This is an open letter to all caregivers. I want to answer some of your messages you have sent me. I apologize for not being able to respond to each and everyone individually, but I want you to know that there is usually a common theme in all of the notes I receive. I also want you to know how much I appreciate you taking the time to share your stories and to send me tidbits of info. and advice. I hope this blog helps you on your journey.
I am not in a super good place right now. I go through spurts. Sometimes I see a positive future and feel like I am making a huge difference. Other times I only see how awful our lives are right now and how terrible they will be for the foreseeable future and beyond. I think about watching Jim decline and dealing with the financial woes, the emotional upheaval and the overwhelming sadness that envelopes us. I sometimes scream at the top of my lungs, “I can’t do this anymore.” I never say it isn’t fair, I just say I can’t do this anymore. When in reality I can, I just don’t want to.
I am often told to take care of me. Very good advice. But, I am not sure how I am supposed to do that. Am I supposed to quit my full time job that causes me stress? Then I could exercise daily and have time to fix healthy meals and time to take naps and have leisurely lunches with friends to make sure I am relaxing. Am I supposed to hire someone to come watch Jim and take over the household? I understand the sentiment behind the words. People care and sometimes the only thing they can offer is encouragement to take care of me. Easier said than done, knowing I need to follow the words of wisdom. Each of us needs to heed this advice, once we figure out how.
I have realized a few things about people. One being that some people just suck. Big time. I am not trying to be negative here and I am not trying to call any one particular person out. But I read story after story of promises not kept, hurtful words said and the complete isolation some caregivers have come to face. You know what? Even with all of the wonderful support and help I have received, I have the same things happen. I try really, really, really, really hard not to dwell on such things. Most of the time I am able to put a positive spin on different situations…..like when the person “bought” a piece of furniture from us, in the process we ruined our kitchen countertop moving it out of our house, and they never paid. When the kids asked me about it (many times) I explained to them it was a great $50 education. When Brad said we should call the cops because that is stealing, I reminded him that sometimes it is better to learn a lesson than to worry about how you learned the lesson. Did I mention how hard this is sometimes? There have been “friends” who have completely disappeared. I just don’t write about them in my blog…but I have had it happen too. I have the friend, who I once was close to, even taking a weekend vacation together, who now sees me and doesn’t speak unless I do first. You are not alone in this. I want to remind you to not focus on those that have abandoned you in such time of need, but to appreciate even more those that have surrounded you in love. If you look hard enough at all of those encouraging you and helping you, the vanished “friends” will fade from your view and your worry all together. This takes an enormous amount of effort. Just like everything else, sometimes the vision is easy and sometimes not so much. Focus on all that is good, even when there doesn’t seem to be much.
Last week I had a really, really bad week. For lots of different reasons. Then I got a terrible scratch on my shin from the cat while I was trying to give him flea medicine, I burned my arm quite badly AND got in a teeny tiny fender bender. ALL IN THE SAME DAY. It was also the same day Frances won her student council election and the same day a mysterious box of chai tea (I don’t drink coffee) was left on my porch. So, at the end of the day, I could focus on the 3 horrible (and a little painful) reminders of how bad my life is right now, or I could celebrate how awesome it is to have a friend who would go through so much trouble and a daughter who worked past her fear of losing and became class president. Again, not easy, but one would take me down a dark path that would only prolong all of the bad things and one would help me raise my children in a happier home. The choice was mine. This is not to say that sometimes I don’t sit and focus on all the bad, but I try to be cognizant of the good too. I think I am really just having to train myself. Otherwise, I am scared of where I will end up and in turn where my children will end up.
Some people vanish only to appear at just the right moment. Just when the small circle of friends you feel like you inundate way too much with your sob story have done their part and you are scared if you call them one more time it will be too much, a random note, e-mail, dinner, invite, hug, phone call will happen almost miraculously from a “lost” acquaintance.
If you can picture viewing a moving black circle from above. At one time I felt like I was in that circle, but it was HUGE. Wide open. Ready to go and conquer the world. Anything was possible and there were lots of other circles coming and going. Some got attached and came along for the ride. There really was just lots of circles always around. Some came and went. Through the past year or so, I visualize that circle as growing smaller and smaller, with fewer and fewer other circles in view. Just a few. And as my circle grows smaller, my mindset changes and my focus changes. Frivolous things become just that, frivolous. Mean, disrespectful, untrustworthy people become easier to spot. Good, reliable, steady comrades become more precious than gold. I worry terribly about the friends I have getting worn out, tired and bailing if this situation continues on for years and years. That is why I try really hard to “spread the love” in terms of who I call and how often. It is understandable. I ask you to remember back to before the diagnosis. What kind of friend were you to someone that went through an ordeal? Did you think about calling or stopping by, but you just didn’t know what to say? Did you intend to but never had time? That happens. Most people have the best of intentions. Often times they just don’t know what to say, how to say it or when to say it. I can tell when I see someone who is uncomfortable, not because they don’t care, but because they do and they don’t know what to say. Give those people a break. Start the discussion. Let them know you have missed them and if they want to help, they can just come and sit with you. Maybe they don’t want to hear every detail of how bad your life is now, but they just want to be your friend. Let them. That is who they are and how they can help you. Don’t try to force them to be someone they aren’t and in the meantime you will re-kindle a wonderful relationship I am sure you really need at this time.
I give you all of these words of wisdom in the hopes that I will be able to give you a different take. It is hard. Hard to see outside of our window of despair. Just try. Then let me know how it goes. I will do the same.