Caring: Carers Week 2016

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This coming week is Carers Week, 6th - 12th June. A week of recognition and celebration of the role of a carer. The carers we are talking about are those who are not employed as a care assistant but those who care for a friend or family member on a regular, short term or full time basis. According to Carers Week there are 6.5 million unpaid carers in the UK. I've mentioned previously that my Mum has become my Grandad's main carer since we lost my Nan and wrote about a weekend I stayed with him here.

I thought I would take the opportunity to write a post about my families experiences and how they relate to the Carers Week Campaign, Building Carer Friendly Communities. First of all I watched my Nan leave the house less and less as my Grandad's mobility decreased and she found it harder to move him around. She never once conveyed frustration or resentment around this. It frustrated the hell out of me knowing that there was help and support available but on the surface she appeared too stubborn to ask for or accept it. I think the real reason was fear. Fear of what might happen if a social worker came in, fear of care assistants coming in at various times of the day. She was afraid of other people coming into her home and taking over. Taking care of the house and Grandad had been her role for many years. Having some experience working in the care sector I tried to reassure her that that wouldn't happen, that she could still be involved and that we could find someone both her and my Grandad liked and felt comfortable with. No amount of reassurance worked and she struggled on.

My Mum accepts some help, we requested an assessment and some adapted equipment. We also receive an allowance to pay a carer to provide care within his home. We have Grandad's carer come in for part of the day during the week. The other part of the day and weekends my Mum provides the care. My Sister, Cousin and I help when we can, usually evenings and weekends so that my parents can go out and maintain some of their social life and some time away from caring. Don't get me wrong, my family do not see the role of carer as a burden in any way and I really appreciate the opportunity it has given me to spend more one on one time with Grandad. Having said that it can be hard. Hard in the sense that you have someone who is dependent on you, someone you are responsible for. We went through quite a long spell last year where we were constantly on edge due to his health, always wondering when he might get another infection, will the effect be worse than the time before, will he be able to fight it off like he did before? The role can also be restrictive, yes we now have the van and an adapted wheelchair which does make things a lot easier in one way but harder in another. The wheelchair is bigger and heavier so hills and small spaces are difficult, pushing him on anything that is not tarmac/concrete can also be difficult, steps and stairs are a definite no. This gives us a few things to think about before we head out for the day.
 
What does a carer friendly community mean to me? I can only comment on what I feel would be helpful from my experiences. For me, I think work needs to be done to provide people with information about where to go to ask for help but also that there is no shame in asking. You are not failing, you are not passing your duty or responsibility onto someone else. You are simply asking for someone to work alongside you to support both yourself and the person you care for. If I hadn't have known where to go to request an assessment, my family would have been stumbling around in the dark. I do not believe anyone at the hospital asked about our situation when my Nan was taken ill, no support or information offered. I also feel that companies that provide care need to offer more flexible times, we found it really difficult to find a company who could offer a block of care longer than 2 hours. What realistically can you achieve in 2 hours? Especially when it takes a good 20 minutes to drive to the nearest town.

Finally, accessibility can be a real issue. I'm not sure what the answer to this problem is, I'm aware that it is not always easy to make alterations to existing buildings or open spaces and that doing so can be expensive. However, on the flip side of that, my Grandad is still a person and deserves to access and enjoy being out in the community and we as a family need to be able to go out and about and take him with us. We all need and deserve a good quality of life, not a restrictive one.

Although, I think we are making progress as a society, I believe there is still a long way to go. If you want to have a look at ways you can help, hop over to the Carers Week website. They have a checklist to help you think about whether your local community is a carer friendly one and how you can help improve it through providing information to others.

What are your thoughts on caring and carer friendly communities?

www.carersweek.org
www.carersuk.org

Caring: Trusting Others

I wrote a post here about a weekend I spent with Grandad. I mentioned that my Mum has taken on the role of his main carer, what I haven't mentioned is that we also have help from an employed carer as well.

Some people and families struggle with the idea of having someone else come in to fulfil the caring role. Our family struggled, I struggled with it. We struggled with feelings of guilt, that we should be the ones providing the care, we also struggled with trusting someone we did not know to care for a loved one. Although I supported my Mum to seek a needs assessment for Grandad and pursue a personal budget for him, I still find it difficult putting his health and wellbeing in the hands of someone else. Perhaps it is similar when parents leave their children in the care of others, I haven't had children to know what that feels like.

Luckily, we found a care agency who provided us with a lovely carer who we, as a family, get on well with. Most importantly so does Grandad. Grandad's carer comes in everyday from 9.30 until 2.30 to allow my Mum some time to continue some of the activities and routines that structured her life prior to Nan becoming ill. My mum, and other family carers, need this precious time for themselves, to remain their own person outside of their role as a carer, to retain their identity and resilience.

Due to the carers personal situation, she cannot continue in her role with Grandad so yesterday we interviewed for her replacement. This time we have decided to directly employ someone instead of going through an agency. This is not a straightforward process for individuals and families with no knowledge of employment legislation (luckily, my Dad has some knowledge in this area). However, there are organisations who can offer support to family carers; Carers UK or more locally to me, Suffolk Family Carers.

So, what do I want from someone caring for my Grandad? What sort of questions do I want to ask or be asked of those who apply for the position? What if we make the wrong choice and things go wrong? What worries me most is that Grandad wouldn't be able to tell us if something wasn't right.

I answered my questions by thinking about the values I feel are important for individuals who need support with daily tasks; respect, choice, independence, person centred and patience. These were the things I looked for, alongside how the individuals interacted with Grandad during the interview and their experiences.

www.carersuk.org

A Weekend with Grandad

On Friday afternoon, I left work at 5pm, I stepped out of my work role and into one as a family carer. As I have discussed in a previous post, I lost my Nan last year. She was my Grandad's carer, when she became unwell my Mum took on the role. This was not an easy transition nor a quick one but one that our family felt necessary. I feel very grateful to be part of a family that has been willing and able to come together to support each other and Grandad during the past year and a half.

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A family carer is defined as; someone who provides unpaid care for a family member or a friend due to an illness, disability, mental health problem or an addition and cannot cope without the support. I have previously worked as a home care assistant so have experience of providing personal care and using equipment such as hoists to move people who cannot move themselves. This knowledge and experience helped to an extent but when I began supporting Grandad I had to get over feelings of embarrassment at helping him with such personal tasks.

It was Mum's birthday last week so about a month ago I offered to stay with Grandad for the weekend so that Dad could take her away. I think it's important for them both to be able to have some quality time together and for Mum to have a proper break from her caring role once in a while.

Grandad is and has always been a kind, gentle man and he has had to learn to be a patient one as well. As long as I have known him he has had a physical disability, losing his leg in a motorcycle accident when he was much younger and being diagnosed with MS (Multiple Sclerosis). In recent years Grandad's physical ability has deteriorated as well as his memory, however, his humour and personality are still very much in tact. He still takes pleasure from life and experiences even if he can't always remember what he has done. He is a definition of living in the moment.

Friday evening was spent in front of the telly catching up on Doctor Foster while Grandad snoozed beside me. He woke long enough to ask for cheese on toast for tea and to take his medication before saying that he would like to go back to sleep, a favourite activity of his. I was worried that he would be up in the night but he slept straight through. In the end I was the one that had trouble sleeping because I forgot my eye mask.

Luckily for me Grandad often enjoys a lay in as much as me. He was still sleeping when I woke at half 9. I sat and had a coffee and watched another episode of Doctor Foster before waking him. He decided that he would like eggs for breakfast so that's what he got alongside his orange juice and morning medication. After another snooze, it was time to have a wash, get dressed and go out.

Grandad now uses a hoist to lift him out of his bed into his adapted wheelchair. We have also been able to purchase an adapted van. This allows us to lower the suspension, push the wheelchair up the ramp and strap him in. Being able to do this gives him and us some much needed freedom. He can come with us to most places, as long as they are wheelchair friendly.

Although we have a lot of equipment to help, it is still physically tiring moving Grandad around, the wheelchair is heavy enough without him in it for a start! I look at it as good exercise though, which makes me feel a lot less guilty about tucking into the Chinese take away and chocolates Grandad and I shared Saturday night. To balance being out and about Saturday afternoon, we enjoyed a lazy day in today watching Christmas films until my parents returned. We then cooked and ate a roast dinner together while watching the Theory of Everything before I packed up my things and headed home.

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