Ongoing care for the caregiver must not be overlooked.
It is of utmost importance to stay healthy -- mentally and physically -- in order to stay safe and efficient.
So. If you’ve ever asked for advise on how to manage a situation, does the advise ever come close to what you really experienced? For any major undertaking in your life, how prepared were you for the actual outcome?
Well, I have to say, If you fall into the role of a caregiver, as I have, there is so much that you can never know beforehand, or prepare for. This is a day-to-day experience that will test your fortitude every step of the way. The stress is immeasurable, and your health can diminish very quickly because of it. Who offers care for the caregiver?
My mom came straight home from the hospital after her stroke. There was not much a doctor could do after the event, except to stay in touch if there were any obvious changes.
In the beginning, it was overwhelming, to say the least, just to acknowledge that she may die within six weeks’ time. It was also stressful to prepare her room with a new bed, a changing station, a suitable wheelchair, and also to make arrangements for Hospice .
So, I am dealing with the shock of her illness, but also the stress of figuring out, “now what?”.
The physical care was an ongoing learning process, but we also had to find all her legal papers to manage the estate, and then to solemnly discuss the end-of-life procedures, and to see that her wishes were made clear.
Well, anyway, during those first few months, there were many well-wishers, and curious friends, who offered condolences, and a lot of advise.
“I know a good care-taker service.” . . . “Try this nursing home…”, “Get her into therapy right now.”
There was also, “You need to get away for a week” . . . “Let someone else in the family take care of her” . . . “The stress is going to kill you”.
After sorting through all the advise, the tough decision was made to keep her at home. I would continue to watch over her and manage her care. I listened to all these people with suggestions, but honestly, much of this was adding to my stress.
I read many support pamphlets on how to manage the stress of caregiving.
The main issues addressed regarding ongoing care for the caregiver are:
Take care of yourself first. 1. Eat well. 2. Exercise 3. Get physical help when needed. 4. Get emotional support when needed.
Well, this is common sense, and a generic mantra to try to help you through this process. I appreciate this, but I came to realize there is more to managing the stress than just this advise. I needed a different kind of help, and this kind of “advise” was not making my frustrations go away.
I started to feel sorry for myself, and it made me resentful.
“You have no idea what I am going through!”, I would yell silently to imaginary listeners. “Don’t pretend to sympathize because unless you are a caregiver yourself, you can’t even imagine the amount of work this is.”
I sat in this pile of pity for awhile, and some days, I drift back to it… most days I am pretty exhausted, but there are always lessons in life.
As a caregiver, I must take care of my physical health, but my mental health is the one that takes the most work.
Here is what I came to realize:
My friend Bonnie took care of her husband for nine years as he battled with cancer.
She was also struggling with arthritis which twisted her hands, and caused great pain in her feet.
They had no children, but had two huge rottweilers that they loved and gave special permissions in the household. They had a beautiful relationship, and even as they fought the diseases that were destroying their bodies, they took care of each other.
The love they shared was inspirational, and has proven to be a great lesson for me in my life.
Through the process of chemotherapy and radiation treatments, Bonnie watched her husband respond with nausea and pain, endlessly altering between feeling well enough to eat, or not feeling well enough to even sit up in bed.
With the help of Hospice, she nursed him every minute of every day. And you know what? Never once did I hear her complain. Never once did she say “life was unfair”, or “why did this happen to them?”
Yes, she did have her moments of sorrow. There were times of sobbing and sadness for the fragility of Life, and the many things a person never gets to experience. There were days of laying in bed – the two of them and the dogs—and just being still and treasuring what they shared.
But, the sadness that came to them was not because of the unfairness of the situation. I never heard from either of them, a “self-pity rant” about how difficult life was for them, or how God was punishing them or not hearing their prayers.
She never came to me complaining about the difficulties she had getting up and down the stairs, or changing his clothes and doing endless laundry, or sitting up with him at night when he was sick.
I know she was hurt, angry and frustrated, as we all are as caregivers. She had days of exhaustion and pain.
She, however did not linger in those thoughts of self-pity and anger.
Bonnie loved her husband. She gave him care because she treasured their relationship, and nursed him truly out of her love for him. I did not hear resentment in her voice, nor were there signs of a co-dependency. To me, she is someone to emulate, and serves as my guide during this time with my mom.
This is my life’s journey, and I strive to travel it in gratitude and love.
Bonnie chose her journey. I am choosing mine.