My mum, Isa is 99 and has Lewy Body dementia but we only got a diagnosis last June. Would you believe that if you don’t have a diagnosis you are unable to get certain items, eg pull up incontinence pads, although I believe that particular rule has been relaxed.
I tell you this at the beginning because that is what a carer has to contend with, all the time, the large, the very large and the not so large problems. We can feel as though we are banging our heads against the wall all the time—I did frequently.
I have been caring for my mum for years but I have been the sole full-time carer for 5, she is now in a nursing home.
Mum hadn’t been well and came to live with me. We received a care package, which is only at the discretion of the care company. We muddled along.
Family carers generally don’t ask for the job, they don’t sign up for it and my experience is that there is a severe lack of support. There’s no job description as every carers’ job is different. A carer has no specific training so he/she has no idea what they need in advance, how or where to get it. As I’ve already mentioned carers come across a lot of brick walls and brick walls are exceedingly solid.
When I was desperate for help for me, when I needed some support from someone I would at times phone one or other of the helpful organisations, but because of lack of funding I would at best be put on a waiting list as they had no resources. Getting advice was equally difficult, we generally don’t know where to go or we’re shunted around as nobody else know’s either. I was a full time carer for 3 years before I was told about a carers assessment (now called a conversation) or that I was entitled to a social worker. Having a social worker meant that I had someone to phone in times of desperation. The social worker visited as did mum’s care manager and I doubt if there was one conversation that I wasn’t in tears, from exhaustion, responsibility, the daily routine with mum, the list could go on. The social worker was assigned to me for about 6 weeks when she went on maternity leave, she was never replaced!
For the 5 years mum was with me I was on 24hour call. She had an emergency call button if eg she fell, LB sufferers are prone to falls. I was always waiting for the next disaster. In the 5 years I didn’t have a day off let alone a holiday. I was lucky, in the early days mum could dress and feed herself, this may not sound like much to crow about but the care staff cannot always be with us at the appropriate times. Mum’s lunch call was at 11am and her evening meal call was at 3pm.
Twice mum ended up in hospital. A carer always has to deal with emergencies. We have to assess the need for an ambulance, call 999, wait—-each time it was 4 hours and then everything about a hospital admission is traumatic. It was even worse when mum was being discharged. Each time she was in hospital for a month so we lost the care package. It was very difficult to reinstate and putting everything in order for her discharge was difficult. Even waiting for the ambulance, the first time she left the hospital at 9pm, a little late for a person who has dementia, who is frail and elderly. On the second occasion I had to get a hospital bed at home as well as other equipment including a hoist. A full care package was organised but in reality the carers came 4 times a day, turned mum and left. They couldn’t feed her as the wrong salt assessment had been sent home, they couldn’t use the hoist as the OT’s hadn’t been out, you get the idea. If mum needed to do a poo when they weren’t there I had to single handedly turn her over, do all the needfull while trying to hold her on her side, wash her etc. Mum was with me for 6 weeks after hospital and there was no respite for me until week 5 when I had 3 hours one morning, I couldn’t go on. I was often up for 36 hours missing sleep while mum hallucinated and tried to get out of bed. Hallucinations also go with LB. In the end it had to be emergency respite, it took all day to get a bed in a home and then another ambulance etc. After 2 weeks mum was moved to another home, ambulance ordered, however a wheelchair ambulance arrived, so we had to go from Belfast to Newtownards with me holding mum’s head all the way. It only got worse.
Naturally in the care home a carer is asked many questions about their loved one so naturally I was asked the DNR one (do not ressusitate). Mum has the right to life and fortunately for me mum had expressed her wishes years before, she was a believer in euthanasia and definitely didn’t want her life prolonged and had a living will, so she felt strongly that she also had the right to die. For a carer these sorts of questions are yet another form of emotional trauma and responsibility.
I have been allowed to visit mum in the care home for the last few weeks. Some people can face time or window visit but that’s not appropriate with mum. I seem to be the only carer I know at the moment who can visit inside a home. I didn’t see mum for 20 weeks during lockdown and now I have one 15 minute visit a week.
I’ll be honest, lockdown gave me the opportunity to recover, there was very little guilt because it wasn’t my decision, I had time for me. Whilst being a carer I had 2 breakdowns but had to continue my role, there was no one else.
Whilst being a carer for those years and having more and more difficulties getting help, I became very determined that when my full time caring role was finished I would do whatever I could to help carers, especially to help them find a voice and be heard, that is why I’m speaking today, people’s stories and people’s lives make the difference.
Recently I have become a member of tide. tide is a source of support for carers and quite honestly I wish they’d been around 5 years ago. The support that I have had from them has been phenomenal and in a very short time of their existence in Northern Ireland they have already managed to move mountains for carers. I use a word that Tide uses too, passionate, we feel passionate about carers being recognised and valued in their role.
I am very aware that the words on the screen have been negative. The word cloud that you now see has more positive descriptive words and describe the other side of carers and caring, the compassion and love, the dedication and the rewards.
Thank you for giving me this time to express how it can be for a carer.
Judy shared her story at the event ‘Carers Rights in Northern Ireland: during and beyond the pandemic’ organised by the Coalition of Carer Organisations.