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Respite care for early onset vascular dementia

(5 Posts)
Liliput2013 Thu 02-Jun-16 09:34:11

A bit of background to start with. After coming up to twenty years of 'episodes' my father is currently in hospital, soon to be discharged. These episodes started off with stroke like symptoms of occasional collapsing, losing the use of his limbs and fine motor skills, confusion and talking gibberish. Two and a half years ago he had a major hemorrhagic stroke, which resulted in these symptoms being virtually permanent.
He can still walk, albeit slow and unsteady. He was also regaining his speech (again slow) and would experience semi regular confusion. He lives with my mother who is his main carer.
Eighteen months ago he was admitted to hospital in extreme agitation and distress and was there for several weeks unable to do anything.
Three weeks ago he was admitted again after a fall with similar symptoms-extreme agitation, confusion. He has gone through phases of not knowing who we are, shouting, uncontrollable sobbing, incontinence. All very distressing. A CT scan indicated a bleed on his brain.
At the moment he is ok. He is in hospital awaiting an MRI scan. Unfortunately, he is not on an appropriate ward and the Registrar has made it very clear that they are just seeing to his basic needs and not investigating him further. His consultant neurosurgeon (who he has only met once and is at a separate hospital) has requested this MRI and that's about it.
No one seems to know what it is that is wrong with him, or help.
My mom is now refusing to have him back home (even though physically he is well) she says she cannot cope with him anymore. The hospital want him out, she won't have him home. I physically do not have the space here to look after him (I also have two young children and work). What can we do? He seems too well to go into a home (I feel this is only a very last resort). All daycare centres seem to be for elderly people, he's only 63! Help! Surely we cannot be the only people in this situation. The term vascular dementia was given as an explanation of his symptoms, but not a definite diagnosis.

CMOTDibbler Thu 02-Jun-16 09:50:09

Your dad needs an assessment from a dementia team, and from social services in terms of his future care needs. TBVH, it sounds like a residential dementia unit would be the best place to meet his needs - it sounds like living somewhere without 24 hour care wouldn't be safe for him, and your mum can no longer cope.

I hate to say it but in my very extensive experience of all this, while your dad is in the hospital is when you are in the strongest position to get your dad the care he needs, so don't let them discharge to you or your mum 'just for a bit' unless you are prepared for it to be years.

This website has a listing of care homes who are most suitable for those with younger onset dementia, but its worth visiting places close to you/your mum and chatting with them so you know the places and whether they would do things your dad likes

Liliput2013 Thu 02-Jun-16 13:00:14

Thank you so much for your response. He was very much left to it once he was discharged last time, so I understand that we are in a better position (unfortunately) the longer he stays in. I shall have a look at the care homes. I feel so very sad that it has come to this.

Alfieisnoisy Thu 02-Jun-16 13:25:34

Echoing what the other poster said. While your Dad is in hospital you are in a stronger position as they want him freeing up the bed. This will put pressure on the assessment team to sort things out.
I feel for you as my cousins is going through a similar issue with my Uncle who is much older but equally frail. The assessment team seem to want to send my Uncle home with the top package of Carer in four times a day and wait for it to fail. What does "fail" mean? When he falls over? It's a nightmare.

No...stand firm, your Mum can no longer cope and she needs your Dad to have more care than she is able to provide. Keep politely refusing and pointing out that if they discharge him home you will hold them responsible for the consequences. That tends to concentrate thoughts.

dangermouseisace Thu 02-Jun-16 23:40:59

I used to work for social services....can echo what has been said before and had to (sadly) recommend the same with regards a family member. It works, and everything will be ok in the end, but you do need to dig your heels in. Remember- what would happen if your father had no family? No way they'd send him home!!! Your mum has been clear that she cannot cope- that is a major red flag. It's not that unusual to have younger people with dementia- I worked with a few early 60's, one late 50's. Have they looked into a dementia diagnosis? As usually to be eligible/considered for certain services there needs to be a diagnosis. A diagnosis is also needed if important decisions need to be made on behalf of your father. Wishing you the very best for yourself and your family- this is a horrible process for anyone to go through but unfortunately a necessary one.

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