my mother

[carlton ann]

My mother was formally diagnosed with Vascular Dementia nearly 3 years ago, but when talking with my brother we think her problems go back some 6 years.
My father and mother have been in the care home system for 21/2 years, but have recently (July) moved to a home closer to myself due to my health taking a down turn. Father has been put on palliative care due to prostrate cancer going into his bones, and has been invited to go on a day release to the local hospice.
Last Wednesday my husband and myself went to the home for our visit, to be greeted with mother swearing and shouting and spitting as she did so, saying she does not like where she is. Dad ignored her. I was going to leave and get a drink from the kitchen when he got agitated as I had not sat down. So we started to talk to him (shout as he has no hearing aids that work). Next minute mum takes her apron ties and fastens them around her neck and pulled tight. Husband to the rescue, I alerted the carers. When the commotion stopped we asked why she did that, "because I can".
My question is this behaviour likely to be her dementia or could it be that she is jealous of the attention that dad is having and the fact he is going out without her? They have referred her to the Dementia team for an urgent assessment.
Any thoughts appreciated.
She can't do it again as the apron has gone, much to her disgust

 

[Lindy50]

@carlton ann
I'm sorry to hear about this difficult situation. It sounds like a combination of dementia and circumstances to me. Yes, your mum probably senses that something is changing and that there's a lot if concern for your dad - but due to her dementia she can't understand things fully, nor think through the implications. I'd imagine the confusion adds to her distress....the apron was her way of asking for help / expressing anger, confusion, worry... Difficult to know which emotion predominates.
Incidentally, my mum shouts constantly in her care home. When I asked her once why she did it, she said exactly the same..."Because I can". Frankly there's not much else she can do - maybe this applies to your mum too?
Sorry, this is probably not much help but I wanted to respond to your message and to wish you well with the assessment, your own health and your dad's. You've got a lot on your plate!
Love
Lindy xx

 

[carlton ann]

Lindy50, many thanks for your comment on my thread.
I thought I would update my thread. Went to see them today, mum didn't know who I was but once I advised it was her daughter Ann she was ok. Hubby was not recognised throughout the visit. It would appear during the last week she has been shouting at anybody and getting verbally aggressive with my father. They have had to place her in another lounge as dad is getting upset.

 

[Lindy50]

Good to hear from you @carlton ann
I’m sorry things don’t sound much better, but hopefully the care home are managing the situation well?
Any news from the dementia team?
All the best
Lindy xx

 

[carlton ann]

We have been to the care home again. Dad is now on a catheter as he is unable to pass fluid, but does not understand what to do with his bowels, staff are taking time to explain over and over again.
Mum I don't think she knew I was her daughter, but I was ok as I had been before.
The Chiropodist came whilst we were there. Mum started her screaming as soon as it was her turn. Whilst she was doing her nails she was kicking out and screaming that they were going to make her bleed. When I said that she was scared as she is on warfarin she said I'm being treated like a rat! Which I suppose is correct in her world.
She also was taken to have her hair cut, again terrified, 'because they will cut my ears off'.
She looked less scary with her hair cut and she still had 2 ears.
The staff say that she is now refusing to eat and drink so they are monitoring her weight and fluid out put.
As we were leaving mum said I'm on another list, when asked which list she took her finger and ran it across her throat.

All things considered it was not a too bad a visit.

 

[carlton ann]

Just thought I wold give another update.
Last week we went to the care home and were going to take them both out in wheel chairs to the local park as it is only across the road.
Mum was having nothing of it, would not get out of her seat, and she did not need to go to the park as she has her own Parke ( her maiden name )
Dad was willing to go, but then an ambulance came to take him to the hospital for an appointment. Dad went with a carer from the home, we tried to talk to mum about anything but she was having none of it, got her to drink and then she wanted to sleep so we left.

Whilst I was at the care home I asked about the dementia referral, they are still awaiting a response. They mentioned that dad was not coping too well with the hospice visits, and they had looked at a tick list they hold for CHC funding, he satisfied that so they had sent it off. Last Thursday I received a phone call to say that a CHC funding meeting was being held at the care home on 30th October and that I should attend to put over how dad has changed recently. There will be staff from the home and also a social worker and another person who is responsible with completing the form. HELP what do I say?

 

[Lindy50]

Hello @carlton ann
I’m sure there’s a whole thread somewhere about CHC funding - but I can’t lay my hands on it!!
Best I can do is to direct you to this publication which I hope may help you to prepare for the meeting:
https://www.alzheimers.org.uk/get-support/publications-and-factsheets/booklet-when-does-nhs-pay-care
Mainly though, they’ll be looking for your personal experience of your dad’s condition.
Good luck !
Lindy xx

 

[carlton ann]

Lindy50
Thank you for your comments, I will do a little light reading in my spare time.
I thought there was a threads on CHC funding so will re-read those also.
I do appreciate your comments on my thread.

Ann

 

[carlton ann]

Well, we have been to the Care Home again.
They have had the runs, dad got them but not mum. He cannot understand as to why he has been in isolation for a few days, and I'm sure he cannot remember having the runs. We are back on the moaning loop, its now too noisy there? Mum had a join in and said she wasn't staying there so yet again we closed the door on that conversation with a white lie by telling her that the previous home had closed.
She is obsessed with talking about an aunt of hers, have you seen her-No, have you heard from her-No. Do you think she is asleep-I don't know. etc Truth be know we do not know what has happened to her, but suffice to say she would be VERY old if still alive, but we answer truthfully we don't know anything.
Dad has an hearing appointment on Monday, went to locate his broken hearing aids, but just found 2 empty boxes, so where they have gone I do not know. Hopefully they can get him some more hearing aids sorted as we really have to shout at him to hear, then we get told off by him for shouting!

 

[carlton ann]

Hubby decides to tell me today that whilst I was on the hunt the hearing aids he was on the floor as she was crying as it was covered in blood. He was showing her that his hands had no blood on them and then she calmed down for that, but then started to say that they were talking about her on the TV. I'm so glad I missed all this excitement looking for the hearing aids

 

[carlton ann]

So we have been to the care home again.
Dad should have gone to the hospital for a hearing appointment yesterday. The transport took him to the wrong hospital and nobody was available to transfer him to the other. Yet longer now with no hearing aids.
Mum, we were advised was in a good mood today, well she was until she saw us. Not too bad but nobody could look at her as she transferred from the wheel chair to the arm chair in the sitting room. She then had a cup of coffee and we talked about our weekend away at our caravan. Her comment was that she went in one last year. We played along, but it was at least 45year ago.
She now wants her bus pass to visit an aunt as per previous threads, advised that she does not live in Derbyshire anymore so it wont work!
We left them both going for dinner.
Next Tuesday is the meeting regarding CHC for dad.

 

[carlton ann]

Well today we eventually had the CHC meeting. It was planned for 10am, by 10.30 nobody had arrived. The care home contacted the social worker, who said it had been changed to 2pm.
We left the care home and went to the pub for dinner, arriving back around 1.30pm where we noticed that a medical person had signed in. She was waiting in the meeting room and we were shown in. I have to say she did put me at ease and went through the process and what her role is. The social worker arrived after 2pm and the meeting started. Some 2hrs later it closed, the social worker said I'm going, but before she did she confirmed that we should contact them if parents savings fall close to the £23500 limit each. The medical assessment person was again better at asking if there was anything else I had to say, so I mentioned some things that I had written down.
This is going before the panel on Tuesday, so we are having a quick turnaround.
My hubby spent the afternoon with mum, she has a cold and spent most of the night coughing so she went to sleep this morning, refused dinner and has hardly drunk anything. She is struggling to pick the cup up to her mouth.
Dad is having trouble with his catheter and is getting medical intervention on a regular basis. He had his changed today again. He is in severe pain with this as his bladder is having contractions and his testicals are sore where his urine has over flowed from his catheter
As we left dad is crying in pain and is wanting to die. The staff have heard him this time so they are trying to comfort him.
Hopefully the next post will be in a weeks time.

 

[Lindy50]

@carlton ann what a day you had !! Hope the outcome is good re the funding, and that your dad in particular can find some relief - your mum too - well, all
Of you really!
Lindy xx

 

[carlton ann]

Thank you Lindy50.

We went again yesterday. Mum still has a cough but the Doctor and 111 doctor have seen her and say it is viral so nothing they can prescribe. She looks, sad and angry at the same time. She is struggling to swallow due to cough. Hubby assisted with drinks whilst we were there and she did eat a biscuit- chocolate digestive. Ended up with chocolate all over her face fingers and clothes as it too so long to eat. She seemed to be sucking it, playing with it in her mouth and putting it into her cheeks. I know they have had to start spoon feeding her yogurts. If her cough goes and her swallow does not come back it may be a referral to SALT team and see what happens? Still not heard when the dementia team are going to visit. Her mental state has taken a dip. My brother did a monthly visit during the last week and she thought he was her dead brother. At least he got a name.

Dad well he is having district nurses visit him quite a lot. They are doing catheter changes, bladder washes and flushing out of the catheter. It was horrible to see him yesterday as he shouted and rocking in pain. He is trying to stand to get away from the pain. His meds yesterday for oramorph were increase in strength. They believe his pain is his bladder constricting. He has been told to drink more, but to him what goes in comes out from where the pain is so no extra fluid. They are going to speak to a consultant regarding meds for this issue. He is begging for 2 tablets to finish him off or a long rope to hang himself with, and he does not care who hears him.


No news on the CHC funding

 

[carlton ann]

Just thought I would update my thread.
Dad has been given 1/2 CHC funding according to a phone call last week from the Care Home. I am still awaiting formal notification of this.

The Care Home have now moved him into the nursing care side. Much to his disgust. He has lost control of when he moved and is unable to see that the nurses in the CH can care for him better than the district nurses and his problems can be cleared up quicker. He has moved into the newly set up palliative care bedroom. He is now trying to get control back by asking continually if he has any toothpaste, and handkerchiefs.

Mum's anger has increased towards us, she thinks she can live on her own in her property and cook. We are now using her age to say she cant do this. We are assuming that the anger is because dad is nolonger on the same floor as her, but they spend their time together during the day as before.

Signing off now as I am heading to hospital for an operation to see how bad my cancer is now (womb)
Take care all you carers out there. Stress is an evil word and a body damaging curse.

 

[Shedrech]

hi @carlton ann
good that you know your dad is where he needs to be, and that the staff will look after him and your mum

every best wish that the operation has the best result for you

 

[canary]

People with dementia dont cope well with change. Hope both your parents settle soon
Fingers crossed for your op
((((((hugs))))))

 

[Lindy50]

Hi @carlton ann
Thanks for the update. I hope your parents settle soon - it's good that they're getting the care they need and are still able to spend time together.
Best wishes for your operation X
(((Hugs)))
Lindy xx

 

[carlton ann]

Thought I should come back and advise where we are now.
Mum is coping quite well with dad being on the upper floor of the CH.
She sometimes refuses to go and sit with him, I have no issues with this as this is preparing her for when he passes. The downstairs staff keep her occupied. She baked an xmas cake today in her mind. Then looked and said she should be making one for real not talking, took one look at her hands and realized that they shake too much for her to hold the bowl. We pointed out that a bowl of mixture would be too heavy. She wanted to know then would she ever get better and go home. Tactful response given, but no as Dr W... told her she never would. All ok after that although she has lost her watch. Never worn one at home but since in care she has not taken it off apart from the obvious reasons. Could not locate it this week. Will try again next, or buy her another for xmas.
Dad, he is now suffering with constant heartburn or so he tells us when he has seen us for the last 2 visits. Carers are asking him regularly and no he has no problems. Think he just needs to moan about something when he sees us. Even brother doesn't get this. Maybe we ought to do a joint visit and call his bluff!
Thank you for your wishes about my health. Saw the consultant on Friday just gone. The stuff he has prescribed is working and I have had a sample taken which is cancer free. Next due to see him in April 2019.

 

[carlton ann]

Thought I would give you an update...

Mum has now got her watch back, they have found it, with another resident I am lead to believe.
It is now to live in the top drawer of her bedside cabinet. She does not go in there, but if we need to show her we can. Yesterday she was weeing for England in her pads, getting distressed as she did it as she was being dirty. Asked the CH to check her for infection as she mentioned burning. Her left hand is now useless as it is curled right round and she cannot hold anything in it.

Dad was on form last week, being spiteful and demanding. Hubby said he would not let me sit next to him and kept him under control. This week he is still wanting a list of things just advised him to wait and see what Santa brings. Actually got a thank you from him, must have been a blue moon that night as he hardly ever says thank you, just demands and wants and then grabs when he see's what he wants, has done this all my life.

Mentioned that I need cataract operation to them, mum has no idea what we are on about. Dad said he had them but they were not ready for treatment. Last year they were ready but he said he had declined.