Support for those who care for elderly parents - drop in as you need, everyone welcome

[CMOTDibbler]

All of us would rather not be here, but we need to be - with the people who really understand.

Oh CMOT, the poor cat and your poor parents Good they are getting more of a handle on the blood sugars though.

May I join? I've been lurking for a while. My dad has Alzheimer's, being cared for by my 80 yr old mother. I am 200 miles away and my only sibling is on the other side of the world (though comes back to be with them for a month twice a year).

Dad has just started going to a daycare facility once a week so Mum can have a break (she won't hear of more, but that's a whole other story). Can anyone advise me whether it is normal for there to be no written terms and conditions, or signed contract for this sort of arrangement? We are paying for it ourselves. It just seems a bit unsatisfactory to me not to have any kind of agreement in writing as to eg fees/increases to fees/whether we have to pay to keep the space open for Dad if he is ill and can't go, that sort of thing. When I spoke to the (very nice) manager, she seemed a bit puzzled by the question, so I thought I would ask if it was common practice in your collective experience?

I should have said that the cat was very old, and very fat (as mum could remember that cats need feeding, but not that she'd fed it many times that day!), so it dying wasn't a surprise in any way and had only happened overnight.

Gerbil (or do you prefer Avenging) I don't think there are contracts for day centres, at least the one mum tried didn't. Probably because of the nature of it people are always not going for extended periods so you don't get tied into paying when they aren't there

Welcome Gerbil and sorry you're going through it too. I don't have any experience of daycare as my Motger refused to go. But from what the SW said I got the feeling there were various terms and conditions in place.

Gerbil, I don't know about day centres but my DM went into a home a fortnight ago and no one has contacted me about paying (she will be self-funding). I will be going up in a week so will hopefully be able to sort it then - maybe you should just wait until they contact you?

Sympathies on the distance thing too - I am also 200 miles away!

Thank you all, that's helpful. I will hold fire and see what happens - I don't want to make a hoo-ha about paperwork if it is not essential! On the plus side, Dad is at least willing to go to the day centre, and they seem to be good people doing the caring.

End of another week and the breast cancer issue is still going. They want to do an excisional biopsy now but there's the question of whether she could withstand it under a local and are talking general. One of the possibilities is that it's inflammatory breast cancer the report said. Professor thinks an 80% chance it is malignant.

Sorry to hear that, Sugar.

Oh dear Sugar

Have had a few (quite funny) unintelligible conversations with DM - thank god she is in the home and the carers can interpret! She has apparently made friends with another client who has an ensuite and has managed to get moved into an ensuite herself! But she says it needs things doing (absolutely no idea what!) So I will see when I go up this week. I have a load of appointments lined up to sort her finances, etc and have done the mail redirection - thanks!

Hi, sorry I have been missing for a while. DD has just had A2 mocks, needs to complete 3 sets of coursework before the end of term, plus has three University interviews all in the space of 10 days. I am sure she could go on her own but I am being selfish and wanting to spend as much time with her as I can before she leaves home for good, so we are hurtling round the country together.

In many ways it is the same-old same-old. DM is deteriorating very slowly. The latest is a further loss of inhibition which makes her increasingly difficult company. I am having to up her care to provide her with a companion so she can continue to be involved in the social life at her sheltered housing. Its fine. Sheltered housing is so much cheaper than a home, she likes her carer who seems happy with the extra hours, and I think she has not lost sufficient awareness for her to be content within a care home setting. (She was always very independent and dislikes being told what to do.)

CMOT, I am sorry to hear about your dad. My mum lost a lot of capacity when my dad was terminally ill. Your dad has fought so hard for your mum. He has been under huge stress. Perhaps he has given all he had to give and more. And may the cat RIP.

BTM, good luck with the paperwork. No sleath boast. I really own the badge on looking after an elder person's finances, so both know how hard it is (I honestly never managed to sort out POA in a single visit to a bank/building society) and since my mother has over 50 accounts with different institutions, it was a good years work to rationalise them. The latest is that MetroBank require a letter from her accountant before I can open a new ISA. Her passport, the POA and all my paperwork are not good enough. I wish one of the charities looking after the elderly would lobby for a clear and consistent approach. I understand money laundering concerns, but no bank has the same procedures when it comes to POAs. I am happy to help anyone who is finding the process daunting.

SPT. Any chance of you getting out to Thailand? DM had some kidney problems last summer which were probably dehydration but could have been something else. The GP gave me the option but suggested we did not investigate the possible something else, as tests themselves would have been quite invasive. I did not disagree. It seems that your brother considers diong the best for yhour mother includes providing her with the best medical treatment. My brother has suggested the same in the past. I think my father was so much luckier having six months of terminal cancer, than my mum with her, likely, 15 years of terminal dementia. She has already lost the years she might have enjoyed.

Gerbil, first welcome. Second I would be surprised if there were a contract for a once a week daycare centre. If nothing else a contract would be there to protect the provider against non payment. If he goes and you pay, they can't have any claim against you.

And best wishes to everyone else.

Good luck BTM, I hope the trip goes ok.

NMS I've my fingers crossed for your DD and her interviews. I'm sure she would much rather go with you, I'm glad your Mother likes her carer, makes life so much easier.

I can't face Thailand, I don't do well with the heat and have had two horrible bugs which have gone on for weeks and am very run down. We had agreed nothing to prolong life and nothing invasive, but when faced with it he seems to feel differently. I think he feels the lump has to come out in case it is cancer and it ulcerates as thinks we'd be faced with a mastectomy situation. I suspect that isn't the case and have asked that she is reviewed by someone else before decision made as feel we should know all the options. He has agreed to this after announcing previously it had to come out and was the only right thing to do. He came out of previous consultation under the impression the lump had doubled in size in 3 weeks which the report that subsequently came through contradicted. There is a question mark as to whether a general would be needed as well. She's now on a drug to slow her heart rate too. He is struggling with everything at the sharp end of it. Apparently if she doesn't have cancer he's going to put her on a diet to get her mobile again. I'm finding it all quite difficult.

Hello. May I pop in? I did post here once before and you very helpfully guided me through the Power of Attorney process.

Things have progressed a little and both parents now seem to have dementia: I have just got the Health and Welfare POA so will be going to see their GP and have posted a few questions in the new dementia topic area, but copied here in case there is more traffic here.

So mum stopped being able to remember anything recent about 5 years ago, although she does know who I am and who her other close friends and relatives are - she just seems to be deleting anything less important and hanging onto key people and events. She's in a happy bubble/goldfish bowl. Dad has been reasonably healthy until recently and taken on household duties (and both have refused to accept that it is anything other than forgetfulness).

However in the last 6 months dad has also started to struggle. He is losing his language. Most of the nouns have gone now, so conversation is a bit of an adventure. He is letting me help more and more, which is great, and I had the financial POA in place. Finally, they agreed to Health and Welfare POA a while ago and the papers have just arrived.

So I can now see their GP again (who refused to see me without the POA) although he did set up their medication in dosset boxes. I assume I should I be making sure they are tested and diagnosed so that we are in a stronger position to access care services as needed, or asking for a referral to a memory clinic. Is there anything else specific I should be pushing for, now? Am I right in saying that there is no specific "memory medication", other than anti anxiety medication?

Any advice much appreciated. Thank you

NMS, good luck with your DD - you are a year ahead of us! And sorry to hear your DM needs more support, but at least she has a good carer that she likes.
I may be begging for advice on finances on my return!

NQGU, that sounds really tough - both parents with dementia. Your dad losing speech sounds similar to DM - conversations on the phone can be quite ridiculous (in a funny way!) GP's sound so variable - my DM's practice have been fantastic. They accepted a letter signed by her to tell me all and have really gone the extra mile.

I took my DM to the GP nearly a year ago. She did a short memory test (failed badly) and then referred her for scans/bloodtests, etc and a proper memory assessment. The diagnosis of Mixed Dementia (had had a stroke 6 years ago so Vascular Dementia, already on meds for atrial fibrillation) was made about 6months ago, but she was already quite a way down the line. The consultant suggested trying Galantamine (to slow the effects - for the Alzheimers part) and initially it seemed to help a bit.

I would push for assessments for them both at the Memory Clinic via the GP and a Care Assessment from SS. I think this will trigger an assessment from the DWP too - re self-funding or not.

The DWP weren't able to do DM's financial assessment due to her dementia. I guess I should get back in touch and set up a meeting with me...

Hi all NMS best of luck to your dd

NQGU. Referral is really useful. Labels can open doors and there are specific medications - dad is on memantine which is sopposec to help language and it might have done for a bit.

Update on dad- getting slowly better after the traumas of last week. Back to feeding himself and even walked himself to the toilet at tea time.

That's good news Helen - amazing how they improve again when all seems lost.

That's very good news Helen. Bob mentioned how they are like young children and can really bounce back when things look dire.

Hello Notquitegrownup. BTM has covered it but just wanted to add that galantamine made quite a difference to my Mother for a fair while.

Oncologist appointment was today. Brother went on his own yesterday but was going back today with her so they can decide what to do but sounded as if lump likely to come out. The problem currently is that whatever the lump is it keeps getting infected. I can see a general being involved which fills me with dread after the general fir MRI at Christmas - she came round screaming and attacking everyone so had to be put back under then brought around 24 hours later strapped to the bed. I've tried and managed to distance myself emotionally to some extent but I find the idea of a repeat quite upsetting. At least with them being so far ahead I find out the day's events fairly early.

Oh SugarPlum, that sounds tricky. I am sure they will look after her - I guess you just have to trust them to do the best. Fingers crossed.

Thing is sadly I don't trust my Brother. He said yesterday was refreshing as oncologist asked him how he was coping plus didn't charge and that usually he has a battle to get them to 'do what he wants' It's that last bit which worries me, a lot. I still haven't quite got over her being given a general for the MRI. I agreed to a CT scan as she had one before, it wasn't too scary for her and done in 10 mins and she was already in hospital so just had to be wheeled Dow. Then next minute I get a call to say she's in the MRI scanner under a general. I was horrified but too late at that stage.

And him going on about that if it isn't cancer then she'll have to go on a diet and be got mobile again doesn't fill me with joy either to be honest, it sounds hard work for a woman of 77 with dementia in a hot climate.

It must be very hard if he is not doing things how you think he should. He obviously thinks he has her best interests at heart, but I agree that GA's aren't usually the best answer for the elderly. Re diet, is she very overweight? We all lost weight when we were on holiday there - the food is so tasty and healthy!

I think he has her best interests at heart but has a tendency to think he knows the answers and has said in the past he doesn't really trust doctors. He announced by email the other day that taking the lump out was the only right thing to do. It may be but further up the email he said he was pushing for it, I want to know what the doctors think should be done. When the biopsy came through clear of cancer in half term he was due to see the consultant the next day. I asked if he could ask her the rate of false positives and he replied saying I was a worry monkey, it was good news, I needed to relax, he would like to focus on the positives and intended to have a good night so would be hung over and just grabbing the pathology report and not in mood to ask technical questions. I felt patronised and that my concerns were dismissed out of hand.

I'm resigned to the fact it might need to be a general and can see the need for it potentially in this case, the scan general was unnecessary in my opinion and I was really taken aback that it had been done but by the time I knew it was happening . But guess it's all water under the bridge now and just need to move forward and deal with current situation. She is very overweight. I'm just weary as the problems with her have been going on for so many years and were made much worse by the fact my Brother wouldn't even consider the fact she had Dementia for years and didn't come back for 5.5 years.

BTM I have a year 12 DC as well! I'll be so glad when A levels are over as she's a bit of stress head :) Mind you it's not like we haven't done this before... it's just they are all different aren't they!

I've got year 12 DD sick in bed falling behind with her BTEC course which doesn't help.

Just got off the phone and I feel bad for moaning. Oncologist clearly knows her stuff unlike doctors at the other hospital and Brother happy to listen to her and says he is relieved there is someone telling him what to do now. She's done skin punch biopsy, chest X-ray and bloods as thinks it is pretty definitely inflammatory breast cancer. If it is lump will stay in so general is out of equation anyway.

SugarPlum, great that you have a decent doctor and that your brother is listening to her. Hope your DD is OK too.

Yes, the first term was very stressful for DD as she moved to a new school for sixthform as well as the jump up in terms of work, etc. She seems a lot more settled just now, but I'm sure there'll be all kinds of stress when the AS level exams get closer

Just popping in to send support to you all- sorry to hear your news SPT- you must feel so helpless with it all- and the challenge of assignments etc too.
Helen- good news about your dad. They can be amazing,can't they? We are taking photos of mil that fil can keep with him to the home at the weekend- another resident says she is going to marry him( despite her having a husband who visits daily) which is upsetting him a bit. Good luck to your dd on her interview road trip

I was lucky in that three years ago my mother had to be the focus of my time and energy, but things are more stable now. My experience is that Y12 is nothing on Y13. It is horrid. UCAS, personal statements, 18th birthday parties (why was DD playing a board game which involved drinking shots a day before her mocks), coursework, interviews and rejections, and all the emotions that come with tetering on the brink of adulthood. It would be so difficult if I was having to balance my mother's and daughter's demands.

Still a few more months, and then perhaps I will have some time which will be my own, my very own.

The difference now as my children grow towards independence and my mother is increasingly dependent is marked. I promise proper sympathy for you all next year.