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I hate being a carer

Seaholly

Registered User
Oct 12, 2020
22
I totally feel your pain too! I've found the Stumped Town Dementia blog always gives me a lift because it is such a powerful antidote to all the other pictures and accounts I see about dementia featuring happy, clean, smiling elderly people, doing fun things like looking through photo albums while a carer in full make-up, not a hair out of place and a pristine, starched uniform beams down at them. Let's be clear - this is a big fat myth!

Being a carer to a parent is about discovering the meaning of true, selfless love and however pretty and prosaic that sounds - it ain't! Using emoticons, because I can't think of a better way to explain, a day can be like this:
😇:rolleyes::eek:💩🤢🤔😐🤐👹🤫🤗🧻💔🤬🙃😇
(and that's just the first couple of hours some days!)

Nobody gets it right all the time - just like our parents, partners, relatives and friends we care for didn't always get it right with us when they were themselves.

Whatever happens during the day - when it's gone, it's gone. However much fun, or however truly vile my mum has been during the day and no matter what frame of mind she is in at night when I say goodnight, I always make sure I've given her a goodnight kiss and tucked her in snugly. Tomorrow is always another day.
 

big l

Registered User
Aug 15, 2015
63
We are all teetering on the edge of - I'm not sure what really and that's the problem. the unpredictability and no- two cases-being-the-same makes the task of carer like a magical (or not so magical) mystery tour. After 34 years of teaching infants you'd think I'd have develop the patience of a saint and insight into why some tasks are difficult - but you see, young children learn. They retain. They improve. Hazara8 your post gave me some comfort, and Weasell's input, the 'it's not what you say but the way that you say it' made me uncomfortable and know that I must try harder to be more PATIENT!
 

Hazara8

Registered User
Apr 6, 2015
547
@Hazara8 thank-you for your delightful description of our role. I took some heart from your sisters plight, there is probably little in the way of training that can prepare the carer for this role. In my mums case the dementia is likened to a creeping vine, slowly but surely tying her brain up in knots but occasionally letting go it’s grip for a return to reality.
Every day can be different and thoughts flood my brain about what care she might need. Changing and developing backwards and forwards down that very long slippery slope. I try and hang on to her, pull her back up, succeeding some days, failing others. That’s what care means to me.
I am not exhausted anymore, I am not jealous of my friends with days out and holidays as we have never really come out of lockdown so the negativity is gone, I think it was a self generated negativity which wore me down and now I am happy in my own setting. It’s probably a very restricted way of life but so is everything at the moment.
Thank you for such a frank and perceptive response, which reveals a true awareness of what is certainly a commanding situation. And yes, this lockdown poses new challenges for so many psychologically. As Carers we perhaps are not so taken by the restrictive nature of this pandemic, because we have been subject to the isolation of this dementia journey for more than a few months. At the end of the day we have a choice. Run away or remain. The latter, whilst a huge commitment, is nevertheless wholly good and with all the inherent angst and despair, fundamentally the face of humanity at its best and the life's blood of Care.

With warm wishes.
 

nae sporran

Volunteer Host
Oct 29, 2014
7,220
Bristol
Being a carer to a parent is about discovering the meaning of true, selfless love and however pretty and prosaic that sounds - it ain't! Using emoticons, because I can't think of a better way to explain, a day can be like this:
😇:rolleyes::eek:💩🤢🤔😐🤐👹🤫🤗🧻💔🤬🙃😇
(and that's just the first couple of hours some days!)
Thank you for making me laugh, @Seaholly. That does indeed sum up most days.
 

Palerider

Registered User
Aug 9, 2015
2,141
North West
I recall sitting and watching a posted selfie by the daughter of a mother with dementia, she was crying and spoke openly ‘I can’t do this anymore’. I always worried if mum passed before dad, because I knew deep down I couldn’t care for him in the way I was willing to for mum. He didn’t have dementia, but he did have a drink problem and there was no way I was prepared to become his main carer. Sadly, I never got chance to reconcile our differences fully as cancer took my dad very quickly. I still think if things had panned out that way, then I too would be sat crying saying ‘I can’t do this’. Its so hard to relinquish what has gone before when we are looked to as a carer.

After so long working in care and caring for mum too I will be honest and say my whole philosophy has changed. Caring is a great teacher of the self. It challenges everything we hold dear and close to what we value ourselves and much more. Caring tests our ability at human relationships, often when the person is at their worse. What we would tolerate or not, who we would want as our companion in the day to day mundaneness of life’s chores and who we would want to be with us through our journey of whatever cause. To me what matters is that each of us knows our limitations and we are happy to admit when we cannot do what is being asked of us and accept passing that responsibility on to someone else. It may seem unfair, selfish or even bring contention amongst families, but the most important thing is to remember that being a carer is about what we can deliver as carers in a positive, safe and meaningful way to the person we care for and equally as important knowing when we can’t is also caring. Caring is not about this imaginary role @Seaholly has so eloquently described in happy false media images of the person with dementia sat with their smiling and unfrazzled carer by their side. It is about knowing when we are challenged beyond our own capability even though we may have good intentions. Each carer is different, each with their own skill set and wisdom to bring to caring. When we stop caring or we can’t anymore then it is time to quit, for the sake of the person we care for and also just as importantly ourselves -by that I don’t mean the things we all experience as carers of someone with dementia I mean that a carer has truly reached the point of burn out. Enabling burned out carers to give up their role is also a bona fide point of contention as who cares for the carers? Often it is not the lack of recognition by the carer that they have reached their limit, but that there is no alternative.

Finally, I can only quote @Hazara8 words:

“Yes, we are allowed a rant or at least some respite if we are not to go under ourselves. This is the reality of dementia care. It is perhaps one of the most demanding of life's challenges and we do not undergo training for any of it. The training is in the relationship with dementia as it lives within the one we care for and that is, alas, the only authentic learning process because you live it in actual fact. And even with all of that, you count your blessings because you are at worst, the Carer, at best, are not the one who is living with dementia.”
 

DreamsAreReal

Registered User
Oct 17, 2015
22
@spandit ’s words very much resonating with me tonight. I have no patience, training, or desire to be a carer. I feel like all the life is sucked out of me, to keep the PWD alive. I have no life. By the time I get to have one, I’ll be too old to do anything. Feeling bitter and self-pitying tonight, no doubt will feel guilty tomorrow.
 

kindred

Registered User
Apr 8, 2018
2,527
@spandit ’s words very much resonating with me tonight. I have no patience, training, or desire to be a carer. I feel like all the life is sucked out of me, to keep the PWD alive. I have no life. By the time I get to have one, I’ll be too old to do anything. Feeling bitter and self-pitying tonight, no doubt will feel guilty tomorrow.
Try not to feel guilty. It’s outrageous and I humane what some of us go through. I used to write 100 lines. I must endure just to make myself go on. It’s surreal. I guess I always thought society would keep on improving in terms of compassion and support but this situation comes as such a shock. All empathy with you. Kindred
 

Seaholly

Registered User
Oct 12, 2020
22
Where can I find a virtual parrot? Do they sell them on Amazon? :D

I'm a dog trainer and if anyone asks 'What's the easiest type of dog to work with?' my answer is always the same..................................Some else's!

It's exactly the same caring for a parent, or partner. No matter how objective and rational you try to be, you can never quite shake off the expectation that your own mum / dad / husband / wife should somehow show you that extra bit of respect, compassion and love. It's amazing how on a bad day, my mum can not only transform herself into a toddler with a melt down, but she turns me into one too :D and worse, I always seem to turn into a toddler who just wants mummy-hugs and approval!

I've already told my husband that if I ever get dementia, while I still have the power to rationalise, I will sign a charter to confirm that he must (no matter what I say to the contrary) have regular breaks away from me, doing the things he loves and be assured that deep down, somewhere, I will be with him in spirit. I don't want him to lose all the fun in his life, I want him to have double: his fun and an extra dose of fun for me!



:( I know that if mum had known and understood what was happening in the early days, that is exactly what she would have told dad.
 

Sarasa

Registered User
Apr 13, 2018
2,035
I so agree @Seaholly. My lovely mother-in-law would be mortified if she realised the sacrifices her younger son has made to keep her in her own home, and that her younger daughter is getting close to carer breakdown over trying to support her brother and her mum. My mother too always said that she wanted us to have our own lives and not sacrifice ourselves for her. Of course when it came to her needing help as her dementia had progressed she thought I should take her to live in my house and she was very upset when I wouldn't do it.
I did plenty of the turning into a toddler trying to care for her before a care home became inevitable.
 

DreamsAreReal

Registered User
Oct 17, 2015
22
Thank you, Kindred, I appreciate your kind words. 🥰 xx. Really needed to vent last night (horrible word, vent).

And thanks to everybody who posts on here and understands, from experience. This forum is such a help. Even though I don’t post much, I do a lot of reading. Hope you’re OK @spandit - you’re not alone in that feeling.
 

lushr

Registered User
Sep 25, 2020
16
@Weasell wow that’s a really interesting tip
“Ultimately ,
people don’t remember what you said,
people don’t remember what you did,
they remember how you made them feel.”

i think it’s what’s driving me nuts at the moment i call her every day and i visit every week (i dunno how the OP stands caring for dad at home, i’d be out of my mind).
and i try so hard to give her a positive experience but she always ends up in tears saying she misses her family or home or is lonely...

this is a lines she’s been using for twenty years so i find it very triggering..... i’m making the effort to call and talk with you and you just cry....she CHOOSES this, or more accurately, her depression and complicated grief choose this....

so i don’t get to walk away thinking “i’ve made her feel safe, i’ve made her feel loved” i get to think “ she is going to spend the rest of the day crying and worrying”.... no matter what i do, she will cry and worry, it’s like trying to fight the tides.....


maybe i’ll just take the moments of safety and happiness that she gets and try to ignore the crying bit at the end? or despite all my instincts to say “stop being such a misery guts when you have everything going for you” and just reiterate what i’ve been trying to reinforce all along.
“i‘ll always love you,
i’ll always be there for you,
no one knows you better than me,
i’ll speak to you tomorrow”
 

lushr

Registered User
Sep 25, 2020
16
thanks @canary im slowly moving to every second day. today have caught a cold, could be covid, got tested, got excited that maybe i wouldn’t be ALLOWED in the nursing home... just a little bit.

but honestly. the “feeling” protecting the feeling of the conversation atleast from my end helped a lot and the staff are great. after all the horror stories you hear, it’s amazing to know there are great nursing homes out there and great carers
 

spandit

Registered User
Feb 11, 2020
133
@spandit ’s words very much resonating with me tonight. I have no patience, training, or desire to be a carer. I feel like all the life is sucked out of me, to keep the PWD alive. I have no life. By the time I get to have one, I’ll be too old to do anything. Feeling bitter and self-pitying tonight, no doubt will feel guilty tomorrow.
@DreamsAreReal - I know what you mean about the life being sucked out.
Guilt is almost constant, at some level. Unfortunately I comfort eat which is doing my waistline no favours...
 

Seaholly

Registered User
Oct 12, 2020
22
I often feel the life is being sucked out of me too - but on the good days, or hours, or minutes, I feel like I'm so glad I chose this path. That doesn't make the bad days hurt any less though! Actually, it's that roller-coaster of emotions that gets to me more than anything.

I'm a comfort-eater too! Doesn't help with a OH who works outdoors and can eat like a horse without putting on an ounce 😐 It also doesn't help that my sibling who actually does live with mum but works (why are some jobs more 'important' than others, I wonder?!) expects me to stay with mum while he does his runs and cycle rides? Hmmmmmm!
 

Catastrophe

Registered User
Feb 15, 2019
34
So much of what's said resonates with me also. A little self absorbed rant about to happen. I have been caring for Dad for three years. I feel as if I am trapped and will never escape. I have been bringing up kids since I was 21, first my ex husbands, then my own. So 40 years I have been in a role I hate. I love my kids with all my heart. But I am not a natural carer. My first grandchild arrived 3 months ago and due to lockdown and no respite from Dad it may years before I get to meet him. I yearn for freedom and the ability to just get up and do stuff for myself. OK rant over for today.
Don't feel guilty, just do what you can. And if I loose my temper with Dad I just move on, try to recognise the trigger and try to do better next time. Nobodies perfect, feeling guilty just makes it worse. As for comfort eating, mine is called stress eating, I find no comfort in it at all especially the following day on the scales.
Did have a weeks break planned, it's a milestone birthday this weekend, but at last minute Dad changed his mind about going to the care home! I am sure this sounds familiar to everyone.
 

TNJJ

Registered User
May 7, 2019
1,832
cornwall
So much of what's said resonates with me also. A little self absorbed rant about to happen. I have been caring for Dad for three years. I feel as if I am trapped and will never escape. I have been bringing up kids since I was 21, first my ex husbands, then my own. So 40 years I have been in a role I hate. I love my kids with all my heart. But I am not a natural carer. My first grandchild arrived 3 months ago and due to lockdown and no respite from Dad it may years before I get to meet him. I yearn for freedom and the ability to just get up and do stuff for myself. OK rant over for today.
Don't feel guilty, just do what you can. And if I loose my temper with Dad I just move on, try to recognise the trigger and try to do better next time. Nobodies perfect, feeling guilty just makes it worse. As for comfort eating, mine is called stress eating, I find no comfort in it at all especially the following day on the scales.
Did have a weeks break planned, it's a milestone birthday this weekend, but at last minute Dad changed his mind about going to the care home! I am sure this sounds familiar to everyone.
Oh yes! Our dads sounds very similar! I have set myself a target. I’m going to do 1 more year caring for dad. Up until December 2021 . It will have been 5 years then(he may not live that long with heart failure). That is my goal..There are no other siblings.
 

Starting on a journey

Registered User
Jul 9, 2019
500
@TNJJ , I think that is your line in the sand, mine is fluctuating. I have decided that 2022 will be the year for carers, 4 weeks respite and holidays for me!! Also will be looking after a 1 year old 2 days a week from March 2022. ( I am not going to miss precious time with a grandchild so we will have a helper in on those days .....mum ok ish now but she will deteriorate)
Daughter worried asking me to give up two days a week term time only is too much. After 6 years of 24/7 care
it should be a breeze.
Mum hasn’t really spent anything on care so if she has to spend to stay at home with me then I think that’s fair!!
However things are subject to change so maybe if your father gets worse you could bring the date forward? He may suddenly accept a home or he might become too ill for you to manage.
Best wishes for whatever comes your way