Complex needs

[Felice2908]

Hi, looking for some advice for my father...

After several months in various hospital wards after a fall that left him with a fractured hip and pelvis he is now in a nursing home.

Before his fall he'd been living on his own, albeit just about, with carers visiting twice a day and getting his own meals himself (breakfast, lunch and dinner) after his wife, my Mum, had died 3 months previously.

At the time of his fall he was undergoing tests for dementia. Since then, insofar as I'm aware, he has been diagnosed with Alzheimers.

He is 87 now but had a stroke which left him paralysed down his left side in his early 50s.

He is now bed bound, in the nursing home, with very little stimulation - sadly, I live several hundred miles away - and other members of the family, who live much closer have other commitments too. Sadly, the hope that my Dad might make friends with other residents in the home is very unlikely, given their own complex needs/advanced stage of Dementia.

I.e. he is grieving, has no mobility and is also coming to terms with his diagnosis of 'short term memory loss' as he refers to it.

I visit every 3-4 weeks (which breaks my heart each time because I want to be able to help/visit more often but can't, not because I have children/grandchildren, for example, of my own but because I just need to work to pay my mortgage) but I'm trying to find ways in which I can engage with him remotely in between face to face visits as well as help him to engage with things himself without me too...

So far, I have sent letters and phoned daily (updating him regularly on the national lottery - he is desperate to win big so he can get out of the home and be treated so he can live independently again) but I'm struggling for ideas and am looking for any advice from anyone on the forum...

I've thought about playing battleships or noughts and crosses over the phone; buying an amazon echo show to be able to talk to him on video; getting a simple smartphone (he has a doro flip phone but struggles to open it with only one hand); getting a device that enables me to manage his device's remotely (MDM for TV, mobile phones, tablets etc based on recommendations in posts by people on this forum); enabling listening books on whatever devices he has, however they are managed, and exploring the voluntary sector, with a view to him being able to get out of his room and at least get some fresh air...

I know I am rambling now but I'm just going to post this in the hope that someone might be able to suggest ways in which I can help my Dad, who, however strict he might have been as a father (as a man of his time), may at least be able to live his final days, months, years however much time he has left as best he can...

I should also say that I'm crying my eyes out too, at the loss of my Mum, the prospective loss of my Dad and the demise of everyone else who I love, as well as my own future death...

Thank you for listening...and any help/suggestions very much appreciated

 

 

[BluTinks]

I’m sorry what do you want from us?

 

[SeaSwallow]

Welcome to Talking Point @Felice2908 . I am sorry to read about your dad’s dementia diagnosis and the loss of your mum. It must be so hard for you living so far away. But hopefully you can comfort yourself in that your dad is in a safe environment.
Unfortunately I am not tech savvy enough to advise you but hope that others come along soon to make suggestions.
You said in your penultimate paragraph that you were crying, for your mum, your dad and yourself, this is only natural but it might be useful to talk about your feelings to your GP.

 

[Weasell]

Your sadness comes over in the post. You certainly have my sympathy.

You have not had many replies and I think the reason is you need to be given more bad news.

Your dad has progressive brain disease. It’s exhausting. All the things the old dad enjoyed and wanted will have changed.

It took me such a long time to realise this with my mum. It didn’t help that they can exhibit host/ hostess syndrome when they don’t see you often, which leaves you thinking they are much more capable than they are.
Mum used to turn the TV up to a much louder volume than required, it was a futile attempt to better understand the story line, dialog ect.

If I was running a care home I would not allow an echo show due to privacy issues, but you might get lucky?
If you join the local library on his behalf then you can sign him up for Libby or borrow box. They are talking books ( on any old tablet ) completely free of charge.
I think the odds of you getting a one to one volunteer are practically zero, but would love it if you post back later and say I am wrong.
Your love for your dad is so evident, but I just think you need to manage your expectations far below where they are, and more importantly it isn’t about him missing out, but more about his how tired his poor brain is.

 

[Felice2908]

Thank you, everyone, for replying. I did question where I should post this thread, and, indeed, as BluTinks said, what am I asking from you...but I think I was just putting down in words, not expecting any answer really, just how powerless/desperate I feel. And that all the things I am trying to do are not necessarily to help my dad but perhaps to help me feel as if I'm doing something to help him...and of course feeling guilty/powerless etc all over again....

Anyway, brought down with a bump again with a phonecall from my Dad @ 3am this morning demanding that I call the police...and speaking with the night nurse thereafter...

No need to reply.

Just talking to myself with no one else really to talk with.

Thank you.

 

[SeaSwallow]

That is what we are here for, post and rant away anytime you need to, it does help. We all understand what you are going through.

 

[Gosling]

Thank you, everyone, for replying. I did question where I should post this thread, and, indeed, as BluTinks said, what am I asking from you...but I think I was just putting down in words, not expecting any answer really, just how powerless/desperate I feel. And that all the things I am trying to do are not necessarily to help my dad but perhaps to help me feel as if I'm doing something to help him...and of course feeling guilty/powerless etc all over again....

Anyway, brought down with a bump again with a phonecall from my Dad @ 3am this morning demanding that I call the police...and speaking with the night nurse thereafter...

No need to reply.

Just talking to myself with no one else really to talk with.

Thank you.

Dear @Felice2908 please remember you are never alone here. This is such a supportive and friendly community of members who have a vast amount of experience in all the various aspects of dementia.

It is so upsetting and worrying for you, of course it is, and being so far away from your Dad makes it seem even worse somehow. Talk to us on here, have a rant and let off some steam.. That's very much part of what happens on here, so please do keep with us.
Your love and concern for your Dad shines through on your posts. This disease takes it out of the person, but affects close family members so much. I do feel for you. Please remember there is always someone here who will understand

 

[Weasell]

Thank you, everyone, for replying. I did question where I should post this thread, and, indeed, as BluTinks said, what am I asking from you...but I think I was just putting down in words, not expecting any answer really, just how powerless/desperate I feel. And that all the things I am trying to do are not necessarily to help my dad but perhaps to help me feel as if I'm doing something to help him...and of course feeling guilty/powerless etc all over again....

Anyway, brought down with a bump again with a phonecall from my Dad @ 3am this morning demanding that I call the police...and speaking with the night nurse thereafter...

No need to reply.

Just talking to myself with no one else really to talk with.

Thank you.

This is the exact opposite of what you asked for as a low tech solution!
Could you send him a couple of postcards a week?
The delivery of a postcard says the person receiving it is worth the effort.
If the staff see a postcard it is the start of a conversation.’what town is on the front of this one’?
Get some heavy grade card and children’s artwork can be on the back.
The kids can walk to the postbox with you, so contribute to making grandad happy.
A lot of people 60 plus have drawers full of unwanted cards! Ask your friends?

 

[Jessbow]

Would he be able to speak to Alexa?

Alexa, play some bagpipe music
Alexa, read some poetry
Alexa, play radio 4