My name is Kathy. I am relatively new to being an unpaid carer and it took me some time before I even would call myself such and come to terms with this new chapter of our lives. My hubby was diagnosed with primary progressive multiple sclerosis in 2019, aged just 51.
I have started writing a blog all about my journey, with a hope that it not only helps me, but also others who may be able to relate, as carers present or past. Hopefully it will be a help on some level, or at least a comfort other people on a similar journey.
My blog is on my Facebook page which is called ‘My blog’ (username Katunpaidcarer) if you wish to take a look. But extracts are shared here too.
So the last weeks have not been easy. M was advised by the mental health team to look at a change of medication for depression and they can offer a short course of counselling, but of course he is on a waiting list.
On the Tuesday after that awful night he got an appointment and because he was on such a high dose they are now weening him off and onto some even stronger drugs. )0:
It makes me so sad that the man I love has to go through all this and that he has to rely on medication for help. I said to him I wish he didn’t have to, that he didn’t have to suffer. He said that unfortunately it is very common to MS sufferers, and I guess he realises in that kind of way he isn’t alone. Even though mental health difficulties can make you feel isolated.
The other thing that came out the conversation was, he was signed off work again. He was hoping to keep working, as on some levels this can be a distraction. It gets him out and meeting others and, from that perspective, helps mental health. So this knocked him down, although he understood a change in medication warrants this because of possible side effects, and the doctor could see he was mentally unstable.
Suddenly after going back for only a few shifts, he is back at home again. This got me thinking is this the beginning of the end for work for him? If he simply isn’t coping? Last week he went for a chat with his boss after previously having a conversation with the OH team over possible options going forward.
Of the options, a three day week was suggested, or medical retirement. He doesn’t want a pay- off as he hasn’t been there long enough in role. My heart is sinking here as the reality is hitting that I could end up being the only one in paid work sooner than I realised.
The outcome has not been fully decided yet, but with more weeks off up to June he fears he has had so much time off this year that he is not really viable to the company going forward. The company have been really good to him, of which we are thankful.
I found myself saying in a tactful way, if he does get medical retirement then it would be good to do a little volunteering by means of getting out, meeting people and helping mental health. But quickly said we would cross the bridge when that happens. It just felt so real all of a sudden… In my head I had thought at least another year, and as I heard him talk to a family member on the phone earlier I had a quiet weep.
For any woman who suffers with the menopause, they will understand when I say my sleep has been robbed quite a bit the last so many nights, and with much training for my new role I have felt the tiredness.
Eventually I got to a sports therapist for my leg today and as I had suspected it’s my hamstring, so yet more weeks without running. For some this may not mean much, but we all have our outlets and forms of enjoyment so I am so glad I joined a Rock choir! Because I have not laughed so much in a long time. It was such good fun and a time to forget all the rubbish, stress and challenges for a while. I really felt I needed this on one level, although fighting off feelings of guilt on another…
The other good thing is that our church group has started to meet in our home, and this has been really good and encouraging for M and for myself. We feel very blessed to have people who genuinely care in our group and in our church.
