Are you a Caretaker ? Do you spend most of your waking hours taking care of someone you love ? Do you get overwhelmed on a daily basis trying to juggle and keep track of appointments, meds, clothes, bills, filling out undecipherable government forms, shopping, cooking, cleaning, worrying, praying, crying, hiding your feelings, being cheerful, lying to loved ones, and just plain being frustrated ? Do you feel trapped even tho you would not want to let anyone else to take care of the one you love ? Do you feel guilty about any part of the above ? Welcome to my world.
Most of my life I was very selfcenter, independant, a go-getter, a tradesman, involved in my community, a sexual being, and enjoyed life. I was a Father, a mentor, a friend, someone who enjoyed the company of others, a lover of the ocean and avid sailor, and even a person addicted to Bingo. I miss all of those things more than I can tell you.
Would I give up what I'm doing now to regain them ? Never. I made a commitment over 5 yrs ago to be there. I'm not married in the legal sense, but I might as well be. For Better or Worse means much more than most people can imagine. If you are a Caretaker, you know what I mean.
If you are a Caretaker you may understand what I mean when I say some days I feel like I'm in a prison. My Sig. Other, we will call her Tiny from here on out, became ill about a year after we started living together. We were the best of friends for over a year before it got romantic. We did it the "right" way, we took our time getting to know each other and had few secrets. We shared the deep dark stuff. She is the one person who knows it all about me, and loved me anyway. I can say the same in reverse about me to her. Finally in my late 40s I thought I had hit the jackpot. The search was over. Now was the time to live happily ever after right ? Yeah right.
Do I sound bitter ? I don't mean to. Maybe I am a bit. We are a old fashioned type of couple. We were very comfortable in our relationship of a fiftys type. We enjoyed the old roles of Me, the Boss, her, the Wife. We discussed everything, but I had final say in everything, and it was understood, even celebrated, that we lived that way. It was a choice we made long before getting together, part of who we are. It was her role to take care of me in almost every domestic sense of the word. Cooking, cleaning, shopping, tracking the bills and appointments, sending out the birthday and xmas cards and presents and all things along those lines, and she reveled in it. It was who she is. My job was bring in the money, pay the bills, do the basic guy stuff like mechanics, grass cutting, heavy lifting and anything else she couldn't or didn't want to do. We knew our places in the relationship and it was exactly the way we wanted it. Then she got sick.
When Tiny got sick I had a great job making good money. She got pneumonia that went on for months because of her allergys to antibiotics, it finally got us to the ER one night. While in the ER we overheard the Drs talking among themselves. One Dr was asking the other if he saw the Cancer in the Xrays of her lungs. The other Dr. hushed him up quickly because Tiny had no ins. they didn't want to get stuck treating her.I went ballistic for all the good it did. After months of trying to get her treatment in Nev., losing my job because of lost time, We moved to Ca. where she got great treatment, but we lost everything I had built up over the years. While the Cancer has been put in remission, if not cured, her health continued to fail. To top it all off I got sick. I suffer from what some call a cluster migraine, a migraine variant, a migraine that never goes away. I wake with it, live with it, and go to bed with it. I live on minimum meds because if I took what I need, I could not care for her. I have had it a little over 3 years now. The Dr. wants to do surgery, but I can't take the time or be laid up and still be there for Tiny, so it will have to wait.
We were hit monthly it seemed, with new problems with her health. First it was Chronic Pulmonary Obstruction Disease, then Chronic Heart Failure, Emphazema then Diabetes,last month she had a Stroke , she was put on Oxygen 24/7, Depression, and the list goes on and on. In about a year and a half we went from having the ideal relationship to one of Caretaker and Patient. I became a nurse instead of a lover. I became the chief cook and bottlewasher, the washwoman, the maid and nanny. I don't know which it has effected more. Tiny, a woman who as a single mom who raise 3 great kids, who loved to cook and clean and take care of the man she loved, and very independant or Me, a guy who hated cooking, cleaning ,etc. Well that was kinda dumb, after all she is the one dying and almost helpless.
Before, if you haven't already, you jump to thinking I am wallowing in self pity, I'm not.( Not at the moment anyway ) I know with all my being if it had happen to me instead of her, she would be doing everything I am. She would not shrug these dutys. We made that commitment and we meant it.
So you now know the basics, I tried to keep it short. Where do we go from here ? The $64,000 question. We know she is terminal, but we do not know long we have. We have passed several deadlines and could go on for years, or she may pass in her sleep tonight. We moved to a small town on the Central Coast of Ca. that had the Drs she needed and we could afford. We live on a fixed income which allows for no frills. We have no friends in this area and what friends we used to have have fallen away for whatever reasons. Oh sure we still get the few emails and xmas cards, it's not that they don't care, they feel helpless too. Her kids are grown with lives of their own, and live hours away. I used to be able to put Tiny on a train to visit for a week or 2, but that is no longer possible. We tried the airlines because of the shorter time, but she was strip-searched the last time, both ways, during a trip to Wash. State. I guess the wheelchair looked like a threat. Between her health and the cost, it can't happen anymore. Those periods gave me a much needed break. Time to do those things I couldn't do with her here. The heavy cleaning, a long walk on the beach, a nap, a deep breath if you will, small luxurys you don't miss until you can't do them. Prison almost sounds good to me some days.
Yesterday was a sad day at Dkos. There were several diarys about the loss of loved ones. I had already started this one when I read the first about Paul and Mack, then there was one about Tad, finally Dale posted the last diary under Janets sn. The emotions ran rampant through me. Part of me felt some relief for those that had gotten to say goodbye. Other emotions followed quickly and tumbled over each other. Guilt was in and out of my head all day. Guilt for being healthy, guilt for not being better at giving, guilt for my own selfish feelings. Still, all in all, I could never walk away, nor would I want to. To think about someone else doing the imtimate things that would degrade or make Tiny feel less than loved drives me. I may die alone and lonely but while I can still suck air she won't have to go that route, no matter what.
That brings me back to the title, "The Caretakers Prison". It's not a prison with bars. There is no set sentence nor time off for good behavior. There is no hopes for a new trial. Prison may seem a harsh way to say it, but some days a prison is exactly what it feels like. More important is that it's not one that I would want a early release from. I am more than willing to do my time . Like some of those in Prison, I can still find some good things to help pass the time, and am learning new skills. I could escape from this prison, but like any escapee, I would be living on the run. What I would be running from is me and who I am. Instead of looking over my shoulder all the time, waiting to be caught, I would be doing nothing more but sentencing myself to a worse hell. There is not a worse hell to live in than knowing you abandoned someone you love, and who loves you, for selfish reasons. My mistakes as a young man taught me that lesson, the hard way, and I swore then, never again.
Dkos is my daily lifeline to the rest of the world. I log on as often as I can. I write a few diarys about things that matter to me. It's been noted more than once I'm not very good at it, but it keeps me sane. Some of the diarys here have been a great source of info that help us personally. Other diarys serve as the distraction I need to stop worrying. Believe it or not, the national turmoil of the last couple years, while driving some nuts, keep me focused in small ways. To be able to come to Dkos and read, rant, share, or even help someone else has been one of the biggest blessing, and I am grateful to you all. I am grateful to Markos most of all, for this site. I was more involved over at TPM until the format changes that made it feel less of a community. I hope that never happens here.
If you waded thru all of the above and are still reading this, and are a Caretaker, maybe you would care to share what gets you thru the day. What keeps you sane ? Can you share the way you found to wade thru the Medicare madness, found a nurse to come in and give you a break ? Maybe some easy recipes you like and don't cost much ? If you are woman , maybe you could hip me to some lil treat I could do to make Tiny smile that I would never think of. I think you know what I mean, the little important stuff a guy would miss. Guys, don't be bashful. I'm sure you can help me out here. I know I'm not the only male doing this, so talk to me. Don't let the sn fool you, it was a gift from Tiny one morning before my coffee. I'm rarely cranky after I have had a few cups.
I close by just says thanks for letting me be a small part of this community. Every diary I read means something to me. Every time someone answers a comment, or visits one of my diarys it helps me feel connected, and to get out of myself. Tiny has read this and she asks to say Thanks from her for helping keep me kinda sane too.
P.S. If you feel the need to just vent, please, have at it. I can't think of a better place to let it out. We can't hold it in all the time or it will fester. I'm sure many of us will relate, you aren't alone out there.