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Can being a carer be rewarding?

AbbyGee

Registered User
Nov 26, 2018
479
0
Portsmouth, South Coast
Taken out of context and changed somewhat but pretty accurate:

To give and not to count the cost;
To fight and not to heed the wounds;
To toil and not to seek for rest;
To labour and not to ask for any reward
Save that of knowing that we do what needs to be done
To keep the body clean, fed and safe from unexpected dangers
And to heck with what we, ourselves, may want or need.
 

PippaS

Registered User
Jan 3, 2022
29
0
I found looking after Dad in my home immensely rewarding as well as challenging. I did have to move him to a nursing home after two years because I could no longer leave him alone and because of the incontinence. I got to know Dad at a different level during the two years he was with me here and that still helps me communicate with him now that his dementia has progressed and he’s immobile. I had an immense amount of guilt when I moved him to the nursing home but sitting here at home writing this I have so many happy memories of those two years. He became more child like and playful, I heard him sharing risqué jokes with the male carers and singing in the shower with them. I was able to make him laugh when he had accidents (“Dad, **** happens!”) and he even came to the pub once a week with me for the first year and sat with my friends. He didn’t say much but he giggled all the way home at the thought of having spent an evening in the pub as he and my late Mum had never done that. However, only being able to leave the house when you have a carer coming in is tough and I did feel massively constrained and tied at times. And although I dealt with the incontinence I couldn’t have done that for much longer. So I feel that I made two good decisions - one, to move him in so that we had two good years together and I got to know him so well. And two, to move him into the nursing home when he was still able to build relationships with the staff there. He’s deteriorated significantly in the last 12 months and I’m tied in a different way now as I choose to visit him every morning. But when he was diagnosed I told him that I would be with him every step of the way and I will be. Some days I have to search hard to find anything rewarding from my visits but there’s normally something - watching him sleeping for two hours and then he wakes up and says “hello my darling”, getting him to drink out of a china mug rather than a feeding cup, getting a V sign when I tease him. So I would say it can be immensely rewarding but I would recommend you set your boundaries and recognise when it’s time to hand over to the professionals.
 

Bunpoots

Volunteer Host
Apr 1, 2016
6,281
0
Nottinghamshire
Caring for my dad had its ups and downs. I had times when things were so awful that I thought I couldn’t carry on but somehow managed to find a solution. I got to know my dad much better than I probably would’ve, and certainly much better than either of my invisible siblings did. It did limit my life, and at times it drove my crazy. I could never have lived with dad full time. I lived a few minutes drive, or bike ride away and could usually make my excuses and leave before things got too much.

The first 3 years were ok, with a few ups and downs. The last year, with dad’s dementia having advanced a lot was a nightmare and I had to get extra carers in to help and eventually move him to an EMI carehome.

If I had to do it again I would get carers and carehome sorted out earlier instead of waiting for a crisis.

I’m glad I was there for dad but it’s left it’s mark on me.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,087
0
High Peak
I do apologise for my original negative post! Having pondered on this, I do have a few further thoughts!

I think the rewards of being a carer depend on various things. First is the relationship you've had historically with your mum. If that's been good and you were close it will be easier (obviously) than if you were estranged or disliked each other. Next, it depends how your mum's personality changes as dementia progresses. She may remain compliant, she may not. She may become paranoid and accusatory, she may not.

But it seems to me the reason why most carers find the experience unrewarding is the nature of dementia itself, in particular empathy. As the disease progresses, the person's world closes in. Not only do they lose awareness of what's going on in the 'real' world, but they start to see only their own wants and needs, not even noticing what is happening with those around them. So it's common for a person with dementia not to notice that the person caring for them is tired, upset, unwell, sleep-deprived, angry or desperately unhappy. But it appears as though they really don't give a damn. If you're caring for a sick child or even an adult with any other illness, the reward is often the appreciation you get from them for the things you're doing. The person (for the most part) knows you are helping them, is (mostly) compliant and glad that you are there. With dementia you may get none of these things, in fact your attempts to assist may be met with hostility or contempt. Often the person really cannot see that anything is wrong with them so will resent you, perhaps because you are a reminder of what they can't do themselves.

I think it is this lack of appreciation or even just the occasional Thank You that really wears carers down.

But every person with dementia is different and who knows, it might work out with your mum. (Though I'd suggest a trial before you commit - don't burn your boats by getting rid of her home!)
 

northumbrian_k

Volunteer Host
Mar 2, 2017
2,241
0
Newcastle
When I was lying face down on muddy grass and my wife's only thought was for the dog ... That's just one example of empathy, or rather the lack of.
 

BluTinks

Registered User
Dec 7, 2018
78
0
Please don’t move her in with you! I had my mum with me for 18 months, social services would not help as they assume you can do everything. In the end I was burnt out begging for help. I had LPA etc mental health team said she still had capacity, so social worker told me to leave my house for 3 weeks with my mum in it whilst they monitored her, her social worker took my mum to her bank & got her to sign paperwork to say that my mum was removing me from LPA.
The social worker also tried to remove me from the LPA but didn’t do it correctly. £7000 later to solicitors I’ve been advised that a judge might slap the social worker on the wrist but the local Council would be coming at me for costs!
My Mum is in a home that the social worker placed her in & I’m not allowed to see her? I had only asked for help !
Even now 2 years later, I get calls from the local hospital that my mum has been admitted, she is dirty & not being cared for vile to the staff . I have no rights as social worker took them away!
2 months ago the same hospital called, so I called back to enquire & was told the same social worker is now her next of Kin!
The whole thing is a mess, please think Very carefully about moving a relative into your property the Implications can be devastating. Social care is a nightmare if a relative is living in your property. I thought I was doing the right thing & jumped in to help as I was the only remaining daughter moved from London to North Wales to help, in the end it was all a waste of time. I’m now here to close this chapter of my life.
 

BluTinks

Registered User
Dec 7, 2018
78
0
Please don’t move her in with you! I had my mum with me for 18 months, social services would not help as they assume you can do everything. In the end I was burnt out begging for help. I had LPA etc mental health team said she still had capacity, so social worker told me to leave my house for 3 weeks with my mum in it whilst they monitored her, her social worker took my mum to her bank & got her to sign paperwork to say that my mum was removing me from LPA.
The social worker also tried to remove me from the LPA but didn’t do it correctly. £7000 later to solicitors I’ve been advised that a judge might slap the social worker on the wrist but the local Council would be coming at me for costs!
My Mum is in a home that the social worker placed her in & I’m not allowed to see her? I had only asked for help !
Even now 2 years later, I get calls from the local hospital that my mum has been admitted, she is dirty & not being cared for vile to the staff . I have no rights as social worker took them away!
2 months ago the same hospital called, so I called back to enquire & was told the same social worker is now her next of Kin!
The whole thing is a mess, please think Very carefully about moving a relative into your property the Implications can be devastating. Social care is a nightmare if a relative is living in your property. I thought I was doing the right thing & jumped in to help as I was the only remaining daughter moved from London to North Wales to help, in the end it was all a waste of time. I’m now here to close this chapter of my life.
What you have to remember is social services have a duty of care to the Vulnerable and your relative will not be classed as vulnerable she lives in your home! Please be very careful
 

garnuft

Registered User
Sep 7, 2012
6,586
0
Hi everyone
My mum has dementia and I am caring for her with her likely to have to live with me. I'm sure I am not the only one who feels this way but can someone help me see past my thoughts of 'Is this my life now?' I feel it is a selfish thought as it is happening to my mum, not me. Can anyone help me see that this could be rewarding in any way? What do people find rewarding, if anything. I really need to hook into something good to help me get through each day. Many thanks.
It's hard, SaraZ, and gets harder with every day. I don't think your Mum moving in with you will solve a single problem. It will just lay them all at your door. There is a way to support your Mum, unfortunately (how much longer will we be saying unfortunately?) there is no system that will give the support that you supply or think is basic. None. You're going to have to learn the hard way, as I suspect 99% of us has, that it doesn't exist and compromise is the only way forward.
This, I think, is the most painful part of caring and being a carer.