Support Group and the Caregiver for Alzheimer’s
By Nishi Pulugurtha
Once the diagnosis comes through, it is an arduous journey for all family members of one who has Alzheimer’s disease. First of all, coming to terms with the fact that a loved one has the dreaded disease is very difficult. In most cases, the primary caregiver slowly learns about things. No matter how much one has read about it or heard about it, one needs to learn to deal with it in their own way. There is no way one can be prepared. Yes, there are certain things that one can be prepared for, if one has the knowledge and information as it helps in dealing with the disease. The loved one who has Alzheimer’s disease might be aware that she/he has it in the initial stages of the disease. With the passage of them they forget about it. The journey on the path of forgetting and memory loss has already begun, the nerves in the brain have started the process and once it has begun there is no looking back.
One of the biggest changes that comes about in one who has Alzheimer’s disease is behavioural. I noticed that in my Amma’s case. She had these great urge to go out. Nothing could change her mind. It took me a great while to get used to that. The frequency of the hallucinations kept increasing. She was speaking about things and people in a way that was not right. The initial reaction, in most cases, is to brush these off. This is a very normal, human reaction. It takes time to learn to deal with such things. The psychological pressure on the caregiver is immense. There was always a sense of panic and fear. Amma who was always a very social, friendly person behaved totally contrary to her usual self in certain moments. This was not my Amma, but then she still was much the same. The changes that I noticed were because of the ways the nerves in her brain were tangling and entangling. I needed time to get used to all this. The disease takes a toll on the caregiver and the immediate family. It takes years to come to terms with it and even after that one still feels the pain and sadness at the way a loved one changes.
As I started dealing with it, I learnt a lot on the way. The caregiver needs to learn to deal with things. Physically, emotionally, psychologically, economically, the disease has a drastic effect on the caregiver and the immediate family. I learnt about all of this slowly and gradually and am still learning. In the initial days, it was very difficult, not knowing what to do, how to react to behavioural changes, dealing with maids and ayahs. It is an arduous learning process which goes on. However, over seven years into the disease and caring for Amma has taught me a lot now. One of the most important things it has taught me is patience. There have been moments when I have found things very difficult, almost on the verge of breaking down, but I have carried on. I have had a wonderful group of friends and family members who have been with me through thick and thin, helping me tide over moments of crises.
It is very important to have this support group: people one can reach out to, a phone conversation, a small chat, a coffee with a friend – each and every small thing helps. I learnt that I needed to take care of myself. There have been many times, when I have reached a breaking point. At times, it is very frustrating, but I needed to go on because Amma needed me the most. Everything is upsetting emotionally and mentally. My smiles might be hiding a lot behind them. It is hence very important to take breaks, do things that will help to cope with moments of tension and stress at home. It is here that family and friends play a major role. The health of the caregiver is of vital importance too, not just physical health but the emotional and psychological well-being. Only then can the caring be done well.
On days, I had no help at home; I had to take the day off. On days, when work at college was less, I took Amma off with me to work. Amma liked travelling and I needed to be careful. At my college, she was comfortable as she knew most of the colleagues very well. There were times when this was not feasible. That was when I decided to get in touch with Nilanjana Maulik, the secretary of Alzheimer’s and Related Diseases Society of India, Calcutta chapter. I knew the ARDSI Calcutta chapter ran a day care for persons with dementia and Alzheimer’s. I decided to send Amma to the day care as that helped me manage things better. Initially, Amma went in for three days a week; later she went every day. She liked going to the day care center. They had the facility of someone coming over to take her and bring her back home. At the day care, Amma kept busy, getting involved in all their activities. They read the newspaper, watched television, sang, solved puzzles, did a little bit of yoga, walked in the compound. In other words, activities at the day care were such that the mind would be engaged. They would not just read the newspaper, but have a discussion about it. After watching a bit of television, they would be made to talk about it. There would be celebrations for special occasions and events there. It was obvious that Amma enjoyed going there. She participated in most of the activities, there were times when she was quiet and kept to herself and I was told that they let her be like that for a while. Then they tried to involve her in activities that she liked doing. It made things a bit easy for me as I could be at ease knowing that Amma was in safe hands and was being kept actively involved. It gave me ease and space to be on my own for a while, be at work or doing whatever I needed to. A care giver needs this space. When I moved house, Amma stopped going to the day care centre as it was very far off. I wish she could have continued. The staff of the centre still keep in touch with us. They often call up to enquire about her and have visited her on her birthdays, too.
Nilanjana Maulik has been a big support answering each time I got in touch with her. She has been my angel to whom I have reached out at various points of time for advice, help, suggestions, and tips. Nilanjana has been always very prompt with practical advice and tips on how to deal with someone who has Alzheimer’s. Since issues of caring for and dealing with a loved one who has Alzheimer’s are very important, it is crucial I believe to reach out. No matter how much one knows about the disease and how to tackle issues that may arise, this reaching out is important. Unlike a physical malady which can be diagnosed and treated, in Alzheimer’s and dementia, it is not the treatment but caring that is of paramount importance. It is not an easy task; it is not an impossible task either. Friends, family, and the support network that one has go a really long way in caring for a loved one.
Dr. Nishi Pulugurtha is Associate Professor, Department of English, Brahmananda Keshab Chandra College, Kolkata. She is an academic with varied interests and writes on travel, too. Twitter: @nishipulu
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