Later stages managing at home, all advice welcomed.

Maggy79

Registered User
My husband Sean aged 64, was admitted to an aged care physchiatric unit in December 2013. Sean was walking day and night. He can no longer walk and he needs to be transferred by a hoist. I am going to bring him home, but everyone keeps insisting, I will not be able to manage. I am seeking advice from anyone that as cared for their loved one at home, in the later stages.
 

3shirley

Registered User
Nov 28, 2013
20
0
workington
I am caring for my husband at home he has to be hoisted by ceiling hoist i have care in four times a day they do all his personal care he has purried food but things are going well at the moment the carers take a lot of pressure of me i get direct payment and nhs fund half of care after assesment

Sent from my GT-P5110 using Talking Point mobile app
 

Padraig

Registered User
Dec 10, 2009
1,037
0
Hereford
As I've already posted on this subject and see little point in posting about it. As I've had the rare opportunity to care for my late wife on my own in our home for her final four years and nine months, the best I can do is to offer a free download of my book as follows:

https://www.btcloud.bt.com/?shareObject=0b4d7b97-f8b5-976d-fe50-4b722d9ed3f5

You will find most of the subjects on TP I've experienced are covered. The one most people seem to fail to understand is 'spacial awareness'.
Hope it proves of help.
 

Maggy79

Registered User
I am caring for my husband at home he has to be hoisted by ceiling hoist i have care in four times a day they do all his personal care he has purried food but things are going well at the moment the carers take a lot of pressure of me i get direct payment and nhs fund half of care after assesment

Sent from my GT-P5110 using Talking Point mobile app

Many thanks for your reply. I am looking into hoists at present. I am sure the carers are a great help. I am in Melbourne and the most the Goverment will fund is 15 hours of care a week. Sending you lots of good wishes. Margaret
 

Padraig

Registered User
Dec 10, 2009
1,037
0
Hereford
Maggy,

As someone who used a hoist to transfer my wife to and from bed at home, in her final five years I'd hoped my information would have been of some use to you. Sorry if it has been of no help. It may be that you feel female advice would be more appropriate in your case. As the majority of carers are female their perspective is understandable.
I wish you well in your endeavours.
 

Maggy79

Registered User
Maggy,

As someone who used a hoist to transfer my wife to and from bed at home, in her final five years I'd hoped my information would have been of some use to you. Sorry if it has been of no help. It may be that you feel female advice would be more appropriate in your case. As the majority of carers are female their perspective is understandable.
I wish you well in your endeavours.

I am so thankful for your reply. I am having difficulty downloading your book. I am trying to download it to my Ipad, with no luck. I will try to download it to my computer tomorrow. Regards Margaret
 

lin1

Registered User
Jan 14, 2010
9,350
0
East Kent
Hi Maggy

It is sometimes possible to care for someone at home till the end. I did with my mum who had dementia .

The difference is, I was a woman looking after my 80+ yr old mum, rather than caring for a man.
She could walk a little with my support, she couldn't do anything else for herself.
I am quite strong for my age, don't have a bad back, I do have a touch of Arthritis in my knee and had learned a lot from when my nan was in a hospice where I was encouraged to continue helping with Nan.

You not only need to consider the physical aspects of caring till the end, TBH I found the emotional side harder to deal with, the emotional side of caring for a husband or wife must be much harder than it was for me looking after mum , and that was hard enough !

These are my views based on my experiences with mum for the last yrs of her life, you and others reading may find / feel different

No matter how much help you have , the worry is 24/7. 15 hrs a week help that they will provide you is a drop in the ocean , but better than nothing.

Their are times when I felt helpless, thought I couldn't cope, wasn't doing enough for mum.
You have all the responsibility, rather than shared as it is now.
It is likely the carers wont be there when you need them, ie for an emergency wash and brush up and clean up after an accident, though you do get used to cleaning up piles of you know what.
I thought the washing machine was likely to die under the strain.

You will need equipment, here in the uk, we can borrow lots of thing from the NHS loan store, I do not know if you have anything similar where you are.
I borrowed things like

A brill hospital bed, it could even turn into a sort of chair.
An airflow mattress that helped prevent pressure/bed sores.
cot sides with bumpers.
A wheeled commode that could go over the loo and be used as a transport chair
A very handy slide sheet

No it wasn't easy !!!I wont pretend it was.
This is a very big BUT, But I was and still am so glad I was able to do what I did for mum, so many on here want to but are unable to

Do think very carefully about what you want to do, and if it wise to move your Husband

I too wish you well in your endeavours
XXX
 
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Maggy79

Registered User
Hi Maggy

It is sometimes possible to care for someone at home till the end. I did with my mum who had dementia .

The difference is, I was a woman looking after my 80+ yr old mum, rather than caring for a man.
She could walk a little with my support, she couldn't do anything else for herself.
I am quite strong for my age, don't have a bad back, I do have a touch of Arthritis in my knee and had learned a lot from when my nan was in a hospice where I was encouraged to continue helping with Nan.

You not only need to consider the physical aspects of caring till the end, TBH I found the emotional side harder to deal with, the emotional side of caring for a husband or wife must be much harder than it was for me looking after mum , and that was hard enough !

These are my views based on my experiences with mum for the last yrs of her life, you and others reading may find / feel different

No matter how much help you have , the worry is 24/7. 15 hrs a week help that they will provide you is a drop in the ocean , but better than nothing.

Their are times when I felt helpless, thought I couldn't cope, wasn't doing enough for mum.
You have all the responsibility, rather than shared as it is now.
It is likely the carers wont be there when you need them, ie for an emergency wash and brush up and clean up after an accident, though you do get used to cleaning up piles of you know what.
I thought the washing machine was likely to die under the strain.

You will need equipment, here in the uk, we can borrow lots of thing from the NHS loan store, I do not know if you have anything similar where you are.
I borrowed things like

A brill hospital bed, it could even turn into a sort of chair.
An airflow mattress that helped prevent pressure/bed sores.
cot sides with bumpers.
A wheeled commode that could go over the loo and be used as a transport chair
A very handy slide sheet

No it wasn't easy !!!I wont pretend it was.
This is a very big BUT, But I was and still am so glad I was able to do what I did for mum, so many on here want to but are unable to

Do think very carefully about what you want to do, and if it wise to move your Husband

I too wish you well in your endeavours
XXX

Thank you for your most welcome post the information was helpful. I have a lot to consider, my main worry is that he his not able to walk now and I will need a hoist to transfer him. At present he his in an Aged Mental Health Facility and he his been treated cruelly. I spend most of my day there, and when I return home i am worried what his happening to him.
 

nita

Registered User
Dec 30, 2011
2,651
0
Essex
My Mum is in a hospital bed, hoisted by two carers to the commode if necessary. She is in pads and they change her four times a day. The carers also wash Mum and change her night clothes. I am glad for their help as Mum is hard to move and it takes two people to do it. Mum also has severe painful arthritis.

I am surprised at Padraig doing hoisting on his own - I was told by the Social Worker that I couldn't do it alone. I wanted to have training on using a hoist but couldn't find a course locally. In any case, I was told that a carer from an agency wouldn't be allowed to work with me as I wasn't an employee!

It has worked out fairly well as Mum is much more placid than she originally was. The district nurses visit regularly and check if she has the start of a pressure sore. She sleeps most of the time and I sometimes have difficulty getting her to eat or drink. I administer her medication.

It can work, having the patient at home, but it all depends on the demands they might make on you - behavioural problems, etc. And I couldn't have done it without outside help.
 
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Padraig

Registered User
Dec 10, 2009
1,037
0
Hereford
Nita,

You may be surprised at many things I've done, but then once I took control of caring for my wife I was not prepared to told what I could, or could not do. They tried to tell me in the NH what I could not do, but in the end I got my way. I was paying the bills and the only piece of equipment I did not purchase was the hoist. Once my wife passed on, the wheelchair, commode etc I purchased, were passed on free, to other, who who required them.
Once I took my wife home there was no requirement for a hoist as she was less than six stone in weight. Offered a hoist I placed it in the garage until I got her back to over eight stone, then I used the hoist only with-in the confines of the house. Medical staff kept telling me I required help and entered that fact in the medical diary that I refused it, which I attached to the rear of my book. Once they witnessed the improvement in my wife's physical condition I was left to get on with the caring in my way. Out side of our home I lifted my wife in and out of the car and strapped her in the wheelchair.
More people that have cared for a loved one in their own home till the end gain a lot of knowledge on the subject of Dementia. Their input should be welcomed on here.
 

lin1

Registered User
Jan 14, 2010
9,350
0
East Kent
Thank you for your most welcome post the information was helpful. I have a lot to consider, my main worry is that he his not able to walk now and I will need a hoist to transfer him. At present he his in an Aged Mental Health Facility and he his been treated cruelly. I spend most of my day there, and when I return home i am worried what his happening to him.

Maggy
I am so sorry to hear this, it certainly sounds that your Husband is in the wrong place.
Would it be possible for your husband to be moved from there to a nursing home.

I am also sure people here will be able to help advise you in getting your husband moved and how to make official complaints.
Feel free to ask questions.
 

nita

Registered User
Dec 30, 2011
2,651
0
Essex
Thank you, Padraig. My Mum is about 9 stone and I have seen the difficulty that two carers have wielding the mobile hoist - you have to watch out for all sorts of things like that her head or legs don't get knocked while manoeuvring the equipment. Also, because she is bed-bound, even putting on the sling is quite an operation as she has to be rolled in the bed from side to side to place it under her. Then the chair she is being transferred to has to be got in place avoiding the legs of the hoist and straps have to be held at the back of the sling to position her.

I really don't think I could do it on my own, both operating the remote control and watching out for and positioning my mother. I suppose the SW could "dictate" to me because we didn't pay for the equipment. I would've preferred to help with just one other carer rather than have 2 of them coming every time. I only wish I could pick Mum up and whisk her about myself! I should have been a man!
 

lin1

Registered User
Jan 14, 2010
9,350
0
East Kent
Padraig
I too used certain equipment by myself, the slide sheet I mentioned somewhere above was one.
It was a case of needs must.
 
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Padraig

Registered User
Dec 10, 2009
1,037
0
Hereford
nita,

Some men have an advantage in parts of caring i. e. physical. Then women bring the experience of washing, ironing, housekeeping, cooking and shopping. They also have the experience of caring for babies and raising children. Some even have experience of looking after a healthy husband.
Caring for a partner is different from caring for a parent in so many ways, I cover that in my book. In my case I loved caring for my wife. When you grow up never to experience the love of an adult as you've learned to keep your distance from them. The fulfilment and joy at first finding some to love and be loved is indescribable. So it was with my wife, to care was rewarding. Hope you managed to download the book.

Well said lin 1
 

Auntiep

Registered User
Apr 14, 2008
230
0
Midlands
nita,

Some men have an advantage in parts of caring i. e. physical. Then women bring the experience of washing, ironing, housekeeping, cooking and shopping. They also have the experience of caring for babies and raising children. Some even have experience of looking after a healthy husband.
Caring for a partner is different from caring for a parent in so many ways, I cover that in my book. In my case I loved caring for my wife. When you grow up never to experience the love of an adult as you've learned to keep your distance from them. The fulfilment and joy at first finding some to love and be loved is indescribable. So it was with my wife, to care was rewarding. Hope you managed to download the book.

Well said lin 1

Not all women have experience of cooking housework & raising children!

P x

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Padraig

Registered User
Dec 10, 2009
1,037
0
Hereford
So sorry if I caused offence. For a moment I forgot that caring is primarily a woman's domain and should take more care with my comments.
 

Sam and Dave

Registered User
Feb 22, 2014
68
0
Hi Padraig

My Mil moved in with us 2 months ago from a Ch that my Sil had put her in.
She is unrecognisable now,She is doing so well.
My Husband cares for her 24/7 with a bit of help from me as I work fulltime.
My Husband has been amazing its been a real learning curve for both of us,But he seems to be able to reach out to his Mum like no one else can.She has put weight on he mood swings have calmed down and she smiles again.
I think Men bring something different to caring and are quite often over looked as carers.
It can put a strain on a marriage but at the moment it has brought us closer together and it has been a reminder to me why I have been Married to my husband for 29 years.
In the words of Mil yesterday your a nice bloke I like you! lol


Sam x
 

Padraig

Registered User
Dec 10, 2009
1,037
0
Hereford
Hi Sam,

I've thought long and hard before posting again. For some caring at home can be a very trying undertaking. But the rewards far out way the negatives for both LO and carer and when it's all over, there will be some regrets, but what aspects of our lives do we not have regrets?
My biggest regret is to have placed my wife in a NH and I have to live with the guilt. I'm well aware of why I put her in a 'Home'. She was wheelchair bound and could no longer speak, except for the odd word. Our house and property was to large and remote to manage and to care. However visiting her each day for between 8/9 hours I found more stressful for both of us and both our healths suffered.
Once I decided to downsize and take her home a load was lifted from my shoulders. Over the following four years and eight months there was no time to waste on a computer website, each moment of every day was accounted for. While she was in the NH time was limited. I arrived with sandwiches and a flask. and helped with her feeding and care. At the end of each day I returned home tired, to wash change and sleep. When I arrived each morning she thought I'd been away for days!
The thought of placing her in a NH while she could still walk, talk and was doubly incontinent never entered my mind.
No point in anyone telling me not to feel guilty. It's a natural emotion just as it is to feel love or sorrow. You can not erase those emotions they are what make us human. Some people may find relief in telling others not to feel guilty. If you feel no guilt what so ever, ask your self why not?
Sam, I hope you go on to have many happy years ahead of you. We had 52 years marriage and they sped by so quickly. You are indeed fortunate in witnessing your man acting out his love. Actions speak louder than words. When the going gets tough.....
I've had my say, now good bye.
 

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