Linda is a Carer for her husband, who has MS. She has been a Carer for 14 years. This is her story in her words.
“In 1997, after years of seemingly unrelated health problems, it all came together and my husband was diagnosed with primary progressive MS.
At first I was frightened, as MS was a total mystery to us both, not knowing anyone who had it or anything about it. I read every book and leaflet I could get my hands on. I became very panicked, and cried a lot. He said he felt the same way, but with no family nearby and two young children to care for he said one of us had to be strong for them. That gave me the strength I needed to look to the future.
“I read every book and leaflet I could get my hands on. I became very panicked, and cried a lot.”
I made the choice to look after him myself. I worked part time in Care, and once I got him out of bed he could manage on his own. As long as I had everything ready and at hand, he maintained his independence. When I was out I was always clock watching, conscious of not being away for too long.
His MS has progressed from needing a stick, to elbow crutches, to wheelchair, to power chair. It has been a slow decline, and my caring role has changed from doing little things, to almost everything for him. All his personal care, toileting, barber, podiatrist. I gave up work two years ago as I had to keep cutting back the hours I could work, and decided it was time to leave. This was a big decision, as I knew my life would change forever.
I spend a lot more time at home and on my own, especially at night as he is exhausted and goes to bed early evening. He can also spend a few days a week in bed. There’s a comfy chair I can move through into the bedroom and we can watch a little TV. We can’t do as much as we used to, but I feel we still manage to have quality time together. I enjoy when he has good days as we can sit and chat for hours, and sometimes go and work out in the garden.
We both came to the decision to access respite. I had kept putting it off, as I felt incredibly guilty at letting him go. He recognised that I couldn’t see my family in England, and how tired I was looking. My family did come up to Scotland, but no longer stayed with us but in a hotel, which just wasn’t the same. I found my first respite a mixed blessing as I went on a break on my own, which was so lonely I just wanted to come home. I now meet up with family down south and arrange a holiday together.
“I found my first respite a mixed blessing as I went on a break on my own, which was so lonely I just wanted to come home.”
It has not been easy to book respite. I find it frustrating as there are only two care homes in this area offering respite for aged under 65, and it makes it extremely difficult to make any holiday plans which is vitally important for my wellbeing.
You are only able to access emergency respite three weeks in advance, and not being able to pre-book makes it hard, stressful and emotional, and almost impossible to get the week I want for my holiday as most places are fully booked by then.
Although I am stressed, I now realise I need a break and enjoy it when the time comes. I only take one holiday a year, and spend the other respite weeks at home resting and stress-free.
- Along the way, certain people have proven to be very helpful.
- Firstly, the District Nurse would always be my first port of call as I know they will act on any problems with regards to profiling beds, air mattress, catheter care and any medical issues
- The Occupational Therapist who puts all disability aids in place
- The Housing Association which has installed all the adaptations needed, such as a wet floor shower and a track and hoist
- Social Work to get the respite in place and help with the problems of any broken equipment
- and the Carers Centre which has a friendly face and a listening ear – it has helped me meet other Carers who understand the same pressures of care, and the Centre has also been invaluable with accessing benefits entitlements.
I feel it is important to keep a positive outlook if you can, and to keep in touch with family and friends. My hope for the future is for all Carers to receive the recognition and reward that they truly deserve.
“I feel it is important to keep a positive outlook if you can, and to keep in touch with family and friends.”
Many thanks to Linda for sharing her story with us. If you have been affected by any of the issues raised in this story, please contact the Centre for support.
