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My father has dementia with Parkinsons

sarahbeanz

New member
Aug 7, 2020
4
I wasn't sure which bit to post in, but my father has dementia and my mum has inadvertently become his carer.
I live about 40 mins away, my brother only 5 mins away. We both work full time, my brother does shifts.
His dementia has got quite a bit worse over the last few weeks and then yesterday he had a fall. He was taken to hospital but they said he was ok. Since being back his dementia is much worse than before he went in.
We are waiting on UTI test results from the GP (they didn't do one at the hospital which the paramedic said they would)

At the beginning of lockdown they unbelievably discharged him from the memory clinic. WEe have gone back to the GP to be re-referred.
We have also contacted the carers centre and there will be a carers assessment but not til late in August.

I'm worried about my mum who isn't coping very well with the idea of looking after my father. He is now struggling to get up from his chair or make it upstairs. He doesn't even know how to get into bed anymore. She is not strong enough to lift him if he gets any worse. She is not keen to have a stranger come in the house to help with him.

I know that Covid has thrown everything into disarray but my main question is..... What steps should we be taking? If it's not a UTI and this is him at his best now, he may need to go into a home. What do we do next? I want to help my mum as much as possible as I don't want her to feel she has to deal with it on her own but I can't be there all the time.
Any advice on next steps would be really helpful.

Sarah
 

karaokePete

Registered User
Jul 23, 2017
5,634
N Ireland
Hello @sarahbeanz, you are welcome here and I hope you find the forum to be a friendly and supportive place.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments for your father and a carers assessment for your mother, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. There is also a Dementia Guide in the list.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
 

Louise7

Registered User
Mar 25, 2016
2,373
Welcome to the forum @sarahbeanz you'll find lots of friendly advice and support here. A urine infection, or any other type of infection, can cause havoc in someone with dementia so hopefully the GP will identify if there is an infection and prescribe antibiotics to treat this. The thing that jumped out at me in your post is that your dad had a fall yesterday and since coming home his dementia is a lot worse and he is now struggling to get out of his chair or get upstairs and can't get into bed anymore. If he wasn't doing this before the fall then it's possible that there may be a physical injury/problem as although dementia does cause deterioration your dad seems to have deteriorated a lot in just one day, after a fall. What type of dementia does your dad have? Is it vascular as that can cause sudden declines, usually due to a TIA/mini-stroke. Did the hospital carry out any x-rays or conduct a CT head scan? If not, hopefully the GP will undertake a thorough review of your dad if he doesn't have a urine infection to check that there is nothing else that could be causing your dad's sudden loss of mobility and that he is not in any pain. It’s possible that the hospital may have missed something if your dad did not get a thorough check over in the hospital. The GP will also be able to refer your dad to the occupational therapist to see if there are any aids that can be provided to help keep him safe and help your mum.

With regards to the memory clinic, it can be quite common for someone to be discharged after just one or two visits, after a diagnosis has been given and medication prescribed - my mum was. It sounds like your mum urgently needs help with looking after your dad so the best thing to do is to contact the local authority adult social services team and explain the situation and request an urgent care needs assessment, before the end of August. The local authority will also conduct a financial assessment but if your dad has more than £24,250 savings (just his, not your mum's too) then he will be considered a self-funder and responsible for paying for his own care. If this is the case the family can contact care agencies now to put in place some help for your mum without needing input from social services. This fact sheet explains the care needs assessment process so might be helpful. Keep posting, as there are others here who have been in the same situation and will be able to provide more suggestions for you.

https://www.alzheimers.org.uk/get-support/legal-financial/dementia-care-needs-assessment
 

canary

Registered User
Feb 25, 2014
13,404
South coast
I'm worried about my mum who isn't coping very well with the idea of looking after my father. He is now struggling to get up from his chair or make it upstairs. He doesn't even know how to get into bed anymore. She is not strong enough to lift him if he gets any worse. She is not keen to have a stranger come in the house to help with him.
I understand your mums resistance to carers coming in, but OH now has carers come in to help him wash and dress and although it was a bit peculiar to start with, they no longer feel like strangers, they have come more like friends. They just get on with it in a cheerful way and there is no judgement there. If she is worried about covid, I can only say that OHs carers worked right through lockdown and always came in full PPE. Having extra help in has been a revelation and has made such a huge difference to me.

Please encourage your mum to get extra help.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,758
Nottinghamshire
Welcome from me too @sarahbeanz

I understand your mum’s reluctance to have strangers in the house but every one of my friends were strangers until I met them. I agree with @canary - all the carers we had were a friendly and reassuring presence and got on with the job in a cheerful and efficient way. I’d got to the point of being unable to cope with my dad’s needs and home carers meant that he could stay at home for longer.
 

Jaded'n'faded

Registered User
Jan 23, 2019
889
High Peak
I think you have to get across to your mum what her - very tough - choices are. As I see it, she can either have carers in to help her, do it all herself or move him to a care home. You've said you can't be there more to help so those really are the only options.

I don't think anyone likes the idea of 'strangers coming in the house' or 'moving to a home' but the reality of both these things can be a revelation! Can you get your mum to at least try having carers in and see how it goes?
 

sarahbeanz

New member
Aug 7, 2020
4
Thank you for your replies, everyone.
The GP came out to see my dad yesterday and we took him to the hospital. Unfortunately, we had a very very long wait in A&E despite the acute medical unit knowing that he was going to be admitted and during that time my dad's situation worsened. He made no sense when he tried to speak, he didn't know what was going on and got angry with my mum when she tried to help (he has an obsession with his belt and keeps undoing it and doing it up again). He tried to fight with the doctors when they wanted to get him into a wheelchair and he was calling for his mum who died 15 years ago.
They have kept him in for an assessment and they will obviously check him for everything.
He will also be seen by the occupational therapist.

What I'm scared of is they just discharge him, when he's no better than he was yesterday and we have to take him home. There is no way my mum can cope with him like this. But hopefully, they will be able to put something in place immediately either at home or somewhere else. I can stay with my mum if needs be but it is almost impossible to get him to do anything.

It broke my heart to see him like that yesterday and for my mum too who has always relied on my dad. He's such a good man and a great father. Dementia is tragic.
 

sarahbeanz

New member
Aug 7, 2020
4
I understand your mums resistance to carers coming in, but OH now has carers come in to help him wash and dress and although it was a bit peculiar to start with, they no longer feel like strangers, they have come more like friends. They just get on with it in a cheerful way and there is no judgement there. If she is worried about covid, I can only say that OHs carers worked right through lockdown and always came in full PPE. Having extra help in has been a revelation and has made such a huge difference to me.

Please encourage your mum to get extra help.
Thank you, that's very reassuring. We will discuss it.
 

sarahbeanz

New member
Aug 7, 2020
4
Welcome from me too @sarahbeanz

I understand your mum’s reluctance to have strangers in the house but every one of my friends were strangers until I met them. I agree with @canary - all the carers we had were a friendly and reassuring presence and got on with the job in a cheerful and efficient way. I’d got to the point of being unable to cope with my dad’s needs and home carers meant that he could stay at home for longer.
Can i ask, obviously carers can't be there all the time, so what happens if he needs to go to the toilet when they are not there and my mum can't help him with that, or if he gets up in the night (which he does)? Does this mean that staying at home isn't an option?
 

canary

Registered User
Feb 25, 2014
13,404
South coast
It looks to me like the situation has changed since you first posted and I replied. If he is not mobile when he is medically fit for discharge then this is a huge problem, for exactly the reasons that concern you.

Does your dad have a UTI? OH has had many admissions with a UTI and on one occasion lost mobility, so I understand exactly where you are coming from. I was asked if I would be prepared to have him home again and I said that I could not - our house is not laid out for someone with no mobility and there would be no room for the hoists etc that would be needed. Fortunately, once the UTI was gone he regained most of his mobility, although he now needs a zimmer frame to get around, so he came home.

If your mum would not be able to cope with any loss of mobility then you need to make this quite clear to the hospital. The Occupational Therapist has the final say about whether someone can go home and what aides etc are needed and should give him an assessment before discharge.
 

MartinWL

Registered User
Jun 12, 2020
220
Can i ask, obviously carers can't be there all the time, so what happens if he needs to go to the toilet when they are not there and my mum can't help him with that, or if he gets up in the night (which he does)? Does this mean that staying at home isn't an option?
I had a similar issue with my mother, who is now in a care home. The critical thing was that she got up in the night and was prone to falls that could, and did, cause serious injury. Having all-night care at home is difficult and very expensive which is why a care home was the best option for her, also taking account of other factors related to my father.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,758
Nottinghamshire
One of the things that lead to my dad having to go into a carehome @sarahbeanz was the not being able to get to the toilet without help. Dad wore pull-ups and didn’t always know when he needed the loo but I didn’t like the thought of him being wet or dirty and uncomfortable for hours and unable to do anything about it. He lived by himself but was too heavy for me to lift anyway.