How did you become the family caregiver: Was it really accidental?
The Accidental Family Caregiver
How did we get to this point? Its difficult to trace back. Was it when we brought that first baby home from the hospital? How does one bathe something that tiny without breaking it?
Perhaps it was before that. A friend who was like a brother or a sister needed our help and we were happy to give it?
Maybe it was the abandoned pet that needed us. Or the plant dying for lack of water in the supermarket.
However we came to be the accidental family caregiver…
Here We Are
One year, many years ago, on our daughter’s birthday, Gramma became very sick and was hospitalized. It was Lymphoma cancer that had spread to her stomach and her spleen. Surgery was done to remove her spleen and part of her stomach. The hospital where these surgeries can be done is almost 200 miles away.
Months of chemotherapy started. Thankfully that could be done here. The chemo permanently numbed her finger and toes, stole her hearing and took her hair, but miraculously, she recovered.
During that time, Grandpa did most of the heavy lifting. He kept the house and drove Gramma to appointments. We provided emotional support and occasionally meals.
A Few Years Later
Gramma broke her ankle and was again in the hospital. This time, we noticed that making decisions and processing information was difficult for Grandpa. We also noticed that it was difficult to get Gramma to eat. We stepped up our support.
At the same time, one of our children was struggling with some severe medical and emotional issues. Another of our children was beginning a long struggle with asthma and chronic migraines. Cameron’s job took him out of town 5 days a week, most weeks. One day, I accompanied three different people to five different doctors with two preschoolers that I was babysitting in tow.
Eventually, Grandpa’s diagnosis would be Dementia. Gramma would develop Rheumatoid Arthritis with all the body ravages that go along with it.
Are You the Accidental Caregiver?
I know this story isn’t just about us. Somewhere in this story, you find yourself. You are saying “been there, done that”. We didn’t plan for things to go the way they have in our lives but we have embraced the opportunities to love more deeply as they have come. We aren’t asking for sympathy, we know where YOU are coming from.
Accidentally, We Became Family Caregivers
One very cold, very snowy January day, Gramma called to tell me that she had somehow injured the previously- broken, now-pinned ankle. They lived 40 miles away and the roads were closed. Grandpa’s condition had deteriorated to the point that she was now his caregiver.
The next morning, I drove down, unannounced, to check on them. I found Gramma up doing housework without any sign of the walker she had told me she needed the day before.
It was time to have a hard talk. They had to do something different. Moving to an assisted living apartment, or with one of their children or at least closer to one of their children was all discussed. We are all about making your own choices about your own life so we gave options and waited.
Other children had volunteered, but in February, they had made their plan. They would sell their house and move a house into our back yard.
WAIT! WHAT? NO!
That idea violated the covenants on our property among other problems. I had volunteered adding on a bedroom, bathroom, and sitting room suite to our house. Cameron came home that weekend with another idea. We walked and talked. He measured and I ranted. Finally, he had a plan that was acceptable to all of us. Build them an apartment attached to our garage!
We hired and met with a contractor friend. Gramma drew up the plans and gave away stuff. We got permits and took out loans. Two new septic systems had to be installed in our back yard.
The Accidental Construction Workers
In August, our old garage was hauled off and work began. Our contractor and his assistant worked. We worked. Our children worked. Family came to visit and we told them we couldn’t play, they worked too! Every time I think of all those sacrifices for that one goal, I know just what love looks like.
Two months later, it was not quite finished but it was livable. November shaped up to be a busy, stormy month. So we moved them in three weeks earlier than Gramma planned. The snow started as we stowed the last of the boxes in Gramma’s new shed.
It was the most difficult, most expensive solution, but it was the only one that met all the demands. Every accidental family caregiver gives care differently. Your path is probably different. Perhaps you are giving care to someone who is in a care facility. We hear you.
We Don’t Know What We Are Doing
Grandpa’s condition continued to deteriorate. He had already lost his fine motor skills and very quickly he lost his gross motor skills as well. He spilled things, his walk was a shuffle. Sometimes, he was angry, yelled and cursed. other times, he was quiet and wouldn’t talk. Most of the time, he joked, watched cartoons with our daughter and slept in the chair.
We took turns helping Gramma get him up in the morning, take him for walks and give him showers. She needed help getting him to the doctor, the bathroom and back to bed. Often, we sat with him or brought him to our house so she could have breaks.
Help From the Pros
And then we were feeding him. In August, Gramma decided she couldn’t do it anymore and admitted Grandpa to a nursing care facility. We still went in at mealtime and fed him.
Within 3 days Gramma learned;
- she had been given the wrong financial information when she sold her house
- that meant she couldn’t afford the facility
- there are agencies for an in-between solution
So we brought Grandpa back home. A very intuitive physician’s assistant had pointed us toward Hospice Services. Suddenly, we had nurses and a certified nursing assistant to help.
They taught us to lift safely (for us and him). Wonderful people were there to help us to know what to expect next and how to work with it. What a feeling to not be in the dark anymore. We learned so much from them.
Hospice came along just in time because suddenly Grandpa couldn’t walk. Or talk. He stopped eating and then lost consciousness.
In November, 1 year after moving them into their house, we sat with him in the dark hours of the night while he passed from this life to the next. And then we cried.
We Just Do Our Best; Everyday
Everyone grieves differently. Gramma’s grief (is still) mostly anger and complaints. We have learned that knowing how your person grieves helps.
Ten years, six surgeries, and countless arguments later, Gramma still lives in the apartment next to our garage. Her arthritis is worse and it is still difficult to get her to eat nutritional meals but we try daily.
Our Accidental Family Caregiver Role Hasn’t Changed
Both Cameron’s and my health has made our career goals change. We started Montana Bowl of Cherries and Cam’s Custom Cabinets & Woodworking so that we can try to balance our accidental family caregiving with our career goals.
We have learned a lot of lessons over the years and we are still learning every day because we really don’t know what we are doing.
Some things we know:
- Prioritize – place needs over wants and who needs help most. Have a plan B…or C
- Feed People – nutritious, safe food blesses everyone-the patients and the caregivers. Nutritious food is the only way to get folks with eating disorders to eat anything. Feeding people is why the garden and the chickens are such an important aspect of our team.
- Emotional Support System – important to the older person stuck in their home as well as the caregiver.
- Find Professional Help – if there is help in our little corner of the world, there has to be in your area too. What is available for in-patient and in-home care for you? Make sure to ask the right professional for financial advice.
- Figure Out the Finances – How do you juggle career and caregiving? We all have different methods that work.
- Laugh and Love Every Day – No one gets out of this life alive. It’s what we do with this life that counts.
You’ve got this Accidental Family Caregiver-we know you do!