Portland, Oregon

Portland, Oregon

Monday, August 29, 2016

The Past Comes Calling

Today I will begin with a bit of background. My mother died of ovarian cancer that invaded both her colon and her bladder. The colon 'fix' was a colostomy. To 'fix' the bladder a surgeon went through her back and surgically inserted a tube directly into each of her kidneys. The tubing was brought together into a Y that joined a central tube that drained into a catheter bag. We cared for her in our home and she died there. My father did not thrive after her death. Six months later we again called for delivery of a hospital bed, and home health nursing. It was back to a catheter, and for him it was diapers. He died seven months later, also in our home.

I almost never let those memories out of the space I've kept them locked all these years but last night Bob opened the door and let them out.

I suppose he'd been thinking about those days, and wanted to talk, I did not. It may have been good for him but it was not good for me. I did not sleep well at all after our talk.

I can't let my mind go there. If I do I'm going to be no good to either of us. I must focus on one day at a time. I so hope neither of my children have to have this experience with me but we don't get to choose how our lives will end.

There are a few things I learned from my mother that I hope I can remember.

1) Always be pleasant and express appreciation to caregivers. They're doing their best and dealing with a grumpy,  complaining patient is not the treatment they deserve.

2) Keep current in what's going on in your community and the world. Don't let the world pass you by.

3) Mother was completely housebound the last 15 months of her life but she continued to have visitors every day of that time. I decided it was because she never talked about herself.  She was interested in those who visited and wanted to know what was happening in their world.

She was a little vain and didn't want her visitors having to look at a catheter collection bag hanging on the side of her chair. I bought pastel gingham check quilted fabric, eyelet edging, and some velcro. I made myself a pattern and sewed some bags to cover that bag. She could just drop her catheter bag into one of those bags and close the top with velcro and no one saw anything but a cheerful gingham bag. I was the only person that knew all the horrible things that went on under her clothing. 
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Yesterday I finally got time to write a nice review of our ER experience on YELP. I've mentioned before that hospitals now receive some funding based on good reviews from Medicare patients. Unfortunately people are much more likely to write a review if they're unhappy than to write one when they're pleased. It's a small thing I can do to say thank you to our hospital system for the good service we receive in their ER.

We feel very fortunate to have Medicare and good insurance.  We're also very grateful for the provisions of the Affordable Care Act.
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On the subject of 'Obamacare,' let me say just a word. If you've been led to believe it's going away, put that thinking behind you. I think all Republican candidates as well as Republicans in Congress continue to say they will repeal Obamacare, not. 

Very recently I took the time to research what it would take to repeal it. First, they have to get a Republican in the Whitehouse!  Given that, it can be done, but the chances of Republicans being able to steer that very narrow path is indeed slim, very slim. But let's pretend they accomplished the path to repeal it, they have no plan to replace it. Obamacare has been the law now for six years. In that six years Republicans have repeatedly voted to repeal it. All votes have failed. Wouldn't it have been better use of their time if they'd looked for ways to improve it?  Nobody thought it was a wonderful plan when it went into law. Every lawmaker has a choice to help in making it better or continue the futile effort of repealing it.

Finally, if Republicans reach the goal to repeal it, their party is in shambles. In six years they've been unable to agree on a plan to replace it. What makes you think they will come together now in agreement?

29 comments:

  1. Obamacare will never be completely repealed nor should it be. It does need some "fixes" though to get it out of its own financial difficulties.
    One thing to bear in mind about Bob is that he isn't your parents, nor are you. Be careful about dwelling on the wrong things. Hope I don't sound preachy but keeping up a strong and dare I say cheerful front will be essential to you both.

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    1. It's never good for me to dwell on the past. I do much better looking forward. It's good to take what instruction the past offers but quickly move on to face the future

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  2. "One day at a time" is the caregiver's mantra that will keep you going. Hold on that mantra for dear life and it will get you through the challenges ahead. At least there will be no real caregiver surprises for you with Bob. You are strong, Linda. Never forget that!

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    1. Yes we are indeed well aware of what's ahead. If I don't look back I do fine. I get up each morning and say I only have to do today. Most of the time I'm fine but he sure threw me for a curve bringing up those old memories.

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  3. I enjoyed reading your informative post. I am so sorry to read about your husband. I do think one day at a time is the best way to live life. Visiting the past can be so painful at times, but if those visits inform the present, they are good visits to make.

    I agree with you on Affordable Care Act. Time should be spent on improving it. Unfortunately, I don't think the Republicans will allow that. They work to hard to make dysfunctional in ways that could be changed.

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    1. Thanks Sally for dropping by. I know you speak from experience in the loss of your daughter. Past experiences do often prepare us for future experiences. I hope Bob will not bring the past up often. It helps some people to think about the past. It is not helpful to me.

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  4. This post humbles me. I thought I'd shown courage in the help I gave my mother toward the end of her life, but what I did is minor compared with the care you gave your parents. I can see why you had hoped not to gave to discuss it.

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    1. I do much better if I don't spend time looking back. I learned from dealing with mother you can do what you have to do.

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  5. You've learned a lot from your past experiences with your parents. Most importantly, you are a compassionate person. I'm sure Bob is worried about his future, and how his declining health will impact on you. One day at a time; you are absolutely right. It's called survival.

    I love that your mother knew how to engage people by talking about them. It made it very pleasant for those visiting, and your mom benefited from the socialization. Thanks for sharing your story.

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    1. I know Bob is worried. I know he thinks about our experiences with my parents. He deals in memories much more than me. I believe I'm better off facing the future than I am hanging on to the past. Probably the reason I'm a Democrat, not a Republican.

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  6. You deserve a medal for looking after your folks in your hose to the end. It's not easy

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    1. It was incredibly hard but I don't think I realized how hard until it was over and the dust settled.

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  7. Wise words about the Affordable Care Act - or do I just think that because I agree? ;o)

    There's a lot to be said for compartmentalizing your thoughts. I don't see much point on dwelling on the negative and worrying about things that may not work out the way you think they might.

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    1. I believe there are some things you can't get through any other way. One day at a time you can take it but your goose is cooked if you look too far down the road.

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  8. I don't know, I know it sounds harsh, but at some point you might have to lead Bob's thoughts elsewhere for your own sanity. You have to set a few boundaries, no matter how gently, but you must do that. At the very least, with all you have handled and are handling NOW, you must protect your heart a little bit too.

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    1. I agree Kailani. He surprised me this time but I'm on guard now. I won't let that happen again.

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  9. I always think I could never be a care taker like you have done with your parents, and may again have to do. I so admire people like you. But then I realize we all do what we have to do when and if the time comes.
    I love your mother's example: don't talk about yourself, listen to and learn about others.

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    1. Linda, if it's Tom you'll rise to the occasion. Strength often doesn't come until the moment you need it. That said, not everyone is cut out to be a caregiver at that level. Also, I never promise Bob I won't put him in a nursing home. I only promise that if there's any possible way to keep him at home I will.

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  10. I took care of my mother until she went into a nursing home. I knew my limit would be the day she could no longer make it to the bathroom on her own. In truth, that day was perhaps a bit beyond my limit of ability to cope. I believe I did what I had to do for myself and for the other people depending on me at the time.
    My regret is that Mike stopped his treatment and refused to fight for life and I know well that it was because he didn't want to put me through the caregiver role again. Partly anyway, he didn't have much tolerance for being sick himself, at least that is what I tell myself.
    Bob is clearly fearing the future based on the memories of the past. Just keep reassuring him that that was then and this is now and no one really knows the future. Let him know you are there for him now and all the nows you can imagine

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    1. I think incontinence is about the most unpleasant. That one really tests me. I suspect your husband did not want to be a burden to you but neither did he want to live in the shape he knew he would be in. I can respect that. During one of my mother's surgeries that was worse than expected a friend asked me what I hoped would happen. I told her I hoped she would die on the table, because I knew her quality of life would be so bad if she lived. She lived.

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  11. I cared for my father 24/7 for three years, and when I couldn't physically continue, we hired another caregiver, and I did another four years of share-care. I do not talk about those times, and I try not to think of them. Like your mother, he always looked nice, and few people ever knew what it took to keep it that way. Like you and all caregivers everywhere, I was the man behind the curtain. And you are so right about being nice to caregivers. I will be sweet as sweet can be.

    I, too, am grateful for Medicare and an excellent supplement. How lucky are we!

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    1. I can see you have walked the path I've walked. You understand why I don't want to visit those memories again. I can fully imagine getting to the place you can't go on physically. That could happen to me, I know that.

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  12. I truly think they should've made Obamacare a single-payer system like Medicare. In fact, what would be wrong with everyone getting basic coverage from a Government single-payer system and then people who want extra coverage could pay for it? The cost would be cheaper for all.

    Read your post on transgender bathrooms too. Laughed thinking of all the hulabaloo over nothing. While traveling recently, McDonald's had a sign on the woman's bathroom saying "this is a multi-gender bathroom as the men's bathroom is closed." I offered my husband some lipstick to wear into the women's room, but he declined and strolled right in. The other woman didn't blink an eye. No big deal.

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    1. Obamacare will no doubt eventually become a single-payer system. It will only happy after Republicans have run out of ways to block it but that time will come.

      Loved the story of your husband and the McDonald's bathroom. Amazing how Republicans panic over sexuality.

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  13. I understand Bob's fear of putting you through an ordeal. Men are raised to be the providers and yes "caregivers". It is their strength. When my Dad lost that ability to take care of his family, he felt he had failed and dreaded what his wife and children had to go through. He felt failure and shame--much as we will feel if we reach that stage. I so feel for you both.
    As a recovering alcoholic, I can only restate what you and others have said all ready---one day at a time will get you through.

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    1. This episode was difficult for both of us because it was so unexpected. Things are looking up finally. We move on now with our mantra of "one day at a time."

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  14. Oh my. So much for you to handle. I don't know what will happen about Obamacare. I suspect you are right. Whoever wins the White House, please do something about the cost of drugs.

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    1. Drug prices are criminal in this country, absolutely criminals.

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