Read time 2 minutes
Rachit: – Rare & Chronic ailments are not the kind of diseases that can be managed alone. As I reflect on the years since my diagnosis, I wish to acknowledge my family’s strength and spirit that proved vital to my recovery. A caregiver’s role is never easy.
Q-1) Could you briefly describe yourself and the patient you managed?
A-1) At the time that I was caring for my wife who developed young onset Alzheimers I was working as a finance director for a large international engineering company. My wife was a high level civil-servant and took early retirement when symptoms of illness became apparent.
Q-2) What is your experience with providing personal care? Did your life also change in terms of diet, work, and other activities?
A-2) Yes, I had to do a lot of my work after my wife had gone to bed in the evenings. I employed several caregivers to come into the home at times when I had to be at work. I became the cook at home as well as responsible for all other household duties.
Q-3) How did you handle emergencies?
A-3) Abandoned my work at a moment’s notice to take care of issues that couldn’t be done by others.
Q-4) How do you manage the difficult behavior of the patient?
A-4) Had to lock myself in my room at times. At other times I tried to ignore it. Had extremely limited opportunity to talk to anyone or get respite. Carried on regardless.
Q-5) What are your favorite and worst memories of being a caregiver?
A-5) For some years after diagnosis we were able to carry on with normal activities including holidays and weekends away. Worst memory was a small thing that used to trigger me enormously. Any time we went shopping my wife would have to buy the same clothes over and over again. She also had to get multiple hangers for those clothes. By the time she passed away I had several wardrobes full of hangers.
Q-6) Did you adopt any innovative steps to manage your patient better?
A-6) Not really
Q-7) How do you deal with your own stress and self-care needs?
A-7) I didn’t, I took a number of holidays by myself however these were so lonely I regretted going. I joined a support group, but anytime I went I got a call to get home. On one occasion the police where there. I ate out a lot resulting in my physical health deteriorating.
Q-8) What would be your message or advice to caregivers?
A-8) Take care where you can, join a support group, prioritize self-care. get exercise, talk to as many like- minded people as possible. Most of all I would tell people about the importance of finding things to be grateful for and of forgiving yourself and your loved one for things that have gone wrong.
Will, talks about his personal story as a caregiver.