- Share Your Story – Anonymous -

Taking care of my husband has made me stronger

I am a caregiver to for my husband, who has Parkinson’s. We have been married for 45 years. We are originally from Kenya. We migrated to Canada in 2013. My husband was diagnosed with Parkinson’s in 2008 when we still lived in Kenya. He already had Glaucoma, which was affecting his vision. He was losing his eyesight gradually. The Parkinson’s medication was making it worse and in 2012, he lost his vision completely. I have been his caregiver since then. It started slowly with tremors in the right hand, but it is now progressing. In 2012, he had a head surgery for hydrocephalus whereby they put a shunt in his head to drain out the fluid buildup which was making him shiver and restless. I have to be by his side 24/7.

We live in Toronto in a small, one-bedroom apartment. In the beginning I had to show him around the house so that he could move around easily by touching the walls. He was ok. Last year, he became very ill and fell down. I had to call 911. The CT scan at Sunnybrook showed that the shunt in his head was not functioning. They had to do surgery and replace the valves. After the surgery, he became very slow. He has frequent urination problems. He wakes up several times in the middle of the night. I have to take him to the washroom because he is confused and cannot find his way. I have to dress him up. Fastening shirt buttons and zips are very hard for him. I also feed him as he cannot hold the spoon. I try to take him out to the mosque or seniors’ programs. He enjoys being around people. There are many challenges that I have to face, but the biggest challenge is when I have to take him to the men’s washroom when we are out. I feel embarrassed but I have no choice. I am trying my best to make his life as comfortable as possible. I also have to cook, clean the house, do laundry, etc.

My whole life revolves around my husband. I sleep when he sleeps, and I wake up when he wakes up. I am also suffering from severe arthritis and hypertension. I also have a kidney problem. Taking care of my husband has made me stronger. I have faith in the Almighty. May He bless us and give me courage and patience to deal with all the problems.

This is the real story of a Parkinson’s Caregiver. However, some details and names have been changed/removed to keep the caregiver’s identity anonymous.

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