What does it take to be a caregiver for a partner with dementia?
As we head into our 4th season of Everyone Dies, we are beginning a series about caregiving for people diagnosed with a dementing illness. There are many aspects to this caregiving role, not the least of which are the many years and intensity of caregiving required. The loss of role as spouse or child, the intensity of the around the clock care, the loneliness of the work…all requires a commitment and strength that we may not think we have. This week we talk with Michael Porter about his experiences caring for his wife for 12 years with Huntington’s Disease.
The real experts on dementia caregiving are the family members who do it 36 Hours a Day.
EVERY DAY.
Learn from the experts – the family caregivers
Through her career, Marianne has spent countless hours career caring for people living with dementia, taught nursing students how to care for people with dementia, and supported caregivers that had a partner with dementia by facilitating support groups. However, the real experts are the family members who do the caregiving 36 hours a day. Every day.
So, in talking about caregiving we have a series of interviews for you with Michael Porter, who has allowed us to see what life is like and what he has learned being a caregiver for his wife Janet who is living with Huntington’s Disease. If you don’t know about it, please listen to our podcast about Huntington’s Disease (Episode 34).
What is Huntington’s Disease?
The Reader’s Digest version of Huntington’s is that it is a rare inherited gene defect. There are about 200,000 people diagnosed with it a year, there is no cure, and there are between 10 and 30 years between diagnosis and death. The primary symptoms are dementia, movement issues (similar to Parkinson’s disease) and people also go through a violent period in the course of their illness. Our podcast episode on Huntington’s Disease (S1E34) goes into much more depth.
Is it possible to be both a spouse and caregiver?
In Michael’s case, Janet has been living with this disease for 12 years and at the time of this interview was receiving hospice care at home. One thing we asked Michael about was how he balances his role as a spouse and as the primary caregiver. I think it’s very worthwhile to listen to his answer about his feeling of his loss of place in his relationship with Janet. He talks about the need to cultivate a new relationship with her, that of caregiver, and his need to put away his role of a spouse “in a box”. To him, the role of spouse is gone and replaced by the caregiver role.
Join us for this interview with Michael who has many insights to offer regarding being a care partner to a terminally ill spouse.
Please follow Michael’s Blog: Reaching Out in Love – A place for the chronically ill and their caregivers.
Related Podcasts About Dementia
- S1E16: Alzheimer Caregiving and Advocacy with Betsy Wurzel
- S1E34: Huntington’s Disease
- S1E48: Alzheimer’s Disease
- S1E49: What to expect during screening for memory loss
- S2E1: Lewy Body Disease
- S2E7: Nonpharmacological Management of Dementia
- S3E47: Frontotemporal Dementia Part 1 – What Is FTD?
- Frontotemporal Dementia Part 2 – How FTD is Managed
Resources for Huntington’s Disease
- Reaching out with Love: https://www.reachingout.love/blog/
- UCSF Dementia Patient Guide_CBS_11-3-17.pdf
- HDSA National Headquarters: Newsletter, HD publications information and referral, research updates. 1-800-345-HDSA or http://www.hdsa.org
- Huntington’s Disease Lighthouse Families: A comprehensive organization devoted to providing reliable information and support to HD families. http://www.hdlf.org
- Huntington’s Disease Youth Organization: Provides education and support for young people impacted by HD. http://en.hdyo.org or email: info@hdyo.org
- Department of Motor Vehicles (DMV): To obtain a disabled parking placard.
Call 1-800-777-0133 for the office nearest to you. http://www.dmv.org - Caring Voice Coalition: A national organization serving people with Huntington’s disease and other specific disorders through financial assistance programs, educational materials, and links to regional community resources.
1-888-267-1440 or http://www.caringvoice.org - Social Security: To apply for Social Security Disability. Call 1-800-772-1213 for the office nearest to you.
- Hereditary Disease Foundation: A foundation with information and updates on HD research. 212-928-2121 or http://www.hdfoundation.org
- Huntington Study Group: An international collaboration of researchers conducting studies into treatments and a cure for HD. 800-487-7671 or http://www.huntington-study-group.org
- Cure Huntington’s Disease Initiative (CHDI): A privately funded not-for-profit biomedical research organizations devoted to accelerating treatment for HD.
http://chdifoundation.org
Recipe of the Week
This week we bring you an old-fashioned Amish Funeral Raisin Pie, perfect for your next funeral luncheon. Head over to Recipe Lion for this delicious, sweet recipe! What is funeral pie? Learn more about the tradition from Atlas Obscura.
https://blog.feedspot.com/palliative_care_podcasts/
As a songwriter, ‘Everyone Dies’ is inviting you to showcase your original work on an upcoming podcast.
There are many wonderful songs that could be played at a funeral. We also know there are songs that could be played, but are cringeworthy (e.g. Ding Dong the Witch is Dead; Another One Bites the Dust; Ring of Fire, etc.).
We are inviting you to send us a recording of two of your original songs (i.e. that could be played at a funeral, one that is appropriate, one that is likely not) to be included in the third half of the ‘Everyone Dies’ podcast. We will include as many artists over the next year (maybe longer if we are enjoying the segment) as possible.
What we need:
Go to this link, fill out the form and submit it along with your two original songs in .wav or .mp3 format (i.e. two original songs that could be played at a funeral, one that is appropriate, one that is likely not). We will screen them and let you know what week your work will be included. We will include all your information in our show notes so people can purchase your recordings.
Everyone Dies: and yes, it is normal!
Everyone Dies (and yes, it is normal) is a story about a young boy named Jax who finds something special on the beach where he and his grandpa Pops are enjoying a wonderful day. Pops helps Jax understand that death is a normal part of life. This book provides an age appropriate, non-scary, comfortable way to introduce the important topic of mortality to a preschool child. Its simple explanation will last a lifetime. Autographed copies for sale at: www.everyonediesthebook.com. Also available at Amazon
Mourning Jewelry
We offer a way to memorialize your loved one or treasured pet with a piece of handmade jewelry. When people comment on it and the wearer can say for example “I received this when my mother died” which opens the conversation about this loss. All our jewelry is made with semi-precious stones and beads, vintage beads, and pearls. You can choose between earrings or bracelets and the color family. Learn More
