Having read others posts for months i figured it was time to join the bandwagon !
Got similar circumstances to helena in a way .
My husband is 23 years older than me. Weve been married 8 years. In that time , hes gone from being newly diagnosed to having stage 4 copd . And now…lots of other complications. Suspected heart issues, no mobility left etc…
I am now a full time carer for him , and i work aswell.
We do day and night shifts as he wakes a lot in the night with needs . This year has also been the year of the hospital dance ( in , out , in , out and shake it all about ! Lol ! )
I find i have to find the humour in it all for my sanity !
Like you guys , sometimes im so tired , i dont know how i carry on…have the same fears for the future …etc.
However, one answer always comes back to me when i ask the most difficult question. Why am i in this mad, unasked for difficult situation?..because i love him.
Hi all and looking forward ro getting to know you and having support.
Hi @friendhip123 !! Welcome aboard! Know what you mean about a sense of humour…there’s a lot of it on display on the forum!
Fitting in working and caring when there’s no one else to do it is really stressful! Are you in touch with friends/family? How about groups in your area?
Hello @friendhip123 welcome and Congrats on your first post. I am going to show my age now with your mention of Bandwagon “hello playmates” - OK so I have listened to too many old radio shows… (anyone know what I am talking about?) Hopefully you will have noticed we are mostly a friendly bunch (just watch out for axe-wielding ladies from the New Forest and those of us with warped senses of humour )
You are quite right - nearly every one of us in this situation because we don’t just care for the person - we LOVE them. That’s what I am telling myself this morning as I am having a really bad start to the day!
I saw my Dad caring for my Mum for years as she had MS and her gradual deterioration took its toll on him. I now find myself in a similar situation since Graham had a stroke which has brought on a cascade of other ailments. I’ve been through the situation of being woken 6 times in a night and changing the bed twice in one night - oh how that brings back memories of visiting Dad at 7.30am finding him putting the second load of washing from that night into the dryer!!!
It’s only when you end up in that sort of situation you appreciate what it feels like. I don’t know how you manage to work as well!! tips hat We had to close our business after the stroke and I immediately went into f/t carer mode.
I am so glad I found this forum as it has helped me stay sane when the world seems against me - and I am sure you will find great friendship and support on here as I have done.
You have a sense of humour - I wonder how ‘black’ that humour gets? (am I allowed to say that or is it un-PC these days?) You’ll find we have some good laughs on here as well as ‘tea and sympathy’ times (although more empathy than sympathy).
Right - I need morning dog walk before Buster explodes!! That would only mean more cleaning up to do!!!
Thankyou for welcoming me.
I have family who im close to emotionally, but they all live far away (thank the Lord for whatsapp video ! ).
I have lots of close friends who i don’t have any time to socialise with . But because i work in a public place they can stop by and say hi , and 2- 5 minutes with a true friend ( normally with fond hug) keeps my spirits up .
Not sure how long its sustainable for, because my husband needs full time care and when im not there …well, suffice to say he cant manage.
So, constant questions / guilt run round my head.
And, for him too - he doesnt want me to give up a job i love.
Thanks for welcoming me Chris,
Yes, the sense of humour - vital ! And i find ive become someone who not only talks to herself , but answers herself aswell ! ( oh dear ).
This years been a difficult one… i can sum it up in 3 words - adapt, adapt, adapt .
This year - my husband lost all mobility, had the life / death hospital episode, now has home oxygen , tablets increased, has gone from sleeping through to now awake every 1 - 1 and half hours, and personal needs. Well, everything.
My usual way of coping is faith / and positivity ( when i can ).
And , trying to respond to the ever changing needs creatively.
E.g , i now see 4 a.m as " me time". If im awake after he is settled, i have a cup of tea and try to chill myself.
I read stories of your life with interest . I can identify , when you write that your and husband plans for life have totally been upturned by illness - same.
Wishing you all the best for a good day.
Also, both of you are right about only carers knowing what carers go through.
Thankfully , ive been through the unwanted outrage and horror stage of trying to push away this becoming our life , and now peacefully accept that it just IS this way now.
It helps me to be more peaceable , especially as my husband struggls so much withh his frustration about it all.
Good morning friends123
Welcome to the forum.
Your love shines through for your husband.
My circumstances have changed as I am no longer a carer. My lovely late husband suffered strokes, vascular dementia and other health issues. Life was somewhat difficult at times, especially in the beginning. Had to learn to treasure the good times with him as the dementia progressed and any very upsetting days remind myself it was the dementia not him. We were happily married for over 50years. Obviously didn’t always agree! Still much missed
I found the forum when feeling desperate. Everyone was so kind and helpful.
Do keep posting. Others will be along to offer support and practical suggestions
The more help you accept the longer you can care for him. What do you currently get? Free time? Last holiday? Carers Assessment? Needs Assessment? Benefits?
The one thing that keeps me going is recalling the vows I took at our Civil Partnership in 2009 (after living in Sin for 12 years!). Graham teased me at the time as I couldn’t look him in the eye and had to stare over his shoulder as I recited them.
That wasn’t because I was embarrassed or didn’t mean them - they meant SO MUCH to me that I knew I would break down as I said them if I looked into his eyes.
I have to remind myself of that from time to time and it all seems worthwhile, as I entered into a commitment which meant so much to me then, and now. That is what keeps me going when it all looks black (or brown! oops lowering the tone again!!)
Keep smiling it makes people wonder what you know that they don’t !!
Hi bowlingbun ,
Happy to meet you.
Thankfully the hospice have been great at providing counselling service, benefits advice, occupational therapy and socisl worker advice and support.
We are choosing to carry on on our own at the moment but thankfully have all the info and support we need if we want more help.
Family are being supportive and ive had a couple of days out this summer while they have cared and we’re working on making this more regular .
Thankyou for caring about the practicality side
Hi Pet 66 , nice to meet you. Bless you , how lovely vrhat you’re still on the forum. I can only imagine that this is of great comfort and support especially to carers whose caring role ends.
It sure is all a rollercoaster thats for sure !
Thankyou for your supportive words - theres nothing like encouragement to give me a lift !
P.s all - ofcourse my username should have been friendship123, but in my exhausted brain fog of joining in the middle of the night , it became friendhip123 !! lol.
Was going to try and change this , but now i think ill leave as is - a momento to the tired reality !
Speaks volumes about how we do things at times of the day others don’t know exist!!
Yes Chris, like you ive had some dark moments in these last few years - this one especially. But , after all is said and done my love for my husband keeps me going.
Ultimately , its the only reason .
Actually, i adore him .
( that and the love of our gorgeous dog ofcourse )
Howdy @friendhip123! Welcome, lovely to see you aboard the bandwagon
I like to think that we are all somewhat attached at the hip in friendship and empathy here, so your brain fog must be giving you a whole new predictive Artificial Intelligence - getting you to make that username Oooohhhh Carer-AI!
love the ‘hospital dance’ moves comment! SO true! There’s also the pharmacy Conga, or I used to do a similar conga version with Dad to stabilise him on the way to the loo…
Seems like you’ve been following our posts in the forum, which is great. Thanks for telling us about your situation, really feel for you. it sounds like a very unpredictable edgy time for you, and reminds me so much of when I was looking after Dad. We’re here for you, a lovely safe haven where you say say whatever you want - no joke too dark, no complaint to harsh…we know all of them.
Feel free to message any one of us directly too - I’d be happy to share thoughts or ideas if you like to.
I’m relieved to hear via your response to @bowlingbun that you have great support via the hospice. The hospice at home charity near us were angels for us, especially overnight. Those few hours of sleep that they enabled me to get were crucial.
@Chris_22081 awwww I nearly teared up reading your post
Got to get bk to the ladies & the reunion, but wanted to say Hi and give a little comic-relay-response
Blessings and prayers…and warm empathy!
Welcome Friendship 123. This is a lovely group and it is great that you are now part of it.
I do feel for you trying to juggle working and caring for your husband and it is great that you love him. I can well understand your fears with regard to what the future may bring, if/when he needs 24.7 care.
Looking forward to getting to know you!
welcome to the forum.
Ahh, I did wonder about your forum name.
I hope you find the forum friendly and supportive.
Hey @friendhip123 have you checked out https://forum.carersuk.org/t/profiles-of-users-pets/122920 ?
Perhaps you can pop a pic of your gorgeous dog on there.
@Victoria_1806 sorry - didn’t mean to make you emotional !! Just that I was in an emotional state this morning. I love the idea of Pharmacy Conga… I love the idea of joined at hip… typical carers!!
Hope the reunion ladies are behaving!!!
Off for afternoon dog walk next.
Thankyou for your warm welcome.
I dont know how to message direct? Doe that mean like im doing now , or messaging one to one ? Thankyou , new girl issues !
Hi helena ,
Thankyou for your welcome too.
The kindness of other carers is what i need at the moment…when i need to have a moan , it will be nice to do so with people who understand .
Otherwise, i find myself trying to E.X.P.L.A.I.N everything to well meaning people who still have no clue about the life of a carer .