When she started in her current role she never mentioned that she was a Carer. However, there came a point where the caring role increased again and so she approached her boss to request flexible working.

It was at this point that she found out that her employer had a procedure in place to support that. When Kate said she hadn’t been aware of that, her boss responded “Well, you never seemed to not be coping!” 

Trying to hide the situation had meant she had missed out on the support that was available. 

Kate’s advice to other working Carers is to find out your employer’s policies on flexible working and time off for dependants. Also, make your employer aware of your caring role and that there might be times when there are greater demands on you at home.

Relationships Impact

Being a Carer and on call 24/7 has meant that Kate and her husband don’t get any meaningful time to themselves.

Evenings are constantly interrupted by phone calls or unannounced visits, and plans and even holidays have often had to be cancelled to deal with situations that have arisen.

It has affected relationships with siblings who are not involved in caring, and it has affected Kate’s ability to support her daughter and her grandkids.

Her husband and children have been very supportive throughout, and this has made a huge difference to her ability to cope. She’s also benefited from support from her local community who look out for her mum, and from having friends that she can talk to.

What could change to better support Carers?

“I think it’s acknowledging it now, especially the Sandwich Generation where people are not only trying to provide support for children and grandchildren, or they’re still bringing up children, and then they’ve got the additional responsibility of elderly parents, or parents with additional needs. It has to be recognised in the same way, I think, as maternity and the early years is.

It’s a huge undertaking, and it costs you. It costs you in pensions, in your ability to work, in your ability to keep healthy, in your ability to engage in clubs, and to maintain friendships. So I think that has to be acknowledged.

And I think that women are probably disproportionately disadvantaged. It has had an impact on my earnings, and it will have an impact on my pension, so from that point of view I think it has to be viewed seriously.”

The de-bulking operation was successful to the extent that around 50% of the tumour was removed, but this left Michael with limited speech, and unable to write, read or tell the time. These functions later returned following therapy.

At the same time the flat he rented was to be sold, so we were looking for accommodation. Four days after his operation he had to move house, so I was left completing all the paperwork for the move, and also for the DWP. Because of everything that was happening, I missed time-scales and could not have it backdated.
Initially caring was relatively straightforward. I was getting up during the night to administer medication, preparing meals, running 3 households. It was time consuming, but it was manageable.

People initially were crowding us. Many were friends who wanted to be there to help or to be able to tell others how he was. Some, though, were very macabre.

We both found that everyone knows someone who has had a brain tumour, and the medical information each of these people knew was astounding. Brain tumour ‘cures’ included everything from using cannabis, to eating an apricot while singing Mamma Mia, doing a handstand and balancing a penguin on your right foot! Maybe it’s your left foot, so don’t quote me.

When you have lost control of everything it is difficult to come to terms with, so regaining some control of your life is paramount. It was so difficult, emotional and heart-breaking watching and being involved with the recovery – I could not fix it, but had to watch Michael struggle to try to express himself and communicate. The speech therapist advised he was to try to find his own words and we were not to help. Also, speech was delayed, so when I thought he was finished a sentence he hadn’t. This understandably led to a great deal of anger and frustration.

Hearing the sobs of frustration and the anger at not being able to do something that he would consider simple was heart wrenching. Trying to stay strong and not get upset while your child is hurting so much is so difficult.

In the background, having to arrange his will, power of attorney, banking, settling into new accommodation, laundry, shopping, sale of his flat, hospital appointments but most importantly time to sit with him and spend quality time was so difficult. This was on top of having to run my own house.

In March 2018 I had to stop working, and by May I had to re-home my dog as I did not have time to take care of him. He went to a very loving home where he is very happy. I have not kept in contact, as I do not think it would be beneficial to any of us.

People kept telling me I had to look after myself, but I was in shock and felt guilty that as a mum I had not prevented this from happening. I was cooking him nutritious healthy meals, but ignoring my needs so much that my weight increased to a dangerous level, and my energy levels plummeted to such a degree that after a year I needed respite. I was lucky enough to be able to take 3 weeks out and fully restore myself.

It has been a fight to get support in place to help with my brother. A couple of years ago I finally managed to get paid Carers to go in and help with some of his care needs, but we have had problems with the way my brother has been treated, so I’ve also had to monitor that and fight for better quality of care. This has recently improved and it is making a difference.

For years it felt like I was doing this on my own, I never knew that help was available. I remember trying to apply for benefits and finding a complete minefield – I had no idea where to start. Another time, my brother was called in for an assessment – we were told at the assessment that it was fine and we had nothing to worry about, then 2 weeks later his benefits completely stopped! Fortunately, we were able to get help from Stirling Council’s One Stop Shop and we got them reinstated, but it was a very stressful time.

One thing that I’ve found really helpful was getting Power of Attorney in place. I’d previously applied to be my brother’s ‘named person’ under the Mental Health Act, but it didn’t really do much. My brother’s doctor suggested that I apply for Power of Attorney so that he could speak to me directly about my brother. It was expensive, costing us around £400 at the time once you added in solicitor’s fees, but it has made such a difference and allowed me to be more involved in my brother’s care. I would like to see a discount on the cost of this for all Carers that need it, not just those with low incomes, as it can be a huge help in carrying out a caring role.

Each bit of support we’ve managed to get has lifted more of the weight. I wish I’d known about it much earlier. There are still so many people who don’t know that help is available and are missing out on vital support and finances. I would encourage anyone who is a Carer to look for the help that is there, but there also needs to be more publicity from the council and the government around the support available. A few leaflets in a doctor’s surgery are easily overlooked – it needs a high-profile national campaign to make a real difference.

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.

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.