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Why this forum is under-utilised

There are often comments about why the carers forum is quiet and I think that having just read the response to an earlier post, I am going to put my head over the parapet and give my opinion. People with MS and those who look after loved ones with MS are two discrete groups in terms of the challenges that they face in coping with this condition. The evidence from the responses to previous posts on this forum is that it is difficult to ask questions that are genuinely concerning to carers without running the risk of being made to feel selfish about asking them. I am not in my husband’s head, body or situation and while I can empathise, I cannot fully understand and the opposite is also true. So here we go fellow partners and loved ones, I’ll take the abuse for the team. (Again I appreciate that all of our responsibilities are different) It is ok to think that you have a crappy deal without feeling guilty about it. It is likely that nobody close to you will have any idea of the true nature of your situation as your role will involve “personal care” which is hard to talk about. I certainly in my darker moments have thought about the list of things I can no longer do and then felt consumed with guilt for even thinking it. Also it is OK to get really p*ssed off with the responses of “look on the bright side” positivity. In my list of life goals, learning intermittent catheterisation, how to dress a pressure ulcer and how to manually evacuate someone’s bowels were not in my top 10! Over the past 8 years, I have amassed a wealth of knowledge about equipment to make life easier at home, early warning signs that an infection is on the way and small coping strategies to keep myself mentally and physically up to the challenge. I will not be alone in this and I remember only too well the fear and isolation in the beginning. It is time to reclaim this forum and in some way make it a force for good and a safe place for people to say what they can’t say to others.

Good for you Annie! Whilst im a potential MS sufferer and not a carer, i can appreciate how hard it is for people caring for loved ones who are ill.

Yes of course carers have the right and should never feel guilty about letting offsteam, seeking advice, or just simply having a good old rant about the difficulties they face in life. You are only human after all and in my opinion carers are wonderful people who’s own lives and feelings get overlooked too often.

Sending love and best wishes to all of you amazing carers out there!! xxxx

Hi, over the years I have been a member of this forum, I have often popped in to this board, to say hello and try to offer advice when it has been asked for.

I do think it goes quiet quite often. I think maybe some carers are just too tired to look in and post/reply, after a day of caring for their loved one/client.

As the cared for person in our house, I know and appreciate how much goes into looking after someone with a chronic condition.

Last month, I convinced my hubby to take a breakw ithout me. I had carers come stay with me on a rota. Hubby`s holiday went well and he sad he will do it again.

I get my hols with carers in Blackpool!

Everyone`s a winner!

luvPollx

Hi I was a carer from the age of 21 till a few years ago for 16years it’s a tough job and you don’t get the chance sometimes to be poorly yourself. We are all human and if we can support each other than we are half way there. I juggled Uni,work caring and being pregnant all in one year and was poorly throughout my pregnancy…so I look back and think well if I juggled all that then how come now I can’t muster the strength to wash up! You are right about the knowledge you have gained and take comfort in the fact that your efforts in caring for the one you love won’t have gone unnoticed or acknowledged. Keep doing what you do well x Mich x

don’t forget too people who care for fmily or friends often dont see themselves as carers, some people assume this refers to paid home helps etc. Real shame this because there is help out there when you finally accept you have a new title alongside partner, spouse or parent or sibling.

Im a carer of elderly parents, was a carers development officer for 7 years as a job and am disabled so have a carer, nice to tick all boxes!!!

Hi Annie, I really hope more carers join you on this thread. As the receiver of care, I feel guilt too & I love the very rare days my hubby joins his brother for a few hours fishing. I love him having a break but then he feels guilt for leaving me & rings me several times to check I’m ok. He’s 64 now & assures me he is fine doing the household chores. Yet I think he isn’t fine at all.

I’m certain your every second of every day is totally appreciated. You’re so right to say to other carers they don’t need to feel any guilt, not even in dark thoughts that you can’t do what you want to when you want to. Xx

Thank you for all for your kind words. I appreciate your views and understand too well that guilt is something that affects everyone dealing with this. Where the partners of people with MS can have additional challenges is because of the potential young age of needing care (my husband was 45), we still have children to bring up, elderly parents to look after and become the sole breadwinner. Also, we can be our worst enemies. I have had bad experiences when my husband has been in hospital with sepsis and UTIs with the quality of care he has received and as a result do not trust anyone else to look after him. If I could think of one thing that would have really helped me, it would have been practical training in how to move someone without injuring either party, earlier training in skin integrity and what to look for when a pressure ulcer was developing and the warning signs of a severe infection - blood pressure, temperature and urine testing. Sometimes these things come on so quickly there is no time to get external help (my husband went from fine to unconscious with sepsis in 2 hours). I truly believe that knowledge makes us feel less helpless and certainly the MS nurse in our area is so oversubscribed that we have not seen her for a couple of years. From personal experience, depression is something that comes with the territory. If anyone else has experienced this, my advice would be don’t be a hero and make sure you take the drugs on offer. They will help and they are not for ever. Also ask your GP for CBT. Cognitive behavioural therapy is a fantastic tool to learn and something that you can put into practice daily. And finally… I always said the one thing that I would insist on was sleeping in the same bed as my husband and thanks to an amazing piece of equipment that has remained a reality. I found a travel air mattress that goes over the top of a normal mattress and in the past 3 years, no sores. Personal intimacy is the most important thing and I’m not talking about sex. Being able to touch someone and be near them when you can’t curl up on the sofa together any more is a reminder that you are not a carer but just doing what you need to for someone you love.

Hi again, the last sentence in your final paragraph, rings true with me and my hubby…except I really miss the close cuddles in bed…they dont happen anymore…think he is scared of hurting me with my spc. I just have to make do with a goodnight kiss on the lips.

I`ve talked to him about intimacy and he says all those feelings have gone.

I feel sad and lonely sometimes, even those he is with me almost 24/7.

Oh well, after 42 years of looking after me in lots of different ways, I know i am loved.

luv Pollx

Hi Annie I have tried to get my wife Ruth to look in on this forum, but she won’t. I can’t quite work out why the reticence, but I think it’s because she’s caring for me all day, everyday, and so does not want to spend any free, down time, reading about MS. I think also she thinks we can solve most problems between us, or with the help of our wonderful GP. She won’t go along to the local carers’ group either. She is very strong willed and incredibly positive most of the time, though I’ve only been badly ill for the last four years and still have upper body strength. Give it time, she may need mutual support as time goes by. Kev x

I am also a bit on both sides as I am currently being investigated for MS and I am a full carer for my lovely partner who has a severe lung disease. I did join the Carers Society but found their form was so downbet and miserable most of the time that I rareky bother to visit. I wonder of that sort of experience puts people off from looking here. Hope not as there is a much more postive feel to thos board although also a place to vent, as it should be.

I am a lot like your wife, Kev - won’t join local carers group etc as I feel I am only doing what anyone would do - the best for the person I love most in the world as he would do for me. Different for those caring for difficult and elderly parents maybe - if I had to look after my Dad I would be screaming for 23 hours out of 24 respite every day…