A Small Glimpse of What It's Like Being a Caregiver

Thoughts keep flooding my mind tonight and often the best way to rid myself of them is to write, so even though it’s late and I still have things to do for Mom, I’ve decided to post. Besides that, I said I’d tell you about the life, thoughts, and feelings of a caregiver and what I’m experiencing tonight is a prime example.

I’m exhausted. Every little task that has to be done seems monumental. I’m starving, but really don’t have the energy, even the incentive, to fix something to eat. Every joint and muscle in my body aches and burns, even my hands. I’ve taken my old friend Advil and as much as it helps, it can’t do miracles. It’s well after 11 PM and I’ve taken her vitals and checked her oxygen levels, given her meds, reloaded the pump with a fresh bag of formula and flushed her feeding tube, done her mouth care and Vaselined her lips, and I should be able to tuck her in and kiss her good night. But I can’t. I just checked and she needs to be changed again before I can call it a night. That’s the biggest, and the hardest job of all and the one that takes the biggest toll.

She had both hips broken three years ago and that left her with contracted legs. As a result, she can only be turned on her left side when doing anything for her. She’s a little bit of nothing, no bigger than a wet bar of soap as my dad would say, but has the strength of two men. I remember once having to call 911 when she got mad and sat down in the middle of the bathroom floor (this was before the hips incident when she was still able to walk) and I could not get her up. I’d tried everything, even let her sit there for almost an hour hoping she’d get over her mad spell, but she was glued to that floor and that was that. A very disgruntled paramedic glared at me when he got here and I told him my problem, I’m sure for bothering them with a non-emergency call for which I humbly apologized, then grabbed her under the arms and tugged. He was about 5’11”, muscle-bound, a big guy. And he couldn’t budge her. His partner arrived about that time and the big guy sheepishly asked him to help. They brought her to her feet, the partner ran and got my computer chair so they could roll her to the recliner, then down the hall they went with her yelling at the top of her lungs and ordering them out of her house. Needless to say, I laughed. They got her to the recliner, the big guy sat her in it, then said to me, “Please tell me you have help with her.” His last words as they went out the door were, “Good luck. I’ll be praying for you.” Now he understood.

It’s not quite that bad now because she’s bedridden, and you would think at my mercy. Don’t kid yourself. She can turn herself into a lump of lead at will. Dementia seems to arm them with superhuman strength and the strength she possesses, especially considering her fragile health, is amazing. And back-breaking.

Changing her is her least favorite thing and she resists with all her might each and every time. I try to turn up her towards me and she tries to make sure I don’t. The only time there is a chance of that not happening is when her Seroquel has put her into such a deep sleep she really isn’t aware of what I’m doing. That’s what I’m waiting for now.

I’ve had help with her a total of three hours in the last seven days, and seeing to every bath and pants change has worn me down. Two prospective aides came for a meet and greet yesterday, another one today. One of them seems very nice and if she accepts the job, she will probably start Tuesday. On, my, that’s a long way off.

I kissed her as I was pulling her up in bed this morning. “Oh, I love you, Honey.”, she said, almost crying. I told her I loved her, too. “I want you, Honey.”, came next. I kissed her again and told her I wanted her, too, forever and ever, and that was how we’d be, together forever and ever. “All right.”, she said. Then she was fine.

You better bet I’ll find the strength to make it until Tuesday.

Till next time,
Sharon

The Flip Side of Yesterday's Rant

Well, just like I knew I would, I feel the need to say something in defense of some of the aides I ranted about in yesterday’s post. I do it every time. When I say something bluntly or in anger, I always later feel the other person deserves a little understanding because many times there are reasons for most people’s bad behavior. Notice I said most. So, not in their defense, but to give what I think is a fair assessment of the circumstances that may explain some of their behavior, I offer this appeasement.

I also don’t want to give the impression that we’ve not had good aides over the years. We have. There have been some who were wonderful, dedicated caregivers that worked along side me and helped both Mom and me through difficult times. Those aides became like members of the family and I still smile when I think about them. Each and every one of them left because of changes in their lives, not because I asked them to. Three of them went on to bigger and better things and even though I hated losing them, I was proud and happy of what they accomplished. Two of them still call occasionally to say hello and get updates on Mom’s condition. That kind of relationship is what I hope for each and every time a new aide walks through the door. Unfortunately, that hasn’t been the case in a long, long time.

I think one reason the quality of women attracted to the field seems to have changed so is that times are so financially difficult now and people are desperately searching for ways to make a living. Elder care is big business here and there’s never a lack of patients, so a lot of folks gravitate to medically-related fields whether they have a genuine interest or the necessary skills for it or not. I’ve found that most of the problem aides have been single moms trying to feed their children. If they do have a man at home, he doesn’t hold down a job, or he has drug or alcohol problems, sometimes both. Because I’m a sympathetic and empathetic person who has a genuine interest in people, it doesn’t take long before they’re telling me about their lives, their loves, their troubles, their hopes, and it’s almost always the same story. Some of them can stretch a dime further than you and I could ever think of. Others have absolutely no concept of budgeting, or of spending their money on necessities first and then buying the good stuff if anything is left. They’ll complain about not making their bills, and then spend from seven to ten dollars for their lunch. I know. I’ve seen the receipts. But it’s how they were raised, or not raised, so the price of lunch, or anything else for that matter, is not an issue.

What always surprises me is how little they know about cleanliness or how to take care of things. For instance, the garbage disposal. The fact that you really should run water through as you’re using one often comes as a total surprise. One aide was with us for eight months and drove me absolutely insane every working day of those eight months. I actually dreaded Mondays because I knew what I would be for over the next five days. So why did I let her stay that long? Because I felt sorry for her and always felt she had and would have a difficult time being in a place where people would accept her and be good to her. She was 51 years old, mentally and emotionally immature, and had no concept of the world outside of her own. I tried almost every day of those eight months to teach her how to operate the microwave. I had to for fear that if I left her to do it on her own, she’d melt it off the wall. She never learned because she couldn’t remember what she’d been shown the day before, or the day before that. And she went out and bought herself a pressure cooker! Run for the hills! She bit her fingernails and cuticles down to the point of bleeding because it was all she knew how to do. So, like a good mother, I taught her how to file her nails, which took three days, and explained how to care for cuticles. She worked on those hands every spare minute she had and was so proud when they started looking better. She was loud and destructive without meaning to be and I had to watch her like a hawk. She had a definite learning disability, and her vision was so bad that she shouldn’t have been driving so I always had to check Mom over for anything she missed while bathing her. I couldn’t let her feed Mom because she shoveled the food in so fast Mom would gag. And she was always glued to my side. I couldn’t have a moment without her. Lordy, could she talk. I visited the bathroom often just for a moment of peace and quiet.

She was pitiful, a lost soul who was a royal pain in the neck. But she had a big heart and tried so very hard to please, plus she was good to Mom. Because I could see that, and because I sympathized with her so, I let her stay on. But I never left her alone with Mom for more than a second because I knew I could never trust what she’d do in a case of an emergency, or what she might do that would cause an emergency. I say that because once when I was gagging on a pill that went down the wrong way, she told me not to worry because if I passed out, she’d give me a “trach”! Man, did I swallow that pill fast. I think it was the gulp that did it. When I asked her what on God’s earth would even make her think of such a thing and had she been taught how to do it, she said no, but she’d seen it done. That’s when she told me about her years of experience working in hospitals, both emergency and intensive care! Oh, my God! So why did she leave? Are you ready for this? Mom went into the hospital and she committed to a new patient the very next morning because it would cost her money not to and she couldn’t have that. Other aides had taken on temporary patients when Mom was hospitalized but she didn’t think of that. After eight months of aggravation, she bailed at the first sign of trouble. I thanked my lucky stars because I was out of it without having to hurt her feelings…and while Mom and I were still in one piece.

So maybe I bring about a lot of my own problems with aides because I feel sorry for them, or put up with too much for too long, or brag on them too much when they’re still in the try-hard stage, or allow them to get too comfortable. That’s hard for me not to do because they’re in our home every day and I don’t want people to feel uncomfortable here. But all the times I’ve put up with too much simply because of this being-nice-to-people thing of mine doesn’t excuse the ones who really were mean-spirited, or lazy, or dirty, or dishonest, or disrespectful, or had no compassion, or who were expert cons. As in all fields, there are the good and the bad. But this breed of bad should be weeded out because they are going into homes during a very difficult and vulnerable time in someone’s life. When proven complaints are waged against them by a reliable source, they shouldn’t be sent on to new patients. But they are. That needs to change. Enough said.

I won’t be posting for a day or two because I have to devote the few minutes of spare time like the ones I’ve spent on my posts to my other Internet project. Sounds like I know what I’m talking about, doesn’t it? I don’t. Pray for me.

Till next time,
Sharon