Caregivers Stories: Jane Marks, former Executive Director of the Alzheimer’s Association, West Virginia chapter to Caregiver to educating others on SandwhichCare

On this episode of Caregivers Stories Podcast, Kimberly interviews Jane Marks, former Executive Director of the Alzheimer’s Association, West Virginia chapter and currently running the website SandwichCaring.com. 

For 21 years she offered her expertise in running non-profit organizations and transforming complicated sets of circumstances into a person-centered solution. When she started working at the Alzheimer's Association, she became immersed in the world of dementia and got the chance to work along with caregivers and medical practitioners. But after 13 years of serving, she retired from her post, for she needed to take care of her mother as her illness progressed. She shared that just like all those who were diagnosed with dementia, her mother wasn't following any set pattern, but she noticed some changes, and at that time, a newly coined term was given for her condition: mild cognitive impairment. 

During one of the seminars that she attended, she was able to talk to a neurologist who encouraged her to have her mother checked. When they did, they found out that she had Parkinson's with some form of dementia. Jane did not know that her mother felt the tremors internally. Her handwriting changed, she started to have some balance issues, her voice had gotten much softer, and at that time, she did not know that these were all symptoms of Parkinson's. This was when she learned that one of the biggest misconceptions about dementia is that you have to have a specific diagnosis and have a similar set of pattern to be able to tell that one has dementia. As one of the broadest and complex diseases, our philosophy should be changed from following just one set of guidelines, to dealing with whatever manifestation is showing. We need to get rid of the idea that everybody is going to go through a similar pattern because there aren’t any stages and everybody will have a different set of experience. Caregivers and the family members should assess carefully on what will work for their loved one who is diagnosed because what might work for others might not work for them. She also pointed out that even though when things will get really tough, one should never forget to take care of oneself because to fully take care of someone, we need to take care of ourselves too. 

Often caregivers ignore the fact that they too are experiencing trauma. Disregarding mental health can cause a lot of problems and would eventually cause a hindrance from fully functioning. It would be best to always check on yourself, to not be ashamed of admitting that you too are going through a tough time and you need help. 

Listen to the rest of the interview as Kimberly and Jane shared so many heart-tugging stories and lessons from their experience as a caregiver for their mom. Make sure to check out Jane’s page at Sandwichcaring.com or connect with Jane on LinkedIn. 

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