This is something I’ve been meaning to post for months but because of its very nature I’ve either been too busy or plain wiped out with fatigue. At the time it would have been a major rant but time passed and with it so did the anger.
Last December 4th my husband and carer was diagnosed with Stage 3 colo rectal cancer. This came like a bolt out of the blue because he’d had no symptoms whatsoever but it was picked up early through the Bowel Screening Wales Programme. We spent countless hours talking and drinking peppermint tea in bed during the nights putting things in place for me, in prep for my own self care once he went into hospital and during his post op recovery.
We saw my MS Nurse who told us that as long as I could wash my hands and face myself then they couldn’t help, despite the fact that looking after someone 24/7 could potentially affect my MS. We were left to sort out which friends and family could e.g. drive me to places and help in general - household chores such as putting the bins out etc.
The operation itself went amazingly well - an anterior resection of the colon using keyhole surgery . However my husband did need full time care from me, consisting of wound dressing, cooking different food for him than what I eat myself- and I’m not even safe in the kitchen due to dexterity problems, cleaning and ironing, much of which he usually does for me, also need to wash and sterilise towels etc.
I hit the stage that the fatigue brought on by all this caused me one day to just lash out screaming loudly and in anger “I HATE MS”. Not only was it the first time in a lifetime of living with MS that I’d felt anger but my husband heard it all and that made him feel dreadful when he needed my support. It was anger borne out of frustration at not being able to give my 100% the man I love and married 37 years ago,not directed at him.
Anyway time passed and we worked our way through it together and yesterday his surgeon gave the all-clear although we’ve another week of his chemoherapy to get through but once we see the Consultant Onclogist we’ll exptect to get the all clear there too.
The question still remains, “Who cares?” yet I refuse to dwell on the negatives so will say just this - life is short, life is as sweet as we choose to make it,but most of all - Make Every Moment Count.
Thanks - I meant to have also said ( but finding it difficut to type on these new forums) that he recovered enough to embark on a phased return to work within the world of Education, and by now is fully back in work but finding the chemo -induced fatigue a bit tough at times, very much like MS fatigue so has learned to pace himself. Ironic
We’re looking into the issues you’ve been having with typing on the forum. Sound like it was very frustrating- apologies for that. Currently in email dialogue with developers.
I am glad that you posted this as it is something that is worrying me. I haven’t be dxed yet but have seen Neuro who is convinced it is MS ( waiting to have MRI now ) but whatever it is it has all the usual balance/fatigue/dizziness/clumsiness problems. I am a full time carer for my OH who has lung and heart problems and isn’t very mobile, has catheter etc. I have been worrying greatly what would happen if I had a bad relapse or had to go into hospital- how could I care for him with no family or friends close by.
It sounds awful, the lack of help and support you had, makes me worry more. I am very glad to hear that your husband is doing so wll though.
If its of any consolation to you, if you’re aready a full time carer, once you’d get officially dx’d then a rule your MS Team would (or should) get you outside help.
In my case, I’m not visibly disabled by MS, affected mostly by visual, dexterity and fatigue problems. Other symptoms ar controlled by symptomatic relief for hand and foot spasms, neuropathic pain, bowel & bladder etc.so don’t really qualify for outside help.
Whilst I was caring at home here over 25years ago for my mum with bowel cancer, I didn’t realise at the time how much support I had from friends and family, so this past year as given me a real eye opener as to how hard it is to be a carer and I have the utmost respect and admiration for the likes of you
Really sorry that you’e facing an MS dx yourself but remember- don’t be afraid to ask the relevant people if you do need help.
Thanks, Eiona, I will have to see what I can put in place after my dx. Just hope I get one soon rather than stay years in Limboland as so many others have. Peace of mind is the main thing.OH reckons that between us we make about half a decent person!!
Thanks for you wise and compassionate words Val together with your best wishes.
Oddly enough, you mention your dislike of the word ‘carer’ because so do we. I’ve always looked upon myself as wife and mother first and foremost and when Huw talks to various groups, he uses the term 'sharing not caring’or rather ‘sharers’ as opposed to ‘carers’.
In my experience, when the carer can’t care, no one else does.
when my husband and sole carer was admitted to hospital and had emergency surgery, and during his recovery at home and in hospital I asked social services for help. But as I could get in and out of bed and to the toilet they wouldn’t even assess me.
friends helped out with visiting and the only cooked meals I got was when my cleaner brought them. She was a star.
I’m really sorry to read that - it does make you wonder eh?
Thankfully in my case, I have neighbours who ran me everwhere at the drop of a hat, also a 30 yr old son who did a lot of heavy work and gave me lifts, but in his case, although he would have willingly slept over whilst my husband was in hospital, I told him that didn’t want him to because he has his own home and family unit to look after. He did though after hospital visiting each evening make sure that all doors were locked, checked over that there were no gas hob left on etc etc.
I hope everything turned out Ok for you in the end. Yet that question ‘who cares when the carer gets sick’ still remains unanswered for many because there appears to be a disparity of services for people more severely affected by MS depending on where we all live.
I dislike the term carer too although it is useful as a quick shorthand term. OH is my darling and I am just looking after him as part of our life toigether as he would for me. I don’t go to any local carers meetings etc as they seem to be aimed at people caring for elderly relatives on the whole to give them a break and a chance for a bit of a moan. If I had to look after my own Dad, I probably would need that!!
Absolutely - couldn’t agree more, and feel that it it’s a necessary label to get any help we might need.
I also feel that if we look upon ourseves first and foremost as that, then the dynamics within a relationship changes and we could b in danger of becoming nurse and patient. I always fear that if that happened something within our marriage would die.
i refer to my carers as bouncers! for couple of reasons-they look out for me and to assist if i am bouncing on the floor!
i dont like the label carer either but i have no hubby or another adult to support me so ‘bouncer’ with my offical carers thru s/w amuses us all. this situation is hard enough so i try to make it workable/bearable for those involved… ellie
