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Experience of 24/7 care by family member

Griffen2

Registered User
Dec 16, 2012
11
Hi,
Will be having to make a decision soon as to whether I move back in with Mum or start looking for a care home. Mum does have a carer coming in on a daily basis who looks after her nursing needs but now cannot be left for hours at a time .
Any wise words of advice from those who have provided 24/7 care would be very much appreciated. I gather emotional sanity can be an issue:)
 

Witzend

Registered User
Aug 29, 2007
4,291
SW London
IMO an awful lot will depend on how easy/compliant/placid the person is; whether they can be left for short periods; whether they sleep at night or are up and down so that the carer never gets a proper night's sleep; whether they give you any peace or are constantly talking or asking the same question over and over and over at one minute intervals, or following you about like a shadow glued to your elbow, etc.

Some people seem to manage it - others think they will be able to manage, only to find that it all becomes too much and they are exhausted with the strain of it all. I can only say that having done it, I would not do it again, but then my FIL was not 'easy', though he was not as difficult as some people I've read about here.

Good luck whatever you decide.
 

Jessbow

Registered User
Mar 1, 2013
3,015
West Hertfordshire
However hard you think it is going to be ..... double it

However much you think it will take out of you ....double it

How much patience do you have? Bucketloads? Good!

How often will someone cover you , to have a whole day off? Half that! and expect to forego it at the drop of a hat

How hard is it? Yes it does depend a lot on your cared for- my mum was passive ( did zilch all day every day) but I still ended up totally on my knees after a year.

Do you have a life? Do you have family? both will take a back seat.

Good luck with whatever you decide to do
 

Griffen2

Registered User
Dec 16, 2012
11
Mum is middle to late stages (up for debate!) & still having good days although these are becoming rarer.Passive mostly, depressed/lonely & suffers panic attacks.Increasingly frail with little or no physical activities or much stimulation .Still perking up a bit with company & desperately wants someone to be in the house with her 24/7. I know from my own experience, after being in a car crash, what is like when you loose your memory and how anger can erupt in a blink of an eye.Those days are long gone but boy they were awful.

Mum is adamant that she will not go into a care home and has consistently said this for many years.

Thanks everyone for laying out the realities. Lots of food for thought.
 

lin1

Registered User
Jan 14, 2010
9,319
East Kent
Hello Griffen2
I looked after my mum 24/7 she was in late stages when I came to live here and help dad. I say help dad but in reality he had worn himself to a frazzle and needed to take a back seat.
Yes it can be bad just like others here have already said. One thing that has not been mentioned is, you may lose some or all of your friends , because you don't have the time , sometimes because they just don't understand .

Yes I know mum is your priority but it is vital you take care of yourself, regular breaks not only during the week IMO every day too , even if its only 10 minutes.
If you have a charity called Crossroads, do look into having them come to give you a break
You will have some golden moments too to cherish

I found these charities helpful and understanding
Age uk, should be in your phone book
Their advice line and how to find what services they provide is about halfway down the page
http://www.ageuk.org.uk/

Alzheimer's society you will find their national helpline here.
http://forum.alzheimers.org.uk/faq.php?faq=resources#faq_resources_helpline

Crossroads care
http://www.carers.org/what-crossroads-care-scheme
 
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elizabeth20

Registered User
Dec 28, 2013
36
My mum too

You have described my mum exactly - quite uncanny really. I worry about leaving her and feel awful every time I do. She hates been alone and has terrible panic attacks when she is left. I can't b there all the time but I try. This week for the first time I researched some local care homes on line. Would she b less anxious I wonder or would she b worse. Is life in a CH as isolating as been in her own home feels to her even though she has up to 7 callers a day.

I don't have an answer I think I might just continue doing my best and perhaps the decision will b made for me when no one can cope anymore

Good luck with whatever decide
 

Ann Mac

Registered User
Oct 17, 2013
3,693
We have my Mil living with us, 24/7. I've given up trying to work out what stage she is at, lol, but she has VaD and AZ, and though she can be very clear and make some wishes known, she suffers from delusions, paranoia and sundowning. Left alone, even for 5 minutes, and she becomes anxious and scared. She is not physically aggressive, but can be verbally, very unpleasant. She cannot manage with any safety virtually any tasks (too easily forgets what she is doing and how to do it) and now needs supervison to wash, brush teeth and dress. Mobility is poor, and getting worse. Prone to UTI's, and has several other health problems, including COPD, diabetes and angina. My husband works, so I'm pimary carer.

I absolutely could not do this solo, or without the 3 days a week that she attends day care. There can be issues that you don't even anticipate - for example, just dealing with paperwork and appointments is so hard, and is an aspect I didn't realise would be a big part of it all in advance. How do you think you will cope with declining mobility? Sleepless nights? Incontinence? Because all these seem to be common features. Even with the amount of support/respite I get with day care, I often feel isolated. When she is in day care, my free time is often taken up with catching up on jobs I can't do when she is around - for instance, mopping floors - not safe when she is about - or checking her room for washing and clearing out hundreds of the tissues and bits of loo paper she scatters and drops everywhere. Or making phone calls or things I can't do when she is wanting to ask the same questions 100 times in a row, or kicking off because some delusion or other has left her agitated. Husband quite often takes her out for a drive or takes over at home, to give me a break too - but he works long shifts, and sometimes I resent that even when he is home, its hard for us to have any time just for us - she is quite obsessed with him, often thinks he is HER husband, which is one of several delusions that are utterly exhausting and distressing to cope with. Emotional and physical weariness are the norm.

Thank goodness I have hubs to step in when I am ill - somehow, we juggle it. You need to work out how you will cope, what you can do if you should become poorly and have your Mum living with you. What about holidays for you? What if you need to attend appointments - despite day care and husband, I missed at least 2 physio appointments, in the last 6 months. You need to make sure that there is outside support in the form of respite and day care, so you do get regular breaks. plans can change in an instance - I try to make sure I have 'me' time in the form of 4 hours a week where I help out at a gallery - I love it - but I've had to cancel maybe half a dozen times when Mil has been ill.

And you also need to consider the financial aspect, how you would manage - I am self employed, but unable to work as much as I used to, and my income has dropped about 75% since she moved in - we are managing - but only just.

Please, please, think about how you will cope with every issue you think will occur with your Mum - and consider those faced by other carers too, that you can read about in the posts on TP, because you just can't predict what this illness will throw at you. And please, if youdecide to go ahead, get support/respite built in at the start. It is doable - I've read posts from some amazing solo carers on TP - but please don't underestimate how hard it will be x
 

Oxy

Registered User
Jul 19, 2014
955
Really think very very carefully. Each and every response here, aswell as those done before, should give you a flavour of what difficulties you will encounter.
Unimaginable until experiencing. Was warned by friends and in some respects regret I didnt take their good advice. Friends after quite a while make less contact. Depends whether you will end up in a different area away from friends. Feeling virtually imprisoned in an area where you know no one is extremely hard
 

JCA

Registered User
Oct 24, 2014
4
Carers

Can anybody tell me the procedure for organising some care for my dad. My mum (after a lot of persuading) has finally agreed to get some help. She is 83 and he is 85 and at the moment she is his sole carer! He is doubly incontinent and has lost a great deal of his communication skills. Mum always maintains that he is no bother during the day as he generally sleeps. The problem is his mobility is not great and when she needs to get him upstairs to change his pads it's quite a struggle. Mum ideally could do with help first thing on a morning and maybe later on in the day too. Any advice would be appreciated x
 

lin1

Registered User
Jan 14, 2010
9,319
East Kent
Hello JCA.
You can contact Adult social services yourself. They will come and visit . Will probably need to do a financial assessment on dad . If he falls within their financial criteria for funding, they will help.
 

Spamar

Registered User
Oct 5, 2013
7,102
Suffolk
Griffen2
Knowing what i know now, I would never put myself in the position of looking after someone full time. My OH has Alzheimer's and vas dem. He isn't too bad to look after, takes tablets without a murmur, seems compliant for most things. I'm lucky in that. But we do have a lot of repitition, no conversation, no empathy, not able to leave him ( though at least he doesn't follow me to the loo), he needs help washing and dressing, not being able to go out in the evening, friends disappearing, not able to do things ( funerals at the moment!) are some of the downsides. At the moment he's continent, but after hospital stay, his brain and bladder had completely disconnected! Even so, and many people have it much worse, I still had carer breakdown earlier this year.
Personally, I think there's only one answer to your question.
 

Griffen2

Registered User
Dec 16, 2012
11
Perhaps I'm fortunate in that OH & I rarely go out.A social life ..whats that?:) My friends are all of very longstanding & some have had parents die from alzheimers so they understand. I would be returning to the UK after 15 years so getting used to all the conveniences like walking to the shops & on pavements will be quite enjoyable in itself. Driving on decent roads again ..oh bliss. Volume of traffic :eek:

For that 14 years its been mud,mud,glorious mud & 5 miles to any shop!

Carer burnout is my main concern as I'm self employed.Still 99.5% is done via email & its about 2 hours a day if I just keep things ticking over.Usually people are happy to get a reply within 24 hours. Just have to be careful not to take on any challenges ..workwise. Happily about a year before retirement.

I was reading a thread by LadyA last night & one comment she made regarding the almost inevitable move to a nursing home/care home/hospice I thought very wise.To paraphrase she said the carer was still acting in the loved one's best interest by making that decision - when proper care at home was becoming almost impossible.

I'm hoping that with more outings,home cooked food instead of supermarket ready meals,someone there to help her with the stair lift, toileting etc she will be much happier and not so frightened.

Everyone's comments have been so helpful. I cannot thank you all enough . Were you ever told to mark,learn & inwardly digest? Gulp!
 
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Leolady56

Registered User
Aug 9, 2014
44
South Africa
Hi,
Will be having to make a decision soon as to whether I move back in with Mum or start looking for a care home. Mum does have a carer coming in on a daily basis who looks after her nursing needs but now cannot be left for hours at a time .
Any wise words of advice from those who have provided 24/7 care would be very much appreciated. I gather emotional sanity can be an issue:)
Griffin? I don't live in the UK and don't have the necessary funds to place Mom in a suitable home but all I can tell you is that I always had the patience of a saint - I never knew what it was like to feel depressed, alone, abandoned - I was a very hard worker, I could tackle any physical or emotionally taxing job without any difficulty. Now into my 6th year of being the sole caretaker of my mom - I am a physical wreck to put it mildly - I feel that I am falling apart emotionally most of the time - I cry at the drop of a hat - I am exhausted beyond description. And when, Mom's time finally comes for her to 'move on' - I know I will be glad that it was me who took care of her till the end but gosh, God help me, I *wish* that I would have been able to place her in a good care home. By me trying to cope with something I thought I could easily do - considering my 'superwoman' work ethic of my younger years - those wrong assumptions has left me battered and bruised in ways I can't even explain. My advice would be - if you can find a suitable care home where you know your Mum will be lovingly looked after - be kind to yourself and hand this ENORMOUS task over to the professionals.
 

Oxy

Registered User
Jul 19, 2014
955
You really don't know what it's like until you experience it. Think, think, think ...please.
Especially so if of working age. Losing all over time leaves only an abyss in front of you. It is very easy to think of others and unfortunately I'm not sure it is always prudent.
Every adult of this country owes it to their loved ones to make their wishes clear to their offspring early on ie documented when they were children.
No point expecting them to go through education if they end up in abject poverty and loss of all that constitutes life.
You get closer during the caring process and that makes it harder in long run to take right course of action for yourself.
 

Pickles53

Registered User
Feb 25, 2014
2,474
Radcliffe on Trent
Every adult of this country owes it to their loved ones to make their wishes clear to their offspring early on ie documented when they were children.
True, but their wishes need to take into account the likely effect on others. Many people on this forum are feeling dreadful because they have been made to promise that they would never 'put xx in a home' and are on their knees trying desperately to fulfil that promise. It's unfair I think to put this kind of pressure on a family member.

I will make it clear to my only daughter that I trust her to make a decision in everybody's best interests if I am unable to make it myself, and that I don't expect or want her to wreck her own life in the process.
 

Spotty dotty

Registered User
Oct 16, 2014
4
Christchurch, Dorset
Hi it's my 1st time posting, reading these posts have been most helpful, I have my mum staying we us at the moment, been her carer for 2 year + it's not been easy, but then her living just across the road from us has been a plus, she has Al, over the past year I've reduced my hours at work to manage her care, and reduced them more over the last week as she can't be left alone more than half a day, she's always been fiercely independent and never have outsiders in to help, she has hallucinations always hiding her things as her mum takes everything from her, obsessed with losing her handbag and purse, repetitive questions, etc etc, incontinent urine now, but not at bed wetting stage, can wonder at night only in her own room tidying up constantly, I do put her back into bed, she lets me shower her and help dressing and she can still feed herself, I've had 3 weeks her staying with us, my husband is my rock, he accepts and wants mum to stay with us, I have both LPAs, I have a wonderful supporting sister who lives away and comes over to give us a break when she can, she would stay over at mums with her. Mum no longer wants to stay alone in her house, she's settled and much calmer at ours, it's doable, but I'm so anxious scared it's not going to work, I'm so don't want to give up work, they've been so supportive in letting me down my hours to see how things go, and have given me 3 months to decide either way, I've applied for the AA, it felt like begging still waiting to hear, the house will be sold soon, again I'm one of those who has always said to my mum "I will never put you in care" apart from loving my work I can't afford to live of a carers allowance, I've another 12 years to my retirement, and of course we all have mortgages and bills to pay, let alone 2 gorgeous grand daughters who I help out with, Oh what to do, my rant is over I feel a little better, so sad to see so many of us in such turmoil.