Nursing a loved one at home....

[Bristolbelle]

I may be jumping the gun slightly but there are very few nursing homes my side of town and fomr the calls I made earlier none that do not ask for a top-up.
So I am wondering about bringing Mum home again. In many ways she is easier to handle now as she nolonger has the mobility to wander at night,sleeps a lot etc and has lost the ability to do anything constructive enterring a phase wetritems bring her more pleasure.
I would have the option of using an upstairs bedroom so I have some access to the wet-room, buut doubt I could manage to shower her alone now anyway. Alternatively there is the bedroom her had in her granny annexe but I'm not sure ho etc.w I would manage bathing etc.
What relief is available, what happens if I the carer suffers illhealth etc? Does anyone know of a good book for resources or guidance.
I know I let her go into care before because I wasn't coping, but I really think no her conditon has progressed I might be able to deal with her needs more easily.

What do you all think?

 

[cragmaid]

Before you take such a radical step you really need to consider what happens if you are ill or just can't cope if this quiet spell takes a turn for the worse. Bringing her home and then having to go back could have a very strong effect on the progression of the disease. I think that one of the reasons that Mum has shown such an imrovement will be entirely down to her not being cared for by just one person who ended up being worn out. You have been able to relax and enjoy spending quality time as opposed to caring and washing and cleaning and shopping and watching and cooking and, and, and.!!! I do think that part of your present thought is because you have not been able to sort out permanent care yet, but please, please think long and hard about the full effect taking this path would have.

 

[Pacucho]

I cared for my mum at home and this was a full-time job. It is basically a 24/7 commitment. Therefore, you need to seriously consider whether you are able to do this, with little time for yourself.

As regards what help is available you need to speak to your local Social Services Dept to establish what care package would be available for your mum, which also depends on what are her financial circumstances. This usually involves help with getting up in the morning to have a wash, something to eat lunchtime, and help going to bed in the evening.

Also, you would probably need other equipment, such as a commode, bed, etc.
Hope this helps

Paco

 

[lin1]

Maureen
If I understand it right u are having great problems finding somewhere suitable that will meet all your mums needs. So are now thinking or rather exploring the idea of bringing mum and with help look after mum again

I laud your idea, wanting and perhaps your own need to do this for your mum
You can hear the but coming cant you ?

As an ex fulltime carer for my mum , I feel its only right to give u the negatives first esp as you have been through this yourself but now perhaps
being more rested ect your not quite remembering how bad things got for you .

You say your mum is sleeping better now , that may not last , and even if
does you will probably sleep with one ear open and wake often to
check on mum , this happened with me , result was permanent tiredness
Ive suffered insomnia for many yrs but only getting off to sleep , now many
Months after mum died im still waking every hr or so

I didnt have carers coming in , personally I didnt find the washing and cleaning mum and cleaning the little accidents up hard (mum hated being washed ect but somehow i could cope with that ) , it was all the other things that got me
Some of them were
Being fully responsible for my mums health , wellbeing and happines
Having to do things to mum that she hated , was scared of or hurt her, mums bad hands spring to mind
The daily grind , the constant routine
The dreadful guilt monster calling
Your own health suffers , more aches n pains esp back
Oh their is loads more but i would be here for hrs n i want some sleep

Now for some positives far less than the negatives im afraid .
I know I did my level best for mum
Im glad I was able to do so
their are a few more but not many n my bed is calling me
So I will leave it their , except to say

Think long and hard about bringing your mum home , you need think
What would happen if you became ill or could not cope , all sorts of things really
(((((( hugs ))))))

 

[Izzy]

Hi. We have mum at home but I still work. I couldn't manage this without our care package. I use direct payments so employ our own carers. I only have them in on Mondays to Fridays and I do all the care at the weekends and the evenings. My mum can range from needing total care and having little or no mobility to being mobile with her zimmer and being aggressive and anxious with lots of different levels of need in between. I don't know if I could do 24/7 care on my on. Before we got the carers I found coping with the long school holidays on my own increasingly difficult.

I know we are lucky (if you can call it that) because we have more hours because Bill's needs are added to mum's to provide us with our total hours. We also have free personal care in Scotland. Both mum and Bill also have to make a contribution. I know that without our package mum would certainly be in care.

As I said. I don't know if I could do it on my own with no care package even if I didn't work.

 

[jennifer_eccles]

Get care package started before you bring her home

Personally I would get a care package running before you bring mom home as I have been fighting since March to get some help. The people I have on MY side alzheimer's support and carers support. The ones I have to fight SW and psychiatrist plus local authority. The one person who has managed to get local authority to agree to a morning carer for me is the occupational therapist. Though still waiting for that to start. The OT if you get her to call over can also provide any equipment you need to care for mom at home and will probably know the best way to wash/bathe your mom, plus help with mobility around the home. I must say my OT has made me feel like she has my back, and was down to earth. Good luck honey

 

[Padraig]

When I first brought my wife home to care for her, I was so angry and frustrated with the whole system that it fueled my determination to go it alone. Shortly after I came on the internet for the first time hoping to discover and share experiences with another lone carer. The site I found was a US one, and was told what I was attempting was impossible. However when I informed them that I had been doing it for over a year I was invited to tell my story as it unfolded. This I did up to the time of death.
I now have hundreds of pages of my postings covering the final years.
On reflection I now understand why it is impossible to go it alone. When I look back I don't know how I managed to do the cooking, shopping, ironing and attended to her every need etc etc. Most of all how I managed to scrub the kitchen floor, hall and downstairs shower room, as I've not done since her passing.
I still believe it is possible to care for a loved one at home with the correct kind of support and knowledge. If you don't try you'll never know. Better to say I gave it my best shot, than 'if only.'

 

[keep smiling]

Personally I would get a care package running before you bring mom home as I have been fighting since March to get some help. The people I have on MY side alzheimer's support and carers support. The ones I have to fight SW and psychiatrist plus local authority. The one person who has managed to get local authority to agree to a morning carer for me is the occupational therapist. Though still waiting for that to start. The OT if you get her to call over can also provide any equipment you need to care for mom at home and will probably know the best way to wash/bathe your mom, plus help with mobility around the home. I must say my OT has made me feel like she has my back, and was down to earth. Good luck honey

Interested to know what you mean Jennifer about fighting with SW and local authority. Do you mean for providing you with assistance for personal care etc?

 

[Christin]

Hello BB, I just want to say that this is such a personal decision and really only you can decide whether you want to take on 24/7 care again. If you do, then yes I agree with others that you should have a care plan in place, and some emergency plans just in case.

I also want to add though that in our own case we found we could not cope with the caring at night. My FIL woke constantly, upto 12 times a night. In the NH they report that he sleeps quite well and we have queried how this can be. We are told that night carers turn him throughout the night, he can no longer turn himself over. This perhaps makes him more comfortable, and able to sleep better. He does however still manage to get out of bed sometimes and has been found on the floor. It has crossed our mind that we could now cope better if FIL came home again. However if we couldn't, and we had to go through the last six months all over again, I think we would all be quite ill. Basically it comes down to that old saying of how long is a piece of string. Maybe we could cope for a short while, but we could not cope for years again.

I am so sorry that you haven't been able to find a suitable place for your mum. We are so lucky I guess that we have done so. To be honest, I would keep searching.

With very best wishes to you xx

 

[chucky]

I nursed both my parents at home 24/7 for 3 years dad with dementia, mum paralysed from a stroke and unable to do anything. Previously i had a heavy manual job doing 60 plus a week in shifts. I would say the caring was the hardest thing ive ever done. It was relentless, exhausting, demanding, soul destroying, and that was on the good days. Would i do it again, NEVER IN A MILLION YEARS. However, everyone is different and what works for one person doesnt necessarily work for others. I would think long and hard before making the commitment because once you do your life will change dramatically. Its not something anyone should do unless they are 100% positive that its what they WANT to do not what they think they SHOULD do. When i look back i dont know how i managed for as long. My dads been in care for 3 years now but mum is still at home (shes in respite for now). Ive told her i wouldnt hesitate to put her in care if the time comes that i cant manage her anymore. I wouldnt put myself through that again. She is actually in agreement which i thought would never happen but she seen what i went through caring for them and it wore me down to the point of a breakdown. You do what you feel is right for you, its entirely your choice just be absolutely positive its what you want before you make your decision. i wish you well x

 

[Bristolbelle]

Thanks.....I;m not

Deep down I think I do not have the physical strength as I'm quite small, and I know hubby's condition has worsened quite a lot in the last 12 months. I need to think and then rethink the home she in are dong thier assessment to see if they think she can go back and she has made some major improvements. Minimal walking with a frame, and try to eat independently so given the possibilty of another two weeks in this ward if they feel they can do more she may be able to go back to her usual hme which I would be happy with.

Thank ysound you all for some advice