Put yourself first

kingmidas1962

Registered User
Jun 10, 2012
3,534
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South Gloucs
What is most apparent from this thread is how many differences we have, although in other ways we are all alike, having had our lives touched by dementia. The thing I have most in common with others is how my relationship with my cared-for persons (both parents) changed so much over time, in my case with (but no doubt without) dementia in the mix.

I always thought my mum was reasonable, caring, strong and kind but that was actually my dad's influence on her and he was her 'rock', keeping her stable. Once he developed dementia and that was gone, everything that she really is returned tenfold. No one's fault - that's just how they worked as a couple.

I agree with the sentiment that we have to look after ourselves to be able to care for someone else - but again the definition of looking after yourself is different for everyone. In my case I would have had more care in place for my dad - mum kept the true nature of his condition a secret until he became impossible for her to care for - again, very common. She accepted help for him arranged by someone else (me) but would never have sought it herself.

I respect everyone's opinion even though I don't agree with many of them.

As the wonderful Maya Angelou said - "We are more alike, my friends, than we are unalike"



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Samantha1977

Registered User
Jan 16, 2017
34
0
Having been a carer for 10 years I agree with Lisa. The aftermath is like earthquake aftershocks. You might feel it's over but really emotionally it's a whole new can of worms. All the sacrifices and lovely moments you have spent with the PWD feel like it's down the drain. You ignore your children. You cut yourself out from the world because you have to be there for them. You adjust your life to suit them.
Why do I sound so bitter...because at the end I am sad I could not follow through. In the end we have had to find a house and a live in carer. The guilt and self loath live with us. So the last 10 years of looking after her feel like a waste of time. We have failed.

I agree. Put yourself first. And then give what you have left. Only my opinion.

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velocity

Registered User
Feb 18, 2013
176
0
North Notts
My opinion is if the Carer has burnout they will not be able to care, everybody is different, the PWD and the Carer are all different and interact differently, also different pain/endurance thresholds. I am beginning to think I might fail, but I haven't, I have done my best as everybody here has done. I am afraid that's all anyone can expect xx
 

Lindy50

Registered User
Dec 11, 2013
5,242
0
Cotswolds
This is such an interesting and important thread. I agree that carers have widely differing relationships with the person or people they care for, and this aspect is vitally important - as also are the levels of strength, tolerance and endurance that we all bring to the situation.

In my own case, I cared for mum for probably eighteen months longer than I 'should have', in terms of my own health. Some examples that spring to mind include doing her shopping by dint of leaning on the supermarket trolley, and then crawling up the stairs to her flat, dragging the bags behind me; crying most of the way home after every visit (at least daily); sleeping maybe 4 -5 hours a night maximum......and much more.

I did it because I love my mum. I still do, even though I had to acknowledge eventually that I couldn't meet her needs, and she's now in a nursing home. It's been eighteen months since she went there, and in that time I've had three lengthy hospital stays and been generally unwell the whole time. My husband and I have been away for a total of five days as I'm too unwell to travel. I am very lucky to have such a patient partner. But there's no doubt that he has suffered, as have my two daughters. One lives in London, and I haven't been able to go and see her over this time (also, before mum went into the home, I couldn't go then either....) My other daughter has just had a baby, and devoted as I am to him, I can't really be left on my own to care for him.

So I'd say we've all suffered. Mum at the centre of it all, me as her main carer, and our whole family. And....I've just remembered that I gave up work to care for her, so not only has my health suffered, but we are all much less well off financially.

Frankly I don't think, loving mum as I do, that I could have done anything else. But I hope and pray that my daughters are not faced with the same situation, and I have told them both that they must not give up on their lives and families for me. Having said that, close as we are, I know they would struggle to keep an appropriate distance.......but if the situation arises, I really hope they manage it.
 
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oilovlam

Registered User
Aug 2, 2015
386
0
South East
I love the honesty of the opinions in this thread. Some people say the PWD is all important, some think the younger generation need to be safe-guarded, some would seek a balance.

There seems to be a recurring theme. That carer's would not want their children to have to go on the same journey. A living will (of sorts).... to keep their distance when things get too bad. But I expect it is hard to walk away.

Let us hope that 'someone' finds a better way to care for people with dementia (and all infirm relatives), one that does not damage the carers....emotionally, physically, financially.
 

Saffie

Registered User
Mar 26, 2011
22,513
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Near Southampton
This thread seems to have developed into a choice of caring at home or putting someone into a home which isn't how I read the first post at face value.
I think you can still put the person with dementia before yourself when the hands-on care is being carried out in a nursing home whether that was your choice or whether it was forced upon you. Yes, the physical stress can be less but is replaced by other forms as you haven't absolved yourself from the responsibility for the health, wellbeing and actual life of that person and in many cases, the emotional stress can be overwhelming.

I have told my daughters that it will be fine to put me into a nursing home and have even talked about the ones locally I would be happy - at present - to go to.
 
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Marcelle123

Registered User
Nov 9, 2015
4,865
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Yorkshire
Nearly all the people who've posted in support of 'put yourself first' have had the experience of not putting themselves first & as a result they lived through much pain and unhappiness and dire consequences to themselves and other members of the family in terms of damaged health and lost sleep.

I can only respect such sacrifices. I didn't make them myself. I supported my Mum in her own home but whenever I thought about taking her into our home or getting more involved with personal care, should it be required, I backed away. My husband is an only child, who's had lots of health issues in the last 15 years, though he's well now - we have no children ourselves, but a very close marriage - and I just couldn't bear to ruin his life. My judgement was confirmed during the six-hour wait to get my Mum into hospital last autumn - when I took over from my husband at half-time, the other patients told me privately how wonderful he was for putting up with Mum so patiently. Later I found out that Mum had hit him several times with her stick, and he found that very stressful for a long time afterwards.

I also didn't think it would benefit my mother, being cooped up with me all the time: it would just have meant three unhappy people instead of one.

However, the fact remains that I didn't even try - unlike most of the posters on this thread, who are better people than I am.

With any problem in life, there are two 'musts', in my opinion: Charity, and Clarity.

Charity, or love, leads people to perform wonderful, unselfish acts for others; Clarity, or clear judgement, leads people to step back and assess the situation in all its reality, with a look at future consequences & sustainability.

The two are not opposites. Charity can founder when judgement is lacking, and judgement should serve to promote the welfare of both caree and carer. The balance will be different in every case of caring for family members with dementia.

It is indeed a very thought-provoking thread.
 
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Lindy50

Registered User
Dec 11, 2013
5,242
0
Cotswolds
.

With any problem in life, there are two 'musts', in my opinion: Charity, and Clarity.

Charity, or love, leads people to perform wonderful, unselfish acts for others; Clarity, or clear judgement, leads people to step back and assess the situation in all its reality, with a look at future consequences & sustainability.

The two are not opposites. Charity can founder when judgement is lacking, and judgement should serve to promote the welfare of both caree and carer. The balance will be different in every case of caring for family members with dementia.

It is indeed a very thought-provoking thread.

This is a very good way of putting things, I think, Marcelle.
In my post I never meant to imply that one way of loving - or of caring - was better than another. What I meant was that, having initially willingly decided to be mum's carer, I found, as so many on here do, that things got harder and harder. Being of a stubborn turn of mind, I wouldn't give up, no matter how many people advised me to......and my point is that I became so exhausted (and ill, as it turned out), that I was unable to take a rational decision about anything. For me, mum's care came above everyone and everything, and that often was neither fair nor sensible.

In other words, as you put it, charity foundered when judgement was lacking ☹️

I would have loved to have been stronger and fitter and able to carry on, and I do believe that what I did do, benefitted mum. It benefitted me too, in the beginning. The difficulty was knowing when I'd got to the end of the road......

My admiration goes out to all carers, whatever their precise role x
 

Marcelle123

Registered User
Nov 9, 2015
4,865
0
Yorkshire
This is a very good way of putting things, I think, Marcelle.
In my post I never meant to imply that one way of loving - or of caring - was better than another.

I was just replying in general to all the posts in the thread. I have benefited so much from reading of the experience of others on Talking Point. For me, and doubtless for many others, it's been a shock finding out about dementia and I didn't really understand or know what to make of it - I feel much better informed now, and awe-struck by the endurance and love shown by so many people here.

Thank you & everyone else here for telling your stories.