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What Would Have Helped Me

I interviewed my sister-in-law, Norma, about the heartbreak and struggle of caring for Mother in her battle with dementia.

Photo of Charlene Margot
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As the primary caretaker for her failing mother, Norma compiled a list of things that would have helped her, especially in her mom's final year of life: 

1. Education, free counseling, phone chain, group support, engaging community churches and service organizations to make caregiving their assistance project.

2. Free “senior sitting,” run errands, assist with doctor’s appointments, fundraising to help with financial aid documents, etc. 

3. Public service TV time (free) that offers education for caregivers of family members with dementia. 

4. Caregiver "Care Packages," with info about counseling, community support organizations, financial aid, etc. 

5. Mental health professionals offering pro bono counseling to caregivers. 

6. Workshops/education to teach caregivers about government subsidy programs and financial assistance. 

7. Pro bono legal advice for caregivers, as needed. 

8. Make education for caregivers a priority! This topic is now a way of life in America, the way we do birth control, HIV, nutrition, etc.

9. Financial aid programs and volunteers to help caregivers apply for aid, government subsidies, assistance. 

10. Dentists, podiatrists, grocery stores, clothing outlets, Target, etc. offer discounts to card-carrying caregivers to help financially. 

11. Retired nurses and medical professionals to volunteer a few hours/month to check on caregivers’ general health.

Note: Caregivers are so exhausted they can miss small health problems that can become big health problems later on.

12. A ride assist program so caregiver does not have to drive and calm an elder at the same time (doctor appts, personal care, etc). 

13. Volunteer counseling by therapists, social workers, other licensed care givers. 

14. Shoulders to cry on…


What is a provocation or insight that might inspire others during this challenge?

In order to care for loved ones suffering from dementia, caregivers themselves need support: educational, emotional, financial, personal, medical, and professional. More community support is needed to help caregivers deal with an aging parent, particularly when resources are limited and/or the family system is small.

Tell us about your work experience:

I am the CEO/President of CSM Consulting (Educational and Design Consulting) and founder of The Parent Education Series, now the largest program of its kind in Silicon Valley.

8 comments

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Photo of Wendy Carmical

Well done, such informative feedback.

Photo of Susan

Bingo.

Photo of Joy Johnston

Such a detailed list, this is very helpful. Love that caregiver care packages was on the list, and what the caregiver would like to see in them. Thank you for sharing.

Photo of Charlene Margot

All my sister-in-law, Joy! Hers is real-life, hard-won knowledge as the sole caretaker of a mother with severe dementia. Glad to hear that some of the suggestions are helpful, and may be adapted by others.

Photo of Joy Johnston

Your sister-in-law's caregiving experience and her wish list lines up with the dementia caregivers I've spoken to. Sometimes we get carried away with grand ideas, but for caregivers in the trenches, there are more basic needs. I've adjusted my Respite Care Share concept to capture this element.

Photo of Kate Rushton

Hi Charlene,

Thank you for sharing this with us.

Would you be able to tell us about anything that surprised you from the interview? Do you have any high-level insights you can post or maybe some quotes?

Photo of Charlene Margot

Kate, I have added Norma's suggestions for caregivers to my post. I was most struck by the need to CARE for the caregivers. These needs may be related to mental health (therapists, social workers could donate time), medical (caregivers ignore their own health concerns), financial (teach caregivers how to access financial aid/subsidies, or professional (legal resources to support caregivers). I didn't realize that - in serving the needs of seniors with dementia - the needs of caregivers are so often overlooked. Even as a family member, I did not realize the array of needs Norma faced in caring for her mother (my former mother-in-law).

Photo of Bettina Fliegel

Hi Charlene.
Thank you for sharing Norma's experience and suggestions here.
Adding to the issue you highlight regarding caregivers need for care this quote from the Challenge Brief is striking - "Alarmingly, research conducted at Stanford found that 40% of Alzheimer's caregivers die from stress-related disorders before the person with dementia they are caring for dies." Might screening adults at their annual check up to learn if they are caregivers be a way to identify problems and provide services? A "Caregiver Package", mentioned by Norma, with a variety of resources could be provided? A referral might be made to a social worker to provide further assistance etc. etc.?