My name is Kathy. My hubby was diagnosed with primary progressive multiple sclerosis in 2019, aged just 51. It took me some time before I even would call myself a carer and come to terms with this new chapter of our lives.
I started writing this 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.
It has been a while. Unfortunately last time I tried to blog, I lost the lot! So here I am again a few weeks later. I think last time I blogged M had not long finished work permanently and in essence it is still early days.
It has been a tough few months for him and going crazily fast it seems. Without trying to nag, I have tried to keep encouraging him to follow up people to get some kind of therapy/counselling.
Over the last couple of months he has been in touch with Help for Heroes (being ex-military has benefits), and they are supporting him in a number of ways. He has now started ‘wellbeing’ short courses on line and finally he started CBT two weeks ago. It is with a guy, which helps. So far so good. I really hope it helps. He is certainly more mindful about why he is self-harming and conscious about it, which is a start.
I am relieved to tell the truth. It has taken a long time to get to this point after his last experience of counselling, which was short lived and put him off.
I continue to have concerns over certain things. His balance isn’t that good and definitely getting worse, especially when fatigued. He had another fall yesterday (first in a while). And I continue to have concerns over his weight as food quickly becomes a comfort for him when he struggles, and he is a bit of a grazer.
I have tried not to nag and take a light hearted approach, but he is so far physically from the man I used to know. I am trying all the time to remind myself that it is still him on the inside, because I do love him. I just get days I really struggle. We go on our first proper holiday shortly so I said when we come back we will try and ‘be good’ before Christmas arrives…
Work wise for me, I am at my end with care work, I have stuck it out and all ready to leave this month, but hanging on and quitting end of December. I am finding the work an extension of home life, only far more intense as these are adults with autism and learning disabilities.
Most of the people I work with are lovely, I am just exhausted every time I do a shift and by the end I am hanging! So for anyone out there trying to care for a loved one and hold down some work, hats off to you! Greatest respect… Some of it is, I need a break, I think. But shift work isn’t working for me or him. And I am slowly getting to accept that the area I am passionate in will probably remain voluntary and a ‘ministry’ to me, because full time work is not an option.
I have had people trying persuade me to go on to Universal Credit and stop working, but with M’s pensions I won’t get a penny… no, because of the tax man we need a little extra coming in right now, praying things level off at the end of the tax year.
But so much more than this, I realise I need to work, at least a little, or I will go insane! I am not ready to stay at home with hubby 24/7. I am only in my 50s. I feel more comfortable if I can cover my outgoings each month and I love having freedom to bless others with my time and money. So I continue to look. I have joined an education agency, really for next term to possibly do exam invigilator work.
I am not really interested in going back in the classroom, unless push comes to shove for money. And looking for a small week on week job, not many hours, just to keep me ticking over. Either way care work is not for me! So I continue to look… the children have not long had their birthdays and soon it will be Christmas! I do not know what awaits around the corner, such is my life, indeed our lives, but I hold onto hope even amidst the rollercoaster ride that it feels at times.