Caroline knows what it’s like to care for a loved one with Alzheimer’s disease. When both of her parents were diagnosed during the last stages of her career, she did her best to adjust to her hectic, new lifestyle.
Caroline’s caring role developed years ago when her Dad, Bob, started to show the early signs of the illness. Small changes in his behaviour quickly escalated to severe memory loss as he began to put himself in dangerous situations. When he started to forget his surroundings when driving, Caroline knew that her Dad needed to go to the doctors.
“Dad was diagnosed with the early stages of Alzheimer’s and it was really tough for the whole family. He was very upset when he couldn’t drive anymore and didn’t understand what was happening. Looking back, we can now see so many small changes in his behaviour that just escalated over time.”
At first, Caroline’s mum, Doris, did her best to care for her husband but it became evident that Caroline and her two sisters needed to step in. Between the three of them, they delegated different caring responsibilities which put a strain on their working lives.
“I used to work in shifts, so it was really tough to plan ahead. I never knew what time I would be coming home which was stressful when I wanted to be there for Dad. It was really difficult.”
That’s when Caroline decided to get in touch with the Charity. She had remembered seeing an email at work about how we can support carers and wanted to find out more. When she gave us a call, we were able to provide a supportive conversation and a Carers Passport. This document highlights how the individual's responsibilities affects their work and saves the carer having to explain their personal situation in intricate detail within every new professional relationship. The document also includes any agreements on issues such as compressed hours and working from home.
“I received the passport quite quickly and gave it to my line manager. It proved to be invaluable. It really helped my manager too because it helped her understand my situation. It was a fantastic communication tool.”
The passport allowed Caroline to leave work at short notice without giving detailed explanations on every occasion. When Bob sadly passed away a few years later, Caroline’s mum developed the same condition and the three daughters stepped in to care for a parent once more.
“When Dad died, I had to apply for another Carers Passport which focused on caring for Mum. Once again, it made me feel more in control of my situation. I would highly recommend the passport to other civil servants.”
Caroline cared for her mum until she passed away a few years later. Both her parents were surrounded by their loves ones in their final moments and will always be remembered for their best years. As a Charity, we are glad to have made things a little easier for Caroline during a difficult time.
Although we no longer offer the Carer's Passport, we can still help you complete your Civil Service Carer's Passport. By using our Carer's Passport and Carer's Statement Digital Tool, you'll be able to reflect on your caring responsibilities before you have a conversation with your manager and complete your Civil Service Workplace Carer's Passport. The tool also provides holistic information, support and services for outside the workplace including our Carer's Statement.
Caroline's top tips for caring for a loved one with Alzheimer's
How were your parents diagnosed?
Looking back, I can now see so many small changes in my Dad’s behaviour that escalated over time. When he started to forget how to drive, I knew it was time to go to the doctors. He was then diagnosed with the early stages of the illness and it was tough for the whole family to digest. We let the DVLA know and they took his license away. That was the first big step. He was very upset about it and didn’t really understand the situation. As his condition got worse, he refused to have any care at home and mum just couldn’t cope with it. She was quite independent at that point, but it was still a lot to deal with as an elderly woman. My sisters and I managed to care for him for a couple of years before he had to go into a nursing home. He eventually forgot who Mum was which was hard to deal with… and became convinced that he was married to another woman in his care home. He thought I was his mum a couple of times. When he died, my Mum developed the same condition. She dealt with it quite differently. She became very quiet. We managed to keep her in her own home until she passed away but it was difficult emotionally and practically.
What was the hardest part for you?
The most challenging thing I found was resisting arguments. Don’t feel guilty if you lose your temper sometimes. One of the hardest things is trying to remember how dad used to be. I can only remember how he was at the end. He was not the person he was before. There is no pattern of how it’s going to affect people. You have to support each other as a family and remember it’s not their fault.
How did you cope?
- You have to find humour to get through it. Dad had a brilliant sense of humour and I think I inherited that from him. He was always laughing and joking and then he became very sad when he became poorly. My sister made him a book so he could look through it and that really helped all of us.
- Even though I was busy, I tried to make a little bit of time for myself. I started to go swimming once a week. That half hour away from everything made all the difference. It released a lot of stress and emotions.
- Talk to people. Talk to your friends, family, doctors, and colleagues. Whoever you want to. My team at work were amazing. I talked to so many people going through the same type of thing and it really helped me.
- If you are a serving or former civil servant, give the Charity a call. After chatting to them on the phone and going through everything, they provided me with a Carer’s Passport. I passed the document on to my line manager and it proved to be invaluable. It really helped my manager too because it helped her understand my situation. It was a fantastic communication tool.