so many homes before i chose what i thought was the rightone. I had no one to help me make decisions. It was such a hard time. My BF was the only person apart from my two young sons, to help me a little. My BF even helped me lift her in and out of the bath.
The hospital told me to put her straight into a residential home as it was not safe for her to be at home, but i couldnt do that..i had to do my best for her and look after her. She wouldnt have abandoned me, if i were sick.

The hospital were awful, as they didnt even tell me she was doubly incontinent when they discharged her...it was so awful for my boys,but after a while they grew to accept this poorly lady and the degree of empathy they developed was incredible. I am still proud of the way they view old people now...not as a burden...but as human beings that need caring for...
WE had alot of problems along the way with the home but you have to stand up to the managers and tell them when things are not right...ieven called a meeting of the head of social services and the home owner at one point. Ther were 8 of us discussing my mums case at one meeting...it was very stressful,but i made sure i got my way so that she was better cared for.
In the end she started to get a choking reflex whilst swallowing as she even forgot to swallow so she had to go to nursing home which had resus equipment.
I fought and got a beautiful private one paid for by social services....and then i think the upheaval of the move was too much and she died one week later.

i miss her so much...and to be honest i miss caring for her

Thank you again for being so open. I hope it is not opening old sores for you. Sometimes, I don't know how to feel or what to think.

Your mum was a lucky woman to have a daughter like you to look after her. I feel as though the battle for the welfare of my mum has only just started, but at least we are getting some idea of what's ahead.

I do appreciate your posting. Thank you.

unfortunately the sores are still there. I really miss her as she was my best friend too. It was awful to watch such a dignified lady deteriorate from 9 stone to just a skeleton at 5 stone.I now firmly believe euthanasia should be brought in. You would not see and animal suffer the way she did in her last year.

I dont mind talking about it as sometimes it helps me cry about her and to be honest it all still feels very fresh even though its nearly 22 months ago. I think its because i didnt have time to grieve because i was so busy sorting everything from her homes and then all her funeral, house sale,solicitors,will,you name it ,i had so many files full of paper work.( and all the info from age concern)

What i would suggest is that you document everything that you have to spend to make your mums life comfortable and keep receipts and a file for every little item.
Social services have the right to go back 7 years into bank accounts to make sure you havent withdrawn money from your loved ones accounts for your own use or otherwise.If they find large amounts missing( im saying large..it cost me £600 to make the bedroom right for her with a new bed etc and i had to explain my expenses)they can ask YOU to pay it back. Once you get involved with social services yours and your mums life are in their hands!!!!!!!social services have the right to use all your parents money for the home but after( i thinkits about 21-22k)
£ 21,000 it is at a reducing rate.
I had to redo my sons bedroom to kit my mum out with things that she needed to keep her comfortable and it was so upsetting when i had to prove it was for her benefit. i could have wept...actually i did. it was inhuman.

If you want any help on the finance side just ask..i will do what i can as its a positive minefield.
Have you managed to apply for attendance allowance to get her help and for things she might need.

I've been looking into Mum's financial situation, and she will have to go privately, so it seems as though we have the option of SS spending her money, or us organising the care. We need to persuade my dad that it's probably easier for us if we get to chose who looks after her and what home she goes to as and when. Bloody hell, it's complicated. At least the wheels are in motion.

I don't know if anyone has applied for a carer's allowance or attendance allowance. I shall tell my brother to sort these things out.

Thank you so much for your input. It really is very helpful and insightful.

Silent: If you have access to any savings, you might want to contact Age Concern/Help the aged (I think they are one organisation now)and ask for them to recommend a company who can arrange for you to buy an annuity. It isn't cheap, but it guarantees fee payment for as long as needed, so you don't get to a stage where the savings run out, and the associated probability that your parent will be moved to a cheaper, poorer standard care home.

It does, of course depend on life expectancy...sorry, I know it is very painful.

if she is going in a home you can get attendance allowance....there is a minimum and max depending on her degree of need. It is all extra help in the bank to help pay for their care.
You dont have to go to a private home. You can use the social service ones and go ''self funding''.
There are lots and lots of forms to fill in so you will need to have all her finances in front of you in order to deal with it.
Fortunately you wont have to sell her home to fund her home as i did...becos your dad is still living there.

All i can say is just because a home is private ,does not mean you get better care. On my mums first day in the private nursing home, her pureed dinner arrived cold and i stayed to give to her. I went absolutely ape...and asked to see the manager.
Speak to the carers,see if they are happy in their job,speak to other relatives in the homes before you make a decision. Happy staff give better care...resentful staff give poor care,as i found out until i kicked ass.

What i suggest is fight for her rights wherever you put her....if /or should i say when, she becomes more poorly, have her assessed properly and if she fills 4 out of 5 criteria for care you can get social services to fund her care completely.
Just have the guts to fight. If we dont no one else will do it for them. Unfortunately you are going to shed alot of tears along the way...it is a rough ride...but i have to say,almost a relief (for them)when they finally go to sleep.

Radio 4 now.

I've heard about private care homes. Thank you for reminding me that they're not necessarily the best. I have spoken to my brother to ask him to really look into carers for the immediate future. I think he will need a clear idea of what Mum's care needs actually are. I expect it'll be a steep learning curve for him. We are a bit of a way off homes for now but I have been advised to start looking into them. Your advice on things to look out for is very helpful.

It seems as though we are just at the start of a difficult journey, with only the relief of death at the end of it. Bugger bugger bugger.

where abouts are you in the country? as i have a very good friend who owns a large group of the most wonderful care homes in the North West and is expanding weekly. His standards are extremely high.
Unforunately a the time when my mum was ill, he didnt have any near enough to me.

Social service homes are about £1800 a month and private approx £4000 per month so dont be shocked when you see the figures.

Saying that about private homes ( that incident was a one off as they didnt know which room she was in so the food got cold on its way there...but it still annoyed me),in general they are much better because the staff are paid more and are therefore more content..but look at the staff to 'inmate'ratio...that tells you alot.

With regard to enduring power of attourney ,this may help...www.gt.nsw.gov.au/plan/enduring-power-of-attorney.cfm but do it quickly whilst she is still lucid as it take ages to get the ordinary POA through the courts..WE found a wonderful lady solicitor who came out to my home when my mum was still living with me...she was brilliant.

Attendance allowance www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DG_10012425
and ask for a DS2 from social security...
current rates for allowances are on form GL23

I would suggest that you ask your solicitor to give you approx 6 signed copies of The EPOA as you have to send actual documents that are not photocopied to all companies like banks,,policies,insurances ,and if she has shares you need to take those over too.

If your mums savings are in joint names,she may not have to pay anything for care..so check.

Keep all bills for any private care your mum has from now on as you will have to account for outlay if she ends up in a home and if you cant ..it causes all sorts of problems.

If you are going to get people in to care for your, beware, because some of them charge on an hourly rate at £ 12-£20 and it varies so much,Also the care is very varied.

Orchard care homes are very good IME.

Having looked after my mum for 10 years at home and paid for everything, we have now sold her bungalow to pay care home fees. However that will only allow us 2 years of residential care in the nice home she is in.

Once the money runs out, there is the risk that SS will move her somewhere cheaper and not very nice.

The option of purchasing an annuity with the money would mean that the fees would be paid indefinitely. It is difficult though because ss have control over it, not us.

Age concern/Help the aged give good advice on this.

Sorry - forgot I had posted this further down the thread.

whos getting forgetful now sorry couldnt resist that.

Oh God yes. I am confused and bewildered all the time these days. It is all downhill now!

Thank you all for explaining some of the pitfalls. It's a bloody minefield.

Still no news from the solicitor. I will call them tomorrow, to ask above all if they are suitable for the job. The financial adviser said he had been wondering when he would get the call.

My brother is wondering how to broach the subject with my dad. I said that simply, what will happen, if we don't get POA, then SS will, and we will have little control over what happens to Mum. I think this is probably an over-simple explanation, but may just get us what we want.

My parents are in Oxfordshire. I think they are quite well set up for help and support, and possibly better so than in other parts of the country.

Don't worry about repeating yourself 3littlefrogs! I worry about myself too!

sorry to be thick ,who is SS?
For Enduring power of attourney the solictor has to know how many parties have a vested interest in caring for your mum and your mum has to be compis mentis enough to agree with the solicitor who is going to take charge.
The solicitor has to be sure she is not being forced into a decision. Any realtives have to be asked and named before it is finalised so i wouldnt worry about someone taking over.

My friend lives in Oxfordshire ,just along the river..you have good social services there and homes should be better too. If you have a problem just change her registered address to yours so that they come under a different borough council...there are ways and means of getting the best for her.

ss - social services

My parents have already signed the bits of paper for POA, and so have my brothers and myself. I will call Help the Aged today to find out more. My dad thinks that care means hoovering about like a maniac.

Life would be so much easier if my dad was actually looking after my mum properly, would be sensible about the care she needs, and stop trying to control everything. He often says, no, you can't do that. It is his mantra. I am feeling pretty angry about the trail of destruction he has laid, and we need to think about the future despite everything.

In a practical sense, things are trucking along, except that my (useful?) brother hasn't signed POA, which is pretty serious as it means that they will have to start again and make alternative arrangements if he can't find the form. The psychiatrist will call me again soon about the next move.

In an emotional sense, it is a wreckage. I feel a great sense of betrayal about having to take this action. Whenever I speak to my parents, everything is fine, tickety boo and good. I know from bitter experience that this is not the case. It is very very lonely. I'm sorry to sound trivial, but it feels like I've made an appointment with the vet to put down a much loved animal. I guess I'm quite frightened of the fallout with all these stupid men in my family.

Apart from one brother, there is nobody to talk to about what is going on. It is as though there is life as normal, and above all, a great wall of silence.

My father has no idea of what we are doing, and would certainly say, no, you can't do that and lose his temper.

Hello All

sorry i am joining this discussion rather late on!

Just wanted to suggest a couple of things, to people who are in these extremely difficult situation , which may be of help.

Firstly, when a persons dementia progresse to the stage where they need a large amount of care, whethet that is in their own home or (more usually) within a residential or nursing home, please ask their social worker or Community mental health nurse to screen them for whats known as 'continuing health care'. This is money paid from the Nhs to fund the care of peoples whose PRIMARY need is for HEALTH care as opposed to a need primarily for social care. If they are awarded this then they do not have to contribute anything at all towards the cost of their care, and probably more importatntly there is often a greater degree of flexibility about what facilities can be accessed (i.e can use more expensive, specialist facilities).Not everyone is eleigible obviosuly but many are so its well worth asking.

Secondly, anyone who has concerns about a loved one, but who doesnt feel that those concerns are being 'seen' or where perhaps a another family member is being obstructive or for whetever reason isnt getting the help in that is needed, then the person can be deemed a 'vulnerable adult, and the case can be loked at as a Multidisciplinary approach along with the police. each police force has, as far as i know, 'vulnerable adults' team whose job it is to look at cases such as these along with Social services and anyone else who may be involved. Anyone can report a concern to VA and ask for them to look into things, if you ring the local non urgent police number and report your concerns they have a statutory obligation to make contact with the local Older Adults Mental health team. I would emphasise that this does not mean the police will come crashing through anyones front doors or 'qiestioning people' like criminals, its not like that!! But I do find that once a VA referral goes in the popel involved in the persons care do look miuch more in depth and often work more intensiveley with the client and their families than before.

Thirdly, every Local authority has a finance and benefit team who are responsible for undertaking financial assessments and providing help and advice about paying for care home fees and claiming any benefits. they will often help with applying for Attendence allowance. Also it is worth remembering that if savings are held in joint names then they will effectively be 'split' down the middle for the purposes of the assessment so a couple would have to have in excess of around £45K in savings before either one would be fully liable for care home fees, and it is well worth noting that some insurance type savings policies are in fact excluded from the assessments.

Hope some of the above may be of help to someone!

Apologies for all the typos' trying to type it all ASAP!!

I feel for you. I had to go to court to become my father's legal guardian because he was no longer able to grant power of attorney, he and other members of the family resisted the idea of POA I don't really know why.

It took more than a year from him going into hospital to getting guardianship and getting him into an appropriate care home. ANd then he died within 4 months. It is gruelling dealing with all the papework and none of the agencies seem capable of talking to one another or of acting one just the first request. Without fail I had to contact SS/DWP repeatedly for them to act.

I never want to end up in that situation.

Neicie - my dad did forget that he was a drinker and heavy smoker. I think that was when I knew he was really gone. Started eating tomatoes too, never liked them before.