No Going Back. . .

DeBlonde

Registered User
Jan 23, 2019
27
Hi there,
Haven't posted for a while, so a potted history. . .

Dad had stroke in December last year.Mum diagnosed in January last year with Alzheimer's, anxiety and depression. Was sectioned (under Section 2) returned home after three weeks, carers going in three times a
day to help them both. Things deteriorated, Dad ended up in a local care home, admitted to hospital, then discovered lung cancer. He died in May. Mum still has carers going in twice a day to give her meds and prompt
her to eat. She has lost lots of weight. Still lives at home, fiercely independent.

For a while Mum has thought that if she was able to demonstrate to her CPN, Social Worker, carers that she was able to take her tablets on her own (she has them in trays) that she wouldn't need to have the carers come in any more. She is self funding. Obviously the family know that this will never be the case and that she'll need the carers in place until such time that things deteriorate and she needs to move into a care home. But for now we're keen for her to stay at home.

Today she has had a row with the lovely carer saying that she wanted to take her medication on her own now. How can we explain kindly to Mum that this isn't going to happen? Mum is lucky to have family members around her who visit, but other than that she doesn't have a huge social circle and shies away from things like memory cafes and lunch clubs held locally.I try to visit as often as I can, I have a part time job and a family of my own, talk to her on the phone and sort out any problems that arise. I have Power of Attorney for Finance and Health, so keep track of her finances, bills etc.

Thanks :)
 

Bunpoots

Volunteer Host
Apr 1, 2016
3,781
Nottinghamshire
Hi @DeBlonde

I had problems with my dad being determined he could take his medication on his own and he would refuse it saying he’d take it later...and he didn’t - it’d still be there when I went back again.

I don’t know that there is any way to explain to a PWD the reality of their situation as they always “know” that they’re doing fine thank you very much...and we know they’re not.

With dad this phase went on for a long while and drove me, my daughters and his other helpers nuts at the time as he would not listen to reason and what should have been a quick visit to remind him to take his pills could drag on for hours.

What eventually worked was:

Place pills on coffee table, pretend dad had put them there himself, put glass of water in his hand saying “here’s your water so you can take your pills” and wait for him to take them pointing out any missed ones if necessary...all the time acting as if it was all dad’s idea.

I eventually realised that this was the approach that worked with most things - but not always straight away.
It would often take more than one attempt if he was being particularly stubborn and I always approached him as if it was the first time - even if it was the sixth :rolleyes:
 

DeBlonde

Registered User
Jan 23, 2019
27
Thank you @Bunpoots for your reply.

They always think they know best, don't they? Sadly I live too far away from Mum to do this, so carers visit, just for the minimum time which is half an hour, to make sure Mum's eating (or, at least has something out of the freezer to eat later, and to give her medication). Mum resents paying for these short visits and because she's so fiercely independent (which is good) it's difficult to suggest things they could do to help, because Mum can do most things on her own.They will collect shopping, etc if she asks them, but this is rare! I already have the invoice sent to my house so that the stress isn't repeated every time it arrives. :)
 

DeBlonde

Registered User
Jan 23, 2019
27
Hi,
I have just had a chat with her social worker who has suggested that we deal with this by saying that the decision has come from the Older Persons Mental Health Team. This makes sense to me because it means that, although Mum will be frustrated by this decision, it isn't a decision that I have made. But I'll still have to cope with her reaction to the news :rolleyes:
 

Bunpoots

Volunteer Host
Apr 1, 2016
3,781
Nottinghamshire
Hi,
I have just had a chat with her social worker who has suggested that we deal with this by saying that the decision has come from the Older Persons Mental Health Team. This makes sense to me because it means that, although Mum will be frustrated by this decision, it isn't a decision that I have made. But I'll still have to cope with her reaction to the news :rolleyes:
I hope that works. At least she can’t blame you!
 

Hair Twiddler

Registered User
Aug 14, 2012
892
Middle England
I hope that works. At least she can’t blame you!
I had to smile wryly when I read your note Bunpoots. You never met my mum. I tried similar "the doctor said this is what must happen" and the reply I invariably got was along the lines "THIS IS ALL YOUR FAULT...you never stick up for me and tell them that I'm perfectly fine DO YOU!"
Tricky one ...the truth will cause upset and pure disbelief, a lie would leave us in an impossible situation and back to square one.
All I can suggest @DeBlonde is that you also tell your mum that a Consultant is aware of the advice and (if you're daring) a hospital Solicitor too. My Mum would dismiss doctors as being "jumped up" but the words Consultant and Solicitor still held some sway...until the next time.
:)
All the best, Twiddler x
 

Sarasa

Registered User
Apr 13, 2018
835
Could you suggest that the visits are from someone in training who needs to see how someone capable takes their medication?
 

Rosettastone57

Registered User
Oct 27, 2016
1,150
@Sarasa and @Hair Twiddler - both great suggestions - thank you :)
Hi @DeBlonde , this is what we did for my mother-in-law . She had carers 3 times a day for 3 years and they were there to make sure she had something to eat drink, prompt medication. She lived on her own and as my husband and I worked full-time we were simply unable to spend all our spare time with her . Of course as far as she was concerned there was nothing wrong with her. When we used to be confronted with her saying that she didn't need the carers and they were a waste of time, my husband used to simply tell her it was not negotiable it was something the doctor had ordered. She was self-funding but we never told her the full rate of what she was paying if we had done so she would have sent the carers packing at every visit. As we had power of attorney for property and finance her post was redirected to me so she never saw any statements from the care agency.

The care agency were also in on the following ruse which we had prepared with them in advance. When she used to say that she didn't need the carers because she could take the medication herself, I used to tell her that the lovely ladies who came round were trainees from the care agency. They were training to see how it was to deal with "normal people" who didn't have dementia but simply had physical problems. Then they would know what to do when they had to go to those people who had dementia. One of the reasons that we employed a care agency was to try and encourage her to get out of bed and she would lay in bed all day without eating or drinking. When I told my mother-in-law that the trainees were coming round this seemed to motivate her to get up ,wash herself of sorts and get dressed before the ladies had arrived. With my mother-in-law it was all about her not wanting to be seen as different to someone else.
I'm afraid you'll have to be really devious with this illness
 

DeBlonde

Registered User
Jan 23, 2019
27
So today Mum has decided that, despite being invited to both her sisters/our house for
Christmas that she would prefer to stay at home on her own. She would have been collected/returned to either house at a time of her choosing. I appreciate that this is her/our first Christmas without my lovely Dad, who would have been down here like a shot, but I can just see what's going to happen. We'll get a phone call from her saying "is anybody coming today?" just as we sit down to eat. Then I'll probably get upset and that'll be another Christmas ruined.

I think I'll just organise the carers to go in as usual and I'll call her during the day to make sure she's ok! I think I/We deserve a decent Christmas after the year we've had! I'm sad that she doesn't want to be with us , but appreciate that it's her first Christmas without Dad! :(
 

Sirena

Registered User
Feb 27, 2018
2,042
I agree you have to ensure you get a good Christmas. I suspect your mother is at the stage where, despite thinking there is 'nothing wrong with her', she can no longer make decisions, so you have to do all that for her now - without her realising you're doing it.

Either organise carers, or just turn up and pick her up. I suspect whatever you do, she will think it's the wrong thing so do whatever will work best for you. If you want carers you will need to get on the case asap, I had to tell the care agency a couple of weeks in advance so they could ensure they had someone willing to work.
 

Betenoir71

Registered User
Jun 20, 2019
19
Hi,
I have just had a chat with her social worker who has suggested that we deal with this by saying that the decision has come from the Older Persons Mental Health Team. This makes sense to me because it means that, although Mum will be frustrated by this decision, it isn't a decision that I have made. But I'll still have to cope with her reaction to the news :rolleyes:
Absolutely. It will always be complicated if it seems the decision comes from from you, that’s what professionals are for and a good team will be happy to support you with this, good luck, xx
 

DeBlonde

Registered User
Jan 23, 2019
27
Ok, so recently Mum started hallucinating (was seeing small children sat on her sofa) Her CPN started her on a low dose of Risperidone which seemed to be having a good effect. She has an appointment to have an ECG on Monday because I think we're going to have to increase the dose.

Tonight she called me saying that "whoever lives in this house with me is having a relationship with someone upstairs, they never have any washing for me to do and I never see them"
Mum lives alone with carers going in twice a day. I try to reassure her when she calls me to tell me what she's experiencing. I suggested she put the radio/television on and turn the volume up. I dont know how to convince her that there's nobody else living in her house. Does anyone have any ideas of something we could try. I have suggested locks in the front bedroom door, but you may have better ideas. . .
 

Rosettastone57

Registered User
Oct 27, 2016
1,150
Ok, so recently Mum started hallucinating (was seeing small children sat on her sofa) Her CPN started her on a low dose of Risperidone which seemed to be having a good effect. She has an appointment to have an ECG on Monday because I think we're going to have to increase the dose.

Tonight she called me saying that "whoever lives in this house with me is having a relationship with someone upstairs, they never have any washing for me to do and I never see them"
Mum lives alone with carers going in twice a day. I try to reassure her when she calls me to tell me what she's experiencing. I suggested she put the radio/television on and turn the volume up. I dont know how to convince her that there's nobody else living in her house. Does anyone have any ideas of something we could try. I have suggested locks in the front bedroom door, but you may have better ideas. . .
You won't convince her, just go along with it. What about saying you're going to deal with it next time you're there ,hopefully she might forget in the meantime. This sort of thing is very difficult to deal with.