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Dementia Frustration - An Alice in Wonderland Life.

(16 Posts)
icanhandthemback Thu 19-May-22 13:24:22

My Mum has Alzheimers and Vascular Dementia. She is obstructive, occasionally violent and has a complete disconnect with what she feels she can do and what she actually does. A couple of days ago, she was admitted to hospital by ambulance as she was completely unresponsive to any stimulus or communication.
Over the last few months, she has become increasingly immobile and as her primary carer is the same age as her with ankylosing spondylitis and poor memory, he is literally on his knees with fatigue even though we have daily care too. As her NOK and LPA, I took a decision that she should go into respite care on discharge from the hospital to give him a break. I explained this to the hospital and asked them not to say anything to her until we were nearing discharge as I don't want her to be anxious. Oh no, they will decide if she should do that with her. A Social Worker has already had her tested for capacity and determined she hasn't got it. The hospital aren't interested. The previous Falls Team and OT despair of her as she won't be helped where she is so deluded.
This morning I had a call from a very nice Physio who has been talking to a very sweet old lady who they managed to assist into a chair. She tells them that she only uses a frame whilst out and about but walks totally independently at home. She has her bedroom upstairs but as she has a stair lift, it is no problem to get about! None of this is true and, as she punched a member of staff yesterday, she has already shown them what we have to put up with.
I despair and every time we go into hospital (the same one) we go through a similar thing. It is just so stressful.

Liz46 Thu 19-May-22 13:48:56

I don't think I can help but sympathise. My mother had dementia and in the end, when I was sitting next to my husband with tears dripping off my chin, he said 'it's either your mum or me.

We found a very nice residential home who were willing to take her after she had had a trial day. One of mum's neighbours was a hairdresser who goes round homes so she knew which ones were good.

Social workers were awful.

Chocolatelovinggran Thu 19-May-22 13:50:27

icanhandthemback - what a nightmare. I can offer no practical advice, but sending you ❤ as you deal with this impossible situation. Hopefully, respite can be arranged to give everyone a break, and some medication could be sorted, as this, sometimes reduces the anxiety/aggression.
Wishing you luck.

GrannyGravy13 Thu 19-May-22 14:12:34

When my stepfather who had vascular dementia was admitted to hospital after a funny turn we were so grateful that both the medical staff and discharge team recognised that he couldn’t return home. He was kept in hospital until an appropriate home could be found and they would accept him.

Mum was on her knees, and couldn’t cope any longer.

Please try to speak to the head of discharge and express your concerns.

Witzend Thu 19-May-22 14:20:01

Thank goodness we never had to deal with SWs when my mother and FiL had dementia, but I’ve heard so many stories of them choosing to believe someone with dementia, when they insist that they can still manage perfectly well. (Which they may well believe, since they can’t remember that they can’t!)

Not to mention when someone badly needs 24/7 residential care, a SW will ask them whether they’d like to go into a care home.
To which the answer will almost inevitably be No!
I have actually seen this ‘live’ on a documentary about dementia!

I’m afraid that a good many professionals (I include some GPs in that) are clueless about dementia. They may have had ‘training’ but they still fail to understand the practical realities.

E.g. a GP telling a relative that if someone can’t remember to take their medication, all you have to do (it was said oh so helpfully) was write it down for them.

No conception of what short-term memory loss means in practice, i.e. even if they do remember to look at it, the person will very likely forget the instant they turn their head away.

Ditto, ‘Well, you could always phone to remind her.’
Yes, and she’s going to forget whatever I said almost as soon as she’s put the phone down! 🤬

If I were going to do dementia training, I’d include a session where at some point I’d ask them to complete the task I gave and explained to them 3 minutes ago.
‘But you didn’t give us any task!’

There you go - that’s the reality of short term memory loss.

Liz46 Thu 19-May-22 15:02:52

I'm afraid that I used to lie to my mum. When I visited her, she would ask when she was going home. I would ask if the doctor said she was ok to go and she would look uncertain.

I would ask her to check that she had her key safe, which was quite a rigmarole. When she found it I would say 'well that's all right then, you will be able to get in'. It seemed to be less cruel than reminding her that she would not be going home. The house had been sold and we were using the money to pay the home.

fiorentina51 Thu 19-May-22 15:35:39

I had this situation with my 89 year old Aunt. She lived on her own and was constantly having falls and ending up in hospital. Care packages were put in place but she didn't cooperate with carers and often sent them packing. My life and that of my late husband revolved around her care needs.
I eventually had a melt down when I was called out by the carers once again the day before we were due to go away for a few days. They had found her covered in excrement and her house also in a similar state.
The paramedics told me to go home, they would take her to hospital for a check up once she was clean and insist she be assessed for capacity.
I had a phone call later from her social worker telling me what to do when I visited that night.
I told her I wasn't going to visit and that I was going away and that she was their responsibility.
That seemed to galvanise the authorities and she was admitted into respite awaiting assessment.
She eventually went into full time care and was well looked after in a home where she was safe and happy for her remaining days.

Marydoll Thu 19-May-22 16:04:18

A similar thing happened to me with my mother, when she was admitted to hospital with a broken hip and UTI.

She had fooled her GP (who was also mine) for years, convincing him that she was fully compos mentis. Her house was filthy, she wouldn't let me clean it, she smelled awful, but would hit me with her stick, if I tried to clean her up, she was hallucinating about spiders, crawling all over the walls. She also needed lots of work done in the house, she wouldn't let workmen in, but was letting strangers in. I was at my wits end.
She constantly phoned my school asking to speak to me. I was on the verge of a breakdown and her behaviour was impacting severely on my physical health too.

Initially, she fooled every one in hospital, telling them that she lived with me and I was giving up my teaching job to take care of her. A meeting was held without informing me and after believing all her lies, it was agreed to send her home.

I demanded a meeting, turned up wearing splints up to my elbows, due to an RA flare up, caused by all the stress and said I could not afford to give up my job, as I was supporting the children and there was no way I could attend to her physical needs, I could hardly dress myself.
I asked about the hallucinations, she was experiencing at night in hospital, the staff knew nothing of this.

It was decided that a geriatric psychiatrist, should see her. She didn't fool him and we were told, she would never be able to go home again and was sent to a respite, ward, until a place could be found in a nursing home with medical care.

She had skin cancer and had refused treatment for the basal cell carcinoma which had been on her face for twenty five years, despite it was starting to eat into her head. She had one dose of radiotherapy while in that respite ward, before she died. She never made it to the nursing home.

The last straw, was discovering the huge debt, she had accumulated and trying to find the cash to pay it off.

You have my utmost sympathy, icanhandthemback. 💐

Hithere Thu 19-May-22 16:22:46

Sadly, certain medical conditions need professional care and the traditional idea of home care by relatives is a recipe for disaster

kittylester Thu 19-May-22 16:29:26

Are you in touch with the Alzheimer's Society? In some areas they have an advocacy service

Is there an Admiral Nurse in the hospital? Or ring the Admiral Nurse Help Line. That is nationwide.

kittylester Thu 19-May-22 16:31:05

www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/

Admiral Nurse helpline in on this link.

62Granny Thu 19-May-22 16:35:49

You mentioned an Lasting power of Attorney is it for health or just financial? Have you taken a copy into the hospital for them to record it on her notes. You need to call the PALS team ( Patient Advise and Liaison Service) at the hospital and tell them that your wishes as next of kin with an LPA are not being taken in consideration.

Witzend Thu 19-May-22 16:37:33

Liz46, I lied to mine, too. For quite a long time after she moved to the care home it was an endless repetition of, ‘Have you come to take me home? I want to go home!’

Eventually I started saying I was looking for a nice little flat for her, just down the road from me, and once I found a really nice one, we’d go and have a look together.

She’d been an inveterate ‘mover’ and had often talked of ‘a little flat’ so this worked very well. I must have repeated it countless times - she never remembered that I’d said the same before.
On the Alz. Soc. forum for carers (I was on that forum for years, hence the username that I couldn’t be bothered to change) these are known as ‘love lies’, i.e. you say whatever will keep them happy (or at least in less of a tizz) for the moment.

I told so many over the years, if I were Pinocchio, my nose would have grown long enough to encircle the earth!

icanhandthemback Fri 20-May-22 10:26:07

Thank you all for your comments. Can I just say that the Social Worker has been fantastic up until now and I have been to the hospital to ask them to talk to him so they get an unbiased view of the troubles we are having with my mother. Fortunately her lies yesterday did assist our case a little but we still have to get through her capacity assessment. Fingers crossed that we will get a sensible Dr but having been through this before, I am full of anxiety as is her partner.
The hospital have the LPA on record and we would have less trouble if we didn't fall between two counties where the Dementia Team who usually deal with her are in one county and the Social Worker in another.
Witzend, how right you are about short term memory. My mother sits with the phone ringing in her hand but can't work out how to answer it most days. The District Nurses have had to come into give her medication for a long time now so I am hoping all these things back us up.
I pointed out to the Dr yesterday that it was perfectly ok for Mum to make her own decisions but it was equally ok for us to say we do not want to care for her as it is too much. On that basis, they would have to find her care...the Dr was slightly taken aback about how firm I was on the subject. I am normally a bit of a pushover in these situations!

Squiffy Fri 20-May-22 11:34:02

Witzend If I were going to do dementia training, I’d include a session where at some point I’d ask them to complete the task I gave and explained to them 3 minutes ago.
‘But you didn’t give us any task!

There you go - that’s the reality of short term memory loss.

I think that is an inspired idea! There are so many professionals who have absolutely no idea of the reality of dementia and what the carers have to cope with day in and day out.

icanhandthemback Sat 21-May-22 15:03:19

Update: Despite my Mother's delusions about her abilities, her untruths to the hospital staff about the equipment at home, etc, the Doctors have determined she has capacity about her care and therefore, if she insists upon coming home, she can. Her partner is in bits and is being traumatised by their deliberate drive to get rid of her and not have to contribute to her funding. We haven't asked for funding but apparently by law, they have to if she can't cope medically.
I am so stressed by this. Last year we had a similar situation and they would not listen to us at all. This year we have the backing of a Social Worker; they still won't listen. The Dementia Nurse has backed us; she hasn't the legal authority to make that decision. The Dr I talked to 2 days ago felt we were making the right decision but is not the one who would make the capacity decision either.
On the surface, my mother is still quite articulate about what she wants but has not the ability to risk assess. She is catheterised but can't remember to empty the bag even if she could open it with her arthritic fingers. She can't cook, make drinks, use the phone, press a help bell, recognise when she is dehydrated, mobilise herself, etc, etc. Is it me? Am I missing something. It is a bit like saying that a 4 year old can manage by themselves.