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Sometimes I Feel Like I will Explode

Pressure.   So much pressure.  …but where does it come from?  Me or “them?”
This has been one of those weeks where I have felt I was under extreme pressure all week.  The week started off with me getting up early on Monday for a conference call that wasn’t actually scheduled till Tuesday.  I needed to get up early anyway in order to have the four hours I need to get ready before I go into work for meetings so it was actually somewhat of a relief to have gotten the date wrong but that meant also getting up early the next day…which I did.  “Issues” started flowing in from work Tuesday afternoon and I haven’t had a break since….
My job can be very intensive.  I coordinate investigations, consult on workplace conflicts, and generally give advise on how to address problems.  Often participants are very emotional and the consultations are intense.  I have to be “on my game,” able to listen for variations of the truth, able to see through smoke screens to the facts, able to determine what laws apply and what solutions might work in a situation based on personalities and behaviors that I rely on others to describe.  Therefore, I need to concentrate on what is being said, how it’s being said, and what is not said to make sure I manage a situation effectively.
Now imagine this…I’m on a speaker phone attending a conference call about some highly emotional issue.  I’m multitasking at my desk, looking up information, referencing reports, taking notes, and planning strategies with the people on the line.  Over the baby monitor on my desk, I hear, “Donna I need to be cathed.”  So I take the speaker phone with me, mute the line, glove up and take care of business, never missing a beat.  Then he mouths, “I need nose spray,”  so I apply the spray, then as I put down the spray, “can you make me some tea?” I continue to carry on my conversation and go make the tea. When I deliver it, his foot has come loose from the stirrups in the peddler so I fix that, his socks need to be pulled up and his shin needs scratching.  I finish all this, still on the phone and go back to my desk.  Fifteen minutes later, “Sweetie, can you come here?” and it starts again.
Some days I do okay with this pace; other days I don’t.  When the issues are intense or the stakes are high, I feel intense internal conflict between who gets my attention at that moment. So far, I’ve managed to juggle it all– I can multitask like you wouldn’t believe, but the pressure is getting to me. Several times this week, I’ve just felt like I could not keep going like this.  I would love to quite the dual role.  I would love to go back to work and have someone else be the caregiver for a while but I can’t afford to do that.  The cost would just be too much so I keep going. I admit there are times I almost wish I would get injured or sick so I would have an excuse to stop for a while.  If that would happen, then insurance would pay for a temporary caregiver at least and the decision to stop being a caregiver, even temporarily, wouldn’t be mine to make.
I am very fearful that eventually I won’t be able to keep up the pace.  What will happen then?  We have a little savings but that would not last long if full-time care was needed.  If we lost most of our resources, then we would be eligible for assistance but I don’t want to lose nearly everything so I can get some help.  If I quite my job and worked part-time, we could not pay our bills.  Lynn could go into a care facility but I couldn’t (not that I ever want him to have to do that) but if that happens, what happens to me, the caregiver, who has burned out, lost their income, lost their home, lost their savings? 
I’m getting morbid and over-dramatic but it’s these type of thoughts that cause the pressure.  I don’t want my worst fears to happen. I don’t want to lose our home or to have to put Lynn in a care facility; nor do I want to lose my job (believe it or not, I really like what I do).  So I feel pressured…pressured to do my best at work so I don’t let down my colleagues; pressure to do my best for Lynn because I love him and am committed to him; pressure to try to be a supportive mother and friend; pressure to make it all work.  Where does this pressure come from?  From me. From my own expectations.  From my own demands to do it all perfectly.
So maybe what I need to do is go find a pin…I think its time to create a small leak.  Just a little leak to reduce some of the pressure; not so much as to make me explode or deflate entirely… just enough to stay afloat like a balloon that has lost its elasticity and becomes almost puncture proof.  That’s my goal. To become a low pressure, rubbery balloon. Sounds good doesn’t it? Or better yet, I guess I just need to turn it over to God and let him handle it because it’s just too much for me right now.  So….God, this is Donna.  Here… it’s yours.  Thanks and Amen.

Necessity is the Mother of Invention

I’ve discovered that buying things to make life easier for a caregiver gets expensive; however, with just a bit of creativity, you can have devices to help out that work almost as well for a lot less (other than the time it takes to make them). 

Lynn has been a carpenter, is very creative and has come up with a bunch of things to help him exercise.  I’ve been able to look at magazines and come up with ideas also.  For example:
Don’t like covers on your feet?  Lynn doesn’t either.  What did we do?  Took PVC pipe and glued straight pieces and curved joints so that it sits on the floor and rises above the bed height high enough to keep the covers off Lynn’s feet.  Pipes fit under the mattress to keep it stable, and extensions come off the top to drop the sheets over.

Lynn doesn’t like his toes to rub together. Currently, he’s wearing toe socks, but before he started wearing those, I cut up IV tubing from one of his hospital visits to insert between his toes.  Kept them spread just enough without being uncomfortable.

Lying flat on your back, make your back hurt?  Buy some foam bed pads, cut them up into 3′ x 4′ sections, and tape them on top of each other.  Then make a pillowcase to put them in, and you have a pad to put under both knees at the same time to keep the knees bent and pressure off your back.

Does your loved one fall sleep in their wheelchair and then complain that their neck hurts because the muscles stretch excessively?  Take a stretchy cloth headband and some twine.  Tie the headband to the head support on the wheelchair.  Put the headband around their forehead so that when their head falls forward when they fall asleep, it will be in a neutral position and not overstretch their neck muscles.

He has several carpenter friends.  Lynn designs the devices give them the specs, and supervises the construction.  Here’s some of what he has created:

A tabletop for his wheelchair:  He had them cut a piece of plywood that would sit on top of the wheelchair arms.  He had them cut out a curve around his belly and knocked out a section for the wheelchair controls.  It allows him to rest his arms on the tabletop and put plates or drinks there as well.

Exercise equipment for his quadriceps:  He took a flat board and had tracks added to it.  On the tracking, he had them fix a platform against which he could position his feet.  He had handles put on each side of the board at the top then bought bungee cords that went around the end of the platform from handle-to-handle. He pushes the platform with his feet; the bungee cords pull the platform back, so he exercises his quads.

Core strengthening: He took PVC piping a constructed two sections held together by a wooden pole inserted between them. The PVC comes around in front of him and is a little higher on the ends.  A piece of PVC is under the mattress to keep the pipes from moving.  He sits on the bed with the piping around him to balance.  If he starts to lose his balance, he has pipeline all-around to grab.  He also uses it to do push-ups and build arm strength.

Preparation for reeling in fish:  He created a pole on a base with a hinge.  Then he had a bungee cord connected from the tip of the pole to the wall, and he had a fishing reel attached to the pole.  He could practice reeling, and he could pull back on the bungee cord to strengthen his “pull” for reeling in the fish.

What now?  He’s trying to find a motor he can get customized so he can put a trough on either side of the motor that the motor will raise up and down periodically while he’s in bed. This would allow him to flex his leg muscles periodically and relieve the stiffness he gets at night so he (and I) would not have to get up so often.

Creative, huh?  He looked to patent some of the ideas but getting a patent is VERY expensive, so I guess he will be the only one to benefit from his ideas but if you are interested and want to make one of these yourself, send me an email, and I’ll try to get you more detail.