Discussion

Generally, all comments on this site have been closed due to spam and to help create a safe space for people to talk about things that are often difficult to discuss. Comments will be allowed and enabled on new write-ups for a fortnight or so because we actually love to hear from you – its the spam and unsolicitated sales and marketing emails that we want to keep out.

Click on the title to read – Needs Identification Workshop with caregivers to individuals facing mental health challenges

Click on the title to read – On nurturing the positive … and therapy dogs

Click on the title to read – My volunteering experience with Multiple Sclerosis patients

Click on the title to read – Beyond Barriers – Meet the team

Please write to us at caregiverslink@gmail.com or join the Facebook group here to read, post and discuss things.


27 comments

  1. Kathy in MO says:

    I am a caregiver for my 71 yr old husband. He was recenly diagnosed with kidney failure ( will start dialysis soon) and diabetes and chronic obstructive sleep apnea. He has lots of other health issues, heart transplant 24 yrsa ago, two back surgeries in last 20 months, hip replacement, stroke, seizure and frequent episodes of gout. I have had to take over ALL the household chores, yard, car maintenance etc. He also will not take care of any of his medical issues himself. I do not have any time for myself…he is always calling for me and wanting me to do something for him. We have no family members to help and cannot afford to hire anyone. Does anyone have any suggestions?

    1. Janet says:

      Hello Kathy. Thank you for writing in and sharing your concerns with caregiverslink. We are an online resource organisation based in India and support the needs of caregivers and their families through information and referrals. Could you tell us where you live? Perhaps we can research organisations/people who you might get assistance from.

  2. Ramana Rajgopaul says:

    Are there any members of this group from Pune? Can a subgroup for Pune be formed? Could you please reply by email too? I ask this as the provision for getting responses by mail has not been incorporated in this blog. I think that it would be a good idea to incorporate it.

    1. admin says:

      Thank you for posting Ramana – We have promptly added our email address to text on this webpage. Yes we have some contacts with caregivers and those who support some caregivers in Pune and will email you. We do get the email ID’s of those who post on the site, they are not displayed in the interest of safety and privacy. Please also Join the facebook group, where others from Pune may be able to connect with you.
      http://www.facebook.com/groups/105789559517480?ap=1

    2. Shashie Reyna says:

      Dear Mr Rajagopaul, I live in Pune too and Caregivers Link has a very active Facebook link where this very topic is the centre of discussion. Do join us there and let us all set up the Pune group as fast as we can.

      with best regards

  3. Hari's mom says:

    Hi
    I am a mother of 16 year old special needs child. Was too glad to have found this forum, atleast I can have some sharing place. Phew! the parents having special needs child go through arduous challenges to provide care, facilitate the rehabilitation management, go to work, attend to routines and chores, take care of other family members, and manage social life. They hardly have any personal space, and have to constantly work on their emotional regulation. The only motivation is we love our children to death.
    I hope this forum will befriend me to a community that shares common concerns and mutual support. Prime among many issues of caregiving a special child is finding a hired help. Is there any place for hiring trained help for special needs children that anybody could link me up with?

    1. admin says:

      Hi,
      Thank you for posting on the site. We will write in to you at the email ID mentioned along with your post. I do hope that with the network of caregivers and friends of caregivers that we currently have, we will be able to connect you to others in this space, some of whom may have some leads to resources.
      Will be in touch soon.

      1. Hari's mom says:

        Thank you Admin.

        1. admin says:

          Hi again,

          Mailed you, hope you got the mail and it didn’t disappear into your spam box.

          Take care,

          1. hari's mom says:

            I am sorry I did not receive the email. Could you please send it again, I will look out for it? Thank you very much

          2. admin says:

            We have re-sent the email, forwarded it from caregiverslink@gmail.com. If it does not reach your inbox, please check your Junk / Spam mail and also your Deleted / Trash box, in case your email has automatically sent the mails there. The other option is, just send us a line at caregiverslink@gmail.com so that we can direct the reply in response to what you send out. That should be a sure-fire way for the mail to come straight to your inbox.
            Hope this works.

  4. Pawan Dhall says:

    The discussion here seems to have died down, or am I missing something? I’ve not been of much help as a volunteer so far :) But reading the posts above has been good. I’ve been toying with the idea of a caregiver at home for my mother, 78, who is diabetic and has osteoporosis and rheumatoid arthritis. I haven’t had the courage to go to an agency to appoint a caregiver.

    Instead, I’ve been fortunate that I have found someone, not trained, but known, to be there at night when I’m travelling. With domestic help for large part of the daytime, a person to stay at night when I’m out of town, and with the help of colleagues and friends, I’ve managed to cut down on the number of hours my mother has to stay alone.

    I guess it’s better to have known people as caregivers who can later be trained, and this may even become a viable career option for some. The other way round, that is, having trained caregivers, seems a little intimidating – especially after reading some of the experiences and recollecting some friends’ experiences.

    At a personal level, I guess I’m still coming to terms with the cycle of checkups, treatment and creating useful distractions so that mother has less time to think of negatives :) Trouble is when the cycle breaks, when a new overwhelming pain or spikes in blood sugar levels cause the routine to go haywire. There’s turmoil and then relief when the cycle seems to settle back, and then at the back of one’s mind, one prepares for the next event.

    All said and done, I’m unable to figure out how I can soothe myself inside. Exercise, music, films, foods . . . all help only so much. I need to cut out the irritability, and keep wondering how my mother dealt with me when I must have given her plenty of cause to worry and fret as a child – as all children do.

    Isn’t this about being able to rise to the next level as a person? If so, I guess, I’m still somewhere at base camp.

    Pawan Dhall
    Kolkata

    1. admin says:

      Pawan, you’ve brought up something interesting – known caregivers who can possibly be trained. Your reservations around hiring caregivers from agencies and bureaus is shared by so many others. There just appears to be a massive lack of dependable options.

      I do often think about how so many caregivers deal with the parent-child role reversal – sometimes intermittent and sometimes entire. Just by virtue of taking on the caregiver role, you leave ‘base camp’ miles behind you. Thank you for posting – and sharing. Apologies for the delayed response.

  5. overseas_caregiver says:

    Getting good paid help in Delhi is a big challenge. I have had several negative experiences:
    An agency for a household maid for my parents took a commission. The people they supplied disappeared after stealing a lot, and they never returned the commission. Friends warned against reporting this to the police as they feared for our parents’ safety.
    A second agency we used after checking some references supplied a maid. Things worked for four months. Two weeks ago she took off to her home town without telling anyone. We have yet to get a replacement.
    Personal care attendants we use are a mixed bag. Some of them barely know their job. They are taking care of sick people yet themselves live in conditions which are more prone to spreading infections. I don’t know what the answer to this is.
    I know we are not alone. I would love to hear about other people’s experiences. If some of us wrote reviews of specific places online, maybe it would put these places on notice and make them more accountable. Just a thought.

    1. admin says:

      The issues around home personal care attendants keeps cropping up in conversations with caregivers. Yes it would be good if other people would post their experiences, thoughts and suggestions. While there are many things to consider before posts about specific places can be put up online – but certainly sharing experiences, bad and good, can act as guides for persons new to their situation. Often issues related to a single resource provider are universal issues vis-a-vis the majority of providers of that resource. What do people think about this?

    2. Supriya Dutt says:

      I live in Delhi and look after my mon in law who suffers from dementia. This is a huge problem and having learnt from the last few years experience I always ensure
      -That I go to a large agency for the caregiver. I have been dealing with one for 2 years now
      – Not to allow the help to go on leave alone. The agency always brings in a replacement and is responsible for taking them back and forth. . Offcourse the last few have wanted to go back to their home town having come to Delhi for the first time to work and got homesick
      -Salary for about 10 days is always with me- I pay on the 10th of each month for the previous month(1-30th)
      -as soon as they say they want to go home I stop paying them and follow up with the agency on a daily basis. The agencies usually support .
      -if no replacement is available do not release the help . Sometines they claim they will come back. I have held back salary against commission for unutilised period of contract. At least you can then go to another agency

      Some of the means we employ may not be desireable but given that dedicated traoned caregivers are simply not there we need to ensure they keep their end of the deal. In the last 9 months I have had to replace 6 caregivers for so many reasons . Old age dementia patients can be very very difficult and aggressive and hired help look for easier options.
      Employing 12 hour help is not always the best solution for the dementia patient. They get totally confused when the face face changes every 12 hours,

      Anyway all the best- Its a huge challenge!!

      1. admin says:

        Hi Supriya,

        These are very practical and useful tips you’ve posted. Thank you. It would be great if you could share the name and other details of the agency you are using, so we may put it up as a resource on the site. Happy to have you share your thoughts here.

      2. Swapna Kishore says:

        Hi Supriya,

        As someone who has been caregiving for over ten years for a mother with dementia, I’ve had my share of problems of attendants.

        Let me share my experience over the “untrained attendant” part. The reality is, almost no attendant is trained for dementia (even if he/ she claims to be trained). As a result of this, I faced problems because the earlier attendants confused dementia with old age and considered my mother to be a mean person and a liar when she was just disoriented and insecure.

        I have used two ways to handle this:
        1> Conduct the training myself using training material I have prepared
        2> Exposing the caregiver to other dementia patients in a facility where these persons are treated as patients

        Over the years I prepared a “induction material” for new attendants, complete with explanatory graphics and examples. This includes a very vivid graphic of a shrunken brain alongside a normal brain, to make the attendant understand that the strange behaviour they are seeing is because of an organic brain disorder that has physically changed the brain. The material also included examples of how to handle communication, and detailed descriptions of how to handle each activity (such as bathing) specifically tuned for my mother.

        The training usually takes only an hour or two, and I encourage the attendant to take down notes and repeat the training after a few days, till they understand it well enough.

        I also take the new attendant to visit the city’s dementia day care centre, so that the attendant can see that professional nurses/ social workers/ doctors are treating such persons as patients, and the attendant can talk to them and understand that this is a genuine disease, not a cover-up for a stubborn, mean old person’s horrible behaviour. If there is no such centre, even meeting a few social workers may help.

        This may seem like a lot of work, but this investment of a few hours increases the probability of the attendant working better, and staying longer on the job without burn-out. They no longer assume that the odd behaviour is aggression aimed at them; they are able to see it as confusion and frustration of someone who is ill. Some of them even began enjoying playing games with my mother :-)

        You can see some of the graphics/ type of stuff I tell the attendants at my site at http://dementia-care-notes.in

        Best of luck!

  6. Caregiving from a distance « Notes for Dementia Caregivers says:

    […] Read the description here. All Updates, Caregiving in the news   distance caregiving   Dementia care »    « A 91-year old mother talks of her daughter’s Alzheimer’s […]

  7. Overseas caregivers » Caregivers Link Online says:

    […] Overseas caregivers have to deal with some additional challenges unique to their situation – one such caregiver has shared their perspective on our discussion space. Get it here. […]

  8. overseas_caregiver says:

    Being an overseas long distance caregiver
    I have immense respect for caregivers who put their own lives on hold to take care of a loved one. Living overseas and trying to be a caregiver poses its own challenges. Here is my take on it, based on my personal experience.
    1) There is a general mindset in India that people living overseas breeze in for a short time, do a quick bout of care giving, leave and ‘take all the credit’. Immense resentment builds up with siblings living locally. There seems to be a lot of focus on ‘looking good for society’ as opposed to actual action.
    2) In my family, we found that we knew more about what was going on with elderly parents by talking to them on the phone regularly, than the sibling living locally. The local siblings displayed a combination of indifference and denial towards their health conditions.
    Maybe mine is just an example of one or only some of the children ending up taking responsibility for care giving of aged parents. What I find very sad is that families let egos take over, at a time when their parents need them most. They forget that parents spent their whole lives taking care of their children.
    I realize that when I was young and decided to move overseas for better professional opportunities, I did not even think that my parents would get sick and need one help one day. After all – they were taking care of me! My advice to young people today is –by the time you start reaching your thirties start thinking of your life choices. If you care about your parents, participate with them on decision making on how their aging will be handled. Learn from other people’s experiences and it may help you find solutions to your issues.
    Today my parents really need to be living with one of their children. They have three – the one living locally resents them deeply and is largely indifferent, coming through only in emergencies. The other two live overseas and do what they can.
    In my experience these are some of the challenges of being an overseas long distance caregiver:
    a) It is not that easy to take a lot of time off from your job – being away for a long time can jeopardize it. This can have a direct impact on being able to support oneself and parents financially.
    b) Depending on what stage you are in with your career and family, it is not that easy to return to India for good and hope to find work there either.
    In an ideal scenario, siblings would be able to understand each other’s situations and each contribute what they can towards care giving as required. In my situation this has not happened. So this is what I have been able to do and what has worked:
    1) I talk to my parents every day for a short time. It helps for them to be able to talk to one of their children to solve some issues of the day or discuss what is bothering them.
    2) I do what I can for them remotely – I monitor their bank statements and pay some bills online. I hire household help by doing the initial screening from here. I follow up on some home maintenance tasks that need to be done. I call doctors and monitor their progress.
    3) I visit as often as I can. During my visit I do what I can for them – catch up on doctor’s visits, home maintenance and other things they now need help with.
    4) I help financially if required, for medical expenses to reduce that stress for them
    My parents have been fiercely independent and proud people. As long as they were able to, they kept doing work for their children, as opposed to vice versa. They did not want to live with any of their children, especially overseas, because they liked their independent life in India. When they first started needing help due to aging and health issues six years ago, I was shocked and hurt to find out how indifferent my sibling living locally was. Over time I have learnt to come to terms with it. There are still days when I feel angry and resentful about this, but I try my best to focus on what I can do for my parents. I pay no attention to what people think, and say what I think when needed. Sometimes that gets me into trouble, but my priority now is only my parents’ welfare, as they are the most vulnerable.
    I do not have an answer today for what to do if my parents need even more help than they do now. I hope to find the way somehow. And for all other long distance caregivers – I wish you luck. I’d also love to hear about your experiences on how you solve the various challenges you face.

    1. admin says:

      Dear overseas_caregiver,
      Thank you so much for your post – you’ve brought up a lot of things and some of it seems to reinforce what we have heard in our conversations with some other caregivers – essentially that relationships and attitudes don’t always get a chance to get ‘sorted’ out before suddenly one day a person finds themselves being caregiver.
      Others – specially caregivers – who read this post – please tell us what you think.

    2. Supriya Dutt says:

      I am a caregiver for my mom in law who is 85 and been bedridden for the last 4 years. Now she is in an advanced state of dementia. Prior to this she was living alone in mumbai and very independant.

      It is a given ( I have now been married for 23 years) that the daughter in law who is near is the not so nice one!! So also for one’s own child.

      When she fell down and cracked her vertebra in 2007 in my house bedrest started. Salt imbalance followed and so did so much more. my husband and me were totally unprepared for handling her critical illness and so many near death nights. We literally grew up overnight . Along with that came the ayah problems. Did we have the wherewithhall to handle this. We learnt . We needed a lot of pchychiatric help to stay above board but we had no time for that. You don’t have time to live your own life,

      Today after all these months both of us know that we are spent and have no energy for emotions . We try to ensure she is comfortable and medicated.

      To all those who have never managed an old age parent in crisis or given 24X7 support to parents suffering from prolonged illness/ dementia etc ,it is the caregivers who need more support because a dementia patient really does not know what they say or do. They can be aggressive/ manipulative and do so totally unknowingly. They mean no harm but at the same time can cause immense depression to the caregiving child/family member. So if you feel the sibling near the parent is unresponsive look at it from their perspective. Would you switch your life with theirs. Give the sibling a lot of support and take their side. Your mother is now like a child who has lived her life . It is your sibling who still has her life before her and needs a lot of support from the siblings.

  9. Anonymous says:

    I feel that the internet can be used only as a meeting place, after which people should be encouraged to get-together in person and have face-to-face conversations, where breaking the ice becomes easier.

    As for the website, I found myself a little lost while reading it, may be because the objectives and the requirements need to be spelt out a little more clearly.

    1. admin says:

      Dear anon,
      Yes the internet is a meeting place and it would be great to have face to face meetings and support groups. Mail us – we’ll be happy to discuss what can be done about this.
      Another side to this is that the internet can provide easy access to information resources and connect people to people who may not otherwise have the time or the energy, sometimes also the ability to travel and do meetings.
      Actually, we are aiming for both kinds of interactions – this just seemed like a simpler, more cost effective, swifter beginning.
      Re your observation about clarity of objectives and requirements – I think while the overall objective is clearly to create a support network of caregivers and the wider community – multiple objectives and requirements are expected to emerge / be identified – as a part of the process.
      Keep posting. We’re revisiting things everytime we get feedback and comments. Thank you.

  10. admin says:

    Thank you anon, we are happy to be able to extend the space and hope that people concerned with care issues will talk about the things they want to. Caregivers and those concerned with care issues have a lot to share whether or not they choose to disclose their identities publicly.

  11. Anonymous says:

    I think it is helpful for all of us to learn from each other’s experiences, yet at the same time it may not be easy to talk about if the name is made public. Typically in online forums one can use an alias to participate. I also feel that many people in India are very private, more so in the older generation. Anonymity for posting may help in generating an open and useful dialogue.

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