84yo Father Deteriorating Rapidly

Spikey9

New member
Dec 24, 2023
1
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My 84 yo father has been showing signs of failing memory and confusion over the last 12/18 months. He has also lost a huge amount of weight (down from 11 to just 6.5 stone) as he has developed an irrational issue with food and drink making him go to the toilet (as it should - nothing out of the ordinary) so he is eating just enough to keep him alive!!!

He has macular degeneration which has progressed to a state where he can effectively see very little. His mobility has been impacted very seriously and needs constant support to do anything - dress, wash, eat. All this is provided solely by my mother who is 80 as I live over 5 hours away but get back as often as I can.

He has recently spent 2 weeks in hospital following an issue with water retention linked to heart failure. He has a long history of heart problems dating back 40 years - with 6 heart attacks and eventually a quadruple bypass. These physical problems led to a very rapid decline in his mental state. He couldn’t remember me, my mother, sister etc. and had regressed back to his childhood years. I was his father and my mother (his wife) was his mother. He was also paranoid that the nurses were ganging up on him and trying to steal his belongings. He bit one and kicked another. Also hid a fork down his shirt and held onto it so tightly it stuck deeply into his stomach, bled and needed to be treated medically. All this from a very quiet and gentle man all his life.

He did recover somewhat with treatment for the underlying issues. He calmed down and his confusion reduced. But he has been left in a position where he is much worse than before he went in.

I pushed very hard for an assessment and diagnosis whilst in hospital but to no avail. He spent more than a week on a trolley bed in a corridor!!! And only a few days on an assessment ward in a bed. The only feedback from the doctors, nurses and social worker was that he is capable of more than he is letting on and if instructed and monitored he can complete tasks. He is also a very intelligent, well-educated and articulate man with a long and successful career in engineering. He can still talk very eloquently about some complicated issues and many take this as a demonstration that there is nothing wrong. Despite the fact that he doesn’t recognise his family, thinks he lives in his childhood home and all his brothers and sisters are waiting for him at home - they are all dead (he is one of 13 children!!).

All this meant that they sent him home just with some more medication for water retention and his heart condition. Not deemed to have any underlying cognitive issues!

My mother is at her wits end. He is now awake 22 hours a day. Constantly asking for her (his mother). Holding her hand and will not let her leave the room - go to the toilet etc without him getting very anxious and confused. He is now also incontinent. He can fluctuate between days and sometimes within days with some being better than others but none good.

I don’t know what to do next. I have paid privately for some carers to come into help my mother each day. Although this is not sustainable as it costing close to £2000/month. I have contacted adult services to come and do a home assessment but they are dubious as they refer to the recent hospital assessment which says there are no issues. The GP has been of little assistance as they keep going back to addressing his underlying physical issues.

Any advice on where to start and go next would be much appreciated. My fear is this will drive both my parents to an early grave very rapidly without any further support!
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,492
0
Newcastle
Hi @Gtmills and welcome to Dementia Support Forum, a great place to ask questions, share with people who truly understand, get helpful suggestions and let off steam. I am sorry to hear about your father. It sounds like another example of professionals missing the obvious clues that are picked up by family members. An adult needs assessment would be a good start towards planning for his care needs. I would suggesting writing down all of the issues and barriers to daily living that point towards cognitive decline. Ask for an assessment because both he and your mother are vulnerable and at risk of harm. The fact that he presents well ought not fool anyone with experience but it is amazing how much people who aren't directly involved may be willing to take at face value.

I don't have an easy solution but hope that others who have been in a similar situation will be able to help you.
 

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