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Carers breakdown

Thethirdmrsc

Registered User
Apr 4, 2018
221
I look at lots of others posts, and think, well He’s not that bad yet, but last night was the pits. Swearing at me, banging his head on the wall, and just the continual disturbed sleep, through nightmares, toilet and forgetting he’s already been. Luckily the lady that organises the carers I have, called today and has now
referred us onto the next level, so respite looms for me. This is not all about him now, I just cannot cope. He wants to die, every day, and I want to kill him. It’s no longer a marriage, but a toddler tussle, and at 61, I feel too old for this. He is 81, and I see that there are a lot of ladies on here with older husbands/partners. Unless you live 24/7 with this disease, you do not know it.
 

maryjoan

Registered User
Mar 25, 2017
1,465
South of the Border
I am literally just two steps ahead of you - I met my end of the road at the beginning of last week - he has gone for respite for two weeks - first time ever - first thing I did after he went was come down with a stonking cold - my friend said its a reaction to all I have been through.... maybe.
Today is day 4 of respite - I look at his chair, and can no longer imagine him sitting there - much as I still love him - I am loving him not being here as well....................is that wrong of me??
 

jennifer1967

Registered User
Mar 15, 2020
926
Southampton
i dont think its wrong but its just hard work. now with a cold, it would be even more hard work and it would take longer to recover. im one with an older husband, im 53 and hes 72 so quite young for this. i realised when we met 32yrs ago that i might end up as his carer and we even joked that he was only marrying me so he got a carer when needed. my husband is not that far along but memory is bad so repeating. he has a dementia clock/prompt and he keeps telling me that the clock says night at 8pm before it was evening.
 

Thethirdmrsc

Registered User
Apr 4, 2018
221
I never even thought about this role @jennifer1967, so naive, and I read with awe your posts @maryjoan as you have coped with such a lot. It’s like being in an abusive relationship, he doesn’t mean it, and still loves you, but.....
 

maryjoan

Registered User
Mar 25, 2017
1,465
South of the Border
There are so many threads to being the carer of a loved one - so much responsibility and it is that which is finishing me off.
I have said to social services etc, if I had wanted to be a carer I would have trained for it - I would know about meds, crisis situations, Crohns disease, stomas, not listening, random unsafe activities - I would know about all these things, as well as running a household, gardening, finances etc etc -
I am not a professional,trained carer and the society we live in expect me to be, so, I pick up bits of knowledge here there and everywhere.

What am I?

I am a professional genealogist, that's what I am.
And it is a million miles from being a carer.

I want to retire from being a carer and go back to my day job!
 

jennifer1967

Registered User
Mar 15, 2020
926
Southampton
hi maryjoan could you explain whats a genealogist? i want to hibernate, my husband got a dementia / prompt clock and he keeps telling me that it says night at 8pm as opposed to evening. a bit of mental stimulation would be welcome
 

Thethirdmrsc

Registered User
Apr 4, 2018
221
I love genealogy! In fact I found a half sister I didn’t know I had about 8 yrs ago. Sadly after the death of my mother in 2018, we no longer have contact. You are right about the role though @maryjoan, as I was telling one of the carers, at least he gets some training, I on the other hand have been parachuted in to this.
 

karaokePete

Registered User
Jul 23, 2017
5,646
N Ireland
I have to say that I empathise with you all.

I think it's extra tough when the person with dementia is a spouse/partner as there is no escape. My wife is a lovely person but as each day passes the going gets tougher. It's hard to hang in there when instead of living with a partner who shares everything one has to live with a truculent toddler like individual who creates work, rather than helping with it.

My local care team contact has advised me to take a respite break and I hope I can do that before I break! Trouble is that when I took my wife to see a local facility she started crying and said she was afraid. The thought that I was no longer her knight in shining armour(as she called me) but someone who was making her afraid tore me to shreds and I couldn't go through with it. I know I'll have to do this one day but I still can't face it.

Goodness, the number of times I end up just gazing at a wall wondering what's become of life and then haul myself back into action to fight on a while more.
 

Thethirdmrsc

Registered User
Apr 4, 2018
221
I am still working @karaokePete albeit 2 x 6 hr shifts, and I am wondering if the day is coming when I cannot leave. I leave notes to say where I am, and he makes all the right noises when I go, then promptly forgets. I think at the moment it is the sleep deprivation that is getting to me as he is up every night, and doesn’t really sleep during the day. But I am conscious that if I don’t get help I will end up hating him.
 

maryjoan

Registered User
Mar 25, 2017
1,465
South of the Border
hi maryjoan could you explain whats a genealogist? i want to hibernate, my husband got a dementia / prompt clock and he keeps telling me that it says night at 8pm as opposed to evening. a bit of mental stimulation would be welcome
I have been a genealogist professionally for 14 years now, I research family histories for people who commission me to do them for them. It has taken me all over the place including in a helicopter, regular spots on BBC local radio, TV - all sorts.
I used to have a business with employees, but now I just work from home, fitting it around my OH and his needs.
But, if you are looking for some kind of mental stimulation and have an enquiring mind - why not trace your own family tree - or offer to do the same for your friends. It makes a great hobby - have you seen WDYTYA? current series on BBC? Good Luck
 

jennifer1967

Registered User
Mar 15, 2020
926
Southampton
when my nan died, i had all her photos papers birth certificates and my second cousin researched her family with things i lent him. my husbands cousin did the same for his fathers side of the family which we have which led to a family reunion of all the aunties, uncles cousins and she wrote the family tree which i have. so its already been done.now i know what it is. must be fascinating going back and making progress when the scent seems to have gone cold. very satisfying
 

Starbright

Registered User
Apr 8, 2018
532
I have to say that I empathise with you all.

I think it's extra tough when the person with dementia is a spouse/partner as there is no escape. My wife is a lovely person but as each day passes the going gets tougher. It's hard to hang in there when instead of living with a partner who shares everything one has to live with a truculent toddler like individual who creates work, rather than helping with it.

My local care team contact has advised me to take a respite break and I hope I can do that before I break! Trouble is that when I took my wife to see a local facility she started crying and said she was afraid. The thought that I was no longer her knight in shining armour(as she called me) but someone who was making her afraid tore me to shreds and I couldn't go through with it. I know I'll have to do this one day but I still can't face it.

Goodness, the number of times I end up just gazing at a wall wondering what's become of life and then haul myself back into action to fight on a while more.
I know that feeling @karaokePete of hauling myself back into action to fight on....I was on the edge a few months ago and was persuaded by family to get some respite before I became to broken to do so...I told my oh that it was more for his benefit than mine it Would be a little holiday etc etc, he agreed but the morning he was going he was like a small child going to his first day at school. I was torn but knew i had to take him. Cried all the way home , had 3 garden visits that first week ..the second week I went to the coast to stay with family and it was energising and uplifting to walk on the beach and feel the freedom. But I still carried that devil guilt monkey....and missed my oh so much. it was good to get him home a few days later and I did feel stronger and able to carry on caring .....life goes on and we carers just seem to muddle along as best we can.
Here’s a ((((((((((((((((( Hug )))))))))))) Stay strong and if you can do try and get some respite soon. A.x
 
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canary

Registered User
Feb 25, 2014
13,641
South coast
I reached carer breakdown at the back end of last year and it wasnt pretty.
OH had to go into respite as I was incapable of looking after him. He is back home now, but it taught me a lesson. I now have carers in to help him wash and dress and he is on the waiting list for day care once everything opens again.

I had thought that OH was nowhere needing carers in, that it was no trouble for me to do it and why should I pay someone else to do something that I could quite easily do myself. I hadnt realised quite how much time I was spending just propping OH up and sorting him out. Having carers in has given me more time so that I am no longer going round in circles trying to fit everything in. It also means that he is getting used to other people doing things for him and not just me.
 

Hazara8

Registered User
Apr 6, 2015
534
I look at lots of others posts, and think, well He’s not that bad yet, but last night was the pits. Swearing at me, banging his head on the wall, and just the continual disturbed sleep, through nightmares, toilet and forgetting he’s already been. Luckily the lady that organises the carers I have, called today and has now
referred us onto the next level, so respite looms for me. This is not all about him now, I just cannot cope. He wants to die, every day, and I want to kill him. It’s no longer a marriage, but a toddler tussle, and at 61, I feel too old for this. He is 81, and I see that there are a lot of ladies on here with older husbands/partners. Unless you live 24/7 with this disease, you do not know it.
"Unless you live 24/7 with this disease, you do not know it". Therein lies the fundamental reality which can evade even those who specialise in the field of psychoanalysis or dementia and the whole complex neurological world of unpredictable behaviour. The truth of the matter lay in not only the responsibility which is yours once you embark upon the Caring role, but the fact that the nature of dementia challenges your physical resources combined with your utter and total awareness of the presentations which confront you and which are expressions of a brain which is sick. A child is sick and you instinctively attend to it without question. Call a doctor if required or carry out the care which is required and do so regardless of self. Dementia poses a very different challenge as we know only too well on here. A challenge which belongs to us and nobody else. Yes, you may have Carers visiting and alleviating the burden of daily tasks and yes, the GP will advise and suggest appropriate medications or referrals and so on. But at the end of the day it is YOU who play out the 24/7 and do so month after month, year after year. And what is understood theoretically or intellectually or sympathised with and often perceived as " looking after " someone who is vulnerable, simply and factually bears no relationship to the actuality of the ongoing facts which confront the sole Carer. Why, even just a few minutes living within a " dementia storm" can render one in a state of helpless despair. The unavoidable " accident" which demands immediate attention and fresh bed sheets a steam clean of the carpet - whilst at the same time you are striving to calm the one who has no notion at all what has taken place and who is calling for help, or wondering why you are ignoring them and becoming more and more tetchy...
Every single one of us is different. Yet we are as one being human beings. We are related by nature and in essence by our humanity. When dementia enters the lives of any one of us, directly or indirectly, that humanity is revealed and it bears its own challenge which knows nothing about compromise, theory, practicability, the analytical unpicking of brain cell pathology and so on. When you look into the eyes of the one you know so very well - a mother or father, husband or wife, whoever - and know that the recent spat or uncalled for response is in fact the face of dementia, the crying out in the night is the cry for help, the rambling nonsense which drains your capacity to maintain listening any longer, the refusal to eat, to take the medication, the stubborn refusal to toilet in the toilet... and do so minutes afterwards in the bedroom... all of this and so much more is NOT intentional, NOT enjoyed, NOT even understood, then it requires immense reserves of both awareness and compassion in order not to succumb due to literal exhaustion. And then you also come to terms with yourself, your impatience, your lack of awareness, your limitations, both physical and psychological. You look very very closely at everything and do so from the heart, because if you avoid doing so then you risk deterioration and the abdication of that Care which has governed your life. Alas, the truth of all this cannot be found in even the finest of texts nor the most eloquent poetry, as worthy those expressions might be. The truth remains with you and you alone and it is a huge challenge.
When you are alone on the mountain top with not a soul about you to call upon, that is both truth and actuality. 24/7 Care in dementia can be that mountain. And when, one day you reach the summit, the ascent will probably both surprise and uplift you in retrospective moments. All those things you did, despite everything, for the one you love. And in that reflection you find a place to put yourself -- into that place which was once the reluctant domain of your loved one, and you know then what humanity truly means . And it is good. Very good.