Friday, 9 August 2019

THE CAREGIVING CHALLENGE THAT NO ONE TALKS ABOUT


There’s a huge upheaval that many caregivers experience but 

hardly never talk about. It’s when caregivers leave their own 

families in order to move in with aging parents. Or, they move 

parents into the family home. Often, these decisions to move 

are made quickly as the result of some crisis or other. And then, 

as the dust settles, the monumental changes wrought by 

disrupting family dynamics begin to dawn.





story:

Last year I started caring for my Mom and it has been hard. 

Really hard. I had to quit my job and leave my husband and 

daughter to move in with Mom in Milwaukee—I live in 

Madison. Dad passed five years ago, and he had been Mom’s 

main caregiver since her diagnosis of early-onset Alzheimer’s. 

So after his passing, there was no one else to look after Mom. I 

felt that I had no choice but to come and live here. I know now 

how hard it must have been for my dad. Some nights if Mom is 

calm, I sit looking at our family photos and I just cry. I wish that 

I would have helped Dad more when he was still alive. Mom’s 

needs are slowly becoming more than I can handle. It’s hard for 

her to swallow now, which scares me, and of course she doesn’t 

know who I am. Sometimes she becomes very agitated, and 

that’s the worst.

Mom’s apartment is on the fifth floor of a nice brownstone in 
downtown Milwaukee. There’s a large picture window above the kitchen sink, and one of my pleasures is looking at the sun sparkling on the dew there in the morning. What I want to tell you about is what I see through the window in the evenings. There’s an apartment below us, and I have a view into their kitchen. Not into their kitchen really, but into their sink. I can see a woman’s hands peeling avocados or potatoes there. The thing is, she’s really good at peeling. She’s not very fast, but she is so deliberate and so . . . skillful. Her hands can peel an avocado without breaking the peel—it falls in a spiral into the sink, and then her knife goes whoosh, whoosh, cutting slices to the pit.
A few months ago, I began to wait and watch for those hands. They comforted me. I looked at my own hands. I thought how strange it was that my hands are here, not in my own home, or shuffling papers on my old desk at work. I take a potato, turning it over under the warm water and rubbing it with my thumbs. With the peeler, I begin to slowly remove a single, snaking peel that falls into the sink. I think, I am feeding my mom and myself with this potato. This is right now, and I am preparing food without which we will not live. Since that night, peeling vegetables has become a form of prayer for me—a prayer to be okay with being in the present with my mom.

Last week I asked readers on my facebook page, The Caregivers Living Room, to tell me about their experience of moving home to accommodate care needs. Here are some replies:

Becky L wrote, “I moved Mom in with us, but I placed her home in a trust so she could sit in her old world from time to time. My son and his young family live in Mom’s home now so when she visits, the little ones make her life a joy! But she sleeps with me at our home because of seizures and falling. None of it has been easy, though.”

Brian J wrote: “When I was little, my grandparents moved into a trailer in the back yard to take care of me and my baby sister. It was a good arrangement for all concerned – my folks got free childcare, the grandparents got extra sets of eyes nearby to make sure everything was fine for them.”

Tracy A wrote: “My Mom refused to move in with us, so my husband and I moved in with her. I never imagined that I would be living in the house where I grew up. It’s 50 miles away from our own house and Mom’s place only has one bathroom. But we made it work. My Mom has done so much for my grown children and myself. This is how I will repay her love.”

Cheryl K wrote: “I moved in with my parents in 2009. Two years ago, my Mom and I bought a house together and moved up to the north Georgia mountains. My Mom was 85 and had lived in central Florida since 1968, in the same house for 40 years. I figured I’d have to wait until after she died, but one day, she just said, “Let’s go!”  We’re in a small town with a community hospital, but our county will Life Flight us out for free if we need advanced, emergency care. And that was the final hurdle for me. No regrets.”

Chris K wrote: “I left the big city with modern conveniences to move into my Mom’s house in a very small and unfriendly depressed, poor farming town with no jobs, no friends, nothing to do and now no major hospital within an hour from us. I’ve been here almost seven years and I’m really stuggling with depression, loneliness and anxiety from helping her with dementia issues. And no help from 3 siblings, only criticism over what I’m NOT doing and that I’m spending their inheritances! God help me!”

Dawn S wrote: “We sold our house and their house to buy a new one that worked for everyone (my parents, my husband, me and our three kids). I’ll be honest, we lost a lot of square footage for our family of five even though the house overall is bigger than our old home. Nine months later, my Mom died. My Dad is almost 93 and is still living with us.”

Jan T wrote: “For the first two years, my Mom lived with us and we moved with her into a bigger house at her request. My own house is still there, but it is musty and neglected.”

Please leave a comment if your family life has been upended by moving in order to give care.


3 comments:

Anonymous said...

When my dad was dying he told me to take care of my mom. I promised to do my best. After my mom had a heart attack I sold almost everything I owned and moved to her house to care for her. It’s been five years. She is struggling but still very much alive. I not only gave up material things but my social life as well. I do get out to therapy once a week and to a couple of gatherings a month for dinner but no relationships to just sit and chat over coffee or walk by the river or go shopping. I don’t invite friends to the house since my mom watches TV all day long at a volume one can hear down the street. Get someone to come sit with her you may say? Oh no, no one else can come sit with her unless the house is spotless and I prepare some kind of food for the “guest.” I love my mom and I will do as I promised but I have given up some of my retirement time to do so. I am tired and weary. I miss my friends. Caregiving is the hardest job I’ve ever had to do.

Diana S.

Anonymous said...

caregivers dntjust come in to care for aging parents we also do it from birth dnt forget us who care for our special needs children.

The Caregivers' Living Room said...

I am so sorry that it's so hard - you are completely immersed in caring and it sounds like there is little time or energy for much else. I hope you are able to find support online - other caregivers understand! Facebook groups are wonderful (I run one called The Caregivers' Living Room) but The Caregiver Space group is also fantastic. So is caregiving.com - that site has so much support! I am just so sorry it's so hard. And yes, being the Mom of a child with severe disabilities myself, I never forget our tribe either! We are all in this together.