Responsibility for Elderly Parents? Support thread right here!

[Needmoresleep]

Several of us are on the same journey. Some more difficult than others, some longer than others, but none easy. Feel free to share tears, rants or laughter with others who will understand.

SugarPlum, they put her on Galantamine - so it's a titration appointment?!
The nice lady from the council said she would help us/me fill the form in - I think I should give her a ring tomorrow and see if she can fit us in whilst I am there if she thinks it's worth it? Or Age UK?

NMS, it must be horrid feeling that you should make the effort to visit even though she won't remember it. If you are exhausted, put yourself first, she sounds well looked-after

On attendance allowance my tip, other than to get help from someone with experience, is to think carefully about what you and others do. Rather than try to identify your mother's lack of capacity.

For example:

1. have her in a setting with an overnight warden because though the warden is not often called you would ot like her not to have someone available.
2. organise for her laundry to be done, or check that she is changing clothes regularly. Do you change the sheets for her.
3. Do you organise the shopping for her, check the fridge discretely for out of date stuff. Check the bathroom for toothpaste etc.
4. Is she cooking or simply heating up pre-cooked stuff.
5. Have you set up TV and heating in a way that she does not have to deal with controls? (My mum can simply turn the TV on and off - when I am feeling malitious I think of changing the channel from BBC1 to Dave.)
6. Can she clean the flat.
7. Can she get out an about on her own or does she really need lifts. Or someone to organise medical appointment etc and get her there.
8. Does she need prompting for showers or medication.
9. is she able to manage her own finances or are you paying bills for her.

10. Are you organising maintenance work on the house.

Its easy to get in the habit of doing quite a lot but not really thinking about it. Yet really hard to acknowledge you are doing this because your mother is incapable.

NMAS, that is a helpful list! I am 200miles away, so don't do much RL stuff, but

1. she currently has "panic" button pendant, etc
2. she seems to be managing this fine. I think the carers change bedding but not sure how regularly
3. she currently does her own shopping. Not sure how she manages to give right money/check change. Carers check for out-of-date stuff
4. I think she is doing some proper cooking still, not sure how much - she does eat a balanced diet with fruit and veg I think
5. heating on timer/thermostat. TV seems OK
6. Carers come in 2 x 1 hour and do some cleaning
7. she can get to the shops, GP, I have been with her on all hosp appts so far, but she can have carers to help/take or ring a cab
8. fine with personal care atm, has blister packs for meds - think she's taking it OK atm
9. we have online banking for her, but she withdraws money for shopping/paying odd job men, etc. Again, not sure she knows what she is paying and could quite easily be conned I think. But so far, no problems.
10. she is still organising maintenance work!

The main "worry" is numbers/money which seems to be the most confusing. She is not silly and puts the phone down on cold calls, etc. Not sure about people coming to the door though.

So she is still doing most of it herself despite only scoring 43/100 on the test! Perhaps we should put Attendance Allowance on hold?

Also, if I got POA, would she still be able to withdraw money from the cashpoint?

Hi Tilly. Dh set up POA with his dm and had one bank account which he transferred smallish amounts into each month by dd so she could use the cash point.- I think he just moved money from the one she was using into another which he paid bills etc from.
Also we had mail redirected to us as she got really stressed by Christmas cards- kept trying to send them back to the person who sent it.
Sounds like she is doing so much by habit which is why she can. Good luck.

I would do the POA first, and quickly. She needs to do it whilst she has capacity to understand what she is signing. I'm not a lawyer but its sounds as if she would, plus if your wider family agree you can do it yourself, getting three of them, plus a witness, to sign.

Its sounds like your mum (warning, internet is obviously not the place to diagnose) is three or four years less advanced than my mum, though in part she was able to cope prior to her fall because she had a routine, plus we discovered she was not coping as well as we thought. Receiving Attendance Allowance would suggest she does not have capacity, and I am not sure you would get it now anyway, so leave it till after the POA.

The problem is that moving requires learning new routines, and it would take her at least a couple of months to settle. However learning new routines will be easier sooner rather than later. Its sort of like you have to invest some of the current capacity/independence in order to maximise future capacity/independence. Not an easy one, if she is happy and relatively safe.

POA simply gives you a cheque book and the ability to do things on your mums behalf. It is supposed to be a gradual thing so even if one exists, you only use your powers if she can't. My mum had been giving away her bank details to phone callers, so it was important she did not have access to them. Banks are in strange territory regarding capacity as it is not binary. Their immediate instinct was to not allow her access at all, but we reached a compromise of having something similar to a teenagers account, eg a small savings account with no cheque book or direct debits, but with a debit card. I discovered then that she can't use a cash point, but there is a small balance on the account so if emergency money were needed someone could withdraw on her behalf and I could top up. What I do is leave cash in the safe where her medicine kept, and the carer gives her some money every few days to cover her daily trip to Tesco.

Writing this reminds me how lucky I am that she is in very sheltered accomodation. Warden, laundry, a weekly clean, maintenance organised, cooked lunch available, a reception to control visitors, company in the form of a coffee lounge and social events. When you are working with someone with no memory, care and money have been hard enough to organise long distance. There is a lot of problem solving in the early stages, which if everything goes well can help maintain a decent quality of life. Sadder now as my mother is losing her enjoyment of company ond conversation, and I can't really help her much.

Sorry, I didn't explain, the POA is set up (all signed, with solicitor) but needs to be activated by letter of diagnosis, which we now have! We already have internet banking for her, and her regular bills are all on Direct Debit, so this hasn't been an issue so far. As I can't go up that often, I am not sure how I would give her cash on a regular basis. I think I will ask MIL how it works for BIL (who is severely learning disabled and carers do all his shopping for him)

She doesn't want to move and I don't want to move her unless we really have to. I think she would find a move very disorientating and she is fiercely independent, so I think it will be a last ditch affair.

I am going to see if I can get her to try a lunch club or similar for something else to do when I next go up. I might get her bro and SIL to suggest it too when they go on the weekend...

Either a debit card on a small seperate savings account, or put some in a safe with a cash book and suggest the carer or trusted regular visitor doles out a specified amount each week and signs for it. (But then my mother had a habit of hoarding so would lose what she had and then be distressed because she did not any money.) I leave a couple of months worth so it is available in emergencies or so there is enough to buy one off things.

However if she enjoys shopping, and is reasonably efficient, she should do so. One problem my mum had when living on her own was she would forget what she already had so go to a supermarket and be seduced by offers. So her flat was full of overstocks of everyday things. At this point, and certainbly at the point when she ceased driving, Internet shopping might have been the best option.

Social services should be able to give you a list of activities, memory cafes, and University of the Third Age.

I would add that perhaps you should not take too much note of the score. At one point my mother tested only one point off normal, yet clearly was not coping. Instead treat it as an early warning to observe what skills may have been lost. But celebrate that at the moment she is doing really well, and build trust that you will try to do what is best for her.

And I think you are right about her not moving now. The end stages of dementia are so miserable, she should enjoy as much of her life for as long as possible.

It sounds as if she is doing very well still with a lot of independence still.

You don't need a diagnosis to activate a financial POA, think this might her something specific to her Solicitor. Probably would be helpful to get it into the OP to register it now, one less thing to worry about.

Can see what you're saying about the AA. Maybe best to leave it for a bit then.

For the med check at Memory Clinic they checked heart rate and blood pressure I think and asked about side affects. My Mother didn't tolerate the Galantamibe well with her stomach so switched in the end to another which she only recently stopped taking. They were very helpful when she thought people were knocking in her door at night and did a home visit plus visited her in a couple of the NH's.

She us actually settling fairly well at the moment and even allowing them to do her legs. She likes one of the Carers to sleep in the same room as her which I never thought would happen. And the dog still visits and sleeps on the chair on her terrace. Think things are on far more of even keel, for now.

Thanks guys! I think I will call into the solicitors when I am home with all the papers I think I need and ask them if POA will affect her withdrawing money from her own account. I wonder when her cash card expires too - getting a new one might cause problems...

And thanks, SugarPlum - AFAIK she is OK on the Galantamine, but I need to think of other things I should ask whilst there!

Glad to hear your mum sounds settled ATM

Hi everyone. After 37 pages I just wanted to reconfirm that this thread is open to all. Dementia is a long term illness and so it is inevitable that some of us have been around for a long time. But everyone is welcome, if that is the right word. Sympathy is guaranteed.

Oh and obviously it not just dementia. Our poor parents, losing their independence either through mental or physical frailty or both. And poor us.........

Hello everyone in the club no one wants to be in. Just thought I'd check back in. Visited Dad yesterday- have boiled it down to every 3 weeks, and in a way it is now more for my brother than my Dad. Dad is now frail, underweight (but eats for England, which is odd), talks in 2-3 word sentences, and (the latest challenge) incontinent . He takes himself to the loo but a lot of the time forgets to pull his pants down. I think his dementia tablet might be causing loose bowels too. There was a stomach churning accident in the downstairs loo (which has carpet, insert horrified emoticon). I did what I could to clean up but will be ringing Age UK tomorrow to ask for a recommended carpet fitter, and get the lot ripped up and replaced with lino. Dad also fell just as I was getting him home from the pub, and i couldn t get him up. Had to get a neighbour to help, and once up Dad showed his appreciation by trying to punch him!
A couple of years ago I would have been upset at these events, now it's just like a slightly tricky day at work. I guess it means Dad is no longer my father, but a job to do. Still, it's better than being how I was then, and I'm grateful for the toughening up I've been able to do.
Wishing everyone on this forum a good week ahead.

bob, that sounds very hard

I am wondering if the dementia tablets will have affected DM that way - she has carpet in the loo too! Just waiting to hear back from her bro and SIL who went to visit this weekend and messaged me to say that it was quite tricky to understand her...

Hi BTM Dad's on donepezil/ Aricept. Gastric problems are a common side effect. Not sure about the other dementia drugs such as galantamine/memantine though. Can't wait to get rid of that cruddy carpet...

Oh Bob That sounds like very hard work. I was very glad my Mother had all the carpet removed from her bungalow when she moved in. I think she had become a job to do when she left so fully get that.

BTM gastric problems were partly why they took her off Aricept. The Galantamine was much easier on her stomach

Hadn't heard anything from Brother for a bit until yesterday when he rang today he had had a great visit to her. Apparently the one before was a disaster - she didn't recognise him, know who or where she was so is very up and down. He said he's only going to ring me with good news I am now very happy with the care he has got arranged,she really does have a significantly higher standard of more personalised care compared to what she had here plus much better quality of life.

Thanks - she's on Galantamine, so fingers crossed. I must have been dreaming about it last night as I woke from a vivid dream in which she was being sick and I had to clear it up!

SugarPlum, that sounds great news re your DM. And great that your bro is being so considerate - no point in worrying you when you can't do anything and also had to shoulder it all before anyway.

Oh yuck BTM, what a thing to wake up to

I have learnt to take my victories where I can get them so really pleased. Obviously not good that some days she doesn't know Brother or where she is. But great that she can sit out with him on her terrace sipping a beer and have a laugh with him some days. Plus sort of has a pet dog !

Thanks for your kind words SPT. Who would have thought a couple of years ago that your mum would now be your brother's responsibility, and living near him! Weird as it is, Dad's dementia means bro and i have a better relationship than we ever managed previously. He is so patient, and matter of fact with Dad. However, I don't for a minute think he'd cope if the carers weren't going in every day.

New member application...

Over the last year or 18 months, it has become clear that DMiL's short-term memory is deteriorating steadily. She is a widow, 86, with serious scoliosis thanks to osteoporosis and some issues with continence, but she has Care Line (I doubt she wears the pager). We live almost 300 miles away, and it is a struggle (and at least three days) for DH to visit; he does so about every 6-8 weeks. For a year, we have been pondering moving her to the very pleasant market town nearby where she would be within level walking distance of doctor, pharmacy and town shops. Here we could acquire a wardened flat which is the base for a small caring service. This gets her brother's vote as he is 24/7 with his dependent wife. The plan on DH's last three visits has been to bring her to stay for a week or so so she can see one of the apartments and decides whether she likes it, but every time the moment arrives for her to get in the car, she takes to her bed. Broadly, the idea would be to visit most days to help with shopping and catering etc, plus DH will pop in a few times a week and she can come over for Sunday lunch whenever. If there's a problem we would be on the spot to help.

Lately, we have started to think that it may be too late to make such a move and have been considering alternatives. SiL lives close to her and has caring experience; she is between jobs, so we have suggested that she be paid a sensible amount to take on the caring, until such time as a home is the only option remaining. DMiL is resisting having any care beyond what she has now (a few hours cleaning and lawn mowing each week), but she is not eating well, forgetting medication, appointments, personal hygiene and generally becoming obstinate about everything, while denying any of the above. We worry about her driving (in case she forgets where she is going or gets confused where she is; it's happened!) and she is reluctant to have SiL involved. She goes on about "losing her independence", and on the better days, she manages albeit I suspect she's exaggerating how well. On other days, she talks about a residential home.

So do we need a care home near us, or one close to where she lives now? Her friends locally are dwindling in number, and DH would like to see more of her. I think we need a plan ready to implement at a moment's notice, but what? DH has POA and has sorted out her bank accounts and finances so we know she is solvent, but what are we missing? Thank you all for any advice and helpful tips. We don't want to take over, just provide a caring safety net.

Hello and welcome although it is not a club anyone relishes joining!
Your DMIL's story sounds very familiar, especially the gradual loss of abilities coupled with a stubborn denial that anything is amiss. I've been there twice (grandfather then father) and it strikes me as a very cruel trick dementia plays to the relies of those affected- as if trying to ensure that helping will be sabotaged.
Anyway, I think if you are involved (which you obviously are)it is absolutely legitimate to try and get things to be as convenient for yourself as possible, which in your case means close to you. By all means ask SIL if she can step into the carer's role, but being carer to a person with dementia can be horrendously stressful and lead to family rifts. If she says no, you may just have to accept that. Ask her if ( if and when it comes down to it) she wants her mum in residential care locally , or would be open to her moving close to you as there too there is potential for fallout.
Meanwhile , if MIL carries on in her merry way clinging onto an illusion of independence and refusing help, many of us on this thread have found that a crisis is the only way to bring about change. Of course it would be better if she accepted help, either from her daughter of paid carers/ moved into a warden controlled flat. That requires insight and a readiness to accept change, which many persons with dementia find very hard to muster, so be prepared to step in when there's a crisis.
Do DH and/or DSIL have power of attorney? If not, i urge you to get it before MIL loses capacity and it's too late. Things such as bills, tax returns, banks etc are all but impossible to manage without it.

Oops sorry just spotted you have POA, well done.

Cressetmama, your situation will be so familiar with everyone here.

It is almost a problem without a solution, because we cannot force our relatives to accept help. We don't really know what is "best" for another person and because a person with dementia will change their mind so many times about what they want to happen.

Staying in their home, although not the safest option is sometimes the only comfort and security they have.

I was lucky that by the time my mum went into care, her Alzheimer's was so advanced that she thought it was her own home. If a person does have some comprehension of real life, then the whole concept of a care home can be terrifying. Very often a crisis has to happen before the person accepts the need for further help.

Maybe you could put it to her that the only way she can stay in her own home is to accept the help. No guarantee that she will listen though.

My heart goes out to you. I have had 8 years of this. My mum is in hospital at the moment under the care of the 'end of life team'. But I am starting all over again with her husband, who is 8 years younger.

Hi cressetmama!

All the advice above is good, and I can't add much else - I am relatively new to this (only really stepped things up 6 months ago when we started the diagnosis process), but others are very knowledgeable.

My DM is still "managing" at home (200miles away from me, the only child) with a minimum of carer time, but I know it will need to be increased sooner or later. She is also determined to stay at home. It is probably an easier situation than yours because there is only me to consult with and I have absolutely no intention of becoming her (or anyone elses!) carer as I would be CRAP at it. Plus it just wouldn't work at all in our house. So I am fully expecting a crisis at some point.

florentina, how draining

Thank you for the welcome! As you say, not the club any of us wants to join but I am very aware that my cousins had a torrid time with their mum and we are trying to avoid following in the same steps. Not sure how we can avoid it, but trying anyway.

There isn't a current crisis; SiL is practical and v good, and although tact isn't naturally her strongest point, she is getting the hang of managing MiL. We are trying to make sure we are prepared for anything that arises and kept on top of what's happening with her medical needs but as the GP says, you can't make her do what you think best!

Hats off to all of you. Am learning that this coping and caring gig doesn't seem to be something one can really plan too much. Doubtless there is a crisis in store with cold weather coming but in the meantime, she is warm and relatively safe at home (no gas, except central heating); she feels secure and is still happily playing bridge. I shall check in here regularly, and marvel at the strength and resilience of the human spirit. to you all for your help and advice.