How many times have you been told, “You need to do…” by a well-meaning friend/family member/etc. even though it’s not anything you need or would help?
I have had my share this past week. I’ve been told I need to simply to tell my family to change their times to accommodate my need for sleep. I’ve been told that I need to give up all my EP work, after all I’m not getting paid so the people I’m working with don’t need me. I’ve been told that when I tend to my hubby’s wounds that I’ve got the bed too low. I’ve been told that, well, if there’s no respite available then you should never consider ever again trying to do things that would require that. I’ve also been told that I am to “force” my husband to eat more vegetables to raise his alkaline levels. I’ve even been told that I’m not including my husband in daily activities.
It is so nice of these people to tell me all of this wonderful advice and how I really need to follow their instructions. After all, they have “been around” and since I’m so busy, I’ve obviously lost touch with reality and should know better. Everyone can balance getting five-minute items done in five minutes and at the proper times of day. I should be doing that, too.
Really? I mean REALLY?!!!
Let’s tackle that list that I’m not in touch with.
Child’s bedtime: You simply need to tell your child that bedtime is at 8 and they should just go to bed. Enforce it! You are a weak parent. Tell me, when Daddy is in pain or someone has called on the phone (who is a long talker and won’t stop) or supplies necessitate immediate refilling because as usual when you need them, they are not there. Daddy and everything else does not exist because it is 8 pm. Let me say something. Having Daddy home for several months from the hospital is still a relatively new idea for us. We are just now settling into schedules. Twinkie gets in PJ’s at 8 and bed at 9. Sometimes that’s on time and sometimes it’s much later. Daddy’s pain (or even cathing) takes priority and I won’t apologize for it. Unless someone wants to provide me assistance at that time of day. Overall she’s doing okay; we’ve been told for a five-and-a-half-year old she’s at a 5th grade reading level!
Give up your EP work: Ha! Ha! Ha! Never!!! Here’s why: Since no program exists (no kidding!) for respite for me, my EP work is my respite. But that’s not the only reason why. This has become my career and in the past several weeks, I have been participating in more or rather higher level meetings and meeting with new high level contacts. Those contacts and all others I’ve amassed have paid me–maybe not monetarily–but with a kind of friendship and compassion money can’t buy. One of my contacts referred me to a doctor in DC with the NIH who was able to diagnose hubby’s Central Neuropathic Pain, explain it and put him on medication that controls it. Another has arranged for hubby to participate in a medical transportation program and helped enable our daughter to become scholarshiped into a summer reading camp. A contact from the Miami area sends Twinkie care packages from time to time. A group that I work with is trying to set up an EP plan that accommodates people like my husband in disasters. Some of my contacts send me samples of things I can use. A network contact of mine put me in touch with a program that I am currently applying for on my hubby’s behalf to get the deck fixed with a ramp installed so he can have a second access outside along with a way to reach the basement for tornadoes. I’ve also acquired some deep friendships that on rainy days–they make the sun shine! OH! I almost forgot another network set of people are trying to get me into a county leadership program. I gather that someday if I’m ever allowed to work for a living, I think I’d have some job offers off of it.
The bed is too low: Did it occur to you that not everyone in life is taller then 5′ 3″? I’m 4’10.” Forget the 1/4, 1/2, etc. inches. Just 4′ 10″. If I raise hubby’s bed as high as you want it, I keep pulling muscles in my wrists! Maybe I do know the proper level bed height so that I don’t pull any muscles, back or wrist.
No respite. Give up that idea you want to pursue: Is that your idea of encouragement? Is that how you tell someone to go out and return to being successful in life? That, when the odds are against you, just give up. When you work a 40-hour week, you do get to eat, sleep, etc. and even take some time off for vacations. Why can’t I? I work 7/24/365 as a caregiver. There’s a famous phrase. I don’t know who said it, but I like it. Lead, follow or get out of the way! It may be kind of direct but if you aren’t willing to cheerlead my family and I on to participate in things that would continue to improve us or our lives, then move out of our way! We are going to participate in our success anyway!
Force him to eat more vegetables to raise his alkaline: I have no clue if this is true or not. I accept that eating vegetables is healthy for you and I do feed them to my hubby on a very regular basis. But my hubby is an adult. He has no cognitive concerns. He can make decisions for himself. I just make his dinner. If you think that isn’t good enough then stand in my shoes at dinner time, hover over him and lecture him on the importance of vegetables. If you can force him to eat more then he already is, then I’ll follow. Otherwise I have no time for this, not until you’ve stood in my shoes.
You need to include him in more daily activities: The day I heard this, I actually asked hubby if this was true. I even asked if maybe I babied him on this item. “Where do you come up with silly ideas like this???” was his response. Someone recently had actually spent in-depth time with me telling me that I wasn’t having him do enough during the day. I need to get him out more. I need to take him to the mall. He needs to work on his computer more. He needs to eat dinner at a table. And so the conversation went. Well we don’t have a van that takes a power chair (saying “electric wheelchair” is discouraged these days). Think about oil versus water; in our case, car versus 350 lb. power chair. Doesn’t work. But if someone can get us one, we are there faster then a heartbeat!!! Some days he is pain, some days he sleeps and other days he is working on the computer from 8 a.m. to 12 p.m. I think he’s doing okay for a tetraplegic with three rare disorders and on six different medications (three of which are pain controlling). Dinner table: In our home that is an overrated idea. We don’t have a dining room he can access. We don’t really even have a table he can access easily. If even we did on the prior two counts, usually he’s addressing pain and exhaustion by dinner time so he’s in bed. And, rather then the family spending dinner time apart, he eats dinner in bed, Twinkie pulls out her little table and I eat on a folding table all in the same room at the same time. We are a family that spends a lot of time together–tables and designated rooms are not required to do that. Quantity or rather quantifying items aren’t important; quality time is!
Please don’t misunderstand me for a moment to think that I don’t want helpful advice or your concerns. I actually love each and every moment that you give me and share your concern with me. I know that you are saying you care, about my family, about me. That in and of itself is a gift I’ll receive anytime. But my favorite gift that is rarer then rare is when you step forward and say, “By the way, I am doing XYX for you…what day can I do it for you?”
So what do I think I need to do right now? Oops! It’s 9:46 p.m. and I’ve got to put away the dishes (so the help doesn’t put them in places I’ll never find), Twinkie to sleep and read her a book, let the dog out and spend time with hubby!
The Roaring Mouse