There are many times when John looks good but feels like crap. When he has a good night’s sleep he not only does he looks well, but feels energetic too. It is very difficult for him to muster the stamina to keep up when he has not rested during the night. My job as a caregiver is to recognize this and make sure he is not stressed. This is hard to do when there is an event going on.
We have had a big week again, not only with the kids but also with John’s aunt who celebrated her 94th birthday. I had a small gathering at my house for lunch on Monday. We both looked forward to it. His cousin from Florida, her son, brought her up to our home. John’s sister and brother in law also came. Her daughter could not come because she had a sore throat and did not want to infect John with a germ. I had started the day by taking care of my other caregiver responsibility, my grandchildren. A petting zoo exhibit was brought to the school and I went to help watch over the kids. When I came home, I got ready for everyone’s visit. John was looking forward to seeing his cousin from Florida, because he does not visit very often and we enjoy his company. He is a great guy. He is a lot of fun and good to talk to and both John and I get along with him very well. Anyway, it was a nice afternoon, except for the fact that John was tired from not sleeping well the night before. As the afternoon went on he got more tired. When that happens he kind of steps back and does not engage much. He shuts down and feels out of it. I try to make sure he is comfortable. His aunt noticed it but the others were involved in conversations so it is not so obvious to them. What you see is not what you get from a Multiple Sclerosis patient. They may look good, but feel like crap. It takes all their energy to keep up appearances. After the event they collapse in relief knowing they do not have to put up pretenses.
Our life is built around his feeling, his energy and what can be done. Because he may look good does not mean that we can do the same thing everyone else does. This is sensitivity with MS patients that caregivers need to have. The patient often feels inadequate. They feel like a disappointment to their spouse /caregiver because they cannot do what others can do. In the long run, we, the caregiver have to accept the fact that while we may be limited in our everyday doings, we still have to go on and do what we can. Whether it is where we can go or what we can do on an everyday basis we must try to enjoy it with gusto. The psyche of an MS patient is directly related to his body. As a caregiver, we try to make sure that they are healthy both physically and mentally. It is somewhat of a roller coater because the caregiver has his/her own mental being to be concerned with.