Following the post, Fatigue…in need of respite, I am happy to report I have received help and may have more soon.
LESSON for those of you ‘learning’ your way through your caregiving journey: ask for help! No one knows you need it if you do not ask.
It can be total chaos, yes, such a ‘downer’ when we are overwhelmed by caregiver tasks…after one year or ten years, it makes no difference. At times I truly wonder if despondency is around the corner. What will happen when I don’t care anymore? I know now that I was ‘that’ close! (I had no energy to write my daily number of words…and that is serious!)
Sometimes I feel like I, alone, am now running my own private long-term care home with private, personal care for My Love. Not only am I giving 24/7 care, without normal sleep, I cannot always find short periods of respite in a day.
I am the nurse sitting beside him as he takes his 20 pills a day, reminding him the pills go in his mouth…after I show him where his mouth is… and helping him recall how to swallow the water, while keeping him from spitting his pills into the glass.
I schedule changing his disposable underwear in the morning, and then check throughout the day. I am currently his daily shower and shave attendant, plus his personal dresser, physcially holding his clothes so he can put them on and helping with his shoes. I must be with him during these tasks.
I am the cook who prepares special meals of soft foods, and cuts them as if for a toddler. I wash and put dishes away. I am the online grocery shopper, coupling a pickup with a run to the pharmacy for his pills. I definitely have been his taxi driver for nearly six years. I am the housekeeper, often cleaning two bathrooms several times a day- because he doesn’t remember which is his, and he ‘misses’ in both of them.
He does not leave my side. If I walk down the hall, he follows me, even to the kitchen, bathroom or shower to be reassured where I am. I seldom have time for the dusting and vacuuming, or doing laundry…but no longer is this a priority. All this from one person, increasing over the last ten years!
My life? I have none. Beyond my two daily naps, there is little time to do the things that others might consider essential.
A couple months ago, not long after getting our #2 Covid vaccinations, after nineteen months of the pandemic, being isolated, locked-down and house bound, I felt I had reached my limit. My limit of being a caregiver doing things way beyond what one person should have to do for another for nearly ten years. I was beyond thinking, but trying to keep up with what basics had to be done: feeding, sleeping. Unfortunately, I have lived and understand that undesirable ‘modern proverb,’ “two living in the shoes of one, 24/7” too long.
When someone cares…
What a difference a phone call makes! What a transformation someone who cares can make in the life of a nearly depressed caregiver!
During the same nineteen months of the pandemic, one of the attendants from My Love’s day program called each and every week—to check on our status. During the call of week 71, the lady must have heard my anxiety, my tired voice, my exhausted choice of words. Within hours of that call, she called me back and asked if she could try to get me help. I assured her the provincial help was coming, albeit slowly. She took over.
The next thing I knew, there was a Community paramedic team in our home, assessing My Love’s health and our needs. Within days, the community paramedic came to our home with the provincial coordinator, so together they could hear our needs and express what should be done and what was possible at the time.
I was the blessed beneficiary of caring, dynamo personalities in action!
Grateful for the help…
Yes! What a difference all those phone calls made in our lives. How humbled I felt knowing someone truly cared, how much better I felt when someone who could help came to our home to listen. Within days, even I could feel the heavy weights lifting from my shoulders as visits by those who would come to assist were being scheduled
We now have someone come shower and dress and shave My Love three times a week. We have had calls to help me with understanding his swallowing difficulties and his nutritional needs for when I have to cut up his meals, and when I may have to blend the foods. And, although I had previously spoken with the pharmacist, I now learned which foods I could put crushed pills with, as well as which pills I could crush and which I could not administer in/with another food.
At the same time, the day programs have opened up to enable a reduced number of ‘club members’ to return for daily care, to spend a couple hours in a safe environment while the caregiver has time to do what must be done away from the home, without including the care of the loved one. I am so grateful for the opportunity to have time for my own obligations during that short period each week.
What a difference it made to have someone who recognized I had reached my personal tipping point and now was beyond limits I originally thought I could master; someone who was able to get the ball rolling, to start getting things to happen for me, a truly overwhlemed caregiver. I owe the people who got involved so much gratitude. I am so grateful, and appreciative for the dedication of the entire lineup whose help was directed my way.
Thank you for caring.
Caregiver support to the rescue (c) 2021 Judith Allen Shone
Flowers from (c) Tatiana Mitrushova, see her shop @Mitrushova on Etsy