We traditionally celebrate Easter by eating a Turkey, being with family and hiding a basket with eggs and treats from the Easter Bunny for the kids. So I was thankful that in spite of my moms aching back she came out to see Cara and share in some tradition with her granddaughter and me this year. I unfortunately have a sinus infection and can not go see my dear sister until the infection is healed. Cara with her Multiple Sclerosis has had issues with breathing and choking and has had to be ventilated more than once so I will not risk getting her or any one else where she lives sick with my infection.
So our mom went to go and spend some time with her and when she went to give her a kiss, like she always does, she noticed that she had food caked around her mouth from lunch. I wonder how short staffed some of these homes are, not finding the time to completely wipe someones mouth after eating a meal. My sisters skin on her face was dry and flaky again as well, may I remind you that she has MS, she can not wipe her own mouth any more, so she certainly can not put face cream on her dry skin. This saddens and frustrates me to my core. We take for granted the fact that if we have and itch we can scratch it. People in the medical profession honestly want to help but simply do not have the time. Changing someones brief would definitely take priority over making sure someones mouth is clean just because of time.
We are at for front of many great solutions to the many issues that someone with MS has to deal with. We have re-purposed a pill that was once used for acne to slow down relapses and it is working, the more relapses the worse the disease can get. This is not true of all MS suffers, sometimes the disease doesn’t debilitate completely like my sisters has, but I am sure it sits in the back of their minds as a possibility. There are a lot of funds being raised by volunteers and people affected by this crippling disease that go straight to research for the cure and a better quality of life. The sad thing is, is that I do not see any of this affecting Cara. Day in and day out she lays stiff in her bed or in her chair, and she can’t even get a regular massage or an occupational therapist to see her on a regular basis. We would have to pay for these things out of pocket because they are not covered by any type of funding.
Something has to change. Hopefully in Cara’s lifetime. I so desperately want to say to her that it will improve for her and the cure is available now. Cara would need rehab in order to learn to walk and use her muscles again, as she has atrophied from lack of use and being in one position to long. I am pretty sure she would not have any issues with this. I think even if she could not walk again, just to know that the quality of life could improve in the extended care institutions and homes, that would be enough for her. Really this would be enough for most of us. It is not only MS patients that suffer it is anyone that resides in these places. Some of the people living in an extended care environment have to live many years like Cara has before they pass. I sure don’t want that for anyone and neither would Cara.
Thank you for reading this and if you are so inclined, give to the MS Society, we raise funds through various fundraising events such as then MS Walk, Bike Tour, Golf Tournaments and Burgers to Beat MS through A&W. I personally am raising funds through The Jaymen Built MS Walk this year in May my Team is called Cara’s Corner.