Caretaker Cap

The other day in a parking lot dad and I saw a mama goose sitting on her eggs in one of the medians between parking spaces. Mr. Goose was strolling among the spaces, standing tall and walking proud. My dad proceeds to tell me (again for the hundredth time this spring :) that geese mate for life. We only saw Mr. Goose and dad was afraid that he was without a mate. Any time we see a lone goose, he tells me how sad it is and that geese mate for life and they don't know what to do with themselves if the mate dies. That last bit is his slant and I believe it's significant to him, given his loss. Anyway, on our way out of the lot after doing my errand, he asks me to drive by Mrs. Goose. I drive up next to her and roll down the window and we talk to her and ask her if she's having a good day sitting on her soon to be goslings. Dad loves this and as we drive away he laughs and says "that's a joyous thing-nature is so wonderful!" What an old softie!

Those are the good times. It's times like those that make the hard times worth the trouble.  But there are hard times. Many of these posts address the mental aspect of caretaking. And the mental stress will lead to physical stress if it goes on too long. You need to stay healthy. I really underestimated the stress piece of caretaking and the way it would affect me, or how important respite would be to my overall health. And why do we need to take care of ourselves as caretakers? Say it with me now--"you can't take care of someone else if you are sick yourself!" The stress of caretaking can show up physically, mentally and spiritually. And trust me, it will if you don't learn to manage it. Now, let's talk some more about the mental stress.I want to talk about a shift that took place in me that helped both my dads stress and my own.

This is not easy for me to share. I feel vulnerable, and yet I know it's not unique to me. I am not the first to feel these things or walk this path. But I felt very alone at the time. I was watching dad's mental decline and not really understanding  what was happening (you really never will understand dementia/Alzheimer's. There is just so much we don't know yet), how long it would take or how it would look in a day, a year or three. I never anticipated his resourcefulness and ability to hide his illness or make it seem as though he meant to do what he did. Sometimes he did mean to do a thing and then would blame it on the disease-(pretty smart huh?)-I think, to have some control. It was very confusing and frustrating.

 Bringing him here meant selling his house and most of his possessions. It wasn't the "things" so much as what it meant to give up everything you own and all your independence, bring only what you could fit in two small rooms and depend on others to care for you. Dad has always been the one everyone depended on. A strong, independent man. He just did not understand why we were doing this, and while he knew he had issues (we tried explaining them to him) he just somehow didn't believe it. That it was that bad. That we needed to be this drastic. He was a mess of conflicting emotions, in denial of his issues-yet he almost seemed relieved to not have the stress of living alone. He was angry with us for "forcing" the move, but thankful that we were there for him. One day he would ask you to start doing something that was difficult for him and the next be angry you were doing it. And all the upheaval was really hard on his mental state.

 After he moved in, he was a hot mess. He cried and argued over everything. He was clearly taking his anger and frustrations out on me and while I knew that, I couldn't help but be heartbroken. He viewed me as the enemy of his freedom. Yes, the others had a part, but he viewed me as the one who ruined his life. (still does) And in a way I was. The next moment he was thanking me for taking him in! It didn't matter that it was what was best for him, his fury was hard to take but I understood it in the way you understand something that you know you might experience yourself someday. You don't really understand, but you can imagine. And I hadn't really thought this through. I just needed him out of that house before he burned it down or some other calamity happened!

And so here we were. Both of us completely miserable. Dad was obviously depressed. Nothing I tried was working and the depression in combination with the mental confusion made for some pretty tense times. I've talked about depression being the #1 issue for the elderly and he was pretty bad off. I took him to the doctor and asked the Dr. to suggest medication but he would have none of that. He wasn't depressed and didn't want to be on any more drugs. It was then that something clicked for me. I understood in that office that dad was not thinking clearly for whatever reason, depression or dementia-it didn't matter which, and it was my job as caretaker to make those decisions for him. With the help of anti-depressants he could live the remainder of his life happy and not depressed. So I got a medical power of attorney and I put him on anti-depressants and I've never looked back. I told him I did it, he pitched a fit, but there was nothing he could really do about it. And he forgot soon enough, which can be my greatest working tool at times. I think that was when I understood that I wasn't dealing with my dad anymore. Not really. I was dealing with a shell of the man I called dad. His pride and fighting spirit were in tact, but they were misdirected and not guided by reason.

It was that day, in the doctor's office that I really stepped up from daughter to caretaker. And I cried that day. The loss is so great for a parent if they live long enough. Little by little life takes back all that it gave. It's not fair. Some handle it better than others. But dad has never been one to go down without a fight. I respect that and at the same time I was trying to find a way to honor that without both of us going down in flames-because he raised me well and I can be as stubborn as he is! Learning not to fight or try to reason with him but instead take the reigns as caretaker was an adjustment. Between his meds and improved mood and my understanding of my new role as caretaker first, daughter second, we were able to move forward to a better mental place for dad. For me, it's been hard to adjust to being the bad guy and making decisions he isn't going to be happy about, like getting rid of his car. And it's tricky because the Alzheimer's makes things murky. I am always trying to be careful not to do too much for him or do something just because it's easier for me. Now, when I come to uncharted territory, I put on my caretaker cap and leave the daughter cap on the shelf. I try to see it clinically and I do research to make decisions that are the best for everyone.

Things are better now, three years in. I feel blessed that he's in as good a place as he is. He doesn't  fight much with me anymore or buck my "authority", but he still makes hurtful comments sometimes. Still calls me the Nazi, dictator or whatever the current slam. I try not to let it get to me, but the daughter inside winces.  I tell myself he wouldn't hurt me if he wasn't hurting so himself, and I know that's true. I know the old dad, and if he could reason or see things clearly, he wouldn't have waited as long as I did to step up if things were reversed. My struggle has been to realize when I need to step up and that has changed over the years. Every so often a new challenge arises and I need to shift into caretaker mode. But these days I enjoy many more days with my daughter cap on while we enjoy the simple pleasures of a couple of geese!!

Keeping it Real

In the spirit of keeping it real, I have a confession to make. I'm not enlightened or have all the answers. Bet you knew that tho, huh? If you know me at all, you may even wonder who the spiritual chick is who writes this stuff! All that spiritual stuff I wrote about, how you just have to obey and give it all to God-that stuff-it's all true and I really believe it. But sadly, I don't do it all the time. This is real, and I am human. And the real, human side, fails.

A few days ago I returned from a beautiful vacation. My husband and I have been married 36 years and these last year's have had their share of struggles. We had a little extra cash and decided to pop for a vacation to Cancun, Mexico, at a lovely resort there. It was fabulous. When I talked about respite a few posts ago, I only wish everyone could take that kind of break. Sun, sand, surf, food, drinks and entertainment to your hearts content. I did nothing I didn't want to and someone else fixed my meals and made my bed. Everyday. It was awesome. Until we came home...and then there is reality.

After traveling all day, getting home a 1 A.M and not getting enough sleep because I took my brother to the airport the next day at 4 A.M., reality set in. And I had a huge meltdown and pity party. Rather embarrassing, looking back. I was nasty to my husband, angry that I had to serve everyone while I wasn't feeling good. (which I really didn't) I called my daughter and cried that I was tired of caretaking and that the only solutions to that both sucked: putting him in a home or his death. I felt extremely sorry for myself. My daughter may have thought I was nuts, but never said so. She may, in fact, know me by now? She just listened and offered to pray for me and I felt comfort. I did ask God for help, but I admit it didn't look to hard for any answers. I was exhausted and sick and let my emotions run wild. (I'd been sick my whole trip, but sick in Cancun beats the heck outta sick in Ohio!)

And then sanity spoke. Reason once agin made herself known.  It stunk to come back from such a great vacation and back to caretaking, but the one I care for can't even travel anymore. Travel was the one think he loved almost as much as my mom. Here I was whining after a great get away and he will never see far flung places again. Suddenly I was so ashamed of myself for feeling that way. It doesn't happen very often anymore, but this was pretty bad. I really didn't want to "caretake" anymore. A day later, I feel privileged to do this work. And that's real too. One day its awful and you hate it and the next it's not. Emotions are fickle. You have to pay attention to them sometimes, but you also have to know when they are not helpful. They are not my reality. Not my where my strength lies. If I hadn't called my daughter, said these things out loud and heard their selfish hollow whiney sound, I might have entertained them longer. I'm glad I acknowledged them and saw them for what they were. They are legitimate, but held up to the truth they lose their power over me., I don't mean to downplay the burden of caretaking. I know how hard it is. But it's just as hard or harder to be the one cared for. The one for whom life's light is growing dim.It's true that I have a lot on my plate, but I really have learned to turn it over to God in whom I find my strength. It's also true I feel confined, but I also know my dad is really confined and that I still have freedoms and abilities he has been denied-not by his own will-but by his age and diminished capacities. I have chosen this, I still have a choice. And for me this will end and I will again have my freedom. There are many out there for whom caretaking will not end any time soon. 

My focus was wrong. It was on me and the negatives. When I turned my focus off myself and my burdens, and gave thanks to God for the positives, my perspective and attitude changed. I gave thanks for family that helps. I gave thanks that he can still walk and hold a conversation. I gave thanks that we can spend time together, and go out to lunch once in a while. I gave thanks that he has what memories remain and that while I may hear the same stories over and over again, these are his memories and are important to him, and we get to share that with him. I gave thanks that I am in a position to care for him. And the list goes on.  And as I made my list, I felt the dread and sorrow leave. 

I don't want to diminish my feelings or give the impression that this isn't hard and as a friend put it "those feelings are valid and you shouldn't feel bad for feeling that way". They are valid. But the things you feed become the things that grow. Sure it's tough sometimes. But it's been worse, like when he was ill, and right now we really are in a sweet spot and I honestly am feeling pretty lucky overall!! Today. Glad I didn't write this the other day. And in my defense, I had been sick all through my vacation, just traveled 12 hours and hadn't had much sleep. All of which contributed to my little melt down.Exhaustion is a caretakers enemy-even though I'd just had 7 pretty restful days-exhaustion is quick to take a swing at you, and usually levels a pretty good blow.  I later had a little girlfriend time where my friend who is a teacher said she gets a little down when summer ends and she goes back to school.  It's not that she doesn't love her job, but some years are hard and a job is, well, a job. Caretaking is work. And while its important to take a break and get away, sometimes it stinks to come back and at the same time it's good to be home!! That's keeping it real!