Caring for mum with Parkinsons dementia


My mum has recently been discharged from hospital after an 8 week stay. She was admitted due to a UTI which we thought had worsened her Parkinsons but has come out in a much worse state than when she went in. She is now bed bound and is suffering quite significant confusion, although at times seems to be very much with it. Prior to going into hospital she would often be a little forgetful in the afternoons but that was about it.

My brother lives with her so is her main carer, and she has carers four times a day.

I am already finding it very difficult to cope with her seeing the deterioration while in hospital and now that she is home I am worried about her constantly and not sleeping. She seems to have these episodes where she suddenly becomes very disorientated and thinks she is on a ladder and wearing a helmet. We can’t convince her that she is lying in bed and is quite safe and she is getting very frightened and upset. She’s even tried getting out of bed a couple of times even though she cannot walk.

We called 111 today who sent an ambulance out to her as we didn’t know what else to do. They were concerned about a stroke but she has had brain scans done for these episodes while in hospital and it came back clear. They diagnosed vertigo and have given her medication for it but it doesn’t seem to help. We have an out of hours doctor coming out this evening. It seems the episodes are triggered whenever the carers use the slip sheet to move her up the bed. She was completely lucid prior to being moved.

I don’t know what support there is for me and my brother. We are totally out of our depth with this and completely unprepared.

There needs to be another updated assessment …

How did the g,p, visit go.

Are you aware of Lewy Bodies dementia which people with Parkinsons are likely to get?
It’s time for a long term solution to be found for mum where she has 24 hour care available.

At the moment she is getting the cost of her care covered though I don’t know if it is through the NHS or local authority. We don’t know how long this is intended to last for and whether she will have to self fund after that. She’s adamant she does not want to go into a nursing home and we will try as long as possible to avoid that.

The doctor thinks she may have post hospital stay delerium, but is arranging for a full assessment to be carried out by her GP on Monday. This will be the first time she has been reviewed by anyone other than the consultant in the hospital, and now we have had a chance to see how she is throughout the day we can understand a bit more about her condition.

I have been doing a lot of reading up on Parkinsons dementia, which seems to be the same or closely linked with Lewy Body dementia.

She has definitely been exhibiting signs of dementia over the past year or so, but it has escalated significantly while she was in hospital. She seems more confused rather than forgetful.

My brother seems to be managing but it is being very demanding on his time. It may be just an adjustment period getting used to be home after being in a busy hospital setting for 2 months. I’m going to talk to the carers about respite care so that he has the opportunity to take some time off for himself. She seems to be completely fine at times but quite confused at others and keeps wanting him to sit with her.

She seemed to manage much better over night last night and didn’t try to get out of bed.

No one ever wants to move into residential care, but one day there will be no alternative, as her NEEDS will increase so much that she has to have a team, as opposed to one person, available 24/7.
The more help you can get at home, the longer residential care can be avoided.
You must remember also that dementia means that she cannot make good decisions any more, and all elderly with or without dementia, lose the ability to see how much others are doing for them.
I know just how heart breaking all of this is, my own mum became so physically frail that residential care became the only option, as everything else had been tried and failed.
Ultimately, it will be you saying “I just can’t do this any more” or something happening to mum, an illness, a fall or similar, so she goes into hospital and her needs are so great that they will insist on nursing care.
It doesn’t mean you have to abandon mum.
My mum was in residential care for a year, until she died. It was lovely to go back to just being mum and daughter, so I could take her special treats, fresh flowers, we could chat, without finding an endless list of jobs every time I went to see her.
I would urge you to go and see the residential homes nearest mum, they would need to have an EMI (Elderly Mentally Infirm) section and be prepared to meet all her needs until she passes away, so it is her last ever move.