Alzheimer's Support Group, Pune

28/08/2024

*तुम्हाला तुमच्या विस्मरणाची काळजी वाटते?*
*मग चला एक पाऊल पुढे उचलून टेस्ट करून घेऊया*...

विस्मरण ही एक सामान्य, प्रत्येकजण अनुभव घेत असलेली बाब आहे. बिल वेळेवर भरायचे लक्षात न राहणे, बाहेर जाताना महत्त्वाची कागदपत्रं विसरून जाणे अशा गोष्टी नेहेमी घडतच राहतात.

काही जणांच्या बाबतीत मात्र विस्मरणाचे प्रश्न वाढलेले दिसून येतात. पुन्हा, पुन्हा तेच प्रश्न विचारणे, ओळखीच्या रस्त्यावर गोंधळ होणे, अलिकडे घडलेल्या गोष्टींची आठवण नसणे असे बदल होताना दिसतात. कुटुंबीयांना अशा व्यक्तीची काळजी वाटायला लागते.

सप्टेंबर महिन्यामध्ये विस्मरणाच्या आजाराची म्हणजे डिमेंशियाची जागृती केली जाते. *अल्झायमर्स सपोर्ट ग्रुप, पुणे आणि ऍक्वाफार्म फौंडेशन, पुणे* यांच्या संयुक्त विद्यमाने 3 सप्टेंबर , 24 रोजी ऍक्वाफार्म फाउंडेशन मध्ये ज्यांना आपल्या विस्मरणाची काळजी वाटते त्यांच्यासाठी आणि ज्यांचे वयोमान ७० किंवा अधिक आहे अशांसाठी आम्ही प्राथमिक मेमरी टेस्टिंग करणार आहोत.

या टेस्टिंगमुळे तुम्हाला विस्मरणाचे प्रश्न असल्यास ते गंभीर आहेत किंवा नाही हे सांगू शकू. तसेच त्यानंतर पुढे काय करायचे याचे मार्गदर्शन देखील करू शकू.

ज्यांना असे मेमरी टेस्टिंग करून घ्यायचे असेल त्यांनी दिनांक 1 सप्टेंबर पर्यंत रजिस्ट्रेशन करणे गरजेचे आहे. त्यासाठी फोन नंबर खालीलप्रमाणे -
शिवाली *9075014306*
ह्याच नंबरवर WhatsApp निरोप पाठवला तरी चालेल.

हे टेस्टिंग निःशुल्क आहे.

रजिस्ट्रेशन केलेल्या मंडळींना ऍक्वाफार्म फौंडेशनमध्ये किती वाजता यायचे याची माहिती दिली जाईल.

*ऍक्वाफार्म फौंडेशनचा पत्ता* -
कै.मुकुंदराव किर्लोस्कर पथ, अपेक्स काॅलनी, प्राप्तिकर कार्यालयासमोर, गोखले हाऊस जवळ, एरंडवणे, पुणे

मंगला जोगळेकर *9011039345*
मधुरा भाटवडेकर *9769356331*
शिवाली वायचळ *9075014306*

27/08/2024

Late post .... Very useful information

How participation in Support group activities is helpful

During the May, 2024 meeting we had discussion about our own support group and its many advantages to our members. This discussion though repetitive for some provides necessary information to the new members as they keep joining throughout the year. The group administrators also felt the need to motivate members to improve participation in the group’s many activities.

Initially, we asked the members about their thoughts on the topic. Members spoke about emotional support, exchange of knowledge and practical tips sharing that happens in the group. Some also spoke about how the sharing helped to normalize the emotions they were experiencing as caregivers. They also mentioned that the discussions helped to understand what challenges to expect in future. And it indirectly prepared them to face the situations. Distress posts for referral phone numbers of caretakers, doctors and other professionals as well as diaper and other surgical items contacts have saved a lot of time and energy for many.

Some points that we highlighted about Support group were -
· Support group is made up of care partners, family members, and loved ones of those with Alzheimer’s disease or a related dementia.
· Although new members begin as strangers, they quickly become friends and part of a big caregiving family. They take the first step in restructuring their lives by forming new relationships with each other.
· The most important thing about a support group is, it provides the atmosphere of caring, frankness and confidentiality. . Caregivers need positive reinforcement that can be given by only by those who know the hard work involved in providing care.
· Members get the chance to vent their frustrations, anger and disappointments, as well as share their successes in a safe, non-judgmental environment.
· Attending a support group is often difficult at first. It takes time to feel comfortable sharing one’s problems with new people.
· The experience of many members is that once they open up, they find that their problems are not so different from those of other support group members.
· Members say that they are able to find hope, from seeing that others who have been caring longer have survived the caregiving experience.
· Apart from the points put forward by the caregivers, support group also offers individuals support and information that is specific to dementia.
· Members provide and receive mutual support and there is exchange of coping skills with one another.
· Support group and the exchange through WhatsApp group and personal meetings provide respite from the daily challenges members face.
· Experienced care partners share tips and tricks of providing care, ideas that may not be found in published material and on-line, which are practical suggestions which can make caregiving easier. Sharing these ideas in a support group helps partners as they do not have “re-invent (the trusted solutions) wheel.

12/08/2024

Support Group Meeting – July 2024

Acceptance of dementia

The topic for caregiver support group meeting for the month of July was “Acceptance of the diagnosis -Dementia”. It is a very important topic as caregivers struggle with it throughout the journey of the illness. Our experience shows that many caregivers’ express anguish about dealing with the disease over the course of illness. There is a sense of overwhelm as they find it difficult to cope with the changes in the patient brought in by the disease.

As usual the meeting started with introduction of new members. The discussion evolved around a daughter presenting her own experience of her mother unwilling to accept the diagnosis. Such a situation leads to various issues such as not understanding how to deal with patient behaviour, coping with caregiver stress etc. Non acceptance by the patient and/or the caregiver increases stress and burden of other members of the family. The participation was good as everyone was keen to hear about different sides of the problem.

Our senior caregivers explained that it may take time for the caregiver to accept the reality and that time should be given to vent the feelings. They also suggested talking to experienced caregivers and with the professionals. Sometimes talking to caregiver friends is easier than talking to professionals. Other family members especially children can get professional help themselves and can act as role models and show how a situation could be handled differently.

Factors that affect acceptance -

· Immediate reactions of denial and fear

· Relation between the patient and caregiver - Past feelings play a role in the efforts to help the patient

· Hesitation to take on additional responsibility

· Hesitation on part of the caregiver to learn more about oneself for fear of future happenings

· inadequate knowledge and skills of family caregivers regarding dementia

· stigma, lack of knowledge and awareness in the community



How to move towards acceptance -

· Allowing time to process the diagnosis is an important first step to adjust to this “new normal”.

· Allowing time to grieve and mourn over the current and future losses caregiver and the diagnosed person may experience can be healthy

· Educating family and friends on the disease and telling them how they can be supportive and being specific about how they can engage can facilitate more support as sharing the diagnosis with others can open new relationships and connections.

· Being part of support groups and online social networks can provide the opportunity to learn from others who are part of the dementia community.

On this note the interactive session came to an end.

30/05/2024

Do attend

22/04/2024

Alz Support Group and Neurology Department of Deenanath Mangeshkar Hospital have started an initiative to create awareness about Brain Health. Dr Rahul Kulkarni, Head of the department has taken keen interest and is involved in the lecture series. The second lecture was on Psychological Problems and Mental Health in elderly by Dr Arvind Panchanadikar, psychiatrist.
Dr Arvind Panchanadikar is a private practitioner and a consultant psychiatrist with Deenanath Mangeshkar Hospital. He is MD psychiatry with Diploma in Clinical Psychiatry form UK. He was working with NHS in UK for some years. He is a sensitive doctor who believes in giving minimal medicines and incorporates therapies in his practice.
He started his talk by defining what old age is and who can be termed elderly. He said that even though there is physical and cognitive decline be it muscle, bone, vision, hearing memory or sleep, it is also a state of mind. The positive side of aging is one has good amount of time and money at hand, freedom to do whatever they want as responsibilities are diminished.
Normal Aging includes
• Change in social abilities but raised social satisfaction
• Adaptive coping and acceptance of limitation leading to stable personality
• Also includes sensory decline, mobility issues and sleep changes
For Good Mental Health having
• Healthy lifestyle
• Adequate Sleep
• Physical and Mental activities
• Social Connects and maintaining meaningful relationships
• Adapting to changes …retirement, relocation, loss
• Seeking Support
Is important.
Issues faced by elderly are as follows:
• Anxiety, Depression and Psychotic Disorders
• Neurocognitive Disorders
• Sleep Disorders
• Substance Abuse
• Psychosexual Disorders
Some of these disorders can be the ones that are carry forwarded from the youth and some develop during old age. It is important for the caregivers to identify that there is a problem and to go to the doctor for investigation and correct diagnosis. He emphasized that taking regular medicines and taking proper therapy as the case may be, go a long way in improving and maintaining mental health condition when problems surface.
The talk ended with lively question and answer session.

11/04/2024

Block your date 13th April sat at 4:30pm

आपल्या 'सक्षम मेंदू' कार्यक्रमातील दुसरे व्याख्यान या शनिवारी आहे आणि आपल्या ग्रुप मधली मंडळी येतील अशी अपेक्षा आहे. तुमच्याबरोबर तरुण लोकांना जरूर आणा.
मेंदूच्या आरोग्याचे महत्व व त्याबद्दल प्रसार करायला हवा आणि म्हणून तुम्ही या आणि तुमच्या ओळखीतल्या लोकांना ह्या कार्यक्रमाची माहिती जरूर द्या.

31/03/2024

Support Group Meeting, March 2024

Support group meeting for the month of March was a free- flowing session. We have a lot of members who are new to the group. So, we wanted them to be introduced to other members and talk about issues they are facing. As expected, many turned up for this online session. Some of them were from outside Pune.

The session began with the introduction of new members. Then there was a discussion on various problems faced by them. Old members generously gave tips and advice to the new ones making them feel comfortable and feel in charge of the situation.

Some questions raised by the caregivers were -

· Patient sleeps throughout the day. There is no participation in activities
· Acceptance of the illness by primary caregivers (spouses)
· After a bout of fever patient has become very quiet and sleeps most of the day
· Patient was a teacher, so wants to go back to teaching
· Primary caregiver not willing to take help from others
· Any breakthrough medicines in dementia. Is aricep a common medicine
· Patient keeps repeating the same questions
· Stroke caused deterioration and patient is not able to sit or do anything on his own.

Some tips that were discussed were

· Repetition of questions is related to short term memory problem. Try to divert and distract the patient. Engage him/her in another activity.
· Do not give long explanations. Talk to the point. One message at a time.
· Always remember that patients do not understand logic and rationale.
· Routine for patients is very important.
· Medicines stabilizes the illness, slows down progression. Does not cure it.
· Proper communication is the key. Many problems can be resolved if communicated well.
· Using humor rather than authoritative and commanding talk helps.
· Rather than asking the patient to engage in some activity, make it a group activity. to
· Think of the different aspects when trying to solve a problem. There is no one right way. Try to be innovative.

Overall, on a positive note, all participants went back with some ideas to make caregiving a better experience.

18/03/2024

Volunteer Appreciation
What a day it was!! An emotion packed day filled with fun, games, food and most importantly appreciation.
Volunteers form an integral part of our work. They work on a regular basis with us in the memory lab, in home visits, in organizing events to make lives of the patients and families more meaningful. 10 of our volunteers came together along with our patients and caregivers to celebrate this day in the memory lab. We expressed our gratitude towards them by giving them a greeting card drawn and painted by the patients and they, in turn spoke about how they feel belonged here, feel good to contribute in bringing smile on the face of the patients and giving respite to the caregivers for some time.
Erandawane Jestha Nagrik Sangh members were kind enough to come and sing a few songs for all of them. All enjoyed the program and went back with their hearts filled with happiness.

03/03/2024

Lecture 1 - Brain Disorders and Brain Health
Dr. Rahul Kulkarni – 10th Feb, 2024
Alz Support Group and Neurology Department of Deenanath Mangeshkar Hospital have started an initiative to create awareness about Brain Health. Dr. Rahul Kulkarni, Head of the department has taken keen interest and is involved in the lecture series. The first topic was - Brain Disorders and Brain Health.
Providing some interesting facts about the brain, Dr. Kulkarni explained that though brain is only two percent of the body mass, it consumes twenty percent of the energy as brain keeps working day and night. He further explained that brain matures at about twenty five years and aging process starts after that. Damage to the brain cannot be reversed. The only way to keep the brain healthy is to look after its health and to keep it active by continuously doing new things ensuring fitness of neural pathways. Information about the disorders Dr. Kulkarni talked about is as below.
1. Stroke -paralysis–Stroke causes damage to the brain because of interruption in blood supply to the brain. Symptoms appear suddenly. They include trouble speaking or understanding what people are saying, numbness or weakness in face, arm or leg, trouble walking etc. Because the blood supply is affected there can be brain damage and other complications. Dr. Kulkarni advised that when stroke symptoms are visible it is important to take the patient immediately to a hospital which has an ICU, CT scan facility and where neurologist is present. Time is of essence here. The earlier the patient is treated the greater the chance of saving the brain. Good medicines are available to treat this ailment. The medicines must be taken life-long. Physiotherapy helps in most cases.
Steps for Prevention of stroke include – keeping diabetes, bp, cholesterol in control NO smoking, NO alcohol, managing stress, exercising for at least 30-40 mins every day, eating healthy food, and following your doctor’s advice.

2. Epilepsy-It is a disorder which is characterised by repeated seizures. There is loss of consciousness. It happens to one in 100 people. It is the most tabooed disorder hence almost 75% patients do not take treatment.

When seizure occurs, electrical activity in the brain increases about a thousand times. First aid includes turning the patient to one side, removing harmful objects in the vicinity. Dr. Kulkarni advised against using onion or chappal to help regain consciousness and using spoon to open patient’s mouth or to do anything to stop the hand movements. Applying anyone of the measures can lead to injury. Medicines help to manage and control the symptoms and patient can lead a normal life in this case.

3. Dementia- Forgetting is normal with advanced age. But when it affects daily functioning of a person it should be a cause of concern. And this could be dementia, a progressive illness which affects not only memory but other cognitive functions like orientation, perception, judgement. A change in personality or way of expressing emotions also can vary.
Dr. Kulkarni emphasized the importance of keeping the brain active. Trying new things, socialising is quite important so that the brain maintains its functioning. Cognitive activities also help. He strongly suggested not retiring the brain. Controlling BP, diabetes, exercising, eating healthy diet and sleeping well are the measures one can take to maintain brain’s health.

4. Headache/Migraine – it is very common to have a headache. The reasons can be many. Over the counter medicines do not always work. If one has persistent headaches then doctor consultation is essential.

5. Parkinsons – It is a disorder that affects the movement and often includes tremors due to nerve cell damage in the brain which causes dopamine levels to drop. Elderly people are mostly affected by it. Common symptom include freezing. It is a progressive illness and there is no cure. However, the symptoms can be managed and controlled with medicines.

6. Vertigo– Vertigo is a sensation of feeling off balance. A person experiencing vertigo may feel that the world around him/her is spinning. It is often caused by inner ear problems. Medicines can help this condition and normal life can go on if patients can convince themselves about it and fight the fear of falls and losing balance

Dr. Rahul Kulkarni urged people to know their illness well and take medicines regularly. A very interesting question and answer session followed the talk.

20/02/2024

We celebrated Caregivers Day by going for a picnic with patients and caregivers . It was to a serene and peaceful place called Gappangan -an agro tourism centre .

The following post is written by our volunteers

१६ फेब्रुवारी Caregivers Day .या दिवसाचे औचित्य साधून आमच्या अल्झायमर सपोर्ट ग्रुपची सहल आयोजित करण्यात आली .सिंहगड पायथ्याशी डोनजे या गावी ‘गप्पांगण कृषी पर्यटन केंद्र ‘ येथे ही सहल डॉ.मंगलाताई जोगळेकर यांच्या पुढाकाराने नेण्यात आली .यात dementia पेशंट, त्यांचे काळजी वाहक आणि काही स्वयंसेवक यांच्यासह ३६ जण सहभागी झाले होते.
सकाळी दहा वाजता सर्वजण उत्साहात गाडीत बसले. गाडीत गाण्याच्या भेंड्या, चॉकलेट गोळ्यांची देवाण-घेवाण होऊन पिकनिकला छान सुरुवात झाली.
तिथे पोचल्यावर सगळ्यांचे चहापान देऊन स्वागत करण्यात आले. तेथील निसर्गसौंदर्याने सर्वांचे मन प्रफुल्लित झाले. तेथील चिंचेची झाडे पाहून सर्व वृद्ध मंडळी लहान होऊन चिंचा वेचू लागली , हात उंचावून उड्या मारून चिंचा काढण्याचा प्रयत्न करू लागली. आपण पुण्यातल्या गर्दी गोंगाटा पासून एका वेगळ्याच शांत सुंदर रम्य ठिकाणी आल्याचा आनंद झाला
Caregiverd Day असल्यामुळे तो साजरा करावा अशी कल्पना मंगलाताई व मधुरा यांची होती. स्वयंसेवकांनी पेशंट आणि काळजी वाहकांचे वेगळे २ गट केले. त्यांना Thank You Card रंगवण्यासाठी दिले . सर्वांनी मन लावून कार्ड रंगवले. आपल्या काळजी घेणाऱ्या व्यक्तीसाठी सुंदर संदेश लिहून कार्ड तयार केले. तोपर्यंत दुसऱ्या हॉल मध्ये मंगलाताईनी काळजी वाहकांची एकमेकांशी ओळख अशी ऍक्टिव्हिटी घेतली . Greeting Card रंगवून झाल्यावर सर्वजण एकत्र आले . तेथे सर्वांना तिळगुळ देण्याचा समारंभ झाला. नंतर प्रत्येकाने आपल्या काळजी वाहकास कार्ड दिले. हे त्यांच्यासाठी गोड सरप्राइज होते..
अल्झायमर या आजारात Caregiver ची भूमिका खूपच महत्त्वाची आहे. पेशंट चे मूड बघून, त्यांच्या कलाने घेऊन, त्यांना योग्य शब्दात समजावून, प्रेमाचा हात देऊन स्वतः न रागवता न चिडता सर्व गोष्टी प्रेमाने व ममतेने कराव्या लागतात व स्वतःकडे पण तितकेच लक्ष द्यावे लागते. पेशंटला सांभाळून स्वतःचा व्यायाम , छंद व रुटीन व्यवस्थित सांभाळणे ही तारेवरची कसरत ते करत असतात. ही सर्व कामगिरी खरंच कौतुकास्पद आहे त्यांच्या या कामासाठी त्यांना सलाम!🙏🙏 Caregivers चा कौतुक समारंभ व सत्कार केला . लहानसे गिफ्ट देण्यात आले. सर्वांनी भारावलेल्या मनःस्थितीत आपले मनोगत व्यक्त केले.सपोर्ट ग्रुपचे महत्त्व त्यातून अधोरेखित झाले. आपल्या व्यक्तींची आपण काळजी घेतोच पण त्याबद्द्ल दिसलेली कृतज्ञता पाहून सर्वजण हळवे झाले.
तोपर्यंत जेवणाची वेळ झाली. गप्पांगण चे चविष्ट गरमागरम भोजन करून सर्वजण तृप्त झाले.
जेवणानंतर थोडे गमतीशीर खेळ यामध्ये सगळ्यांनी भाग घेतला. नंतर गाण्याचा कार्यक्रम झाला. सर्व अनौपचारिक.आणि उत्स्फुर्त! गप्पांगणचे व्यवस्थापक श्री. पंकज यांनी त्यांच्या उपक्रमांची माहिती दिली तसेच तेथिल निरनिराळ्या वनस्पती आणि काही विशेष गोष्टी दाखवून त्यांची पण माहिती दिली .गप्पांगणचे देशपांडे यांनी सगळी व्यवस्था उत्तम केली होती त्याबद्दल त्यांचे आभार मानून , चहापान करून सगळ्यांची परतीची तयारी सुरू झाली
फोटो काढण्याचा कार्यक्रम झाला . सर्वांनी खूप एन्जॉय केला.
पेशंट व त्यांचे काळजीवाहक दोघांनाही त्यांच्या रोजच्या रुटीन पेक्षा वेगळा आनंदाचा, गमतीचा दिवस घालवायला मिळाला याचे समाधान घेऊन आम्ही सगळे घरी परत आलो.

06/02/2024

03/02/2024

*Alzheimer's Support Group, Pune*

*Support Group Metting, February, 2024*

We will conduct our monthly support group meeting this Sunday, 4th Feb at 4.30 pm. It will be an online meeting on gmeet platform. The link is provided below.

The speaker for this meeting is - Dr Chitra Lawate. She has been a caregiver since 2006. In the earlier years she was a secondary caregiver for her father. Currently she is a primary caregiver for her mother. She also helped in caring for her mother- in- law during this period.

She is a practicing pathologist. Besides telling us about her long role as a caregiver; she will also tell us how being a doctor has helped her caregiving.

Please do join in for this meeting. Newcomers welcome.

Program language: Marathi

*Contact*
Madhura Bhatwadekar:9769356631

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30/01/2024

A VERY PROUD MOMENT FOR ALL OF US

Dr. (Mrs) Mangala Joglekar was awarded the “Saraswati Samajseva Puraskar “by Bhagini Nivedita Pratisthan, Pune for her exemplary work in the field of brain health, on 27th January 2024. The program was organized in Nivara Sabagruha, Navi Peth and was well attended. The award was given in the hands of noted speaker, Dr Sanjay Upadhye. As always, his speech was very inspirational and full of wit. He spoke of how social work organisations should showcase their work through different mediums.

Dr. Mangala Joglekar spoke after receiving the award. She credits her coming into the social work field to her aunt. She has been working with the elderly for the past many years in India and abroad. She started her work in dementia in Pune through the memory clinic at Deenanath Mangeshkar Hospital. It has extended to WhatsApp Support group for caregivers in Pune and outside, memory lab, training programs, awareness building activities, home visits and a different activity in the form of memory club for normal elderly people.

She expressed her gratitude towards her family for their support and to the many patients and caregivers who continue to inspire her to carry on her work with passion.

We extend our best wishes to her and hope that her work receives more visibility and that she keeps receiving more awards.

29/01/2024

The 1st meeting of the year was an informal one. We decided to take up a non-dementia topic. It was a good start of new year.

Mangalatai started the meeting with reading of a different type of manache shlok which were quite interesting to hear. Then our speaker for the day, Mr Varshan Chaudhary read out a few stories that had a lot of wit and humour. One of our caregivers read out a very emotional poem penned down by him. Another caregiver add flavour by reading out anecdotes related to the topic that was going on. Mangalatai then again read out a few stories about different batata vadas which left everyone lip smacking. We then played a small game of creating a story. We gave them a line “ Mi cimema baghayla baher padale ….then each caregiver had to add one line to take the story forward . The flow of the story brought smile on everybody’s face, and they started enjoying the activity. One of our caregivers had participated in a 5 km marathon. She narrated her experience of mental preparation first to finally completing the walk. It takes a lot of determination and patience and will to do it . Hats off to her and everybody appreciated her effort.
After this, mangalatai spoke to all about some of the programmes planned. She told them that February month is celebrated as Caregivers month. So, we can plan some outing for the caregivers alone. They need to have some respite and time for themselves. Some other programmes that are in the pipeline are funfair and picnic for all.
The meeting ended on a positive note.

02/01/2024

Alzheimer’s Support Group, Pune wishes you all a very happy and healthy new year.
A quick recap of last year, before we begin our activities of this year with passion and zeal.
1) Caregivers Support Group Meetings -We have online support group meetings on the first Sunday of every month. The topics covered last year were,
• Music Therapy
• Home modifications
• Case Presentations by our caregivers
• Art based Therapy
• Advance Care Planning
• Caregiver’s Perspective towards caregiving
• Psychiatric Issues in Dementia
• Support expected from relatives and friends.
2) Memory Lab –Memory Lab is conducted on alternate Thursdays between 4-6 pm at Deenanath Mangeshkar Hospital. It is a safe place for patients and caregivers to come and try out different cognitive activities and socialize. It follows a standard format starting with physical exercises, omkar, group and individual activities and ends with songs by jestha nagrik sangh members and pasaydan. We had some interesting sessions .
• Dance Therapy session
• Dr Vasudeo Paralikar, renowned psychiatrist visited the lab and appreciated the activities carried out there
• Kandil, Ganapati and Christmas tree making activities
• Bhel Party
• Bhondla and Garba Celebration
3) Training Programs – In order to equip our volunteers and caregivers with skills we conducted training for volunteers and caregivers
• Volunteer Training Program -2 sessions – Volunteers form an integral part of our activities. They are involved in memory lab , home visits , arranging of different programs etc. We felt that they need to have a good understanding of the illness , its path and problems experienced by caregivers and know what role they can play in this journey. The participation was enthusiastic and we got some new volunteers who picked up the nuisances very well and work wonderfully with patients and caregivers
• Caregivers Training Program -2 sessions – In our whatsapps group, we felt that there are old and new caregivers who would benefit if they were given some training in dealing with their patients. So we decided to take 4 sessions with them on dementia, communication, caregiving and dealing with behavioural issues. Participatory approach had many caregivers to openly discuss their problems and sharing helped them to think of a different approach to handle patients.
4) Book Publication- ‘Smruti Akhyan’ a book written by Dr. Mrs. Mangala Joglekar was published in an offline program, followed by interview of Dr. Rahul Kulkarni ,neurologist and Dr. Arvind Panchanadikar, psychiatrist on ‘’Able Brain ‘’.Many attended the program and were benefited by the discussions.
5)Presentation by Dr. Mrs. Mangala Joglekar on ''Caregivers Perspective'' in a Psychiatric Conference organised by SMARTT ,Pune
6)As part of Navratri celebrations, we wanted to highlight the role of female caregivers in caring for their parents or spouses. So we decided to ask our new caregivers to interview our old and experienced caregivers, so that they get some tips on how to take care of their patients. 4 caregivers were interviewed, and we did have 2 male caregivers as they had their roles changed and were caring for their spouses .It was an enriching experience for the interviewee and interviewers as well as the audience
7)Awareness Programs – We had around 16-17 awareness programs and skit presentations but some noticeable ones were at Athathashree Pashan , Athashree Bavdhan followed by memory testing , Vrudhanche Palakatva –online , Aquapharm Foundation and University of Pune
8) We always strive to bring in something new in the activities that we do. We started 2 new activities last year
• Support group of caregivers who reside out of pune – We always receive calls from people outside pune who need guidance in taking care of their loved ones. We decided to form a whatsapp group for them and where they can voice their concerns and discuss issues without inhibitions. It has taken off well.
• Online Memory Club in a new format – Breaking away from our offline and whatsapp memory club format ,we have started an online memory club on google meet . It happens every Saturday between 4-5:30.
If anyone is interested do feel free to contact us.

That’s all for now ….Keeping looking up this space for new activities and news of our ongoing activities…..

02/11/2023

भाग 2
अभयजींची मुलाखत खूप प्रभावशाली झाली ती त्यांच्या बोलण्याच्या शैलीमुळे. त्यांनी बोलण्याच्या ओघात काळजी घेण्याची अनेक कौशल्ये विषद केली. विजयजींच्या मुलाखतीतून त्यांनी स्वतःला बदलण्यासाठी केलेला प्रयत्न सर्वांच्या मनात ठसला. शीलाताईनी रोजचा दिवस वेगळा असतो, भूतकाळात किंवा भविष्यकाळात ना अडकता रोजच्या समस्या सोडवणे आणि पुढे जाणे याचे महत्व सगळ्यांना पटवून दिले. लहान वयातील प्रश्नामुळे त्यांची कहाणी सगळ्यांना हलवून गेली. तर सुमतीताई एका व्रतस्थ योग्याप्रमाणे आपले काळजी घेण्याचे काम करत आहेत हे समजले. त्यांचा जीवनाच्या या स्थितीकडे बघण्याचा तटस्थपणा सगळ्यांना साधता येईल का? परंतु तरी सुद्धा त्यांच्या आतमध्ये कुठेतरी आयुष्यात या परिस्थितीचा सलही जाणवला. आपल्या आयुष्याची दहा, बारा वर्षे काळजी घेण्यासाठी व्यतीत करून वयाच्या पंचाहत्तराव्या वर्षीही परिस्थिती स्वीकारणे किती जणांना जमू शकेल?

सर्वांच्याच बाबतीत आजाराचे निदान व्हायला वेळ गेला. सुरुवातीला काय चालले आहे ते समजत नव्हते. कुठल्या डॉक्टरकडे जायचे हे देखील माहीत नव्हते. तीन, चार जणांचा सल्ला घेऊनही आजाराची कल्पना येत नव्हती. आजाराची लक्षणे चालू झाली तशी थांबतील आणि आयुष्य पहिल्यासारखे सुरळीत होईल अशी वेडी आशा मनात होती. त्यामुळे योग्य डॉक्टरचा सल्ला वेळीच मिळण्याचे महत्त्व लक्षात आले. अल्झायमर्स सपोर्ट ग्रुपमुळे निदान समजायला, परिस्थिती स्वीकारायला तसेच एकंदरीतच काळजी घेण्याच्या प्रवासात मोठी मदत झाली हे प्रत्येकाच्या अनुभवावरून अधोरेखित झाले. या मुलाखतीमधून जे नवीन विचार मिळाले ते खाली देत आहे.

* रुग्णांचे आपल्या आयुष्यात महत्त्वाचे स्थान असते आणि आजारामुळे त्यांच्या रूपाने आपल्याला असलेला आधार निघून जातो. त्यामुळे पहिले दिवस आपल्याला विसरायचे आहेत, आता नवीन जीवन चालू झाले आहे हे स्वतःला समजण्यात आणि स्वीकारण्यात बराच काळ जातो.

* ह्याशिवाय रुग्णाला स्वीकारणे देखील व्हावे लागते. काळजीवाहक आणि रुग्ण हे नाते नव्याने रुजायला एक, दोन वर्षे सहज निघून जातात. या काळात आपल्या स्वतःशी चालेलेला झगडा हळूहळू संपतो आणि व्यक्ती स्वतःला काळजीवाहकांच्या भूमिकेत स्वीकारते.

* रुग्णावर प्रेम असले तरच काळजी घेणे शक्य होते. जिथे प्रेम नाही तिथे काळजी घेणे शक्य नाही. याठिकाणी रुग्ण आपले प्रेम दाखवू शकत नाहीत त्यासाठी आपल्याच प्रेमाचा झरा आटणार नाही तर तो अपेक्षा न ठेवता प्रेम करेल यासाठी विशेष प्रयत्न करावे लागतात.

* आपण ज्याच्यासाठी एवढे करतो तो आपल्याला धन्यवाद देऊ शकणार नसेल, कौतुक करू शकणार नसेल तर त्याच्या वतीने आपलेच कौतुक आपण करायला हवे.

* आपले मोटिवेशन राहावे म्हणून काहीतरी करणे आवश्यक आहे. उदा. सपोर्ट ग्रुपच्या कार्यक्रमात आपण जेव्हा इतरांच्या कथा ऐकतो, त्यांचे प्रयत्न पाहतो तेव्हा नकळत आपल्यालाही हे करणे शक्य आहे हे वाटत राहते.

* रुग्णाचे रुटीन जपल्यामुळे आयुष्याची घडी बसण्यास मदत होते.
केअरटेकर म्हणून ज्यांना कामाला ठेवतो त्यांनाही चोवीस तास अशा व्यक्तीची काळजी घेणे अवघड आहे, त्यांच्यावरही काळजी घेण्याचा ताण येणार आहे, त्यांना त्यांचेही आयुष्य आहे हे ध्यानात घेऊन त्यांच्या गरजा विचारात घ्यायला हव्यात. त्यांना थोडा विरंगुळा कसं मिळेल, त्यांची आवड आपण कशी जपू शकू याकडेही लक्ष देणे आवश्यक आहे.

* आर्थिक नियोजन, वेळेचे नियोजन याकडे लक्ष द्यायला हवे.

* रुग्णाच्या शारिरीक, मानसिक स्थिती कडे सजगतेने बघायला हवे.

* परिस्थिती आपल्याला शिकवते, बदलायला भाग पाडते. आपली बदल करण्याची तयारी हवी. असे बदल आपले आपल्यात केले तर काळजी घेण्याचा मानसिक त्रास कमी होतो.

* काळजी घेण्यामध्ये जशी चिंता आहे, वैफल्य आहे तसे आनंदाचे, समाधानाचे क्षण सुद्धा मिळू शकतात. ते वेचायला शिकले पाहिजेत.

* स्वतःची मानसिक स्थिती चांगली नसेल तर व्यावसायिकांचा सल्ला वेळीच घ्यावा.

* काल काय झाले याचा त्रास किंवा उद्या काय होईल यांची चिंता केल्याने काहीही साध्य होत नाही त्यामुळे आजचे प्रश्न काय आहेत तेवढाच विचार मनात ठेवावा.

* काळजी घेण्याच्या जबाबदारीचे स्वरूप बघता एकट्या काळजीवाहकाने रुग्णाचे करणे केवळ अशक्य आहे. त्यामुळे शक्य असेल त्या ठिकाणी आणि शक्य असेल त्या व्यक्तीची मदत घ्यावी. आजकाल मदत देणाऱ्या संस्था आहेत. त्यांच्या बरोबर कुटुंबीय, नातेवाइक, शेजारी सर्वांनी मिळून काळजी घेणे केव्हाही चांगले. तसेच पुढे काय होऊ शकते याचा विचार करून वेळे अगोदर मदत घ्यायला हवी.

* काळजी घेण्याचा प्रवास सगळ्यांनाच नवीन असतो. त्यासाठी प्रश्न कसे सोडवावेत, परिस्थितीला कसे तोंड द्यावे याचे कौशल्य शिकायला लागते. शिकण्याची मनोवृत्ती असली तर परिस्थिती सोपी वाटायला लागते.

या कार्यक्रमाने सगळ्यांना हे पटले की अशा स्वरूपाच्या कार्यक्रमांनी मनाला मोठा आधार मिळतो, प्रेरणा मिळते, आपल्यापेक्षा इतरांचे प्रश्न मोठे आहेत हे समजते. त्यामुळे असे कार्यक्रम व्हायला हवेत. या कार्यक्रमामुळे मनाची हिंमत वाढली आणि काळजी घेण्याचा प्रवास पुढे चालू ठेवण्याचा निर्धार दृढ झाला अशा भावना अनेकांनी व्यक्त केल्या.

कार्यक्रमाची सांगता विजयजींच्या पत्नी वंदनाताईंनी म्हटलेल्या “गर्द सभोती रान साजणी तू तर चाफेकळी, काय हरवले सांग शोधिसी त्या यमुनेच्या तीरी” या उत्स्फूर्ततेने म्हटलेल्या गाण्याने झाली”. रुग्णांच्या मनातील स्थितीची कल्पना यापेक्षा वेगळ्या शब्दांत कोण सांगू शकेल???

मंगला जोगळेकर
अल्झायमर्स सपोर्ट ग्रुप, पुणे.
9011039345