Caregiver Diaries

Caregiver Diaries-Episode 11

January 08, 2021 CaregiverSaathi Season 1 Episode 11
Caregiver Diaries
Caregiver Diaries-Episode 11
Chapters
Caregiver Diaries
Caregiver Diaries-Episode 11
Jan 08, 2021 Season 1 Episode 11
CaregiverSaathi

Welcome to episode 11 of Caregiver Diaries!
 
We bring to you the journey of an invisible warrior, a caregiver to her father-in-law, who is in the last stage of Alzheimer’s. She shares her experience along with her husband, as they watch a strong, intelligent, independent man, with an active lifestyle who has retired from a high post, succumb to his illness. She talks about how this journey has made her realize that nothing in life is stable and she sees life as full of limitless opportunities of change. 

Although she’s experienced a range of emotions throughout this journey of being a caregiver, she has come to realize, what an important role family plays in these tough times. Her family stands by her, with her and has been her strength through this period of caregiving. 
She emphasizes on how important it is for caregivers to have a life of their own and how imperative it is to not cut off from other people and the world… “We hold each other’s hand as we individually wade our way through this painful pathway.” 

If you can identify with this story, please share it with others who care for someone and help them share too. The feeling of being understood, not being alone and access to support is what keeps caregivers going. 

Sharing your story helps understand yourself — feelings, passions, hopes. It lightens the load and offers relief from loneliness, anxiety, anger or guilt. Our experiences and hopes can benefit others - to know that the challenges are the same, learn new ways to cope and care… they aren’t alone but part of a team. 

Spread the love and share your caregiver stories at https://caregiversaathi.co.in/share-your-story.html

For more information on our initiatives and to understand our support please visit our website https://caregiversaathi.co.in/

If caregiver support resonates with you then please donate to our cause at https://caregiversaathi.co.in/donate-funds-form.php

©️ 2019 Caregiver Saathi. All Rights Reserved

Show Notes Transcript

Welcome to episode 11 of Caregiver Diaries!
 
We bring to you the journey of an invisible warrior, a caregiver to her father-in-law, who is in the last stage of Alzheimer’s. She shares her experience along with her husband, as they watch a strong, intelligent, independent man, with an active lifestyle who has retired from a high post, succumb to his illness. She talks about how this journey has made her realize that nothing in life is stable and she sees life as full of limitless opportunities of change. 

Although she’s experienced a range of emotions throughout this journey of being a caregiver, she has come to realize, what an important role family plays in these tough times. Her family stands by her, with her and has been her strength through this period of caregiving. 
She emphasizes on how important it is for caregivers to have a life of their own and how imperative it is to not cut off from other people and the world… “We hold each other’s hand as we individually wade our way through this painful pathway.” 

If you can identify with this story, please share it with others who care for someone and help them share too. The feeling of being understood, not being alone and access to support is what keeps caregivers going. 

Sharing your story helps understand yourself — feelings, passions, hopes. It lightens the load and offers relief from loneliness, anxiety, anger or guilt. Our experiences and hopes can benefit others - to know that the challenges are the same, learn new ways to cope and care… they aren’t alone but part of a team. 

Spread the love and share your caregiver stories at https://caregiversaathi.co.in/share-your-story.html

For more information on our initiatives and to understand our support please visit our website https://caregiversaathi.co.in/

If caregiver support resonates with you then please donate to our cause at https://caregiversaathi.co.in/donate-funds-form.php

©️ 2019 Caregiver Saathi. All Rights Reserved

Even now as I sit to pen this down, I have a ticking clock hanging over my head that is counting down the minutes after which I will have to leave to tend to papa, who is in his last stage of Alzheimer’s, so I will try and make this quick. 

We were plunged into the role of being caregivers around 5-7 years ago, when my father in law started forgetting things suddenly. First it was mostly things like where his specs are or whether he has switched the TV on or not, then it progressed to starting to forget people around him like his favourite artists, his colleagues… he even started forgetting if he had eaten food or not… even now, many times after a meal he becomes adamant that he hasn’t eaten and it is even worse when sometimes without eating he is rigid that he can’t eat the same meal twice… this becomes a cause of concern because we need to ensure that he takes a healthy diet. Then gradually his dementia started interfering with his daily functioning as well. This was particularly hard as when he started needing help with tasks as simple as dressing up, was when we saw him to be the most fragile and dependent. He would often wear his kurta on the bottom and try to wear his pyjama on his torso. It seems absurd and unnerving to see a grown man, especially the man you’ve respected and looked up to all these years, to struggle with things like this, you know? Things got particularly challenging when his problem became worse and he started repeating himself, his questions, his thoughts repeatedly throughout the day…. Initially, my husband and I used to get very irritated and even get a little firm with him but over time we have realised that he’s helpless and we’ve grown to become immune to it. No matter how challenging all this is for us, I just go with the motto that “Life hai, Chalta hai..” and I take each day as it comes, I think the knowledge that nothing is linear and such is life, helps me stay sane.

One thing about my father in law’s illness and our journey with it is that being a psychology student myself, I knew since his onset that it was dementia and so I sort of had time prepare myself mentally for what was to come.. but I think this impacted my husband gravely and in ways much deeper than he leads on.. I have seen him struggle to come to terms with the shock and sadness of seeing his father: a strong, intelligent, independent man, retired from such a high post to inch away from  his active lifestyle and succumb to his illness a little more each day. I know it breaks his heart, but he is strong… for himself, the rest of us and most of all, our father. This is mostly why I feel like more often than not caregivers don’t realise the volume of the role they’ve taken on and it changes us in ways that maybe we can’t see ourselves. When I look back on who I was before becoming a caregiver and now, I see that I have come a long way in how patient I have become, how much in control I am of my anger and just a general sense of acceptance and openness to change. During these troubling times, I often also turn to God. I think He keeps me centred and this sense of spirituality somehow helps me tide through even the hardest of my caregiving days. A lot of these changes that I see in myself are also backed by the realisation that life is unpredictable.. if a man who was so active, so independent and dynamic, is today struggling to be in control of his own body, it baffles me but at the same time gives me a sense of realisation that nothing in life is stable, so it is good to see day and each phase of life as full of limitless opportunities of change. 

Even though I don’t see this as a burden, I do feel like this is a journey not bereft of challenges. One thing that I think impacts me the most and rises as a challenge many a times is the lack of rest that I get. My father in law has, in many ways, regressed into being a child once again and requires 24/7 attention. On top of constantly having to be present and in the role of a caregiver, I also have to repress my anger, my irritation and helplessness as at the end of the day, he is my father in law, he is elder to me and I do respect him. A combination of these feelings, the conflict between wanting him to get better, against the dire need of a break, often add to the mental turmoil that I go through. You know, going through a journey like this which is so psychologically demanding, I have grown to realise that it is my family that is my strength and something that I am extremely grateful for. They have stood by me, and crossed all societal gender roles that dictate that the woman is more equipped to be a caregiver or that it is solely her duty to take care of the ill. It warms my heart to see my son take care of his grandfather, tend to him for hours on end and even change his clothes if he soils himself.. all out of love and affection. Even my husband, I see him spend time with my father in law, have fun banters with him, strike deals to eat one more bite… we all try to be involved as much as possible and in the process, hold each other’s hand as we individually wade our way through this painful pathway. 

But all in all, I have no regrets about how I have dealt with this, yes I have had my moments of doubt, but I would not go back and change anything that I have done all these years. I am proud of myself for how I have handled my role as a caregiver and I think that one thing that all caregivers should constantly remind themselves of is the importance of having a life of their own. If a caregiver cuts themselves off of everything and everyone, they may be able to serve their loved one well for 3 months or 6 months.. but eventually there will be stress and burnout that will set in which would defeat the purpose of it in the first place.. I think that because I consciously take out time to go for walks, meet my friends, have get togethers and enjoy my life as much as I can, is why I am able to stay in touch with myself which then also gives me the mental capacity to fulfil my caregiving role much more efficiently as well.