Miz S has summed it up quite well, I think.

And ever so much more eloquently than I can at the moment (or, likely, ever). I’m not sure why that woman occasionally pays good money to see a therapist because she gets it all out there without helps or prompts.

“But goddamn fuckity fuck shitty shit mcfuckster WHY WON’T THEY LISTEN TO US? WE’RE SMART AND WE KNOW THINGS. Last summer, and my brother and I elected ourselves to go have a Serious Talk with them about moving while they were still relatively healthy, BEFORE there was a health crisis. They were dismissive and annoyed with us.”

Around here, it took a stroke and a long dark night in the snow on the freezing ground to pry Bud loose and really, at that point, what could he say? “Please don’t airlift me to the ICU 150 miles away because I have to fill the bird feeders and install a new pump today?” No, he could not say that. He couldn’t speak. There’s probably something sinful about being glad your parent is so incapacitated and near enough to death that you reach the ABSOLUTELY NO OTHER OPTION phase. Bud was as close to the proverbial ‘float ’em out on an iceberg’ as one can get. And now? Now he’s pissed at those ‘rat bastard’ neighbors who, by some miracle, happened to choose that morning in three months to wander the half mile over to his place with a plate of cookies and discovered him blanketed in snow. When I commented on this bit of good luck Bud replied, “Ya, and they turned me in.”  Turned him in? I guess that’s what you call carrying someone into their home, calling 911, submerging them in warm water and washing off all of the shit while waiting for help to arrive out there in the wilderness. They brought him some cookies and then turned him in. The crime?

The crime seems to be growing old. As much as we fling elder jokes through our e-mail lists, as much as we are charmed by purple hat and red suspender societies, as much as we swear we will do it with grace and style and energy, wit and good humor- well, I don’t believe it any more. What really happens is just what is happening to Mary’s parents and Bud and that whole dining room of wobbly, drooly, largely senseless people at Evergreen and Bella Vista retirement homes. And there’s nothing green about growing old and there’s no good view ahead, so even the names are a lie.

Here is the latest, in a very long series, of Catch-22 situations. First, a person (in this case, Bud) has a stroke. He has insurance-Medicare and supplemental BCBS- that pays for exceptionally wonderful treatment. State of the art. They float him in a cocoon of warm water, bring him back from hypothermia and frostbite and begin physical rehabilitation so he might regain some of the use of his right side. But from the first few days, it becomes clear that the family needs to find a longer term care facility. Hurrah! Laurel finds a very nice place right near her in Oshkosh. It is 400 miles from his home so Lost Loon Lodge gets drained, shut off and shut up and the decrepit cats come live at Laurel’s, much to the delight of her dog and two cats.  So now, the GOOD news is that Laurel can work 45 hours a week with nary a sick or vacation day left this year after spending so much time in the hospital with him, she and my brother-in-law can leave work and go spend every single evening helping Bud adjust to his new place. She spends her lunch hour on the phone with nurses, therapists, Social Security, Veteran’s Administration, BCBS, doctors. She spends her late nights filling out paper work. She spends her weekends taking Bud on outings and looking at other possible places for him to live. Because, once he runs out of the 120 days of therapy that are covered by his insurance he needs someplace he/we can afford.

The cost per month, once off insurance, is 7500. Bud gets 2400 a month between SS and a small teacher’s pension earned for a lifetime of teaching. If Bud only got 2200/mo he would qualify for Medicaid and they would pay for the balance of his expenses. But he makes 200./mo too much. So he doesn’t qualify. For anything. Laurel searches, searches, searches and finds another really nice 1 bedroom assisted living apartment and takes Bud over to see it. “NO. The people here are snobs.” (He hasn’t met any of them but he just knows that they are. He refuses to move and now Laurel becomes the ‘rat bastard.’ Not really. Bud knows how much she does and he loves her dearly but now the issue is that he doesn’t want to move again.

As hard as it was to leave Lost Loon Lodge he now knows the staff and some residents where he is. He likes his therapists. In fact, he would like to marry a couple of them. (who was it that recently wrote, “cuckoo, cuckoo,cuckoo”? Why, the eloquent Miz Mary!). He has people to talk to for the first time in almost three years. He likes his modest little room right near the dining area and the nursing station where he can see everyone come and go. He has a “job” where he pushes newly admitted stroke and rehab patients down to the PT room, almost never getting lost. And they like him- enough that they are working hard with Laurel to try and find a spot for him in the same facility that he can afford but still, he will have to move to a different unit, an assisted living unit. Another Catch-22. He can’t go to assisted living unless he can adequately handle all of his own nursing care himself and for Bud, that means stoma care since he lost his bladder to cancer 25 years ago. Bud insists that he has been and can continue to handle this on his own but we all now realize why he was having repeated urinary tract infections and skin break down while living up north. Duct tape. Yes, you can never have too much duct tape and apparently, as far as Bud is concerned, it works well on all kinds of plumbing.

Daniel went with me to Oshkosh after his concert in Chicago. He had been feeling upset and guilty about not seeing his grandpa for a long stretch because of his tour schedule, and he just now sent me a note on Skype thanking me for taking him up. He has no idea how grateful I was to have him along. Poor Dan. Not only was he drop dead tired after 7 countries and 70-some cities but he arrived in Oshkosh to discover that Bud had arranged a marriage for him to his speech therapist. Laurel had warned us on the phone but we had no idea how far advanced Bud’s agenda was. We arrived mid-afternoon to find that Bud had been nervously pacing around all day waiting for us and hovering over Casey to make sure he could introduce her to Dan. His aide said he skipped lunch in anticipation. At some point he had expressed concern to Laurel that we might have to get another hotel room for Casey because it might not be appropriate for them to sleep together the first day they met. Cuckoo.

The thing that I find so compelling about Mary’s post about her parents is that she is precisely right on every count. “How mean is it to be mad at these two sweet old people? And they really are sweet, and so grateful for everything we do for them. And I know, I KNOW that just a few weeks ago I was all “Oh, it’s a privilege to care for my elderly parents” and the thing is, I TRULY BELIEVE THAT.”

She’s right, too, that your siblings will be your salvation in these matters. Being able to talk with them, cry and laugh with them- that will be your salvation. The circumstances of my life were such that I had my father and then I had Bud. My father was, literally, lacking in many ways for a number of years and Bud filled in- to an ungrateful and somewhat resentful teenager. Then my father came back around and was a wonderful grandfather for a decade before he dropped over dead at an early age. During that time my children also enjoyed Bud as a grandpa. In the final years of my mother’s life, Bud cared for her in all of these ways that he is needing care now. He cooked for her and cleaned her and loved her until her last 10 days. So, even if I didn’t love Bud as a father, I owe him. But I love him dearly. And I feel guilty and sad that I can’t ease Laurel’s burden very much. And pissed that he isn’t able to be more cooperative. He’s started crying when we say goodbye and then he’s embarrassed about that and doesn’t know why he can’t control his emotions better. Laurel is happy to have this time with Bud and makes no bones about feeling blessed that he is close to her now. But I can see her fatigue. And I saw Daniel’s anxiety and when he writes me now, “god by the end of that I felt like everyone was old” I know exactly what he means and what he fears. He and I spoke on the way home about better scenarios for elder care and families, different possibilities, a more sensitive and less bureaucratic system of health care that is going to be essential, considering the changing demographics of our society.

Today, I’m resting up, unpacking wool, cooking for Rich, snuggling in with him and the cats and feeling happy to be home after such an intense week. And there’s a little part of me that is wandering around putting away the groceries and muttering, “Lord, just take me now.” Oh, and Mary? You know how sometimes you sort of fall in love with your therapist? Thanks for the session. I mean it.

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17 responses to “Miz S has summed it up quite well, I think.

  1. Wow. I’m glad you’re back. I said to Don before he left that we had really been without that care of aging parents. His mother was chronically ill and his dad took care of her at home until she died. My father died when he was 54. My mother died at 80 after a short bout with cancer. She had had it for a long time, but her symptoms appeared to be those of aging.

    When she left the hospital, she went to the nursing home and was gone within that window when Medicare paid everything.

    I’ve already told my kids they’ll have to put up with me. I tried to get long-term care insurance, but there were too many things for me to qualify. Some have said that it’s not worth it any way.

    Life is hard. Hugs to you.

  2. This takes my breath away, vicki. We’re considering in the most serious way having my mom move in with us. She’s 83 and not needing major care at the moment, but we know it is the inevitable future. We thought about assisted living facilities, or whatever they call those things for people who can still do for themselves, but shouldn’t be alone 24 hours a day. But she doesn’t really want to be in one, and we don’t want her there either. Yeah, we’re scared shitless about it, but my sister is planning to move close by, and we can all take care of mom for as long as she has.

    I’m going to go over and read Miz S. I have a feeling I’m going to be needing her wise counsel over the next few weeks and months. Anyone who can write with as descriptive flourish as that second paragraph is required reading.

    Thank you for writing all of this. We, daughters of the elderly, need to keep in touch.

  3. I hereby nominate Laurel for sainthood.

  4. Right back atcha, darling. I would say more, but have just stopped at home for a minute in between family stuff. We’ll manage this, somehow. And let’s hope the situation is less bleak when it’s our turn. xoxo

  5. I am not there YET with my parents, but will be the primary caregiver, since my younger brother has a young child. It’s tough to contemplate and will be even harder to live through.

  6. I second the nomination for Laurel.

    Poor Bud, and poor family for having to deal with the additional costs, etc, and the fact that he’s just over the qualifying line for Medicaid. Can he cancel the teacher’s pension? I guess not. I missed having to do some of this, since my mom died while my dad was still healthy enough to care for her, and he remarried and was (sort of, barely) cared for by his 2nd wife. We had to care for mr. kenju’s mother, and she resisted going to an assisted living – but you know what – once she had been there 2 weeks she was the belle of the ball and loving every minute. She asked why we didn’t put her there sooner. – which made us livid – since she resisted so forcefully.

    I wish I had some answers for all of you; suffice it to say that you and Bud will be even more in my prayers now.

    I won’t say…”Lord, take me now”, but I will hope with all my being that I go quickly and never become the burden of my children and theirs.

  7. Oh Vicki–this touches me in so many ways. My mother died–6 weeks after heart valve replacement–of a staph infection when she was 72. I deeply resented that loss, but she was spared the indignity of slow decline. My dad, now 90, and THANK GOD remarried, is in good health. But I dread the prospect should he be in bad health. I do thank God for my step-mother.

    But then there’s me and my husband. I am 64 and wonder of course what my health will be as time keeps passing. I hope for a swift demise. Hard on the family that remains, but so much more blessed.

  8. Ouch. What a mess of things. Blessings to Bud, Laurel, and you and Dan as well. So glad you are home. I bet Rich is too. Can’t wait to see you. I am all put out because I am going to miss the pumpkin class.

  9. Cathy- nooooo! But you’ll be having fun and we can have a private pumpkin class and tell me about your trip.

  10. I’m on the edge of that cliff looking down. My parents are still doing well at their home, but Dad is more forgetful and physically weaker (he had polio as a kid). Mom keeps him straight, but she doesn’t drive, so therefore she is dependent on him, even as he becomes frail.
    sigh …
    Thank you for sharing and encouraging us.
    On a lighter note … My wife was peering over my shoulder as I opened your site and her first impression of Miz S is that “fuckity” paragraph. I find this highly amusing.

  11. I think now that what we and the world-that-hasn’t-experienced-this-yet sometimes perceive as “resentment” is actually a combination of heartbreak, disillusionment, and confusion at the changing of the guard. Our parents are supposed to take care of US, and now it’s the other way around. But they changed our diapers and washed unspeakable horrors off our bodies and now we have to do this for them, but baby shit and adult shit are not the same kind of shit. Our parents waited through our stubborn assertions and refusals and now we are doing that for them -EXCEPT, we know there will be no end to it, no learning, no adjustment, no eventual realizations, except for the ones we make FOR them.

    The natural order of things is reversed, and it’s so unnatural, we have to seek affirmation from beyond ourselves that it’s all right to cry and scream and cuss and resent and feel all the negative frustrating feelings we can’t help but feel.

    We just have to constantly, sometimes minute-by-minute, remind ourselves that the real person is still in there somewhere, and still taking care of us by teaching and allowing us to learn how to take care of them.

    It’s a hard, hard lesson. There is always a sibling who seems to get the brunt of it all, because of geography and time and life situations.

    But you are not alone. Most of us are or will be dealing with it. No two situations will ever be the same.

    Maybe what I am trying to say, and not doing a very good job, is that it’s not only okay to not enjoy it, it’s perfectly okay to scream about it, too. How else can we stay sane? Keeping it all “in,” and pretending to the world that we are glad and grateful EVERY SECOND to be doing these things for people who are supposed to be doing them for us, is not only impossible – it’s ridiculous, and will kill us if we don’t have an outlet.

    It’s also okay to be angry – at life, at circumstances, and even at our parents for putting us in this situation. No matter how angry we might be, it couldn’t hold a candle to the anger THEY must feel as they look in the mirror and see someone they don’t know. Their parents probably didn’t make it to that age, so we are the first generation to be, as a group thing, caretakers to our own caretakers.

    My point, if I must have one? Go easy on yourself and on your emotions. That’s impossible, of course, but try. Don’t be afraid to say “This is a crock of shit” to your friends, because we understand, many of us immersed to our necks in a crock of the same kind of shit ourselves. And continue to love him and pray for him and talk with him and mine the memories out of him. I hope you’re writing down his stories.

    You’ll be glad you did it. All of it. Believe me – I know.

    And, it sounds to me as though you’re doing it all just exactly right.

    P.S. Screw the insurance companies. They’re manned by heartless, soulless, conscienceless spawn who care for nothing but money.

    P.P.S. I love you. We all do. But especially me. 🙂

  12. Thank you so much for this post, and your cross-reference to Miz S’s post. It may not help you (and Miz S) to know how many others are dealing with identical, or nearly so, situations. But I hope it helps you some to know how much your post helped me: It does help to know that I’m not alone, in my fears/anger about caring for my aging mother, my fears about my own aging process, and my gratitude to my wonderful sisters.
    Thank you!

  13. Even when their health is not as precarious as Bud’s… the downward spiral of age takes its toll and does so at a breakneck pace these days. Soon, I fear that driving will be impossible for my dad… he sees double at times. Pills, schedules and financial things that he manages may have to fall to someone else and while my mom could mentally do these, she shows no interest. Stephen comes home every chance he gets now, even if only for a few days. Thoughts and prayers headed your way.

  14. Difficult as it was to lose both my parents in their 60s, it was something of a relief not to have to deal with these problems. Managing the care for his mother’s last years was a 5-year nightmare.

    We pray that one of us will have the good sense to recognize the time when we can not remain at home much longer. We will move into a retirement community with multiple levels of care available.

  15. I know all of these feelings. My father died very suddenly when I was 19, almost 20. Suicide. My mother died in 2004. She lived with us in her later years and I was her caregiver as she was in a physical downturn. It was exhausting and depressing. Yet, thankful I am married to a man who understood and a son who benefited from growing up in a 3 generation home. It’s a mixed bag.
    Turns out, we’re all only human.
    My mother was on Medicare and I know the stress of finding a nursing home type of place on such a budget. She died in a rehab style facility, not happy to be there but kinda accepted it. I felt extreme guilty if I missed a day of visiting and checking on her clothes, etc.

  16. I thought Bud was a reader, if just a lurker, at your blog here. Maybe not anymore, eh. Does it always fall upon the women of the family to deal with issues like this? I do have a sister. But my parents are still in excellent health as my father turns 80 next year. My grandmother is 97 and still quite demanding though she is in assisted living. Since my parents are still active, they deal with her, bless her heart. She said this week she plans to live to 100. Ironically, I had just told my brother I expect her to live that long too. Hell to get old though, as my other grandmother (deceased) used to say.

  17. I don’t know what to say Vicki, but that I was inclined to throw things (chairs, mostly) when I found myself in a similar situation with my own dad.

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