I have been outside doing those things that I couldn’t do when I had MS (Multiple Sclerosis).
Over the last 5 years, since accepting the “Good Doctor’s” diagnosis, the dread, “Incurable” disease had increasingly disabled me. For the last 8 months, I was confined to a wheelchair because I couldn’t do much accept manage to get into it and, if I was lucky, out of the wheelchair and onto the toilet before messing myself.
This week, I was “Cured.” This article is not about that. Rather, it is about what I was reminded of while working outside. While it is still fresh in my mind I realize that I should write this article, before I forget how unpleasant it was to be so dependent on other people. I feel that our minds tend to forget the unpleasant things after we get through them.
Please understand that this is from a man’s point of view. Women, I am certain, have issues somewhat like mine were, but my on-line associate lady friend, co-author, Barb, will write of them much better than I could.
While I was cleaning both the front walkways and the back yard patio, it occurred to me that my daughters would ask, “Who did that for you, Dad?”
I’ll likely respond by saying something like, “Whom do you think?”
I should say that I was “One of the fortunate ones.” My oldest daughter became my caregiver after my last (for nearly three years) live-in caregiver departed to be closer to her own six children, leaving me with plenty of disposable briefs “High,” and “Thank God, dry!” While she offered to take me with her, I declined. Actually, I thank my maker for both of my caregiver experiences.
While I was blessed to have a family member caregiver who drove for thirty miles each way two or three times each week, cooked up special meals for me, and kept me supplied with her homemade corn muffins, many disabled and/or handicapped attended too by family members are not so fortunate. My daughter would genuinely laugh at my jokes and put up with my outrageous humorous interchanges with others whenever she took me out of the house.
On more than one occasion, my daughter asked, “Daddy, is there anything that you specifically want me to do while I’m here today?” She would even sit down and just talk with me, if I asked her too. Then, she would take extra time to complete the needed tasks before returning, maybe late, to her own husband and children.
I’ve admired her sensitivity to my needs and successful motivation of others involved in providing for my personal comfort. Frankly, I learned much from her tactful interchanges with medical products dealers on my behalf. Yes, I realize that I have been truly blessed.
I understand that she, like my other kids may still have some difficulty believing that I have been cured of MS. Yet the fact that I am walking already should cause them to wonder. LOL. But then, I will still use a cane, for now. So, I need to cut them some slack, too.
As regards the walkways and patio, my youngest might say, “I was going to do those for you!”
I hope not. If she does, I will not be impressed in the way that she might expect. I might even say something to the effect, “Then, why didn’t you do something about them? They’ve looked like hell all spring and I’ve mentioned that I’ve wanted to spend more time outside. Am I supposed to be impressed that you knew that they needed to be done, yet clearly didn’t consider it important enough to do?” That would go over real well.
I have learned much from my youngest daughter also. The other day I was bugging her for a third time about my concerns regarding a computer cord that I wanted taped securely to the floor. I feared that my chair would roll over it and break it when I got up from my computer. She asked, “Has it happened yet?” On another occasion, my youngest called out another of my character flaws. LOL.
I was seated on my handicapped scooter when I finished using a towel in my hands. I attempted to hand it to her saying, “Would you put this away for me?” She did, but later she said, “Dad, you should stop asking other people to do what you can do for yourself.”
“No, I don’t!” I protested. “Give me an example, if you think so…”
“Alright,” she said, “How about handing me that towel to put away for you? You could have done that for yourself. You were on your scooter.”
“You’re right,” I admitted. “I’m sorry,” I said.
And here’s my point: Persons entrusted with the care and involved in the management of the disabled should not expect their clients, spouses, or parents to “Tell them” everything that they are thinking, any more than you do. You too have the right to withhold your thoughts. Hey, when someone is dependant upon you, don’t you think that they don’t want to not offend you? Each of you should also “Pick up after yourselves.”
As a caregiver, don’t tell the person that you care for, “You should not have tried to do that, by yourself!” They wouldn’t have, if you had been more sensitive to their wants and/or needs.
Perhaps, you should have asked, “Is there anything that you would really like me to do?” You might have been surprised by their answer? Of course, you no doubt had your own ideas about what they “Needed” doing. I’m sure that you did a great job of that.
For Heaven’s sake, don’t tell the one that you care for, “You’re not going to get any better! The doctors say you are going to get worse. Just accept it…”
If you want to believe that, it’s up to you, but don’t rob the other person involved of his or her own faith and hope. Scripture says, “Faith is the substance of things hoped for, the evidence of things not yet seen.” All handicapped or physically challenged people need all of the faith and hope that they can muster.
When he attempts to do something on his own, quit saying, “Don’t do that! You’ll fall and hurt yourself. Then, think how hard it’s going to be for you…” What you are saying might very well be true, yet if the disabled one is willing to “Risk it,” that person has already considered the risk and taken a step to maintain his independence. Appreciate his courage.
On another note, is the person that you “Care for” getting ALL of their needs met? Are they encouraged to share their thoughts, their needs, and their wants? Are their ideas taken seriously? Do you really care “What” they think, or are you only concerned about what you think? There’s a pretty good chance that that person was taken more seriously before he became old, disabled, sick, or incapacitated. Now that he is compromised, do you think that his mind is too?
Put yourself in his place. Would you want to have your disposable diapers displayed on the back of the toilet so everyone could know that you had bladder control issues? Perhaps, you would like it if your pads or tampons were on the display each month when you had a period?
Or, maybe, you’d like it if you had someone told you that you shouldn’t think about being intimate, because your mobility was compromised? I, for one, think that this is none of a caregiver’s business! Now, helping him to find someone, if that is not your forte, might be of some help! Or, would that in some way jeopardize your control?
Speaking of which, making certain that your charge takes his pills. I’m certain that you learned the importance of that one in school. Did they mention in class that he might want to take “The little blue pill” or something else like Viagra?
When my 1st caregiver accompanied me to see my primary care physician, I asked her for an erectile dysfunction prescription. My caregiver was aghast. Then, when I told my doctor that my neurologist had said, “If you don’t use it — you’ll lose it, my caregiver just about did. Maybe, it didn’t mean anything to her, but I was still a man, and it sure did to me.
Pressing on, I asked my Doctor if she had heard of the studies which show that a man will live an additional 10 years if he has two orgasms a week rather that only one. My caregiver never even considered the extended employment benefit here. My physician admitted that she didn’t know of that, but wrote me a prescription, suggesting that an active sex life was part of being normal.
On our ride home, my caregiver wrote me “The riot act.” I’ve heard about a study that said the average man thinks about sex 238 times a day. Why would a caregiver think that a disabled man would think any differently? As I want to live to be 120 years old, and if I ever again require the services of a “Full-time, live-in homecare provider,” I intend to find a full-time nymphomaniac with a caregiver’s license.
How about music? Do you play “Your music” when you do your work in the disabled man’s house? Have you ever stopped to consider that your charge might like to hear his music too? Have you ever asked him what kind of music that he likes? Or, helped him to obtain some of that kind? Think about it.
Have you asked him what he thinks about or solicited his ideas? Or, have you expected the person that you “Care for” listen to your ideas, your problems, and lend you his emotional support? Do you really believe that he is “Happy” being your “Sounding board?” Well, think again…
Well, I guess I’ve opened up enough of a “Cans of worms” today. If some of them got onto you, then they have done their jobs. If you take note of them! I feel that you might do you “Caregiver” job a little better as well.
If your caregiver is unlikely to read this, print it out and leave it where she is sure to find it. LOL. She will you know. I’ll even put a “Take Notice” title on his article to make certain that she does. She can always ignore the article, as she has likely been ignoring you, my disabled friend if what I’ve said here rings home.
“Rascal” Russ Miles is author of the novel, For Sale By Owners:FSBO.
A “Seasoned Real Estate NAR Broker,” disabled by Multiple Sclerosis, “Rascal” Russ writes books & articles on varied subjects.
Via his personal website http://MilesBooks.com, Rascal’s blog, Comments: [email protected], & his ezine articles themselves, “Rascal” maintains contact with those whom he believes the God of this Universe has joined together with him as per Destiny’s Devine Plan for this Planet Earth!
