by, Renee Wood

To start, I’d like to thank those who truly went out of their way (sacrificed) to help me and Floris anyway you could. You know who you are and our appreciation – so please don’t take what I say here for yourself. There are good people that make great efforts to ease the struggle, and it’s recognized and appreciated. People in general must realize though that these periodic voluntary efforts are like being on life support, it’s great and necessary to get through the short-term, but doesn’t solve the problem of needing assistance with toileting, bathing, eating and getting in and out of bed on a daily basis, for the long-term. For that we need bodies to help us. Bodies with souls who see people with disabilities and the elderly as having value. The vast majority of Americans would say this is true, but their lack of action speaks loudly of our true value in American society.

Some people may think I write about personal struggles for attention, or to get sympathy, but I assure you it’s to draw attention to the issue as a whole. The best way I know to do that is through personal stories. I know several people who guarded their privacy and died as a result. Maybe they thought it would not have mattered anyway, they would have had to bare their souls, not get what they needed in response, and died anyway. The fear of the pain of rejection from the human race that said their life didn’t matter enough to get a response to save it, may have been more difficult to face, than just quietly accepting their fate. However, I don’t have such fear of rejection of my life, for if I don’t disclose my needs and die as a result, then that’s on me. But if I humble myself and disclose my needs to maintain my life and the human race doesn’t respond, than God/fate/karma will judge accordingly.

This week I botched, or copped-out, or maybe just looking for a faster way, of a suicide attempt. From 8 pm Wednesday until 8pm Saturday I wouldn’t eat or drink – well a few beers at night, and one tiny bite of bread, to get my medicine down. By day 2 my muscles in my upper arms started to ache a little, and my chest hurt a little, but that did not deter me for I was prepared for that – after all the goal was to die. Did I actually WANT to die? No. But more than that, I don’t want to go into a facility, or see my 79 year old husband deteriorate more, or die due to caring for me because he has no choice right now.

Why suicide? On Wednesday, March 2, 2022, my husband, Floris, was talking to Area Office on Aging about care giver counseling for him, and respite care for me. Being my own legal guardian and representative, he had no right to do this, especially where I could hear and trapped in bed (it was before my attendant was scheduled to come) and frustrated not being permitted to speak about respite myself. For him to even attempt to set-up respite FOR me is a violation of my dignity as an independent person, as well as my rights. I’m perfectly capable of calling AOA myself to set up care, which I let the person on the phone know as soon as my attendant came and got me out of bed. I was furious (even in passionate situations I am not known for showing anger) and don’t think the woman on the phone will forget my few choice words anytime soon! She probably thinks I’m a bitch and that’s why Floris needs counseling. Well I don’t care because Floris told her from the start that I was smart and in charge of myself. When the woman was made aware of this the appropriate thing to do would be to say I need to talk with your wife to set that up.

As it turns out, the only respite they provide for someone not on a Waiver or Medicare, is someone to “sit with” the person a couple hours while the care giver gets a break, but not perform any PCA services. Like I need someone to wipe my ass, not sit and eye-ball me! If anyone did come to “sit with” me, I was lying in bed listening to this bull-shit, and planning to head out the back door down to the bar for a couple hours if anyone dared show-up just to eyeball me. Let them eyeball Floris for a couple hours because that’s not what I need. After I go pee, I can be alone 6 to 8 hours during the day. Floris knows this, but it’s like HE needs them because I guarantee you, I’d be on a zoom meeting, or at the corner bar, while their paid to eyeball 👀 me (me, who won’t be engaging with them anyway, since they can’t do anything I actually NEED), and he’ll be chewing their ear off with a story from the past, or the latest movie he watched. He even admits he is lonely for conversation. One can only listen to the same stories for so many times over 22 years.

As far as care giver counseling, he has the right to do what’s best for him, but I have the right to my feelings about it, and choices in response. When a family member needs Al-Anon, that means there’s someone in the family with a problem with alcohol and it’s causing angst in the family, and a family member needs help coping with the angst caused by the person dealing with Alcoholism. Well, care giver counseling, viewed from the person needing the care, means that they (the person needing care), is causing a situation that is difficult at times, and the family member providing most, or some of the care, needs help coping with it. In these groups, sympathies go out to the caregiver. What about the person receiving the care? And what about if the person receiving care, is also giving care to the care giver? As a caregiver, if you think you need counseling, for God sake, don’t do it in front of the person you’re caring for. At least be discrete about it in front of them.

In those 72 hours that I quit eating, I purposely did not remind Floris to take his medication three times a day. Though I told him ahead that I wasn’t going to remind him to take his medication anymore, I ended up giving him a hint, if I saw that he was going to miss twice because I got worried and felt guilty, since I know he kind of depends on me for that reminder, and he truly appreciates it. Even though a month ago I bought him a $65 medication squawk box that also flashes, to remind him, do you know how many doses he would miss if I didn’t remind him? Since he has significant hearing loss (even with the flashes, if it’s not in the same room with him, it’s useless), the medication squawk box (that I stubbornly listened to for a half hour that it goes for because I refused to remind him) only serves to remind me, to remind him.

There’s other health issues I monitor for him, and sometimes it’s hard and frustrating because he doesn’t easily cooperate, and then he has problems because he wouldn’t do what initially needed to be done, to secure his health. Although frustrating and tiring at times, I don’t feel the need to get counseled by someone who can only give me a pat on the back and tell me what a wonderful thing I am doing. That just makes me wanna puke!

Yet, because his speech is not impaired, and he still stands upright kinda, he’s seen as my caregiver. I’d just like to know what the fuc& am I?! Not that I need counseling, but I do want his counselor to know that I am not just an annoying pimple on his ass that he can’t rid himself of, but also equally take care of him. I don’t feel the need for “caregiver counseling” (even if they recognized what I do for him as caregiving) since I do it because I want to, and out of love. If it were psychologically damaging, which I don’t understand that aspect, so I can’t say really what I would do, but feel if someone who can’t help it, and is causing so called “mental health” problems (I know what mental illness is, just not sure about what “mental health” means) if I got frustrated by it, I’d probably just grouse about it with a friend, not someone paid to listen, but not able to assist me with helping me with the hands on care of my loved one! To me, someone being paid to listen and sympathize, would be a waste of my time and money that could go towards caring for my loved one.

Since my need for care, can’t be filled by finding someone to assist, this is causing the circumstance for him to seek counseling. It’s my responsibility to not cause harm to someone I love. It’s no one’s fault that I need the care, but since I am not able to leave him because I depend on the care that he gives (loving him is a given – it’s not about that) besides, me leaving him is not what he would want anyway, and there’s just no way in hell I’m going to a facility (Floris wouldn’t want that for me either), so I couldn’t/can’t see another way to stop his drudgery except taking myself out. Although he would never admit to me that I’m causing him drudgery in his old age, I know in my heart, after he grieved for a time, he’d feel a sense of relief.

I don’t believe in assisted suicide or euthanasia, so if an individual can’t find a way to kill themselves, by themselves, then they’re just SOL. This is because suicide is a personal, solitary act, no one else should be drawn into that act, especially when the person has no one to care for their daily needs and that’s why they are acting to end their life in desperation. One assisting the person to commit suicide, rather than assisting that individual with daily care, would be an abominable act for a civil society. But are we a civil society anymore? Ask people under the age of 40 what “sacrifice” is. Most will get angered at the appalling archaic concept. Yet, they are the first to expect help in their hour of need because they’ve been taught in public schools they come first. If everyone is taught that they come first, then no one would help anyone. In order to help another it takes commitment and sacrifice. One has to give-up some of their time, energy, plans and a piece of their heart to help someone with a greater need than one’s own need. The rewards are not always obvious and are completely obfuscated when one expects reciprocity for their efforts. Making “caregiving” into a for-profit business was the worst idea. How much is fair to pay someone to wipe someone else’s butt? No, seriously, think about the question. It could take anywhere from 3 minutes to 20 minutes to wipe a butt depending on the need of the individual – so how much money would that cost?

Truth is you can’t pay anyone enough to wipe a butt. That willingness and generosity has to come from within, empathizing with another’s situation. Empathy is contradictory to “I come first”, and is in short supply today. In other words, any amount of pay is only a stipend of appreciation, and will never solve the issue of needing more caregivers. Throwing money at a person living on the street, is easier than inviting them to your home, but it doesn’t solve their issues. It shifts it off to someone else, while making you feel like you did something. Again, money alone, will never solve the caregiver issue, creating a more empathetic society, with people freely willing to give of themselves with what will always be seen as “little pay” (everyone deserves, and should get a living wage with benefits, but that won’t be enough if the caregiver doesn’t have empathy), is the only organic way to solve the caregiver shortage. However, this won’t be soon enough to help my situation, which starts tomorrow.

Tomorrow I will have no caregivers for a week, and then I am down to one from two, which I need four to fill all the shifts. The second, who agreed to fill-in some, for my person who starts her vacation tomorrow (wasn’t going to be nearly enough, but would help at least), resigned this morning with no 2 week notice. I’ve tried every way I know, starting 3 weeks ago, to get someone to do cover this week. My SSA says she’ll send me names but hasn’t. After researching on Saturday and discovering it might take 3 weeks or longer to starve myself to death – this obviously wasn’t going to work in time so had to give up. Now I am stuck with nothing. Those three days I was hungry, tired, achy and angry at the situation, did I wallow in bed? No, I got up, washed my face and continued to fight for equality for people with disabilities. In all my meetings no one knew what I was going through. It is possible to go through your own pain and brokenness and fight for others. It’s called empathy. If you expect empathy from others, you have to have given it to another first.