Category: Campaign
When I lost my father to Alzheimer’s
The disorder can wreak havoc with a person’s life, and he or she can wither away before your eyes.
by Humra Quraishi
Those affected by the Alzheimer’s disorder change drastically, beyond recognition. Their memory becomes ‘polka dotted’, with only little islands of memory remaining. With pathological changes in the brain beginning to take place, the affected person’s lifestyle and personality, and everything else connected with them undergo a sharp transformation. The affected person may get into a shell or turn aggressive, or could sit looking lost and forlorn. And as the memory cells deteriorate and decline, the affected person finds it difficult to recognise his or her children.
My family didn’t have the slightest clue about the Alzheimer’s Disorder (AD) until it struck home. My father, Iqtidar Ali Khan, started displaying symptoms soon after his retirement. He began forgetting mundane things and started slipping into depression. At times, he would sit all by himself, looking lost and forlorn, or else sit sobbing. When we would sit beside him and hold his hand, or hug him, he would feel reassured. We didn’t realise that there was something more to the apparent bouts of depression and forgetfulness.
Then, one day, my father got lost in the park. More such incidents followed. Though he had been driving for decades, he suddenly couldn’t drive with the same confidence. Then he lost the sense of roads and familiar settings.
Within weeks, my handsome and well-dressed father had changed. Earlier, he had been very particular about going to the club for tennis or going on long drives, but within a short period of time, all that changed. He seemed lost, shutting himself into a shell…his memory shrank with each passing day. In effect, this is what Alzheimer’s roughly all about: shrinkage of the memory cells and the consequent degeneration.
My father passed away in 1996, but a couple of years before that, he couldn’t recognise us. He just stopped recognising us. His eyes conveyed restlessness, as though he wanted to say much or as if he was trying his utmost to connect with us and reach out. Sometimes he would murmur sentences and recall some incident, long gone by; something from his childhood or young life, maybe. Occasionally he would burst into tears, sob like a baby, and even go looking for his dead mother or his siblings.
One incident, in particular, shattered us. We saw him looking for something he seemed to have lost. He moved about restlessly, peering under beds, behind sofas and doors. When we asked him what the matter was, he spoke with restless impatience, “Where are my children? I’m looking for them. They’re lost! Find my children…are they lost or what!”
We were standing right there, staring at him in utter disbelief, but he couldn’t recognise us. He had been a doting father, helping us not just with our homework but even during the emotional turmoils of our lives. Always a family man, he would wait at the dining table and not eat before all of us had assembled for dinner or any meal. An engineer by profession, he would take us on his tours when he would supervise the construction of the various dams around Jhansi town.
I cannot describe how difficult and traumatic it is to see these painful changes. It is important to mention here that the role of the immediate family is crucial. The only time my father would look a bit peaceful was when we sat close by, holding his hand, clasping him as if to reassure him. Human bonding takes care of much of the pain that an AD-affected goes through.
(Pictures courtesy thinkprogress.org, www.cnn.com. Images are used for representational purpose only)
City hosts three dementia seminars
Dementia and Alzheimer’s awareness seminars at three places in the city reached out to several relevant stakeholders. A pitch report.
by The Editors | editor@themetrognome.in
The Mumbai-based social enterprise, Echoing Healthy Aging (EHA) organised seminars on dementia and Alzheimer’s at venues in South Mumbai, Mulund and Bandra last week. The seminars, titled ‘Dementia Sense’ were held to coincide with September 21, World Alzheimer’s Day.
The seminars got a very good response from participants and especially from stakeholders such as nursing schools, caregivers, family members of dementia sufferers, occupation therapists, matrons and nursing tutors, among others.
A senior nurse from Bhakti Vedant Hospital said, “As a nurse, very often I come across old patient [suffering] with Alzheimer’s. I always found it difficult to understand their behaviour. This seminar helped me understand the point of view of the person with dementia and the five golden rules given in the seminar will definitely help me to work more efficiently in caring for patients with dementia.”
Added a senior lecturer from Sion Hospital’s nursing school, “It is time for us to change our attitudes towards this chronic disease ‘dementia’, and support families of people living with dementia. I hope more such seminars are conducted more often, and they will make people realise that people living with dementia too can have a good quality of life.”
‘I had to put variety of locks on my front door,so that my husband diagnosed with severe dementia, doesn’t go out of house and forget his way back home. But this caused more agitation and aggression in him. This seminar gave me tips to solve this problem and they are simple and easy to implement. It will also give my husband a sense of independence and at the same time, I can keep him safe,” explained a family caregiver of a person suffering from dementia.
See a few pictures from the event:
10 warning signs for Alzheimer’s
How do you know if your loved one is suffering from dementia or Alzheimer’s? Use this checklist to know more.
by Sailesh Mishra, Silver Innings Foundation and Alzheimer’s Association National Office, Chicago
Dementia is a general term to denote a progressive degenerative disease of the brain resulting in loss of memory, intellectual decline, behavioural and personality changes. Mostly older people above 60 years of age are affected by this condition. In Latin, ‘dementia’ means irrationality, and this disorder results in a restriction of daily activities, and in most cases, leads in the long term to the need for care. There are many forms of dementia, the most common one being Alzheimer’s disease.
Alzheimer’s knows no social, economic, ethnic or geographical boundaries and affects people throughout the world. It is estimated that every seventh person in world will suffer from some form of dementia.
There is no cure for the disease, but some treatment and therapy is available to stabilise and arrest the progress of the disease. Here’s what you should watch out for if you think a loved one may be suffering from dementia or Alzheimer’s, and what is normal behaviour:
#1) Memory loss that disrupts daily life
One of the most common signs of Alzheimer’s is memory loss, especially forgetting recently learned information. Others include forgetting important dates or events; asking for the same information over and over; relying on memory aides (such as reminder notes or electronic devices) or family members for things they used to handle on their own.
What’s typical? Sometimes forgetting names or appointments, but remembering them later.
#2) Challenges in planning or solving problems
Some people may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before.
What’s typical? Making occasional errors when balancing a checkbook.
#3) Difficulty completing familiar tasks at home, at work or at leisure
People with Alzheimer’s often find it hard to complete daily tasks. Sometimes, people may have trouble driving to a familiar location, managing a budget at work or remembering the rules of a favourite game.
What’s typical? Occasionally needing help to use the settings on a microwave or to record a television show.
#4) Confusion/disorientation with time or place
People with Alzheimer’s can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there.
What’s typical? Getting confused about the day of the week but figuring it out later.
#5) Trouble understanding visual images and spatial relationships
For some people, having vision problems is a sign of Alzheimer’s. They may have difficulty reading, judging distance and determining colour or contrast. In terms of perception, they may pass a mirror and think someone else is in the room. They may not realise they are the person in the mirror.
What’s typical? Vision changes related to cataracts.
#6) New problems with words in speaking or writing or problems with language
People with Alzheimer’s may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They may struggle with vocabulary, have problems finding the right word or call things by the wrong name (e.g., calling a “watch” a “hand-clock”).
What’s typical? Sometimes having trouble finding the right word.
#7) Misplacing things and losing the ability to retrace steps
A person with Alzheimer’s disease may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. Sometimes, they may accuse others of stealing. This may occur more frequently over time.
What’s typical? Misplacing things from time to time, such as a pair of glasses or the remote control.
#8) Decreased or poor judgment
People with Alzheimer’s may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money, giving large amounts to telemarketers. They may pay less attention to grooming or keeping themselves clean.
What’s typical? Making a bad decision once in a while.
#9) Withdrawal from work or social activities/loss of initiative
A person with Alzheimer’s may start to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping up with a favourite sports team or remembering how to complete a favourite hobby. They may also avoid being social because of the changes they have experienced.
What’s typical? Sometimes feeling weary of work, family and social obligations.
#10) Changes in mood and personality
The mood and personalities of people with Alzheimer’s can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone.
What’s typical? Developing very specific ways of doing things and becoming irritable when a routine is disrupted.
The Metrognome is committed to the cause of Alzheimer’s and dementia awareness through all of September 2013. If you want to share information or anecdotes related to Alzheimer’s or dementia, write to editor@themetrognome.in and we will feature it.
(Pictures courtesy www.webicina.com, www.firstpost.com, www.thehindu.com, www.indianexpress.com)
Two Mumbai-based NGOs and a college held events for senior citizens at Borivli and Malad on Saturday. Here’s a roundup.
by The Editors | editor@themetrognome.in
If more opportunities are provided for senior citizens to not just meet others of their age group, but also those much younger than them, the results can be electric.
This was amply demonstrated in Borivli and Malad on Saturday, September 21, as the Silver Innings Foundation and the Mumbai Chapter of the ARDSI held interactive events and talks for senior citizens at Nani Nani Park, Borivli, and St Thomas Orthodox Church, Malad. Over 450 elders participated in both events, and responded warmly and positively to the informative talks, street plays by Tata Institute of Social Sciences (TISS) students, memory checkup sessions and the final laughter therapy session. “More than 50 per cent of the attendees were women,” said Sailesh Mishra of Silver Innings. “We even had brain games for them. Overall, both sessions were about 1.5 hours long.”
He added that the key collaborators on the events – Pushpa Ma Foundation and the Church – were excellent partners to have for the project. “The community, especially the church support for such awareness [of Alzheimer’s and dementia] will make a huge impact,” Sailesh explained. “More such spiritual organisations should be involved in India for creating awareness of social issues. It becomes easier for outreach.”
See pics of the events below:
The Metrognome has partnered with Silver Innings and ARDSI for Alzheimer’s Awareness month for all of September 2013. If you want to share information, event details or a personal anecdote related to dementia and Alzheimer’s, please send it to us at editor@themetrognome.in and we will feature it.
Fun and learning with senior citizens
The city-based NGO Silver Innings Foundation organised events for senior citizens at the YWCA yesterday. Here are some event snapshots.
by The Editors | editor@themetrognome.in
The Silver Innings Foundation, which works in the field of elder care, counselling and assisted living for senior citizens, among other things, yesterday organised a series of activities for elders at the YWCA, Andheri. A few students from Nirmala Niketan College of Social Work also participated in the events.
The Foundation’s events were a good success, with about 50 elders participating. Says Sailesh Mishra, Founder President, Silver Innings, “We did a street play, then an interactive PPT talk. We also conducted a memory checkup and held memory games and exercise for the elders. There was also a sharing session by family care givers, and the best part was the dance in which everybody took part!”
See pics of the events below:
The Metrognome is committed to the cause of Alzheimer’s and dementia awareness in India. If you have an experience or information to share on Alzheimer’s or dementia, do write to us at editor@themetrognome.in and we will feature your story.
(Pictures courtesy Silver Innings Foundation)