Can a dementia patient (recently diagnosed and still in hospital) have a trial period at home?

[gazgreen01]

My dad was admitted to hospital in February following rapid onset of dementia symptoms. Whilst at home over a 2 week period they could not find an infection and after 1 week of no sleep for my mum we finally got him admitted. He was urinating everywhere, trying to leave house naked agitated etc. This continued in hospital and after 2 weeks a urine infection developed, antibiotics given and this period of 'delarium'stopped after approx 5-6 weeks. He now has a dementia diagnosis. But after first admission we decided to opt for a care home as he could not wash, feed or dress himself. However, this has all changed and he is independent. He has moments of delusions but memory is good. Therefore hospital want him out as they are not 'caring' for him in any capacity. He is no longer wandering at night. Very early stages dementia. However, my mum is scared of him coming home in case what happens in February happens again and social work advised her if he comes home and she can't cope we will be back at square one and may not get him admitted and so on. Question is can we request a trial period at home. I know hospital cannot 'keep' his bed. But can he remain on care home waiting list, come home and documentated that in event of it being detrimental to my 78 year old mums health we woukd wish him readmitted?
Long post.

 

[Grannie G]

Welcome to the forum @gazgreen01

Trial and error sounds like a lot of messing about for both your parents. I think the social worker has a good point.

Most Social Workers seem to want to do everything to keep people with dementia in their own homes for as long as possible. The fact your dad`s Social Worker is not recommending this is a message I feel has some value.

Added to the fact your mother is afraid of a repetition of a previous situation, adds strength to the Social Worker`s recommendation.

It`s a tough decision I know.

 

[northumbrian_k]

Hi @gazgreen01 and welcome to Dementia Support Forum our friendly and helpful community of people who have experience of many aspects of dementia. I am sorry to hear about your dad. It may be that the improvements in his ability to be independent have resulted from the care he has received in hospital. There is certainly an option for him to return home but the key question is whether that would be in his or your mum's best interests. If your mum feels unable to cope then admission to a care home may be a better solution. There is certainly no reason why he can't remain on the waiting list for a care home (or more than one). There are many practical considerations that our members will be able to help you with.

This guidance may be helpful:

Care homes: When is the right time and who decides?

Advice and practical tips for carers on when is the right time for a person to be moved to a care home.

www.alzheimers.org.uk

 

[Banjomansmate]

Maybe the most pertinent question is”Who do you expect to be paying for his residential care?”
If he has enough money to be self funding then he can come home but if a similar situation arises at a later date you will have to find a care home willing to take him and you will need his agreement to go into care. While he is in hospital and if he will be paying for his own care then you may be able to get him to agree to a transfer to ‘somewhere he can build up his strength’ or a similar phrase and the move is done and dusted!
If his Local Authority would need to pay for residential care then life could be rather more difficult and you will be reliant on what an LA Social worker decides rather than what a hospital social worker thinks is best. His needs will outweigh your Mum’s wishes and the cost of residential care will play a big part in any LA decision. They may well decide he is perfectly safe at home now and wait to see what happens at a later date.

 

[canary]

The hospital SW thinks that he should be in a care home and your mum is afraid of him coming home. So who wants him home? It sounds to me that it's you, and i wondered why. Is it because you feel that a care home means failure and he would just be "dumped" there? If so, I can assure you that is not the case. Many people on here have very positive experiences of care homes and there is still a role for the carer as an advocate and their voice once they have none

Please listen to your mums concerns as she is his main carer and has to deal with it

 

[gazgreen01]

The hospital SW thinks that he should be in a care home and your mum is afraid of him coming home. So who wants him home? It sounds to me that it's you, and i wondered why. Is it because you feel that a care home means failure and he would just be "dumped" there? If so, I can assure you that is not the case. Many people on here have very positive experiences of care homes and there is still a role for the carer as an advocate and their voice once they have none

Please listen to your mums concerns as she is his main carer and has to deal with it

The hospital SW thinks that he should be in a care home and your mum is afraid of him coming home. So who wants him home? It sounds to me that it's you, and i wondered why. Is it because you feel that a care home means failure and he would just be "dumped" there? If so, I can assure you that is not the case. Many people on here have very positive experiences of care homes and there is still a role for the carer as an advocate and their voice once they have none

Please listen to your mums concerns as she is his main carer and has to deal with it

Hi, the hospital social work has not recommended care home. I requested it on first admission as how he was (hospital have now stated it was a static event of delarium) was not something my mum could deal with on a continued basis.i would not put my mum in a position that I dont believe she or the family couldn't handle. However, this static event has passed but my mum has no experience of dementia and therefore is naturally scared of what may lie ahead and as such despite dad being the same now as he was before this static event (where they both lived together at home independently) my mum had made a decision and the social worker is putting the fear of death into her to change her mind. Despite the fact the medical team requesting a review with social work to arrange discharge. 6 weeks ago social worker wanted him home with a care package of 4 visits per day and I stood firm on care home, as at that point they believed this was somehow a rapid onset of dementia and later stage. And to me if he needed a care package 4 tines oer day and appeared to be sundowing, how could my mum cope. Now that medial team have changed their mind, delarium has passed and diagnosed as early stage dementia and no care package being recommended, the social worker is for some reason making mum feel that it's best he waits it out in hospital for a care home. If he doesn't need a care package, why is a care home even a suggestion? Hence why I asked can you trial it or is it a case of bring him home and tough, you have made your decision get on with it.

 

[Collywobbles]

Once at home, you’ll have the fight of your lives to get him into a care home, even when you hit the inevitable point when everyone desperately needs it. SWs so rarely recommend a care home until a crisis has hit - by which time, carers are generally on their knees. Personally, I’d grab that with both hands. Otherwise you’re condemning your Mum to the life of a full-time carer when from what you’ve said, she seems adamant that she can’t cope. By your own admission, she’s scared. Unless you plan to move in with them to support her, there’s no way for you to allay those fears. Whatever is worrying her, with dementia you can be pretty sure that worse is waiting, as you can see from other posts here. Maybe the SW is being realistic, rather than exaggerating as you seem to think.

It might be worth seeing it as an opportunity to get your father settled in a care home and make it familiar surroundings for him, before that crisis hits.

 

[canary]

It's the social worker who recommends the care package, not the medical team, and the reason one is not being recommended for your dad is because the SW thinks he needs to be in a care home

 

[maisiecat]

Hi @gazgreen01 , I'm not going to advise you what choice to make but on behalf of your Mum I would like to say its utterly terrifying when a husband has an acute episode. My husband did last year and became psychotic, he didn't know me or where he was and often attacked me. I was a Nurse and had done pyschiatry during my training but at 3am its lonely and frightening.
I protected my children from knowing the full horror of it ,perhaps your Mum is protecting you.

 

[gazgreen01]

Thank you.x

 

[gazgreen01]

Once at home, you’ll have the fight of your lives to get him into a care home, even when you hit the inevitable point when everyone desperately needs it. SWs so rarely recommend a care home until a crisis has hit - by which time, carers are generally on their knees. Personally, I’d grab that with both hands. Otherwise you’re condemning your Mum to the life of a full-time carer when from what you’ve said, she seems adamant that she can’t cope. By your own admission, she’s scared. Unless you plan to move in with them to support her, there’s no way for you to allay those fears. Whatever is worrying her, with dementia you can be pretty sure that worse is waiting, as you can see from other posts here. Maybe the SW is being realistic, rather than exaggerating as you seem to think.

It might be worth seeing it as an opportunity to get your father settled in a care home and make it familiar surroundings for him, before that crisis hits.

 

[gazgreen01]

Thank you

 

[gazgreen01]

I would like to thank everyone for their input.
Early February my dad had sudden onset of delarium and whilst at home despite blood tests, urine tests etc no infection could be found. After the 3rd night of my mum phoning me to due to his behaviour, I was the advocate for both my parents and pushed for hospital admission. 2 weeks into hospital admission there wasn't much improvement and social worker asked our wishes and as a family we requested care home. FF to now and whilst my dad has now been given a diagnosis of vascular dementia he undertakes his own personal care. The medical team wished to discharge him and our social worker has been great and was taking into account our original wishes and had my mums interest at the forefront also. She had not received an update in 5 weeks as to the dramatic improvement in my dad.

However, a meeting with social worker, nurses and one medic snd 3 members of our family on Thursday and agreement was made that my dad is fit for discharge. Early February he had a static event of delarium of unknown origin (perhaps infection). This was following a previous 6 week stay in hospital with a severe infection of his artificial heart valve.

The social worker again at meeting was fantastic and an advocate for my mum. Asking why my mum now wanted dad home. Mum was clear in her decision that in February he was delarius and he is not like that now.

Now I know that he has dementia, but early stage. And I know that this can change suddenly. But my dad is not at care home stage.

Social worker asked if we wanted a care package, did not state one was needed. But we requested one as appreciate the move may cause upset. Therefore they agreed we would start at 4 times a day and perhaps cut this back if not needed.

Dad will remain on care home list, though he will not be priority if he is in community and we can refuse it if a space comes up before we agree as a family he does not need it.

Neither me or my brothers would bring my dad home to the detriment of our mums health and will continue to be an advocate for both of them.

Dad will be home next week after having had thorough occupational health assessments.

X

 

[SAP]

@gazgreen01 im glad that this has been setting for you and your parents. . I think as soon as a PWD hits hospital all sorts of exit plans are made by the professionals who understand they system but this is not conveyed properly to the families. I do wish the professionals would remember that not everyone is a dementia specialist or understands all the ins and outs of the care system. I hope your dad settles back home well and has a good period of time with his family.

 

[maggie6445]

If he was only diagnosed with delerium in February on hospital admission after rapid symptoms ,I'm surprised the hospital say it's dementia. My dad went into hospital,was diagnosed with delerium and we were told that dementia is ruled out for six months after delerium as it can take that long for a full recovery. Did he have dementia before the rapid decline?

 

[gazgreen01]

If he was only diagnosed with delerium in February on hospital admission after rapid symptoms ,I'm surprised the hospital say it's dementia. My dad went into hospital,was diagnosed with delerium and we were told that dementia is ruled out for six months after delerium as it can take that long for a full recovery. Did he have dementia before the rapid decline?

Hi, no he did not. Sorry to hear about your dad. And I did ask again on Thursday does he definitely have a diagnosis of vascular dementia and they stated yes. When he was admitted before Christmas he was also delarius for a 24 hours period due to severe infection and never fully recovered. Do you think I should ask for further assessment by psychiatrists, given its been almost 6 weeks since they "offerered" diagnosis. That was the word she used with me. As though I could somehow reject it.x

 

[gazgreen01]

@gazgreen01 im glad that this has been setting for you and your parents. . I think as soon as a PWD hits hospital all sorts of exit plans are made by the professionals who understand they system but this is not conveyed properly to the families. I do wish the professionals would remember that not everyone is a dementia specialist or understands all the ins and outs of the care system. I hope your dad settles back home well and has a good period of time with his family.

Many thanks, one day at a time.Nobody can see what lies ahead and for all we know his health could decline before we even reach care home stage. We may find its been the wrong decision but for now we want to allow him some time at home whilst he has most of his faculties. Time will tell if we should have fought hard against discharge.

 

[nita]

@gazgreen01 - I think they can make a definitive diagnosis of vascular diagnosis with a CT (?) scan. They can see the damage in the vascular system in the brain.

 

[maggie6445]

Hi, no he did not. Sorry to hear about your dad. And I did ask again on Thursday does he definitely have a diagnosis of vascular dementia and they stated yes. When he was admitted before Christmas he was also delarius for a 24 hours period due to severe infection and never fully recovered. Do you think I should ask for further assessment by psychiatrists, given its been almost 6 weeks since they "offerered" diagnosis. That was the word she used with me. As though I could somehow reject it.x

Sorry I can't give further advice as dad was admitted with a fall, pressure sore and developed delirium. He sadly died within 3 months of heart failure , low pulse rate ,which apparently was the cause of the fall. He was never assessed for dementia but prior to admission he seemed fine for a 92 year old! He was still driving,I went out with him regularly and would definitely have stopped him if he wasn't safe!
We were asked if he had dementia on admission ,said we didn't think so and that's when we were told had delerium and that he may be referred to the memory clinic but it would be six months after delerium.