Care in nursing home or take home?

[Janey66]

Hi all, this is my first post. My Dad was diagnosed with Alzheimer’s 18months ago and has been managing well at home with my
Mum. The progression has been very slow, and so he has enjoyed a good life. However 4 weeks ago he became very breathless and long story short, he was admitted to hospital and was diagnosed with advanced lung cancer. Never a smoker, we are at a loss to explain this sudden determination in his health. He was discharged home but hadn’t been eating and was very weak, following a fall and a return to hospital, we have had to made the difficult decision for him to be placed into a nursing home. He is prognosis is ‘up to 8 weeks’. We are unable to see him, nursing staff seem very rushed and not able to give us much information over the phone. My mum spoke Dad tonight and he is so very sad and doesn’t understand why no-one is coming in to see him. We are really struggling as a family to help. The Care home manager was sympathetic but said that it can take up to 4 weeks for residents to settle. Does anyone have any tips for us.?We are writing letters and sending cards in - hoping that these will be read to him by staff. He can’t change the channels on the tv in his room. I have mentioned that he loves listening to Classic FM but don’t know even if he has a radio in his room. I am thinking at looking at possible taking out and trying to source 24hour carers for the time he has left. Would appreciate your thoughts as don’t really know where to turn. Janey66

 

[lemonbalm]

Hi all, this is my first post. My Dad was diagnosed with Alzheimer’s 18months ago and has been managing well at home with my
Mum. The progression has been very slow, and so he has enjoyed a good life. However 4 weeks ago he became very breathless and long story short, he was admitted to hospital and was diagnosed with advanced lung cancer. Never a smoker, we are at a loss to explain this sudden determination in his health. He was discharged home but hadn’t been eating and was very weak, following a fall and a return to hospital, we have had to made the difficult decision for him to be placed into a nursing home. He is prognosis is ‘up to 8 weeks’. We are unable to see him, nursing staff seem very rushed and not able to give us much information over the phone. My mum spoke Dad tonight and he is so very sad and doesn’t understand why no-one is coming in to see him. We are really struggling as a family to help. The Care home manager was sympathetic but said that it can take up to 4 weeks for residents to settle. Does anyone have any tips for us.?We are writing letters and sending cards in - hoping that these will be read to him by staff. He can’t change the channels on the tv in his room. I have mentioned that he loves listening to Classic FM but don’t know even if he has a radio in his room. I am thinking at looking at possible taking out and trying to source 24hour carers for the time he has left. Would appreciate your thoughts as don’t really know where to turn. Janey66

Hello @Janey66 . That is a hard situation. My Dad was suddenly diagnosed with terminal lung cancer (not smoking related) whilst I was moving him and my mum to live closer to me. He went into a nursing home shortly after the move, when things became too difficult to have him at home with mum. I did consider trying to get nursing at home for him but he needed a hoist to move by then and I still can't see how it could have worked. Do you have any local Macmillan nurses who you could speak to about it? This is even more difficult for you under the current restrictions. Could you deliver a radio to the nursing home ready tuned to Classic FM?

 

[Jessbow]

A hospice might be better

 

[canary]

Hello @Janey66 and welcome to DTP

I am so sorry to hear about your dad - that must have come as a shock.

I understand your fears and concerns, but honestly, hun, your dad has terminal cancer and will need a lot of nursing care. He is in a nursing home as opposed to a care home because in a nursing home there will be at least one qualified nurse on duty 24/7 - and he is going to need it. This is not something that you can realistically reproduce at home, even with live in carers. If he suddenly required painkillers you would have to wait until the district nurse could get there.

The pandemic is causing problems in care/nursing homes all over the country, but I know that the homes are trying to get ways of allowing visits. You may just have to be persistent.

 

[Janey66]

Hello @Janey66 and welcome to DTP

I am so sorry to hear about your dad - that must have come as a shock.

I understand your fears and concerns, but honestly, hun, your dad has terminal cancer and will need a lot of nursing care. He is in a nursing home as opposed to a care home because in a nursing home there will be at least one qualified nurse on duty 24/7 - and he is going to need it. This is not something that you can realistically reproduce at home, even with live in carers. If he suddenly required painkillers you would have to wait until the district nurse could get there.

The pandemic is causing problems in care/nursing homes all over the country, but I know that the homes are trying to get ways of allowing visits. You may just have to be persistent.

Hi and thanks so much for your reply. It makes sense, I know, I think it’s just so difficult in these circumstances but I know in my heart you are right. Seeing my Dad in pain at home and not being able to access care for him quickly would be more difficult for everyone. We have explored Hospice care but this has to be ‘booked in’ and as this was so sudden we weren’t able to access it at short notice. They are also sadly on lockdown and won’t allow visitors so I’m not sure this would be any better for him. I will keep being persistent - I have badgered the manager and he has agreed to arrange a Zoom call today with mum, me and Dad so hopefully that will help. We are also trying to send in photo postcards with messages from us all and the grandchildren to remind him we are thinking about him. Does anyone have any ideas of something that I could give to the nursing home so that they know my dad a bit better, such as favourite tv programmes or radio, food etc? Thanks again.

 

[Helly68]

Photographs of you all, labelled in an album? Yu can have photos put onto a fleece blanket or cushion, Mummy likes to hug the cushion with her grandchildren on.

I also sent in a "talking card" (amazon or elsewhere) as Mummy doesn't really do Zoom or phone very well. You record a spoken message that plays as the card opens. She apparently really liked it.

 

[Hoped]

I am so sorry. My Dad deteriorated very quickly too , we were not getting much information from the hospital, I know the pandemic meant they were so busy and like you we wanted to bring him home but mum was shielding and it was difficult. However I spoke to the palliative care people at the hospital and explained, they assessed Dad and the next day he was transferred to a local hospice. They had many beds available. This just meant we ( 2 only at a time) could be with Dad all day. On the night he passed they said we could stay, so we were lucky to be with him until the end. So perhaps speak to the palliative care direct and the discharge people. I wish you and your family well .

 

[Janey66]

Photographs of you all, labelled in an album? Yu can have photos put onto a fleece blanket or cushion, Mummy likes to hug the cushion with her grandchildren on.

I also sent in a "talking card" (amazon or elsewhere) as Mummy doesn't really do Zoom or phone very well. You record a spoken message that plays as the card opens. She apparently really liked it.

Hi Helly68, thanks for your suggestions, we tried zoom today, and he was really unresponsive. We have written some letters and sent in some photo postcards which we hope with bring a smile to his face. We have sent a photo album in with lots of old photos of him as a child with his siblings in East London, so we hope this may help. We try to get a cushion/blanket sorted too. thanks again for your post.

 

[Janey66]

I am so sorry. My Dad deteriorated very quickly too , we were not getting much information from the hospital, I know the pandemic meant they were so busy and like you we wanted to bring him home but mum was shielding and it was difficult. However I spoke to the palliative care people at the hospital and explained, they assessed Dad and the next day he was transferred to a local hospice. They had many beds available. This just meant we ( 2 only at a time) could be with Dad all day. On the night he passed they said we could stay, so we were lucky to be with him until the end. So perhaps speak to the palliative care direct and the discharge people. I wish you and your family well .

Hi Hoped,
Thanks for taking the time to write. It must have been a difficult time for you. When Dad was in hospital we spoke to the Palliative Care Team but we understand that the Hospice is not accepting anyone who hasn't been 'booked in', we were also told that the local Hospice does not allow visits currently so this could make things even more difficult. We are just trying to make the best of it, and hope for better news tomorrow. Thanks and wishing you well during this difficult time.

 

[Janey66]

Hello @Janey66 . That is a hard situation. My Dad was suddenly diagnosed with terminal lung cancer (not smoking related) whilst I was moving him and my mum to live closer to me. He went into a nursing home shortly after the move, when things became too difficult to have him at home with mum. I did consider trying to get nursing at home for him but he needed a hoist to move by then and I still can't see how it could have worked. Do you have any local Macmillan nurses who you could speak to about it? This is even more difficult for you under the current restrictions. Could you deliver a radio to the nursing home ready tuned to Classic FM?

Hi, thanks for taking the time to reply, I think my Dad would need a hoist and this would not have been possible for my mum to operate on her own, even with carers coming in. You still feel guilty as he is so unhappy at the moment in the Home. I will try to speak to the Macmillan nurses tomorrow, and will try to get a radio brought in for him. Thanks for your feedback, and I wish you and your family well.

 

[Susanarnold77]

Hello @Janey66 how are you getting on? There is a hospice at home team who look after palliative patients. Could your dad not be referred to them?

 

[Janey66]

Hello @Janey66 how are you getting on? There is a hospice at home team who look after palliative patients. Could your dad not be referred to them?

Hi, sorry its been a while that I have been on TP. Sadly my Dad passed away shortly after my last post on the forum. The NH allowed my mum 1 visit of 1 hour the night before, and I think that gave her a lot of comfort. The poor staff at the NH couldn't have done more, it was just a terrible situation with COVID etc. I wanted to take this opportunity to thank everyone who replied, and I found it so helpful to get all your advice and support. This service is an absolute lifeline to everyone struggling with this terrible disease. Keep up the good work.

 

[love.dad.but..]

I am so sorry that your dear very loved dad has passed away and glad that your mum was able to spend a little while with him, that would have been a comfort to him and for your mum. He was given every possible care by you both when he needed it most, you both could not have done anymore, I hope as time goes by you will take comfort from that x

 

[Izzy]

I’m sorry for you loss @Janey66. Sending my condolences and wishing you strength.

 

[Sarasa]

Sorry to hear that news @Janey66, but glad your mother was able to say her goodbyes.

 

[Bunpoots]

My condolences @Janey66

 

[canary]

Im so sorry to hear your news
Im glad that your mum was able to visit
Please be gentle with yourself now
(((((((((((((((((((((((((((((((hugs))))))))))))))))))))))

 

[Wildflowerlady]

Sorry to read of your loss tonight @Janey66 , my dad is originally from East London too ( Stepney ) he recently went into a CH. I too am glad your mum was able to visit your dad and that it gave her some comfort at the end. ?

 

[jennifer1967]

my great aunt was from east ham in east london sorry to read of your loss janey66