This is the job that never ends, yes it goes on and on my friend…I started doing it not knowing what it was and I’ll continue doing it forever just because…. This is the job that never ends…. (taken from ” This is the song that never ends ” off of Lambchop’s Sing Along by Shari Lewis)
Okay, so this is a silly song but the job of caregiving is anything but sillly. It is serious stuff. Life-changing stuff.
I started looking after Mom and Dad years ago when they were still in their own home. Then when things got too overwhelming for them I moved them into a retirement home. Dad died 6 months later. Mom lived another 3 years there with me going over to see her several times a week. Then Mom moved in with me for the next 5 years and at times it was wonderful and other times were absolutely brutal. When things got overwhelming for me I would go down to the basement – the only place she could not hear me and I would scream and scream and cry till hours had gone by and I was cried out. Not long after, Mom was moved into a nursing home much to my dispair. It was the last place on earth I wanted her to go to. BUT… she has been there almost 2 years now and we are both surviving…. just.
Friends, family and others told me things would be much easier with Mom in the nursing home. Looking after her would no longer be a 24 hour job. I would have more time for myself and a lot of the responsibility would be off my shoulders.
Well, it may be true in part but as the song sings, “This is the job that never ends…. Let me explain why I feel this way because some of you may be thinking, ” you are free now, what’s the problem?”
The problem is that once a caregiver, always a caregiver. For example, the other night I woke straight up out of bed to a loud bang. My very first thought was, ” Oh no, Mom has fallen on the way to the bathroom. How am I going to get her up? What if she is hurt?” I was just about to hurl myself out of bed to get to her when light began flashing in my bedroom window and I heard another loud bang. I suddenly realized it was lightening and thunder I was experiencing NOT my mother falling. I was this hypervigilant after her being out of my house for 2 years!!!
Today I was in the post office mailing a large parcel to Mom. I know she only lives a couple of miles from me but with Covid-19 I can’t go in to see her yet. She LOVES a certain kind of cookie and I keep her in stock. I also send her pictures of life around my place and a large print Reader’s Digest and a Our Daily Bread devotional. Other times I am adding tape, or Voltarin, or shampoo or lotion or lined paper and the list goes on and on….
Every time the phone rings my heart is in my throat as I think it might be the nursing home phoning to say she is not well. Every time I go to bed I wonder if I will be awakened in the night with someone telling me Mom has passed away. Just like a computer has programs running all the time in the back ground, thinking about Mom is constantly running in the back of my thoughts just under the surface. Just like the song that never ends, the track of thinking of Mom just keeps going and going….
Covid 19 has thrown some interesting wrenches into things with Mom. When I could see her most days, I could keep a close eye on her health, her belongings, her medications, her emotional health etc. But now that I am at a distance caregiving takes on a whole new life. There are endless calls to the floor to sort out a problem with something that the staff have lost of Mom’s like the feet for her wheelchair, or getting them to check her oxygen because Mom says it is not working properly. Then Mom will tell me one of her meds has changed or been dropped altogether. Then there are numerous calls to try to get in touch with the doctor or resident. Often it is a game of phone tag.
I still take care of all Mom’s banking, her mail, her bills, arranging dental visits, getting everything ready for her income tax, reminding her of family birthdays and holidays ( which often means going out and buying cards and gifts ). And most of all I still talk to her usually 3 times a day on the phone – once in the morning, once in the late afternoon and once just before she goes to bed . ( she says she can’t go to bed and get to sleep without talking to me and saying goodnight and I must say that goes for me too. I especially have to tell her I love her JUST in case she passes away in the night.)
And so it is the job that never ends even with her in a nursing home. I realize that this IS my job. My full time job is to be her main caregiver and that will continue as long as she is alive. And though there is an actual end point when she passes away, the song keeps going perhaps not as a job anymore but as a constant remembering and thinking of her as I try to live without her. That one track in the back of my head will always be there humming along the song of her and me…..and I’ll continue singing it forever just because….