Just Say “No”?

I have never been one to find it easy to say, “no.”  I’m a people pleaser, I guess, but I find delight in making others happy and I enjoy helping people.  However, I guess for my own sake, and, maybe sometimes even for theirs, I should learn to say ‘no’ but how do you know when it’s the right time to do that?  Here’s some examples of times I’ve found it hard to say ‘no’ to Lynn.

When Lynn got his “back pay” from Social Security.

As is true for everyone, it took us long time to get social security benefits.  We had to wait until we could go before a judge who could see for himself that Lynn was totally disabled. So when he got his check, it was rather sizable.  At that time, he had not been in a wheelchair very long and still had good use of both arms.  Lynn loves to surf fish and he was looking ahead to vacation.  He wanted a way to still be able to surf fish and wondered if there was such a thing as a 4-wheel drive wheelchair.  He did some research and found just what he was looking for…in South Africa.  It could go over sand, climb steps, elevate his seat so he could look over things, had headlights, a horn, ahh…it was cool.  It gave him hope that he could continue to do what he enjoyed most in life for leisure time–fish.  But it was VERY expensive!  It would wipe out all the back pay if he bought it.  He really wanted it. To him it was a symbol that his disability would not wipe out his ability to have fun.  It represented freedom and gave him the feeling of being in control and out-smarting MS.  However, he felt guilty about using all that money for a toy.  He looked to me for permission to buy it.  What did I say?  “Yes,” of course.  How could I take away his hope? It was, after all, his money and not money we had already been counting on to pay bills (though secretly, I had several credit cards I wanted to pay off that I had run up with costs associated with his care). But, the main reason was I just could not take away his hope.

Was that the right decision? Yes for his mental health; no for our finances.  To this day, that machine has not worked.  We took it on one vacation and it would not move in the sand. We  sent the motor back to South Africa in March of this year and have yet to get it back.  Right now it’s a huge obstacle in my living room that has no motor and cannot function at all.  Had I known this, I would have said ‘no’ but not knowing this, his hope was more important to me than the cost.  Therefore, I still think it was the right decision because having hope when you are disabled is essential to life.

Purchasing a New Lift Device

Once again I’m faced with whether to say ‘no’ or participate in hope and once again, I’m going with hope.  Lynn wants very much to stand and if possible to walk, again.  Who wouldn’t want that?  He’s convinced that if he works his muscles well enough that he will be able to do so and that it is not the MS that has caused him not to be able to stand but the deconditioning he experienced when he was hospitalized two years ago for so long.  The doctors can’t say for sure though they believe that progression of his MS is the reason for his immobility.  However, with the change in his diet to following the Terry Wahl MS diet and his dedication to exercise, he truly is moving more than he has in years. Who’s  to say that he could not eventually stand if he was able to recondition all the necessary muscles?

The problem with reconditioning muscles necessary for standing is that there are so many of them.  Doing exercises to isolate one muscle group at a time requires considerably more energy than he has available.  Therefore, once again he has done his research and identified a device that will help him stand with assistance.  It’s called a Rifton TRAM. It allows the caregiver to put a saddle under the hips of the patient and gradually lift them to a standing position.  With the saddle in place, they have support in the amount needed to bear weight.  The advantage of this is that by bearing weight, he can activate more muscle groups plus the stress on the bones, makes the bones stronger.  Osteoporosis sets in when there is no stress to the bone and that causes bone deterioration which makes the person more susceptible to fractures.  So by using the TRAM not only could he strengthen muscles to stand on his own but could help prevent future bone fractures. 

We are in the process now of getting the information necessary to the insurance company.  However, even if they do not approve it, he still wants to buy it because he’s convinced of what he can achieve with it…and who am I to say he can’t?

What’s going through my head though?  Will he be crushed if he cannot stand and go into a deep depression?  Can we afford to pay the full price at a time when year-end bills are coming?  His son’s wedding is in four weeks and we have to prepare and pay for the rehearsal dinner as well as Lynn’s clothing and get their wedding present.  Christmas is coming which means presents.  And of course, there are the multiple bills that need to be paid.  Knowledge of all these needs causes me a lot of stress as I agree to buy the TRAM even if the insurance won’t pay. 

I really want it to work for him but I keep remembering that behemoth wheelchair in my living room and don’t want another useless device in my house so agreeing to this takes a lot of faith on my part.  I know however, that God will take us through whatever lies ahead and if it doesn’t work, He will help us both deal with that.  If it does work, then He will be gloried in helping us to get the device through faith. 

So, once again, I just say, “Yes.”

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About mscaregiverdonna

I am a full-time caregiver for my spouse who has Multiple Sclerosis while I try to work full-time, take care of our home, and handle any number of other functions that used to be shared by the two of us. I'm learning that it's amazing what you can do when you have to and when you have God to send you the resources you need to manage moment by moment.
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7 Responses to Just Say “No”?

  1. Robbi says:

    Donna Tom had a stander I hate to tell you but it did not work for him . His leg were just to weak. therefor the stander put to much pressure on his shoulders. the good thing though our ins. Paid and the company let us return for full refund. Good Luck I know how you feel

    • mscaregiverdonna says:

      Thanks for sharing that. I have that same concern myself.

    • mscaregiverdonna says:

      That is my fear as well; that he is too weak to make use of it but we’ll see. this has a saddle to hold him up if he can’t do it himself so keep your fingers crossed for us!

  2. Patrick says:

    Donna the straight from the heart way your share what you are thinking and feeling is invaluable. Thank you for making the time to share.

    Caregivingly Yours, Patrick

    • mscaregiverdonna says:

      Thanks for those encouraging words, Patrick. I really appreciate them. I also enjoy reading about yours and Patti’s adventures. Thanks for sharing those as well.

  3. Norma Torres says:

    Hi Donna.  Juan has a wheelchair that stands him up.  He did not get to use that part very much.  He was to weak.  Even though it had the straps, but he got too tired.  I understand about not saying “NO”.  Every time I go get groceries or anything we need, he wants me to buy tools.  He is a tool guy.  It is so important to him we have any tool someone would want to use.  I guess things that are so important to them, are not that important to us,because we have so many other things to think about.  I don’t really say no, but I do not get the things he thinks he needs rightaway.  Living on Social Security and my retirement is not easy to have alot of extra cash. He also likes exercise equipment.  He wants to buy an exersise bench.  In  being bed bound,  he would never be able to use the bench.  I do not ever tell him he cannot do it, but we do discuss how would he be able to use it right now.   I told him, as soon as he could get some strength, we could go and look at them.  He was very satisfied with that. We do not want them too loose hope, but sometimes you have to help them see reality.   May God be with you both.

    Norma Torres

    ________________________________

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