January 28, 2013

tion

Issue No. 1

bringing awareness

The Memory People Page

Alzheimers knows no boundaries. It doesnt discriminate on age, race, sex, or status. It doesnt care if youre rich or poor, healthy or already stricken with another disease.

one person at a time

Alzheimers lives in every corner of the world, and in this issue we are so pleased to feature an interview

with one of our members from Memory People, Swapna Kishore. Swapna resides in India, and when Alzheimers came into her Mothers life, Swapna became her caregiver. Here she shares her journey and some of the insights she found, through it all.

Swapna, can you tell us a little about yourself, and how your journey began? I'm Swapna Kishore, and I live in India. My mother had dementia, but it is very difficult, even with the benefit of hindsight, to say when her problems crossed the threshold where they could be called dementia and where I could be called a caregiver. Back in the initial phase, my husband and son and I were living very close to the one where my parents stayed, and I spent time with my parents every day, helping out with errands, or just chatting or taking walks together. My father was unwell, and that took up a lot of everyone's energy and concern. Around that time, my mother had some balance problems and head injuries, but the doctors did not consider her situation worrying. When she started forgetting things, I assumed it was normal aging. At times she would stare in a puzzled way at people she knew well, or look lost in familiar places, but she always had a rational explanation if I asked her whether she was facing any problem. My mother had always been extremely particular about her independence, and she made it clear she did not want me to "interfere" by asking her how she was doing. Things changed a lot within hours of my father's death. My mother, who had earlier been very courageous, seemed shaken up in a very uncharacteristic way. She said many strange, disjointed things, and looked very stressed, nervous and insecure.

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Because she said she could not live alone, we moved in with her immediately, but then she became upset every change, like more food getting cooked for meals. She would get angry without apparent reason. I assumed this was due to the shock of losing a spouse, and would reduce over time as she got affection and company. But things kept getting worse. She would fling accusations of theft, repeat questions and comments several times, get confused and disoriented, and forget even simple things. I was worried enough to start staying home more often, and I adjusted my work-life and social life for this. We were already consulting neurologists for her balance problem, and we informed them of these problems too, but we did not get a dementia diagnosis till some years later. I'd say her problems grew in an insidious way, and that for some years, I was a caregiver without knowing I was one. How did you, your family, and your Mother accept this diagnosis? I accepted the diagnosis, but that didn't help me cope. The doctor had told me there was no medicine for her type of problem, and her memory and abilities would deteriorate, and she would finally be fully dependent. I got no information on caregiving methods, and had no contact with support forums or other caregivers. The situation was frightening. I surfed unsuccessfully for medical treatments. When I looked for tips to cope with problems (this was over a decade ago, BTW) I did not realize I could check Alzheimer's sites because the doctor had said she did not have Alzheimer's. My problem in the initial years was ignorance, not denial. For example, I hadn't heard dementia "stories", and so it took me a while to understand the extent to which dementia was impacting her abilities, behavior, moods, etc. And I did not encounter stories of how appropriate techniques of communication and helping could simplify life for both patient and carer, so I ended up figuring out most of it slowly, and the hard way.

I'd say her problems grew in an insidious way, and that for some years, I was a caregiver without knowing I was one.

As for my mother, at first she did not register what the doctor said, and later she had problems believing it; to her, the word "dementia" was a synonym for being crazy. contd next page

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I showed her a "family medical adviser" book and she agreed she had most of the listed symptoms, and so the diagnosis could be right, but then she switch back to saying, "I'm not crazy." Matters were made worse by comments of visitors. My mother did not have either Alzheimer's or Parkinson's, the two names others had heard of, so they would say, if she doesn't have Alzheimer's or Parkinson's, then she couldn't be having any problem and all she needs is good food, exercise and willpower to become "normal". They would even encourage her to show her independence by going out alone, advice that lead to episodes of her wandering/getting lost. I think my mother's denial was significantly related to the ignorance, disbelief or suspicion with which many persons around us treated the diagnosis. Upset by their expectations, criticism and comments, she forbade me to mention the word "dementia" to anyone. There was a limit to what I could explain to others by using general phrases like "she gets confused and disoriented very often". I think denial is not just determined by a person's courage and openness, but also by the entire culture's awareness, acceptance, and support. Swapna, Do you feel that we are any farther along in our efforts to bring awareness than what you experienced when you started on this journey? That's a tough question. As I am not an expert in dementia, what I am sharing here are just my thoughts and observations as a caregiver who also tries to support other caregivers. My impression is that in the last few years, dementia awareness and support has gone up in a few, very small pockets in India, but has not reached the public or touched any critical mass or tipping point.

I think denial is not just determined by a person's courage and openness, but also by the entire culture's awareness, acceptance, and support.

If someone lives in a city where specialists understand dementia, if that city is one of the very few that has dementia day care and other support, and if the person moves in social circles that know about dementia, then the chances are higher that this person will recognize the symptoms (in himself/ herself or in a loved one).

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The person may then approach a well-informed doctor and get timely diagnosis and support. Looking at such a case, it may seem like there's been an improvement. For example, as I am connected with the area of dementia awareness and care, I see more people diagnosed and supported. But I would be fooling myself if I thought that this situation was representative or widespread. Given that most state capitals in India currently lack specialized dementia support systems, support groups, and other such facilities, the odds of people being in a "lucky" awareness pocket are very low. I do not think awareness has sufficiently percolated to people who are less literate, people from mid-sized or small towns or from villages, people who cannot access the web and don't know English. Unfortunately, we also have misinformation such as inaccurately worded claims that make people believe that dementia can be completely prevented or fully reversed and cured, or that Indians rarely get dementia. Such articles make readers complacent and dismissive about the realities of dementia. There is not enough balanced, authoritative and easily accessible information to counter the impact of misleading publicity. No campaign can achieve 100% awareness, but we can hope for a situation where most people know enough so that they notice dementia symptoms and seek help, where medical professionals diagnose correctly, and where, post-diagnosis, people get information and support for treatment and care. Dementia awareness around me is well below this level. The contrast is stark and discouraging when I compare it with other major diseases (like diabetes, cancer, or heart problems) though even these diseases need more awareness and support. To me, another concern is the lack of public figures speaking about personal dementia-related experiences and the poor visibility of direct stakeholders--the persons with dementia and family caregivers. Silence around real-life dementia experiences deprives the public of voices and perspectives that would make dementia real and immediate. Thank you, Swapna, for your insights and sharing your journey with us.

Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one. ~ C. S. Lewis

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Caregiver Corner
Top Five Tips for a Caregiver: 1. Try not to take behaviors personally 2. Remain patient and calm 3. Explore pain as a trigger 4. Don't argue or try to convince 5. Accept behaviors as a reality of the disease and try to work through it To learn more: http://www.alz.org/care/alzheimers-dementia-stagesbehaviors.asp#ixzz2DNzbSogt

You can make a difference in the fight against Alzheimers Disease! Visit the site below, sign the petition, and share your story. US Against Alzheimers are doing great things for all those caught in this terrible disease, and your voice will make a difference! http://www.usagainstalzheimers.org/

We would like to extend a personal welcome to each of our new members that have joined us at Memory People over this last month! We walk this journey together, sharing our stories and bringing awareness, and were so glad to welcome each of you to our family.

The Memory People Page is a publication of Memory People, an Alzheimers and memory impairment support and awareness group on Facebook. If you would like to start receiving this newsletter, please email leeannechames@gmail.com and we will be happy to include you on our email list. If you or a loved one has been touched by a memory impairment, if you are an advocate, or if you just want to know more about these diseases, please join us at Memory People. Just type Memory People in your Facebook search bar and click on Join Group.

bringing Awareness, one person at a time