Caregiver support to the rescue!

Caregiver support to the rescue!

Caregiving takes a toll…

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

Fatigued, in need of respite

Fatigued, in need of respite

Is it the heat? or maybe the humidity?

I sure notice how tired I am this month. Is it because summer is actually here and sunshine is pouring in our windows, baking us as it does each year? Our AC is working hard, the dehumidifier has to be emptied often and the three fans in the room are at full speed. But even with my protector screen in front of the southern window, the heat tends to make me sick.

I won’t open the door to let in the breeze because nothing filters out the humidity! My Love’s COPD cannot handle the humidity. My body cannot handle the humidity…on this one thing we do agree!

So what do I do? In the afternoon, if I see the tree tops swaying and realize there might be a small breeze blowing, when the sun is on the other side of the building, I open the door a crack, daring the humidity to come in, “…what point to run a dehumidifier with the door open?” I ask.

My Love reaches for his puffer. I know effects won’t last and he’ll feel a need for another puff soon. I step out onto the balcony and shut the door behind me. It is nice to feel the wind brush my arms, and notice my ”’much too long’ hair blowing around….to realize it is summer…the second one since the pandemic began. We have been inside for so long!

I have just spoken with the head of the day program where My Love attended 16 months ago. They anticipate possibly being able to open, on a limited-participant-each-day basis. Oh, how nice to hear that. It had been such a nice few hours for me each week. She asked what I thought about starting again…after our second vaccines this month.

How different it is now than those months ago. How changed I am, and My Love is. How much older I feel having been isolated so long. I consider how much My Love’s memory has lapsed since we left the program for lockdowns. I consider how much functionality his body has lost, how much more I must do for him, think for him, say for him—he is never alone. All the time now I am two people, multi-tasking, double-track thinking, perhaps? Will he fit in with the day program folks now? I wonder.

He doesn’t register anything about the virus, he hates the mask on his face and has no idea why he must wear one. The one criteria of concern is the need for social distancing. It will have no meaning. I seriously doubt he could consciously understand the need to stay at 2m from someone else. He has no clue about the virus, even when I mention the ‘big sickness.’ He does not remember my words, let alone know what they mean. Masks and distancing are off the charts of understanding.

But, I definitely need respite. I am aging faster than I would have believed possible. I feel old. Much older than the sixteen months that have passed since we have been isolated, like captives, in our small apartment. I need the stimulation of other people. I know I need some grooming, some TLC time for me.

Without a doubt, I need to be refreshed, recharged, repaired, the same as someone focused on driving all day needs a rest, I need to relax with both eyes and both ears, and full mind attuned to something other than my responsibilities toward My Love’s every need. I have ‘grabbed the bull by the horns and moved forward,’ long enough without help.

Our second vaccines were last week. We had relatively little reactions, and this week it seems we are OK. I am calling the services we had before the pandemic halted our lives to see if we can get some help for My Love and respite time for me.

Hopefully, the powers that be will acknowledge my request for someone to help with showers and shaving. Someone to talk to him while I go to the basement to do loads of laundry. Hopefully, someone will come and relieve me of continual conversation…ultimately with myself…yet provides a closeness that stimulates his mind. My wish is that someone else can keep him from wandering off to find secret spots: to hide his puffers, to deposit his pills he’s put in his pockets, to hide his accumulated, folded squares of Kleenex, to remove and hide his Depends without telling me. It is amazing how quickly he can scoot down the short hall, after asking permission to go to the bathroom, and carry on all his clandestine activities in the back rooms….all while I am in the kitchen cooking or washing up. Unfortunately, from there I cannot see or watch him. If I did not know better, I would say he planned his mischief so I would come out and play with him! But alas, he is just ‘doing things without thought’ like many one-year-olds…he has not words to tell me, he just does…that’s his level now in stage seven.

Light at the end of the tunnel is having someone to relieve me while I take a nap; even if they can look through picture books together while I catch up on another of many forgotten chores. I am not young anymore. My next birthday will be my 80th. I understand that having respite might not come from the day program if he can’t meet their criteria. Even though I don’t have the energy to do the many other things I used to do, planned respite hours from somewhere just might allow me again to be a rested caregiver, to carry on from one respite period to the next.

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I know exhaustion happens to us all. Take note. Take action. That’s the plan.

Do you have your plan? Visit our blogsite page Respite Ideas. Time to make your plan.

Fatigued, in need of respite. (c) 2021 Judith Allen Shone