S4E2: What Happens to a Relationship when You Become a Caregiver?

Learn how becoming a caregiver for a partner changes the relationship

Do the dynamics of a romantic relationship change when you have to take care of your partner? Michael Porter talks about how he had to learn how to let the relationship with his wife change in the ways that it needed to. Michael joins us in the second of our series of interviews about caring for a spouse with dementing illness.

What Does Someone with Dementia Want?

Below is an anonymous reading about what someone with dementia would want if they could tell you.

If I Get Dementia - Anonymous

●  If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
●  If I get dementia, don’t argue with me about what is true for me versus what is true for you.
●  If I get dementia, and I am not sure who you are, do not take it personally. My timeline is confusing to me.
●  If I get dementia, and can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself.
●  If I get dementia, and I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded.
●  If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
●  If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
●  If I get dementia, ask me to tell you a story from my past.
●  If I get dementia, and I become agitated, take the time to figure out what is bothering me.
●  If I get dementia, treat me the way that you would want to be treated.
●  If I get dementia, make sure that there are plenty of snacks for me in the house. Even know if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.
●  If I get dementia, don’t talk about me as if I’m not in the room.
●  If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.
●  If I get dementia, and I live in a dementia care community, please visit me often.
●  If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
●  If I get dementia, make sure I always have my favorite music playing within earshot.
●  If I get dementia, and I like to pick up items and carry them around, help me return those items to their original place.
●  If I get dementia, don’t exclude me from parties and family gatherings.
●  If I get dementia, know that I still like receiving hugs or handshakes.
●  If I get dementia, remember that I am still the person you know and love.”

Related Episodes:

• 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?
• S3E48: Frontotemporal Dementia Part 2 – How FTD is Managed
• Listen also to our 3rd-segment interviews with Claire Luckey as she took care of her husband with a glioblastoma brain tumor until his death. She discussed many of the similar challenges, especially as a millennial:
  • S3E8: Getting Creative with a Theme Funeral
  • S3E10: What are Military Funeral Honors?
  • S3E14: 15 Ways to Help a Grieving Child

Why Do We Wear Black at Funerals?

Charlie shared the very interesting history of the tradition of wearing black for funerals, starting from the 6th century. Be sure to listen to some of the surprising origins!

References:

• Why We Wear Black to Mourn – The Atlantic
• The iPhone at the Deathbed – The New York Times (nytimes.com)

Resources:

• A guide to religious funeral traditions  | Empathy
• Colours of mourning around the world | Craven Funeral Directors | Funeral Director Merseyside, Cheshire, Liverpool (cravens-funerals.com)
• What to Wear to a Funeral (Not Black) – Ideas for Men & Women | Blog | Stark Funeral Professionals of YpsilantiDementia Patients and Grief – Pathways Home Health and Hospice (pathwayshealth.org)
• Dementia Patients and Grief – Pathways Home Health and Hospice (pathwayshealth.org)
• www.alzheimers.gov Explore the Alzheimers.gov website for information and resources on Alzheimer’s and related dementias from across the federal government.
• Family Caregiver Alliance 800-445-8106 | info@caregiver.org | www.caregiver.org
• NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center
  • 800-438-4380 | adear@nia.nih.gov | www.nia.nih.gov/alzheimers
  • The NIA ADEAR Center offers information and free print publications about Alzheimer’s and related dementias for families, caregivers, and health professionals. ADEAR Center staff answer telephone, email, and written requests and make referrals to local and national resources.

Recipe of the Week

This fudge recipe, attributed to Maime Eisenhower – stands out as being less persnickety than most fudge. It calls for for semisweet chocolate morsels, German’s sweet chocolate, marshmallow cream, white sugar, salt, butter, canned evaporated milk and nuts. Head to Southern Living for the recipe and how-to video.

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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.

From Everyone Dies:

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

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