After years of caregiving, I believe I know Lynn’s body and his emotional and physical needs as well or better than my own. Actually, I probably know it better because I don’t pay attention to my own. By becoming familiar with him, I’ve been able to take quick action to prevent minor problems from becoming major ones most of the time. However, being vigilant and adept at making these assessments has resulted in a different problem—Lynn expects me to intuitively know what he needs!
For example, Lynn uses an air cushion seat. The cushion is made up of multiple rows of air bladders that disperse air away from the weighted area (where he sits) to the outward bladders. He then sits on a small layer of air, which minimizes the pressure against his buttocks. The device is great because the firmness of the cushion can be adjusted as needed for comfort. The bad news is that the material it is made from is like a bicycle tire and wears in time to produce tiny little holes that allow the air to leak. I then have to find the hole and patch it so he won’t be sitting on a flat cushion. Periodically he will tell me to “check his cushion.” Unless there is a leak, it’s difficult for me to know from time to time if there is an actual difference in the inflated areas. He will say, “My butt hurts.” I’ll respond, “Do you think the cushion needs adjusting?” He responds, “Yes.” I ask, “Do you think it needs more or less air?” His response was, “I don’t know, just check it.” I then proceed to either add or remove air to make a change of some type. It doesn’t help to ask if “that” fixed the problem because he can never tell. This can be rather frustrating, as you can imagine because he wants me to fix a problem I can’t “feel” and to know if it’s “right” through my intuition.
If I look at this behavior as him being lazy and wanting me to take all responsibility for his comfort, then I get really annoyed, but if I remind myself that maybe the reason he can’t tell me if it’s right is that he has “butt de-sensitivity,” then I’m a little more tolerant. Maybe the reason he can’t tell me how it feels is because he’s been sitting on those nerve endings so long that he has lost sensitivity in that area. Think about it…if you sit in the same spot for an extended period of time and don’t move, can you even feel your skin touching the seat anymore? After a while, it’s as if you and the seat are one, and it’s difficult to know what is wrong if it’s gotten uncomfortable. On the other hand, MS affects nerves; nerves transmit signals through the skin; could MS affect the transmission of touch… sure, why not?
The other “touch” issue, though, is itching. He no longer has the strength in his hands to scratch an itch. He can slightly rub an itch but he can’t produce enough pressure to really dig in and scratch. He feels the itch, he calls for me to come scratch it and says something like, “My leg itches; scratch it.” He seems to expect I’ll know which leg, where on the leg, how vigorous to scratch, and when I’ve stopped the itching. Now, in that situation, I think he just has come to expect that I’ll “know” what he needs. I have to remind him that I can’t feel what he feels, so he will need to stay “engaged” in the process.
Engaging in what is going on when I am caring for him is not Lynn’s strong suit anymore. He is so used to me doing it all that he forgets to lift his arm back into place, lean in the right direction when changing clothes, or open his mouth wide when I’m brushing his teeth. At such times, it’s as though his body is no longer his but something strictly housing his spirit, which he uses from time to time.
Hmmm….I can see that, though. My inner being is located somewhere behind my eyes, and I look out through those eyes to experience the world. This body that houses my spirit is there to make my thoughts come to life, but if my thoughts cannot be carried out by my body, then wouldn’t I eventually disassociate with the vessel housing my spirit? If someone else moves my body parts, helps me achieve all my organ functions that require muscle movement, and provides for all the care and maintenance for it, why wouldn’t it feel like a foreign object? Something like a coat I can put on or take off. That really puts his disinterest in what I’m doing to him in a different light. I’ll have to keep that in mind the next time he wants me to “scratch that itch.”
This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC, and has been reposted with permission.
