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Your tips: what would you say to someone who's struggling to be the 'perfect carer'?

philologus

Registered User
Nov 19, 2011
4
0
North East
Things can change rapidly. What works today might not work tomorrow.
What made you laugh today might make you cry tomorrow.
If you always do what you've always done you will always get what you always got. So, when something doesn't work anymore you have to try something new. This brings with it the risk of getting it wrong but it's the only way that I've found that works.
Accept the fact that you are going to get it wrong quite a lot of the time because of this - but don't use this an excuse not to try and learn from what went wrong and avoid repeating it.

Einstein famously said that “we cannot solve problems with the same thinking we used to create them.”
What is abundantly clear is that intelligence is not wisdom. We need to learn to tap into our own source of wisdom and innovation rather than just accept what we are told.
 

ElleS

New member
May 24, 2021
2
0
As I’m new I hope I am able to reply here? I would not have called myself my husband’s carer but as his vascular dementia develops [at this point he is still able to do a lot for himself….but nowhere near what he could do 6-8 months ago] I realise I am doing a lot more for him.
Small tasks like reminding him what day it is or even what time it is and I do most of the cooking now [he used to do most of it] and I do most of the shopping, all of the banking/ordering and managing the house. We still share the gardening.. it Gives us a lot of joy.
for me the greatest challenge is not to panic when something goes wrong and not to lose my patience with him..so a long way from a perfect partner/carer.. I know it will continue to deteriorate as time passes… this is my greatest fear because I never want him to be anywhere but at home..
as yet I haven’t asked for any support and I do have wonderful friends who are very thoughtful towards us. I just miss having a day to myself and a bit of freedom. My husband will say I’m fine on my own but I don’t want to leave him for more than a very short amount of time. We don’t have any family living nearby so it is hard.
I think trying to be a perfect carer is impossible….I don’t have all the answers, however little by little we are both adjusting to all the changes….there is a huge sadness because I have lost [or am losing] the person I have known since I was 19..I will be 68 soon and I think he is frightened by what is in front of him. A horrible disease!!!
 

Linux

New member
Mar 25, 2020
2
0
I can only say don’t worry about being perfect just do the best you can. Nobody in this world is perfect. Don’t put even more pressure on yourself.
My husband has gone into a care home after recently being in hospital and I have really been feeling guilty and also feeling “where did I go wrong “ and everyone tells me I did a really good job of looking after him and there is no reason to feel guilty, but I do. I don’t even feel relieved that I don’t have to worry about getting up in the night to change his bed 2 or 3 times in the night, but I don’t sleep. I have come to the conclusion that whatever you do it will not be perfect in your own mind. 😥
 

Haziebear

Registered User
Feb 29, 2020
18
0
Northwich Cheshire
Show me a perfect carer, and I’ll show you a liar. For the first couple of years if anyone asked how I was, I would shrug and say oh it’s fine, I manage. Trying to be a cross between a martyr or a saint. The next couple of years broke me, and I’ll tell anyone now how awful it is. People need to know, or else things will never change.
I totally agree. It’s fine to let the tears flow, to shout, to sit quietly. Unless you’ve experienced being a carer you have no real idea of what it’s like.
 

Haziebear

Registered User
Feb 29, 2020
18
0
Northwich Cheshire
As I’m new I hope I am able to reply here? I would not have called myself my husband’s carer but as his vascular dementia develops [at this point he is still able to do a lot for himself….but nowhere near what he could do 6-8 months ago] I realise I am doing a lot more for him.
Small tasks like reminding him what day it is or even what time it is and I do most of the cooking now [he used to do most of it] and I do most of the shopping, all of the banking/ordering and managing the house. We still share the gardening.. it Gives us a lot of joy.
for me the greatest challenge is not to panic when something goes wrong and not to lose my patience with him..so a long way from a perfect partner/carer.. I know it will continue to deteriorate as time passes… this is my greatest fear because I never want him to be anywhere but at home..
as yet I haven’t asked for any support and I do have wonderful friends who are very thoughtful towards us. I just miss having a day to myself and a bit of freedom. My husband will say I’m fine on my own but I don’t want to leave him for more than a very short amount of time. We don’t have any family living nearby so it is hard.
I think trying to be a perfect carer is impossible….I don’t have all the answers, however little by little we are both adjusting to all the changes….there is a huge sadness because I have lost [or am losing] the person I have known since I was 19..I will be 68 soon and I think he is frightened by what is in front of him. A horrible disease!!!
It’s a horrible disease that robs you of everything. My husband is now end stage and following a bleed on his brain is now in a nursing home. I wanted him here at home until the end but it is not to be. I can’t even see him to hold him because of the pandemic. Join tide, together in dementia every day, their living grief and bereavement course explains your feelings.
 

Christy21

Registered User
Oct 9, 2016
11
0
So many of us in the same boat! Unwilling carers with no training. My guilt is about leaving my wife with a rare dementia for one day a month. I know I need a break so leave it to the last minute to tell her because I know there will be tears.
Both of us benefit from a few hours apart every month.
 

Terz

Registered User
Nov 29, 2012
17
0
Scotland
The perfect carer? is as elusive as fairies and unicorns cavorting in the park together.

And I believe that trying to be the perfect carer should remain that way. Being the best carer you can be in that moment, while taking care of yourself as well, should be enough. In the future to be able to look back without thinking "I wish I'd done things differently" or "I got it all wrong" is really good.

You wouldn't be a good carer if you didn't have empathy and strive to always do the best for the person you care for. This means you are likely to have less time to look after yourself - it has to be a balance.

Maybe "perfect" needs to mean accepting that we'll get things wrong, get frustrated, be tired and a bit snippy sometimes. It also means accepting we have the best interests of the person we care for at heart.

I was a key carer for my Dad before he died, and am now a key carer for my Mum, both with Alzheimer's. Each had different issues and each gave/give me different frustrations. They each also gave/give me different slices of joy and happiness.

Finally I would say we should never compare ourselves to how others care. We each have different pressures and priorities in our lives. What I do and am willing to give up or not, may be different than my siblings choose. That doesn't make any of us better or worse than the others.
 

Haziebear

Registered User
Feb 29, 2020
18
0
Northwich Cheshire
I would say that it would be helpful to join tide. They have many courses to join in with. I found the You can’t pou from an empty cup, and the Living grief and bereavement extremely helpful and interesting.
 

helsingborg55

New member
Jun 2, 2018
5
0
As others have said, it's impossible to be a perfect carer. I know from experience that perfectionism is counter-productive and creates severe anxiety in the carer which is unhelpful to the person they care for. I developed generalised anxiety disorder and needed several months of CBT to get back on track. I also benefited greatly from the AS's Carer Information and Support Programme (CrISP). I learned that having realistic aims that take account of and fully accept the limitations of the cared-for person is better for all involved. I looked after my Dad (who had mixed dementia) for several years before his death. I tried to set aims that took into account what he could still do. He was happy right through to his final illness.
 
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Peter W

New member
Dec 28, 2020
3
0
Agree with all the comments already made, we are all human and therefore not perfect. From my own experience to be any type of carer you need to care for yourself and your other family members aswell.
 

superbat

New member
Mar 29, 2020
2
0
Please don't struggle, the caring is struggle enough without trying for perfection which looks different to each person who is caring. For myself, as in everything I just need to know that I have done my best, which may not be the same as someone else's best, but I can do no more.
 

Thethirdmrsc

Registered User
Apr 4, 2018
446
0
I can’t see perfect what I do see is love ❤️ and the joy everyday that I spend with My Syl 💕💕 my wife who is around three years into this disease but still at 64 yrs old says it’s a blip we have a fantastic wonderful family unit and for myself I tell myself My Life is all about My Syl 💕💕 one thing that really brings her so much joy is our youngest grandson Henry ❤️❤️❤️View attachment 64428View attachment 64429
Gorgeous pictures!
 

Up the Creek

Registered User
Sep 9, 2020
96
0
East Anglia
When my mum was formally diagnosed with dementia last year my first reaction was ‘I don’t want to be a carer‘. After a few months I decided ‘I can do this, pretend it’s a new job and it might only be for three or four years’ so I settled into the role.

Twenty odd years ago I regained my identity having lost it to being a wife, a mother, an employee, a daughter etc. But where was (my name) in all of these labels?

A couple of months ago I wondered why I was allowing myself to be labelled ‘a carer’ especially as I didn’t particularly want to be one.

So now I am back to being me and ensuring I put myself first.
My mother has dementia so I do my best to help her from the perspective of being her daughter and the fact we live together.

There will become a point when we will have to have carers in to help out but they will be the professionals who want that label. I won’t struggle on under the pretence of being a carer, feeling guilty that I am failing my mother. I am a daughter trying to do her best. The wording is important as I am not setting myself up to fail.

As others here have said, once their LO has gone into a home they are able to return to being a wife or a son/daughter, but I am restoring that relationship at an earlier stage. It works for me as not being ‘a carer’ takes a lot of pressure off me and being a daughter looking after my mum has changed the dynamics back to what they should be.
 

jennifer1967

Registered User
Mar 15, 2020
6,267
0
Southampton
I can’t see perfect what I do see is love ❤️ and the joy everyday that I spend with My Syl 💕💕 my wife who is around three years into this disease but still at 64 yrs old says it’s a blip we have a fantastic wonderful family unit and for myself I tell myself My Life is all about My Syl 💕💕 one thing that really brings her so much joy is our youngest grandson Henry ❤️❤️❤️View attachment 64428View attachment 64429
what a lovely happy picture. one of my grandsons is called henry as well
 

IreneMary

New member
Dec 7, 2020
8
0
Although I think my husband had been developing Alzheimers for some years - due to Covid, he wasnt formally diagnosed until last year. What I struggle with is his total non-acceptance that there is anything at all wrong with him. When I do or help him with tasks he has always done I think'why doesnt he think this is strange' but of course logic just isnt there anymore. Sadly his attitude and personality have changed and he is verbally aggressive most of the time.
I am not a good carer - it is not my 'forte' and I do know this. I actually hate being in this position and I want my life back but I know that instead things will only get worse. I cared for my mother with Alzheimers for 5 years so I know what is coming although I have to say being your spouse it is ten times worse!!
I try to arrange as much time as I can for myself in order to ensure I can be 'nice' when Im home but it is really HARD!
Good luck to all carers - you ALL deserve a GOLD MEDAL!!
 

Lfc

New member
Jan 16, 2021
4
0
As some one new to this role I am coping with the day to day happenings. It all went well until my husband was diagnosed with a tumour This has resulted in many tests and appointments at the hospital As I am present, as his carer ,I have to make sure I know exactly what he is told as he will forget .
I have quite a severe hearing problem and am unable to hear most of what is said to him and me. Despite pointing out my difficulty many consultangs, doctors ,nurses do not take this on board. I am constantly asking for things to be repeated. The wearing of masks is a nightmare for me Out of the 20 plus medics I have seen only one has put on a see through mask so I was able to lip read
This makes my husband anxious which I dont like to see.
 

jennifer1967

Registered User
Mar 15, 2020
6,267
0
Southampton
As some one new to this role I am coping with the day to day happenings. It all went well until my husband was diagnosed with a tumour This has resulted in many tests and appointments at the hospital As I am present, as his carer ,I have to make sure I know exactly what he is told as he will forget .
I have quite a severe hearing problem and am unable to hear most of what is said to him and me. Despite pointing out my difficulty many consultangs, doctors ,nurses do not take this on board. I am constantly asking for things to be repeated. The wearing of masks is a nightmare for me Out of the 20 plus medics I have seen only one has put on a see through mask so I was able to lip read
This makes my husband anxious which I dont like to see.
could they write it down? i cant go with my husband and if its only something minor at the gps then i ask if they can write things down because he will forget before getting home. i wonder if that might help. also keep asking them to repeat it and maybe the message will reach them in the end
 

Rosie Apple

Registered User
Aug 2, 2020
41
0
Dorset
I wholeheartedly agree with all that has already been said.

Carer perfection is just not possible, it breaks my heart to think Carers beat themselves up about not achieving it, but if we have done our utmost to get as near to it as we can, we have done our best.
Since I was a tiny tot my Mum always taught me that the result doesn't matter so much, it's much more important to know in your heart that you did your best. I find it a little more comforting to know this when things go wrong, as they often do with this horrible disease. We all have days when we can do nothing right.
Nowadays if others think they can do better than me they are welcome to try it themselves.

We are not Carers because we do our best....We do our best because we are Carers.
 

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