So, for the last almost ten years, I have been the care taker. When Rich first came home, there wasn't much he could do. He couldn't get up from furniture, the bed, the toilet, etc. You may have noticed that he is a bit bigger than I am. He weighs about twice as much as I do. Lifting is hard under those conditions. He couldn't feed himself, dress himself, groom himself, etc. He was trying to pour himself a glass of water when he first got home and poured it either in front of or behind the glass, but he just had a hard time figuring out how to get it IN the glass. (Depth perception is lost with only one eye.) Obviously this has changed over time. He can now do almost everything on his own. I still need to button his dress shirts and put on his ties. I still have to put on his compression stockings. I still need to cut his meat if it won't cut with a fork, etc. I still groom his beard weekly. And, as I have mentioned before, I drive us everywhere. I had to continue to take over the finances, although I surely would rather not. It's not my strength. I have to organize his time, which is a very frustrating job since he has no concept of it. For many years, I told him that his appointments were 30 minutes before they actually were just to make sure he was going to be there on time, or at least close enough to time that we could keep the appointment. The main reason that he has progressed to the level that he has is because I refused to do it for him. If I continued to make his breakfasts and lunches, I would still be doing so because he wouldn't be able to. This was explained to me by the wonderful OTs at HealthSouth.
I am still looking for some technology to help in some areas, especially with organizations skills, but so far I have not found what we really need.
In spite of the fact that I am alot more free now than I was 9 years ago, I still need to get out and away from it. I need to go out with my girlfriends, my daughters, etc. It is tiring to constantly be the one in charge. It doesn't matter who you are, you need to get away from it. You need to go and do something you enjoy, and forget about the problems that you have.
Being a care-taker is exhausting, overwhelming, stressful, and emotionally draining. One of the things that has become obvious to me as I grow older is that in a relationship, one of the people is going to need the help of the other one. Sometimes it is for a short period of time. Sometimes it is for a long period of time, sometimes it is forever. Sometimes it switches back and forth between the two, and sometimes it doesn't. You don't think about those things when you get married, especially when you get married young. You think that your spouse will always be young and strong. Even if you realize you both will age in theory, it is quite something different in reality.
Being a care-giver is also extremely rewarding. You see the progress of the person that you love and you know that you had a part in that progress. You cheer when they reach a milestone and mourn with them when they loose a capability that they used to have and have lost. You hurt as you see them hurt, but you celebrate when they achieve a goal that they were told that they would never achieve.
Just make sure that in doing all that needs to be done (and the list is endless), that you take time for you outside of your care-giving responsibilities. Sometimes you have to say no. Sometimes you have to say no to the person you are caring for, and that is hard, but you have to do it! Sometimes they become very demanding. You will be of no use to your loved one if you have nothing left to give. Your sanity is what is keeping everyone together, so make sure that it is protected. And also remember that you are not alone. There are others that have done this and lived to tell the tale. I am still living it, so I for one, understand. Hang in there! I believe in you!
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