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Expectations - Carers UK Forum


Tell us a bit about yourself here.
Hello and thank you for having me here!
I currently care for my father who was diagnosed with mixed dementia about 2 years ago and has been following treatment since. CT showed the old 2003 stroke he had suffered, plus several minor strokes during those years, all on the left hemisphere of his brain. He recovered quite well after the stroke in 2003, but his degeneration became obvious progressively, in the last 5-6 years. He is 73 now.
He finds it hard, sometimes impossible, to understand elementary things, daily routine activities, he has lost almost all his memory, he has no idea how old he is, how old I am...generally speaking, all number related issues are a thick fog to him. He still has some better days, though, when he speaks or laughs. He moves around, knows how to arrive home, but muscular difficulties are obvious, he walks hunch-backed, calculating every step and hardly managing his balance while standing or walking. He eats and uses the toilet himself. His permanent state is confusion. His glance is far lost somehow. He asks for help for small activities, because he is aware he needs it or doesn't trust himself, even if he could cope with that particular task. He thanks me for every single deed. He eats continuously and visibly loses weight, becoming shrunk somehow. He had some aggression episodes - 2 or 3 - towards my mother. This summer he suffered a stroke again, on the street, ended up in hospital and bounced back afterwards. I have no idea how many other strokes he might have suffered in between, as the doctor said, there could be several minor strokes, unidentifiable by us, the carers. Here, in my country, some doctors barely offer information on what to expect and do not spend too much time discussing with the caretaker, so I must find my information elsewhere.

Besides all the difficulties we are all aware of here, I am sure, I joined this site in hope I would find similar experiences, advice, being able to prepare myself to cope with the situation, knowing what to expect and helping him, my mother and myself as much as possible. I am the pillar in my home, living with my parents and my 9 year old daughter. My main concern now would be: what to expect in my father's evolution of his disease?

Thank you so much for accepting me and for taking the time to respond!
Hi Amy,
I hope dad is already in receipt of Attendance Allowance, and the Council Tax Exemption for "severe mental impairment" is being claimed?
How much OUTSIDE help is dad currently receiving? The brutal truth is that the more help you accept the longer he can stay at home, but at some stage, residential care is going to be almost inevitable. Find out as much as you can about local EMI homes (Elderly Mentally Infirm), find out about charging, funding, which ones you like the most, and which ones are nearest. Do not put this off any longer. Some will have respite beds.
Thank you for your quick and informative reply!

Yes, my dad has been getting that impairment money help for over an year now and I have prospected the local homes for the disabled elders and have even decided where my dad would be cared for when needed. I spoke to the doctors there and the owners.

His outside help is being provided by family members, plus a nurse, who is giving him shots of Cerebrolysine, once in 3 months, as prescribed. During his bad days, he needs assistance for dressing and washing. Sometimes, he finds it hard to unbutton the shirt or handle a zipper. Some others, he manages to do so... Some days, he interacts with us, some others he just sits staring at the wall. I am not sure how aware of his state he is, how unhappy he is, what thoughts cross his mind...He wouldn't tell me and it is very tormenting. Moreover, I have no idea if he can find any pleasure at all, in anything. He seems to care about nothing, he seems to live in a different movie and I want to know what goes on inside his head. Does he realize the gravity of his state? Is he depressed or is his brain function so deteriorated that he is unable to care anymore?! I hate the thought of him suffering.

Wishing you all the best!
Hello Amy
My husband is in a nursing home because of strokes and vascular dementia. He will be 73 in May. Sadly the dementia world is different to ours. Although we want to know if they are happy etc, I'm afraid we won't really know, because they can't actually word it when they get to this stage. It's tormenting yourself to try. My husband has times where he finds things on the television funny, things he wouldn't have even entertained watching pre dementia. I laugh with him regardless. Some days he is more lucid than others. Yes, it's very painful and emotional, but, somehow we have to protect ourselves from any more emotional pain, because it won't do any good , not for anyone. Do you have admiral nurses in your area? Or contact the Alzheimer's society. They may help you to get through. Believe me, I understand the heartbreak.
Try to make dressing as easy as possible. For example, a polo shirt (Lands End do some which are very good quality, cope with washing and tumble drying repeatedly, the tall fitting shirts will come lower down and make any unzipped fly less noticeable). Encourage the use of track suit bottoms or similar, pull up/down, if he will wear them.
Make sure you have a dishwasher and tumble dryer as washing challenges will increase. Also streamline the house, and especially the garden. Don't do anything which isn't strictly necessary. You need to start having more help at home, so you get time with your daughter. Dad needs to get used to a non family member supporting all of you. Many find it easier to introduce a carer initially as someone doing just domestic work.
Pet66, Thank you, I know and you are perfectly right, tormenting is useless and exhausting. Yet, some moments need to be consumed, I suppose... I am not a crybaby, emotional type and I won't afford losing my marbles, being a single mum and all and, yes, I seek support wherever I feel...this site is an example.
Thank you dearly for being here for me and may you find the strength and comfort you both need in order to stay safe, mentally and physically, as much as possible!
Bowlingbun, thanks for the ideas... Will do! My dad is very responsive to my ideas, he still cooperates and trusts me.
Amy, many members say that washing/bathing becomes problemmatical. Getting in and out of the bath is difficult, and even a shower isn't always easy, as someone else may need to get in too. A "wet floor"is probably the best solution. Before doing anything, be sure to ask Social Services to arrange an occupational therapist's visit. In some cirumstances, a DFG Disabled Facilities grant may be possible, but only if NO WORK has already started. Is it a house or bungalow?
It's a flat, 4 rooms. We don't have all these services here in Romania. We have 3 options: either care for our elder by ourselves, or admit him to a care home(private or public), or hire a person to care for him at home. For now, we are handling the situation well, me and mum, as my dad is rather docile, uses the bathroom, can manage most daily activities and, most of all, feels comfortable in this situation. If he becomes bed bound or totally unmanageable and needs constant special assistance, medical care, we will take him to a private home where we've already talked to the persons in charge.

Thank you for all your good advice and for having me on this helpful forum!
Hi Amy,
In your original post you asked about how your Dad's dementia will develop and how best to help him. The Alzheimer's Society has useful information on dementia, though the information on support is aimed for UK residents. https://www.alzheimers.org.uk

You probably know this already, but if not there is a Romanian branch too

Romanian Alzheimer Society
52 Austrului Street
2nd District
024074 Bucharest
Tel: +402 1 334 8940
Fax: +402 1 334 8940
Email: contact@alz.ro
Web: www.alz.ro

Which should have advice on support in Romania specifically.

Many years ago I spent two years living and volunteering in Romania. I was based in Siret near Suceava.