From own home to nursing home

[Perfectdaughter]

I’m sorry this is so long but I am flailing around trying to work out what to do for best. Is it too late to move my 94 year old father who has mid/late stage alzheimers and vascular dementia from his own home into a care home? I’ve found a good care home with a dementia/nursing care unit. It has links with an excellent local hospice and offers care all the way to the end. My fantasy is that there will be a seamless transition when I move my father there and all our problems will melt away. My fear is that the care will be no better than what he already receives at home and that the move will kill him off and I will feel guilty forever for wrenching him from his own home.

My father has bladder cancer, prostate issues, kidney disease and a blood disorder. He has reached his ‘ceiling of care’ for these conditions and is on the local palliative care register.

He still lives in his own house, with live in carers. We are self funding. I spend one day with him each week and I cover for the carers when they are on holiday. This has worked well for over two years – he has felt secure in the house he’s lived in for 40+ years and the carers have enjoyed the work and become very attached to my father. However this year his condition has nosedived and I am finding it hard to manage the situation. The carers are coping but I am feeling guilty as I sense that they are struggling. I certainly find my days with him difficult and draining. He groans and calls out all the time and tells us he wants to die. The carers are very loyal and say that they will stay with him until the end but I am not sure I should be asking them to do this and I do not trust the degree of help we will receive from the local palliative care team. Our experience has been that the nurse who is assigned to us has a huge caseload and is relieved that she can leave us to it.

What would you do?

 

[Louise7]

If you and the carers are struggling to best help with your Father's needs then in your position I would do what is best for him. The transition from home to care home is difficult for some but has worked well for others so it's difficult to predict how the move would affect him. You have found a good care home which presumably is able to meet all of his needs, particularly the palliative care aspect (have you checked with the home that they are happy to take your Father - have they assessed him?). A lot of people feel guilty about moving someone into a home but someone posted a really good tip recently. Re-read your message as though someone else had posted it. What would you advise them to do? You are likely to receive a variety of responses here but only you can decide what is best for your Father.

 

[love.dad.but..]

As far as the carers are concerned and they sound wonderful...if they say they are coping and even though he has declined still envisage being able to look after him until end of life then accept that as giving you reassurance. If this wasn't the case the carers or agency if you used one would soon let you know. There is no reason why you should feel any guilt for the carers doing a professional job they are being paid to do. In terms of you finding visiting and seeing his decline is understandable and it is very hard and we all have to make decisions that are best for our loved one but also best for us as carers. A move may or may not affect your dad...this could be for better or worse...all of us who have made the step have agonized...there are many threads on here...but I am sensing from your post you are perhaps looking for more support towards end of life and if you feel in the community that will not be provided then a nursing home may be an option as end of life draws nearer equally you may find with a bit more searching for support and insistence through the GP etc...the current arrangements will be good enough to keep your dad painfree and comfortable. A good nursing home will provide both you and your dad with support so really it is something only you can decide weighing up pros and cons in your dads best interests

 

[jugglingmum]

Have you sat down with the carers and had an honest and frank conversation with them.

If they are there 24/7 and have know him for 2 years and they have dealt with this sort of thing before then they will know what they can deal with.

On the other hand I realise that this would mean that they would need to find another live in post.

there is only a certain level of comfort which can be achieved based on end of life scenarios I have read on here so be realistic in what you can expect

Does the hospice have an outreach time that could provide support near the end, or is the nurse you mention the local hospice at home service?

 

[Perfectdaughter]

Thank you Lousie7 and Love.dad.but for your replies. I feel much less alone having read your posts. TP has been a lifesaver for me; reading posts from others who are going through the same thing and who 'get it'.
I visited the care home on Friday and was told that the assessment is only good for 6 weeks so not to call on them before I was ready to act, so he has not yet been assessed. I'm a bit scared they'll say he's too difficult to take on. I've made an appointment with my father's GP to discuss his care but the earliest they could fit me in is the end of this month - that's the level of responsiveness in this area.

 

[Shedrech]

hello @Perfectdaughter
when you talk with the GP mention Marie Curie nurses as a GP has to make a referral on to them. you cannot yourself request their help
I don't wish to suggest you spend all your dad's money, but might adding a third carer take away some of your concerns
maybe have a chat with the manager of your local hospice

 

[Perfectdaughter]

Have you sat down with the carers and had an honest and frank conversation with them.

If they are there 24/7 and have know him for 2 years and they have dealt with this sort of thing before then they will know what they can deal with.

On the other hand I realise that this would mean that they would need to find another live in post.

there is only a certain level of comfort which can be achieved based on end of life scenarios I have read on here so be realistic in what you can expect

Does the hospice have an outreach time that could provide support near the end, or is the nurse you mention the local hospice at home service?

You are right that I need to talk to the carers about this. I have spoken to them in general terms and asked how they manage when he is shouting and screaming and they always say they can do it. I haven't yet told them I've looked at a nursing home. As you say, this would mean they are out of a job, and I think they will take it very personally i.e. their care isn't good enough. Although one of them is qualified in her home country as an intensive care nurse they haven't dealt with anything as extreme as this on their own - their experience has been in caring for mildly demented people in the independent living unit of a care home and they cared for my friend's mother at home until her death from a stroke - she was often hospitalised and needed hoists etc, but she didn't have dementia.
Yes, the nurse I mention is the local hospice at home service. There is outreach but it has not been offered as we are deemed to be coping and he is not yet at 'end of life'.
The care/nursing home I've found is not in my father's area (I didn't find any that looked possible there) so he would have to change GP and hospital.

 

[Perfectdaughter]

hello @Perfectdaughter
when you talk with the GP mention Marie Curie nurses as a GP has to make a referral on to them. you cannot yourself request their help
I don't wish to suggest you spend all your dad's money, but might adding a third carer take away some of your concerns
maybe have a chat with the manager of your local hospice

Thank you for your suggestions. The hospice at home nurse has mentioned Marie Curie nurses but she didn't put anything in place. As Love.dad.but said, I might need to lean more heavily on the GP (when I get to see him) to get the services. This is why I thought the care/nursing home would be a better bet in that they would fight the battles for me. Wishful thinking?
A third carer could have helped (at present it's me) and I suggested it but the carers have said that they prefer to do it all or nothing. I'm a bit stuck there as it's a private arrangement, not through an agency.

 

[Shedrech]

hi @Perfectdaughter
I must admit I'm never comfortable hearing that carers are saying such things - you alone know how well they are looking after your father and he is your only concern NOT whether the carers like what you suggest
this arrangement has worked for 2 years but something has caused you to look for a nursing home
a lot has been and is solely on your shoulders - maybe it is time to have a team around your father so you can be more relaxed
personally, with all you have described, I'd be calling the manager of the home and requesting that assessment

 

[Perfectdaughter]

hi @Perfectdaughter
I must admit I'm never comfortable hearing that carers are saying such things - you alone know how well they are looking after your father and he is your only concern NOT whether the carers like what you suggest
this arrangement has worked for 2 years but something has caused you to look for a nursing home
a lot has been and is solely on your shoulders - maybe it is time to have a team around your father so you can be more relaxed
personally, with all you have described, I'd be calling the manager of the home and requesting that assessment

Thank you for this. This evening I'm leaning more towards the care home solution. You are right about not feeling comfortable with the carers calling the shots.
No doubt I will change my mind 100 times tonight - so much disruption, he'll have to change GP and hospital consultant, the care home won't give him the one to one he's used to, the care home won't accept him and then the carers will have got the hump and left, etc. etc.

 

[love.dad.but..]

Thank you for this. This evening I'm leaning more towards the care home solution. You are right about not feeling comfortable with the carers calling the shots.
No doubt I will change my mind 100 times tonight - so much disruption, he'll have to change GP and hospital consultant, the care home won't give him the one to one he's used to, the care home won't accept him and then the carers will have got the hump and left, etc. etc.

I tried live in carers for my dad but it wasn't successful and I moved him into a nursing home. However one of the carers the agency sent wanted dad to fit into her routine rather than the other way round which was totally not what I expected or wanted for dad. The agency replaced her. If you are doubtful that these carers have the necessary expertise to take your dad to end of life then to give you peace of mind and less worry perhaps the care home would be a good option

 

[Louise7]

Try not to catastrophise. I know it's easier said than done but thinking the worse without considering all the potential benefits will just cause you stress. First things first, contact the home and ask them to visit for an assessment rather than keep worrying about whether they will accept him or not. Take one step at a time - there are plenty of us on here who have been in a similar position and can offer you help and advice at every stage. My Mum had to go into a home a few months ago and the home arranged for the change of GP themselves, they are used to doing this so it shouldn't be something that you would need to do. Write down all the things you want to ask during the assessment and make sure that you cover all details about your Father's condition and the level of care he requires so that they are able to make a fully informed decision. Hope everything goes well.

 

[Perfectdaughter]

Try not to catastrophise. I know it's easier said than done but thinking the worse without considering all the potential benefits will just cause you stress. First things first, contact the home and ask them to visit for an assessment rather than keep worrying about whether they will accept him or not. Take one step at a time - there are plenty of us on here who have been in a similar position and can offer you help and advice at every stage. My Mum had to go into a home a few months ago and the home arranged for the change of GP themselves, they are used to doing this so it shouldn't be something that you would need to do. Write down all the things you want to ask during the assessment and make sure that you cover all details about your Father's condition and the level of care he requires so that they are able to make a fully informed decision. Hope everything goes well.

Thank you for your good advice about first things first and going ahead with the assessment. I'm not good at taking one step at a time - I keep flying ahead of myself trying to get things perfect. I'll try and use that energy to write down all the details about my father's condition, as you have suggested.

 

[love.dad.but..]

Thank you for your good advice about first things first and going ahead with the assessment. I'm not good at taking one step at a time - I keep flying ahead of myself trying to get things perfect. I'll try and use that energy to write down all the details about my father's condition, as you have suggested.

Sometimes with dementia no matter how we try to do and organise things in a perfect way it isn't always possible. All we can do is the best we can at each stage