I find myself growing very tired more often. Years ago, I remember reading the blog of a woman who's both husband and daughter were diagnosed with Young Onset Alzheimer's. She cared for her husband at home for 12 years and I remember thinking, "that poor woman she must be so tired". Well next April, Mike will be sick for 11 years and I already know what she must have felt like.
It doesn't take much to upset our routine. Brandon's injury to his tooth at school has already been difficult to deal with. Financially - we're already up to $900.00 for the dentist and that does NOT include the travel expenses of Brandon going back and forth to Connecticut. Then there's the time involved - whether he takes the train home (which could take him 6 hours depending on the schedules and whether he catches the right train) or I take him back and forth (a round trip takes about 5 hours), we are EXHAUSTED. It takes so much time out of my already depleted schedule and it takes time away from his coursework and/or classes. Finally, for Brandon there is also the physical pain of dealing with a tooth broken in half under his gum line - trying to eat without using his front teeth, trying to clean his teeth in order to prevent infection and the daily annoyance of it all. This has been difficult to deal with, but it MUST be done in order to try to save Brandon's tooth.
The there's the fact that caring for Mike has become even more tedious. I don't want that to sound bad, but the truth is the truth. It now takes about an hour (on a good morning) to clean him and dress his wounds. There are the dreaded mornings when after he's been cleaned and the wounds all dressed, that he goes to the bathroom and we have to start all over again. We all do it because we love Mike and want him to be at home, but the fact of the matter remains is that is more and more time consuming.
Then I have the constant struggle within me as to whether we are doing this for ourselves and if in fact Mike is also getting tired. Does he struggle each day for US? Is he dealing with the pain of 4 bedsores because he doesn't want to disappoint us?
The fact that neither myself and my children have had a REAL vacation together in 5 years may add to the tension and struggle. Courtney and Brandon have both been lucky enough to have taken short trips with their school and of course Courtney went to London (for school) for 5 weeks. They need that break to get away from it all. For me, I haven't been so lucky. I've taken extended weekends for graduations, move-ins etc., but not REAL VACATIONS!!! A normal healthy family needs some respite time away, to clear the mind and rejuvenate themselves. A family dealing with a health crisis definitely deserves a vacation even more, but quite often, it's just not possible. I dream about the day when I can lay on the beach, swing in a hammock, read a book, have a drink and DO NOTHING. The guilt that those dreams bring is immeasurable because I know the only time I will be able to experience a true vacation will be when Mike has left us. I think there should be some sort of respite project in place for 24/7 caregivers (of any ill adult or child) so they can get away to recharge their batteries. We did that a few times before Mike's illness progressed and I had my salary cut. I can tell you first hand how much a vacation helps the body, mind and soul. Even though we had missed Mike terribly, when we came back we were all better caregivers. I came home to the normal routine, but I had a much needed break and that made such a difference. Then I sit and wonder - even if I could afford a real vacation, would I have peace of mind while I was away? Probably not, I would just be worrying about Mike. Ideally it would be great to go away and be able to leave your loved one in the hands of capable, professional nurses and aides 24/7 so that peace of mind can be attained. Unfortunately, there is no program around that would provide this sort of respite and that's sad. Keeping Mike at home is my choice and I wouldn't change it for the world, but it would be so nice to escape every now and then.