So today I want to talk about how I found rest. Last week I shared some of the stressful feelings and situations I had but I didn't share how I learned to handle them. Caretaking can be overwhelming. I had a friend one time tell me it could "suck the life out of you if you let it". And she was right. You might think you can compare it to raising children, but it's nothing like that. Instead of watching a child grow up and out of your care, you are watching someone diminish. That's the mental piece that really wore on me. (Note: not all of caretaking is negative! I promise to share the positives too!)
In the beginning I was relying solely on family for relief because it was easy. He thought they were just coming to see him, not to be cared for. It was a cop out on my part. The easy way out. Unfortunately, they all have lives and I realized I was the one who signed up for this, not them, and that it wasn't fair to expect them to help me. That's when I tried to go it on my own. Big mistake. You just cant spend that much time with someone without them getting on your nerves, not to mention the other issues involved. I also realized I was resentful and angry and had no one to blame by myself. I was in a bad place and that it wasn't fair to dad. I made the decision to put him in the best place we could find so I didn't take it out on him and those around me or find a way to change my attitude.
We toured quite a few places and he was devastated after each one. He would become quiet and sad and I felt such guilt. There was just no way to do this without sadness. I honestly believe that while he may have adjusted, given the spiral down I'd seen after moms death, I wasn't sure he'd ever snap back if we did this. I figured I would give it one last try at home, but I knew something would have to change. I saw that I had a better attitude when I had had time away, so I figured that I needed a little more of that. At first I felt guilty for needing a break. I guess in my ideal little world, everyone is always happy and you don't mind spending your life caring for someone else. But that's not the real world and I soon figured out I needed some time for myself.
One of the biggest hurdles was that dad was adamant he didn't need to be "babysat". He would just pitch a fit, which is why family seemed the best option. Unfortunately, I needed more than they could give. I finally signed him up for a day care program once a week for three hours. That was a disaster. The patients there were not as highly functioning as dad and he pretty much became even more depressed going there. I was sad just taking him there. This was not the place for someone who could still hold a conversation. Scratch that.
The woman there, understanding my issues, told me to call the Alzheimer's assoc. and look into a program they had. I did that and that program saved me. I kid you not. One day a week dad goes to the "Day Out Club" with others in early to mid stages of Alzheimer's. They play game to sharpen their minds, do art and music and have special speakers. He loved it and still loves it. I owe my sanity to that program and the women who staff it! One day a week I have four hours to myself. You'd be surprised the difference that can make. And with that one four hour time a week I was able to find some peace of mind and began to notice a change in both of our attitudes. He needed the break as much as I did! This single piece was the turning point for both of us. The Alzheimer's Association has helped me understand the disease, and deal with it and him in a way that still honors him. They have support groups and educational talks and much to read online that is helpful. I am really grateful for their presence and for the local group that has helped both of us manage our issues much better.
Around year three, I realized that my husband and I hadn't been out together in a long time. In fact, I'd bet we hadn't been out together even a dozen times in three years. My husband has never complained about having my dad. He has always been supportive and is actually better with him than I am sometimes. (yes, he's a saint!) But I started to sense that he felt restricted. Not him personally, but us as a couple. Which we both knew was a part of the deal, but it still gets old. I made the difficult decision that after all this time of giving in to dad's stubborn tantrums that he didn't need a "babysitter" I was going to get a "daddy sitter" and have regular times out with my husband. Oh, how that went over! And still to this day (it's been 6 months!) we have to have the "talk", where dad sits me down and tells me to cancel them because he's fine on his own. I then walk him over to the stove and show him the green enamel still left on the burner of the stove from the tea kettle he burned to it not too long ago. He of course can't remember that, but he still finds an argument and I just shrug my shoulders and tell him that's the way it has to be. Sometimes he pouts. Sometimes he gets angry. Most of the time he tries a different argument. But by the time they come he accepts it more or less and everyone they have ever sent has been engaging and he seems to enjoy them. And we have two nights a month to ourselves.
From the beginning we have taken him to church to his Sunday School every Sunday. His good friends there Larry and Liz (wonderful friends) take him with them to go out with a group for lunch each week. They are so good with him and understand his issues. I believe the interaction with people other than the family has been very good for dad. I realized you see, that having time apart wasn't just good for me, but for him as well. Sometimes, I've had to do things he didn't like for his own good.
So you see, finding respite was the key to keeping dad with me. The stress is real. Sometimes I dealt with it well and other times I didn't. But I think, no, I know, I didn't know my own limits. And even when I did, it took a while to figure out how to fix that. I am really fortunate that I have this support system in place now. Having respite has helped me to care for him the way I want to, with a loving and kind spirit. Not only did these tweaks help my attitude, it has greatly improved his!
Taking care of the caretaker is the best thing you can do for the well being of the person you are trying to care for! You are not being selfish to find respite for yourself. In reality, you are keeping yourself healthy enough emotionally and mentally to care for someone else. There are many resources out there for caretakers. Probably not enough, and you really have to hunt sometimes, but its worth looking for them. If I've learned anything it's that I can't do it alone!
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