“We remember their love when they can no longer remember.” – Anonymous
Dementia is a disease that affects a person’s ability to remember. They either have problem forming new memories, or remembering old ones, or both. It interferes with the affected person’s skills to such an extent that they find everyday activities like bathing, eating, etc. difficult to perform. It affects 4.1 million people in India, and yet remains an underrated and a less discovered territory. More than half the cases of Dementia go unreported due to lack of awareness or resources. Till date, there is no cure for dementia.
September is celebrated as Mental Awareness month, and we at HappyAging decided to dedicate a day to the silent heroes, the brave companions and the selfless caregivers of Dementia patients. Dementia affects the person immensely, but it also affects the entire family, especially the caregiver. You are no longer living with the person you once knew, but a different version of them. The inside jokes you once shared, the happy memories, the milestones, they all seem like a distant memory and days are now spent in caring for the loved one all the while ensuring you don’t burn out in the process. We had the honor of meeting one such hero- Mrs. Jambhekar, who takes care of her husband of 47 years, Mr. Jambhekar. Meeting both of them was like being in the presence of unconditional love and selfless care.
Excerpts from the interview:
Tell us something about yourself and your husband
We have been happily married for the last 47 years. I was working with a government organization and my husband was at an executive position with Industrial Development Corporation. We live in Pune and are blessed with a son and daughter, both of whom are settled in the U.S with their spouses and children.
When did the symptoms first start showing?
“In 2010, my husband went to the bank for some work, but couldn’t remember his signature.”
In 2010, my husband went to the bank for some work, but couldn’t remember his signature. He came back home a little confused and I told him to change his signature to something simpler that he could remember. We forgot about this as a passing incident and life moved on. But in 2011, my son and his family were in Goa for a wedding and stayed back for an extended holiday, where my daughter in law’s purse was stolen and they lost cash, jewelry and their important documents. In 2012, she and my grandson suffered a major car accident and these two incidents became a trigger for Mr. Jambhekar and we started seeing changes in him.
How did you discover he had Dementia?
Well, after those two incidents in our family, his behavior started changing. He has always been a calm and patient person. But he started losing his temper frequently. The confusion part was always there, but his personality completely started changing. We went to a neurologist in 2014, and after an MRI, we came to know he has early dementia.
Were you aware about Dementia before?
“Not really, and you don’t start reading about it until it happens to you.”
Not really, and you don’t start reading about it until it happens to you. I am also a diabetic patient and would be busy with my health, so initially I never gave Mr. Jambhekar his medicines as he would take them on his own. I didn’t think dementia was such a big deal. But one time, I came home to find his entire bottle of pills empty, as he had taken them in one go because he didn’t remember he was supposed to take only one. There was another time when his medication was over for days but he didn’t inform me, or sometimes when he wouldn’t take them at all. After this I became more alert and decided to take care of his medicines entirely. Now I am the one giving him his pills every day. We also found out later that this problem is neuro-psychological and not just neurological.
Are there any physical ailments due to dementia?
No, but because his brain is not able to give the right signals, off late we have been dealing with other issues that usually come with very old age. But we are seeing a doctor for that.
Also Read: Caregiving guidelines for Dementia patients
How was he before Dementia happened?
He was a very active person and had an outdoorsy personality. He loved staying active and has trekked to the Himalayas thrice. He would play tennis every week and would go for walks every day. Intrinsically, he was a calm and composed person who hardly lost his cool. Even our disagreements would be discussions and we would calmly resolve any indifferences. That changed after Dementia, but with the help of medicines, it has been resolved and he is not aggressive anymore.
What’s your daily routine like?
We go for walks in the morning and evening. My husband can’t go too far because he suffered a fall once, so we walk close by. I need my 45 minutes of walk so I go for longer, while Mr. Jambhekar has a person who comes to do some brain activities with him in the mornings. Then we do Yoga, especially, Pranayama, as that helps him to stay fresh. We also do some simple warm-up exercises at home together. He also goes for physiotherapy thrice a week.
What do you do to de-stress?
“I believe that even though I am his caregiver, I need to keep some me-time aside. One should continue with their individual activities as much as possible.”
I go for my walks and I also go to singing classes. I believe that even though I am his caregiver, I need to keep some me-time aside. One should continue with their individual activities as much as possible. Mr. Jambhekar stays without me and reads his newspaper till I am back.
Has it been financially difficult?
We were financially sound since we were both working, and we are also on pension, so it has not been very rough financially. But it does affect you because you need expenditure for helpers, doctors, therapies, etc.
How has it changed your life?
“Even though this is a tough job, I decided that now it’s my turn to take care of him.”
It has changed things completely. We don’t have a social life; I have to be around him most of the times. Most of his friends are old too, and once people know that the patient doesn’t remember them anymore, they anyway don’t want to visit you too often. But I do try to take him to our relatives occasionally, but as soon as we are home, he forgets who they were. But he has taken care of me since the last 40 years; I got diabetes when I was 35, and he always took care of my health and medicines. So even though this is a tough job, I decided that now it’s my turn to take care of him.
Do you think there’s enough awareness about Dementia in India?
It’s definitely growing. There’s a memory clinic in Deenanath Mangeshkar hospital run by Mrs. Managala Joglekar. They help us with care-giving tips and memory activities for him. We get a lot of encouragement when we go there because we know that we are not alone. We also see other patients there and that makes it a little bit easy to deal with it. There’s also a day care in Bhosari for Dementia patients. There should be more clinics like these in India.
Any message for other caregivers’ of Dementia patients?
“You need to have the ‘Seva bhav’ and think of this as your duty, and that will make things easier.”
This is a demanding job and therefore you need to have a lot of patience – with yourself, the situation and most importantly with the person. There are times I find myself getting angry because I have to repeatedly tell him the same thing I told him minutes ago. But I try my best. You need to have the ‘Seva bhav’ and think of this as your duty, and that will make things easier. Please ensure you are making the patient do mental and physical activities along with the treatment suggested by the doctor, as that will slow down the effect of Dementia. Keep yourself calm and do your best.
We haven’t reached that point where my husband doesn’t recognize me, and I pray that we don’t, but we will cross that bridge when we have to. Right now, it’s my duty to take care of him and show him love for he has always done the same for me. Dementia or not, we were together and will always be.
Also Read: Top 10 Apps for Dementia patients
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