Care at home in the later stages

[miketheturner]

I've been reading the available Stage symptoms and I think my wife is now into Stage 6d/6e. She was taken into hospital recently with an infection diagnosis but they now conclude that her difficulties are Alzheimer's related, Understandably, they want their bed back and I'd like her at home. The won't discharge her until they're sure that I can manage my wife at home and to do that I need support.
I'm guessing that many carers have a spouse/partner in the same stage (late Stage 6) and I would welcome some advice on the type of support package that the spouse/partner carer finds most useful.
I've been pointed at Micro-providers via the Village Agents charity (with NHS agreement) but they and I am struggling to find a daily attendance timetable for the providers that's practical for both the provider and me.

 

[Agzy]

I've been reading the available Stage symptoms and I think my wife is now into Stage 6d/6e. She was taken into hospital recently with an infection diagnosis but they now conclude that her difficulties are Alzheimer's related, Understandably, they want their bed back and I'd like her at home. The won't discharge her until they're sure that I can manage my wife at home and to do that I need support.
I'm guessing that many carers have a spouse/partner in the same stage (late Stage 6) and I would welcome some advice on the type of support package that the spouse/partner carer finds most useful.
I've been pointed at Micro-providers via the Village Agents charity (with NHS agreement) but they and I am struggling to find a daily attendance timetable for the providers that's practical for both the provider and me.

A great question and I will be watching for replies with interest as I too have my partner at or about that level according to latest memory test scores.

 

[smithdee]

A great question and I will be watching for replies with interest as I too have my partner at or about that level according to latest memory test scores.

Hi @miketheturner - I would say my dad is probably stage 7, and he is still cared for at home by my mum. It is difficult, and some days exhausting and I do sometimes wonder if he would be better off in a care home where they can provide 24/7 care.
Whilst we have carers come in to dad twice a day, he cannot do anything for himself to help. He now sleeps separately from my mum in an electric bed, and has a bed bath and pad change every morning by the carers. He can barely walk, only a shuffle, which in the last few weeks has got worse which has resulted in carers using a wheelchair to get him from his bed to his chair in the lounge.
I would advise you speak to a social worker/memory clinic for advice on how to move forward - they were the ones who put the care agency in for my dad. The electric bed was provided by the district nurses following an assessment of him and we have also had to fund an electric riser chair to bring my dad to his feet as he has lost his ability to push himself up off the sofa/stand. To be honest, I don't think we could manage without these now, and a lot of the other equipment that was put in place following assessments carried out by OT, DN, GPs etc and without it, I don't think dad would be able to be cared for at home.

 

[Agzy]

Hi @miketheturner - I would say my dad is probably stage 7, and he is still cared for at home by my mum. It is difficult, and some days exhausting and I do sometimes wonder if he would be better off in a care home where they can provide 24/7 care.
Whilst we have carers come in to dad twice a day, he cannot do anything for himself to help. He now sleeps separately from my mum in an electric bed, and has a bed bath and pad change every morning by the carers. He can barely walk, only a shuffle, which in the last few weeks has got worse which has resulted in carers using a wheelchair to get him from his bed to his chair in the lounge.
I would advise you speak to a social worker/memory clinic for advice on how to move forward - they were the ones who put the care agency in for my dad. The electric bed was provided by the district nurses following an assessment of him and we have also had to fund an electric riser chair to bring my dad to his feet as he has lost his ability to push himself up off the sofa/stand. To be honest, I don't think we could manage without these now, and a lot of the other equipment that was put in place following assessments carried out by OT, DN, GPs etc and without it, I don't think dad would be able to be cared for at home.

Thank you. I too have self funded the electric beds and the 2 recliner riser chairs we now have. I have also had handrails/grab handles fitted all over the place and, because Pauline kept tripping on the front door step I had a refurbished ramp put to front door that has proved a godsend. My problem is my health as caring is getting more of an issue and given I can’t imagine her sons Doing what I do maybe I do need a long chat with Social Services if only for advice.

 

[miketheturner]

Thanks for your response. How does your mum cope when the carers aren't there, if your dad needs to go to the toilet. I can't lift my wife on my own, let alone get her to the toilet. She presently has a catheter for having a pee but she needs nursing support to use a commode. I watched her in the hospital over the weekend and it took 2 nurses to get her from bed to the commode and then to clean her up and get her back into bed. What's your mum's experience of such events please.

Hi @miketheturner - I would say my dad is probably stage 7, and he is still cared for at home by my mum. It is difficult, and some days exhausting and I do sometimes wonder if he would be better off in a care home where they can provide 24/7 care.
Whilst we have carers come in to dad twice a day, he cannot do anything for himself to help. He now sleeps separately from my mum in an electric bed, and has a bed bath and pad change every morning by the carers. He can barely walk, only a shuffle, which in the last few weeks has got worse which has resulted in carers using a wheelchair to get him from his bed to his chair in the lounge.
I would advise you speak to a social worker/memory clinic for advice on how to move forward - they were the ones who put the care agency in for my dad. The electric bed was provided by the district nurses following an assessment of him and we have also had to fund an electric riser chair to bring my dad to his feet as he has lost his ability to push himself up off the sofa/stand. To be honest, I don't think we could manage without these now, and a lot of the other equipment that was put in place following assessments carried out by OT, DN, GPs etc and without it, I don't think dad would be able to be cared for at home.

 

[sdmhred]

Mum is about entering this stage. We have recently moved to residential care which is going well.

I thought about the choices. Mum would have largely been either bed or chair bound as she would have needed carers x 2 for transfers with hoist. Getting out of the house would have been extremely difficult. She would have had to wait in a wet or soiled pad.

We had a temporary package and it felt pretty awful just having to wait for them and frequently having meals or TV interrupted when they arrived

My admiral nurse said it would have been hard to source the care package due to demand,

In the home there is So much more freedom. Mum can get up when she chooses, use the loo rather than commode, get help For the loo when needed. Plus all the activities.

I loved looking after her in the mid stage but as we progressed it was better quality of life for both of us to move to residential. But everyone’s situation is different and had she been more mobile she would still be at home,

Mum was always adamant she didn’t want a home but had accepted it and is very happy.

 

[smithdee]

Hi Mike,

Sorry, have only just seen your message from 10th Dec so apologies for the delay in replying.
My dad is so far gone now that he doesn't get a pad change or get up for the toilet during the day now. As awful as it is, we came to the realisation that the fight he was putting up with us trying to get him to the toilet at mid day just wasn't worth it. He would resist and fight when we eventually got him there. Some days he would be dry at mid day and then when sat on the toilet he didn't understand how to go anymore or why he was there.

 

[Goldenthyme]

Hi Mike,

Sorry, have only just seen your message from 10th Dec so apologies for the delay in replying.
My dad is so far gone now that he doesn't get a pad change or get up for the toilet during the day now. As awful as it is, we came to the realisation that the fight he was putting up with us trying to get him to the toilet at mid day just wasn't worth it. He would resist and fight when we eventually got him there. Some days he would be dry at mid day and then when sat on the toilet he didn't understand how to go anymore or why he was the

 

[Goldenthyme]

Hallo Mike the Turner
i looked after my husband at home for many years and the last few were just about copable with until he became incontinent. I had acquired all the necessaey equipment, even had a hard floor put down in the bedroom! I wanted nothing more than to look after him in the most comfortable way so that he could continue to live his life as happily as possible. But in the end, the inevitable happened and he was unable to
control his movements and lost the strength to get onto the Sara Steady (a type of walker which you push). I had had to beg the NHS to supply me with this which was so frustrating. He was far too heavy for me to help him move. I found the whole business of trying to get the authorities to help you to care for someone at home was so frustrating. i Went into the cost of having home carers, but this would have meant four times a day to keep him clean and as said in an earlier post, you never knew when the carers would be able to get here, they are so stretched. I had had some experience of this as he had carers for a period following a fall on the stairs and hospitalisation.

So eventually, after him being unable to move , he went into a local nursing home. I think he had reached a point mentally where he thought he was going into hospital. He is so well looked after now. Everyone is so kind and I cant fault the home . I have also to remember how difficult it is to care for someone with dementia and how each resident in the home has a different issue.

i think all the painful feelings were with myself at the time and the shock of the break up of our life together of 60 years or more. But you do develop a positive attitude by visiting him and chatting about everything under the sun, family etc. and taking small things like soft fruit he can eat ( he is now rejecting anything he has to chew). Etc. My children were insistent about it all at the time and between us, with some help from the local authority, we are managing the fees and I am still in my own home. The whole financial arrangement took about eight months to complete and was something of a nightmare. Also, now he needs more help then I could ever give him at home, so I am very grateful he is there. With very best wishes to all.