Home support

[biddulph]

Hi, I'm a new member

Within the past few months my dad has been investigated for vascular dementia and we are in the process of waiting for a second appointment to obtain the results of scans. Whilst waiting for these results dad has had a routine operation 3 weeks ago and has had to remain in hospital due to developing an infection. Thankfully he is on the mend and the op was a success. Sadly his memory loss, confusion and hallucinations have increased ten fold together with new symptoms of wandering especially during the night. His complete change in behavior can no longer be put down to infection, dehydration or ward environment we are told. Mum is very frail and I don't live nearby so it is a very scary time for us. Please could anyone inform me of what support and NHS packages of care you have found useful or may be available so that we can keep dad in our family home for as long as possible. Professionals have concerns as do I that due to the above circumstances mum will not be able to care for dad at home. We have been asked to attend a meeting on 24th July where discharge to a care home is high on the agenda. As I'm sure many of you will understand this is all happening so quickly and we are not ready for it. He has been such a lovely dad that the thought of not having him at home breaks my heart.

Many thanks for any advice you may have x

[FifiMo]

Hiya Biddulph and welcome to Talking Point.

Many of us on Talking Point have had to go through similar situations which you are faced with at the moment and it is very hard to deal with isn't it. Thing is, not one of us would ever want to have to put our relatives into care if we could avoid it. With dementia however, the deteriorations can be so bad that being looked after at home no longer becomes viable. I don't think that this is a failure on any of our parts and can in fact be a selfless act because you are putting your dad's needs before anyone elses.

If the professionals are talking care homes then there must be a reason for this and in this day and age with money being tight, they are not going to be making recommendations like that unless they are absolutely necessary. Another thing to consider also is your mum's help and as much as she would like to continue caring for her husband at home, it wouldn't help anyone if her own health deteriorated because it was just too much work for her to cope with. The caring doesn't end just because someone is in a care home. You and your mum will still be carers but with perhaps the advantage of not having to do all the physical side of caring. This would allow you to visit your dad and spend quality time with him and if it suited your mum she could visit all day every day if she so wished. If a care home is what is needed then you and your mum could help a lot by finding him the best one in the area where your mum would be able to visit regularly. You know him better than anyone else and you will know the right home when you see it. Please don't forget also that the home is not just for your dad but it provides a whole lot of support for relatives too. Someone to hold your hand throughout this journey.

Hope this helps and that your meeting works out ok for all of you,

Fiona

[biddulph]

Hiya Biddulph and welcome to Talking Point.

Many of us on Talking Point have had to go through similar situations which you are faced with at the moment and it is very hard to deal with isn't it. Thing is, not one of us would ever want to have to put our relatives into care if we could avoid it. With dementia however, the deteriorations can be so bad that being looked after at home no longer becomes viable. I don't think that this is a failure on any of our parts and can in fact be a selfless act because you are putting your dad's needs before anyone elses.

If the professionals are talking care homes then there must be a reason for this and in this day and age with money being tight, they are not going to be making recommendations like that unless they are absolutely necessary. Another thing to consider also is your mum's help and as much as she would like to continue caring for her husband at home, it wouldn't help anyone if her own health deteriorated because it was just too much work for her to cope with. The caring doesn't end just because someone is in a care home. You and your mum will still be carers but with perhaps the advantage of not having to do all the physical side of caring. This would allow you to visit your dad and spend quality time with him and if it suited your mum she could visit all day every day if she so wished. If a care home is what is needed then you and your mum could help a lot by finding him the best one in the area where your mum would be able to visit regularly. You know him better than anyone else and you will know the right home when you see it. Please don't forget also that the home is not just for your dad but it provides a whole lot of support for relatives too. Someone to hold your hand throughout this journey.

Hope this helps and that your meeting works out ok for all of you,

Fiona

Hi Fiona,
Your absolutely right in your reply and reading it puts a difficult and emotive situation into perspective......Thank you

[ggma]

Hi and Welcome

As explained above, I have always regarded my Mum having to live in a care home as a way of keeping her safe over the full 24hrs a day, she lives in a lovely friendly home where the staff are very caring, and I can visit when ever I want and stay as long as I want, as a family we still take Mum out, have her home etc. so we see the care as 'Shared Care'.

We like you had to make the decison after Mum was in hosptial, she was just not able to come home and be safe, it was very hard, but looking back we made the right decision, and Mum is now happy and content.

We all understand here how hard the decison you and your Mum have to make is, so sending my thougths, and take care.

[KAnne]

Hi, I'm a new member

Within the past few months my dad has been investigated for vascular dementia and we are in the process of waiting for a second appointment to obtain the results of scans. Whilst waiting for these results dad has had a routine operation 3 weeks ago and has had to remain in hospital due to developing an infection. Thankfully he is on the mend and the op was a success. Sadly his memory loss, confusion and hallucinations have increased ten fold together with new symptoms of wandering especially during the night. His complete change in behavior can no longer be put down to infection, dehydration or ward environment we are told. Mum is very frail and I don't live nearby so it is a very scary time for us. Please could anyone inform me of what support and NHS packages of care you have found useful or may be available so that we can keep dad in our family home for as long as possible. Professionals have concerns as do I that due to the above circumstances mum will not be able to care for dad at home. We have been asked to attend a meeting on 24th July where discharge to a care home is high on the agenda. As I'm sure many of you will understand this is all happening so quickly and we are not ready for it. He has been such a lovely dad that the thought of not having him at home breaks my heart.

Many thanks for any advice you may have x

Oh dear, a very stressful time this biddulph and my heart goes out to you

Infection can actually make dementia symptoms massively worse and the effects last quite a while, I wouldn't give up hope that your father may rally round from this particular low. Wandering tends to be a stage, quite a short stage sometimes so perhaps you could ride this out.

If you'd like to give your dad a try at home, if your mum wants this, if this is the route you want to go, then there are very many things that can be done to help.

A care package, careres coming in every day, four times, to help your dad with needs
Telecare, watching over the exits that trigger warnings should you dad wander
Outreach workers to provide some stimulation for your dad
Daycare, usually funded within the package, to give your mum a day or two to herself
Respite voucher for carers (you mum is it?) which will giver her, over a year, four weeks off - either with extra in home care, or differing periods for your dad to go into a home. (this help for careres is provided via a voucher system, which are allocated to your mum and may be exchanged for whatever she chooses)
You dad will be entitled to Attendance Allowance which may help you and you mum will be entitled to Carers Allowance which may also help
All this will be no doubt partially funded by the council, with a contribution from your dads income (i'm surmising as I don't know your parents income level)

....there are other things too but remember, do not panic the care system is a mire but if you can get through it, there is help out there
Still very hard though and good luck to you all

[bunnies]

A number of things came to mind when I read your post. Obviously your family as a whole has to decide what is best for your Dad. It's your mother I would be concerned about, since others have said, looking after someone at home with dementia is difficult, and inevitably gets harder over time. If your mother feels she does not want to have to face this, or you think she is physically unable to do so, then I agree that finding a good care home would be the best thing to do.

I'm afraid I do not agree that professionals wouldn't be talking about a care home if it wasn't necessary, since in my experience if your father would be self-funding it is very likely that the professionals would suggest a care home as the only option from the first time he appears in hospital. This is because it is a safe option for them, and costs them nothing. So I would make sure that you all agree with this plan and do not feel coerced into it.

However, if your family (including your mother) would like your father to come home, at least for the time being, it may be possible. I also don't agree that staff can say his current confusion is not because of recent illness and being on a ward - you won't know about this until he is at home. In my experience with a relative, and in contact with others in the same situation, hospital stays can make dementia patients deteriorate very fast, and they may (though may not) improve when they are back in their home environment.

If your father is discharged home he ought to get some help from the NHS Intermediate Care Team, who in my experience were marvellous at sorting out issues in the home environment, over a maximum period of 6 weeks after a hospital stay. Also, during this time it is easier to assess whether it is going to work having your father at home, and how much carer input he may need.