Sudha, 68 has a full time job being a caregiver to her husband who has Alzheimer’s. Not only does she have to be fully alert all the time, she has also learnt to be patient and understanding over time.
When was your husband diagnosed with Alzheimer's?
He was diagnosed 6 years back.
Is there a history of Alzheimer’s in the family?
None
What is the present condition?
His condition is gradually deterirorating. His memory is fading.
Please describe your experience of managing the patient.
I have to assist him in all the daily chores from morning to evening. I have to give instructions for everything. Then he does it on his own...brushing teeth, shaving, bathing, toilet, having food, etc.
What were some of the challenges you faced and what is your advice to caregivers who face similar challenges?
Before he was quite jolly - used to sing, etc. Then he starting losing his temper. It was very difficult to take him to public places. Now I have to keep a close eye on him. Now he is usually quiet and keeps to himself. But he gets very angry and shouts if we get annoyed with him.
Initially, the biggest challenge was to deal with his anger and his refusal to accept his illness. I myself was shattered to see him like this. But I had no choice but to be patient and be supportive. We have to be patient with people with Alzheimer's.
Since you were not a trained person yourself, how did you manage?
Necessity compelled me to manage by trial and error. Initially it was difficult to understand his behaviour. Now I can understand better and I don’t get annoyed with him.
Have you learnt anything in being a caregiver that you wish you knew before?
To treat him with love and affection and not judge him for what has happened to him. Now I feel pity for his condition, not annoyed.
How has this been a learning process and what changes have you had to make to your lifestyle because of this?
I have learned to tackle him now. I have to adapt my day according to his rhythm. My routine has totally changed because of him. I cannot leave him alone without surveillance.
Has it been difficult physically and emotionally to cope with his condition?
Yes I had to manage him all alone and as such I am also old and have my limitations. My social life has also reduced.
The hardest part is that my sleep gets disturbed at night. He can call me at any time at night and I do not get enough rest.
How did you take a break and recharge yourself?
I still try to meet some friends, and maybe sing with them. I also keep myself occupied with TV, Internet, etc.. And most importantly, I talk to my daughter daily and discussing about all this with her gives me a lot of relief.
Do you have any advice for other caregivers?
They need to have mental strength and acceptance.
Do you have anything to say about how ARDSI Kolkata supported you?
What I am grateful to ARDSI support group for is that my husband loves to visit the place and is always eager to go there. Those are the days when I have free time to do my own work and also take some rest.
Personal narrative courtesy ARDSI Kolkata
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