Father diagnosed after hospital stay

[Buzzybee77]

Hello, I am the main carer for my Dad who is 84. He has various health issues - Parkinsonism, pacemaker, high bp and high cholesterol. This year he was admitted to hospital twice, first in July with a UTI and dehydration and stayed for a week and a half and then in September for three weeks with c.diff infection which he picked up from the first hospital stay (hospital failed to inform me on his first discharge that his iron levels was very low, and he actually showed signs of infection before discharge). From the infection he now has inflammatory bowel disease and needs to wear incontinence. While in hospital on both times he had bouts of hospital delirium but only mild memory impairment. For the second discharge they sent him to a rehabilitation care home to build up strength before coming home. In the care home his appetite improved and he got stronger with physio but he contracted another UTI and his memory deteriorated. Last week the memory clinic doctor saw him at the care home and diagnosed him with Parkinsons Dementia and prescribed the patch medication.No support or advice on what to expect. The week before, the therapist at the care home called me in for a meeting and said she believed Dad should go to a residential care due to issues with his incontinence and confusion at night!. All very shocking. Dad was discharged from the rehab care home last week Friday and is now at home with carers coming in for personal care 3 times a day. Social Services are to review next week to see how we are coping at home and if Dad needs a residential care home (would mean losing the house). I am my Dad's only family here and while i am just about coping with his personal care and medication, I am upset at his diagnosis. Also have to sort out his LPA, Will, and see a IFA about paying for care. I have taken a break from work so going to reapply for carers allowance. All very overwhelming. Have been talking daily with my mum and sister who live in the Caribbean but they don't really understand how hard it is. Also my Dad has the symptom of overeating from forgetting that he has already eaten and getting difficult to keep him out of the kitchen. Tough times!
Sorry for the long email !!

 

[Jessbow]

Dementia is far from unusual with parkinsons.

What patch med has he been prescribed and for what?

 

[karaokePete]

Hello @Buzzybee77, you are welcome here and I hope you find the forum to be a friendly and supportive place. There isn't any need to apologise for the long post.

That history certainly relates a tough time for you and your Dad.

Do 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. I hope they are of some use to you.

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 the care needs assessments, and sorting out things like Wills, Power of Attorney etc., that you mention

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

 

[Buzzybee77]

Thanks for the info.

He was prescribed Alzest 4.6mg 24hr patch

At the moment can't leave my Dad in the house alone too long as I don't know what he will do in the kitchen. He did have an episode in June while I was away where he had a lapse of cognition and put a plastic electric kettle on a lit gas burner. Luckily the morning carer came and put out the fire and alerted the agency to let me know. Dad wasn't so bad then and said he didn't know why he did it. His Parkinsons consultant and GP said it was probably a one off event. Hard to believe he went into hospital 9 weeks ago unwell but with mild memory impairment to how he is now with very poor short term memory. Difficult to come to terms with.

 

[canary]

Its hard to get your head round it when there is such a sudden progression in dementia. Unfortunately infections of any sort can give that sort of effect.

Putting electric kettles on a hob is actually really common with dementia because when they do it they have gone back in their minds to the time when they would put whistling kettles on the hob.

 

[Rosettastone57]

Thanks for the info.

He was prescribed Alzest 4.6mg 24hr patch

At the moment can't leave my Dad in the house alone too long as I don't know what he will do in the kitchen. He did have an episode in June while I was away where he had a lapse of cognition and put a plastic electric kettle on a lit gas burner. Luckily the morning carer came and put out the fire and alerted the agency to let me know. Dad wasn't so bad then and said he didn't know why he did it. His Parkinsons consultant and GP said it was probably a one off event. Hard to believe he went into hospital 9 weeks ago unwell but with mild memory impairment to how he is now with very poor short term memory. Difficult to come to terms with.

This quick progression happened with my MIL. She had mixed dementia and had been coping at home with carers since 2015. She became ill during the summer heat went into hospital and within 2 weeks had declined rapidly. She couldn't recognize her own home on her discharge and could barely stand. She went back in to hospital with severe cognitive decline and family made the decision to place her in residential care. To be frank it was the best decision we made for her so she was safe.

 

[Buzzybee77]

This quick progression happened with my MIL. She had mixed dementia and had been coping at home with carers since 2015. She became ill during the summer heat went into hospital and within 2 weeks had declined rapidly. She couldn't recognize her own home on her discharge and could barely stand. She went back in to hospital with severe cognitive decline and family made the decision to place her in residential care. To be frank it was the best decision we made for her so she was safe.

Yes it was during the heatwave this year my Dad would not drink or eat much. On the morning had had to call the ambulance for the first admission I told him he would end up in hospital with dehydration. The only 'good' thing now is that he is drinking well and eating a bit too well. Concerned the rehab care home discharged him with a cold and didn't give him the flu jab while he there. Was lucky that the rehab care home was a very nice place though. When the social service review next week have to consider if to have a carers coming in blocks of time of 5/6 hours a day or a residential care home which will prob mean the loss of the house. He will be self funding but will try for NHS CHC

 

[Rosettastone57]

Yes it was during the heatwave this year my Dad would not drink or eat much. On the morning had had to call the ambulance for the first admission I told him he would end up in hospital with dehydration. The only 'good' thing now is that he is drinking well and eating a bit too well. Concerned the rehab care home discharged him with a cold and didn't give him the flu jab while he there. Was lucky that the rehab care home was a very nice place though. When the social service review next week have to consider if to have a carers coming in blocks of time of 5/6 hours a day or a residential care home which will prob mean the loss of the house. He will be self funding but will try for NHS CHC

My MIL was self funding and we never involved social services throughout the care she received. But to be frank to get carers in for that amount of time ,you would find it probably better value in a care home. My MIL paid £1350 a week which was on the border of South London which was the going rate. This sounds a lot but it worked out as about £9 an hour for 24/7 supervision 365 days a year. She was paying £20 for 45 minutes in the week with carers. We felt that she simply wasn't safe when the carers weren't there and she had no initiative to do anything for herself. She needed 24 hour supervision. I have no experience of CHC so others may give you better advice but I know it's very difficult to get.

 

[Buzzybee77]

Yes lots to think about. If we go down the residential care route it will also mean I have to look for somewhere else to live and losing the family home, all very tough and distressing but I do want the best possible care for my Dad. Very knackered after just one week of caring for him. Did not realise his decline was this severe

 

[Shedrech]

hi @Buzzybee77
there are circumstances in which the property is disregarded in a financial assessment - here's a link to the main AS site's pages
https://www.alzheimers.org.uk/get-support/legal-financial/care-home-fees
and you may be able to arrange a deferred payment agreement to keep the house, and think of paying your dad rent
if LPAs aren't yet in place here's a link to the Gov site
https://www.gov.uk/power-of-attorney

 

[canary]

I dont know how old you are @Buzzybee77 but if you are 60 or more then his house would be disregarded all the while you were living in it. It would also be disregarded if you were disabled, or you might be able to get a discretionary disregard as it is your family house and you have been living in it while looking after him.

 

[Buzzybee77]

I am 41 so the house would not be disregarded i dont think

 

[canary]

Not a mandatory disregard then, @Buzzybee77 but you may get a discretionary disregard. you would have to apply to the Local Authority when your dad goes into a care/nursing home and see what they say.

 

[Buzzybee77]

Will look into the discretionary disregard and see what that entails. Thanks

 

[Buzzybee77]

Just an update. Dad much more settled this week not many problems with incontinence at night as he had in the rehab care home. Have have gas cooker safety locking valve fitted in kitchen. Have had a free consultation with an IFA who suggested moving his current ISA's to a stocks and shares ISA for a better return. That in addition to his capital and other income would fund home care for about 5 years. For care home fees was suggested that we could downsize to a smaller property that I could live in to release money from the house for care fees. Then invest that money with the ISA for a better return. Not too sure about that option but would be good as would mean I would not be homeless. Seeing another IFA next week and a solicitor doing a home visit for will writing.

At the moment the plan with Social Services is to increase the care calls to 5 or 6 hours a day for four days a week and a day centre once a week. NHS will be supplying incontinence stuff from next week. Also had carers assessment and will hopefully use one off payment to join local carers centre. So much to sort out but getting through it. Christmas as well !

 

[marionq]

Just remember that stocks and shares are high risk investments as they go down as well as up and at times can become worthless.

 

[Sirena]

My mother's money was in stocks and shares and after a discussion with her IFA last autumn I disinvested it all (about 4 years' worth of care home fees). If you need the cash at a set time, as in the case of paying care home fees, you may need a chunk of money at a point where value has plummeted. The current political situation can cause the markets to be very volatile. I needed to know for sure how much money she had, I could not risk losing any.

 

[Buzzybee77]

Have had two other free consultations with IFA's. One on the phone and one yesterday face to face. Both have recommended the Immediate Care Annuity route should my Dad need residential care as it is lower risk than the stocks and shares ISA. At the moment Dad can afford to pay for home care from his income and bank account, leaving his savings untouched. The annuity is not without risk and quite expensive so still thinking that over. The financial LPA has been granted and I need to register it with the banks. Wondering if to see another IFA but pretty sure they might advise the same thing about an annuity. The first IFA I saw last year advised against an annuity.