What Matters In The End

Most of you who have been reading here for awhile know how my husband died. Mike had a heart attack in his sleep at age 59. It was the most devastating shock I've ever lived through and I will spend the rest of my life recovering from it. The pain of that grief, I know now, will always be there.

But you readers also know, if you have been following, the twists and turns my life has taken since that horrific day over three and a half years ago. I have a boyfriend, I've met lots of new friends, many of them also widows and widowers. I've had two jobs that got me back into the world (one of which I had to leave to come here to Virginia to help take care of my dad), and I started school with the hopes of a new career. I'm also losing my house in Kona to foreclosure. Baby steps and big steps. Bad moments and good.

But what I'm going through now with my dad really, truly sucks. The high note is that he lived a long, full, prosperous, generous and successful life on every level. He is 83. My dad was the kindest, gentlest man you'd ever know. He and my incredible mother both came from very little, worked very hard, lived the quintessential American Dream which is now sadly dying, and gave me a wonderful life. So to see this man now, reduced to what he is, breaks my heart...a heart already broken, finds new ways to break.

A lot of the heartache is not just for him, but for my mom. To see the agony of helplessness, the not knowing what to do...the man she has been married to for 55 years disintegrating before our eyes...it's a new depth of pain.

We are splitting time with him during the days at the nursing home where he is, temporarily. Recently we've had to hire a night care sitter, because on top of everything he now apparently has this sundowners syndrome which makes it all go crazy with him at night, and we just can't do it all. Not even the wonderful staff there can do it all for him. We're exhausted and simply don't know what else to do. God bless all the sweet and doting caregivers. They will most certainly have a special place in heaven.

Anyway, Medicare will pay for a certain number of days there, which ends in about a week, and then we need to figure out what to do. Talks of selling their home of 42 years, relocating dad, and mom, to a good place they can afford...and relocating myself to be near them. This is all happening, but the difficulty of knowing where to turn for advice, which place will be best, where we will end up...seriously aren't there people out there whose job it is to advise in times like this? There are organizations out there that will give you lists of facilities. But we don't need lists. We need someone with real estate and financial acumen and a little thinking outside the box to help this giant move we need to do. We have a pretty good idea of the state and cities we are considering, for quality of life, taxes, and affordability. But meanwhile, since apparently there are no such magical services out there, my brother and I have been online researching cities, facilities, condos...neighborhoods...it's so hard. I just wish there were a little help fairy to come down and say, ok, this would be good, you can afford this for your parents, they'd be happy there, and you'd be happy living in that city too. To have to do all of this when you are really just wanting to grieve, truly sucks.

And I remind myself that my life is not at its end yet. I have plenty of living to do, I even have a new career to start. At my age, that's a lot...I feel old...yes, I do, living through Mike's death aged me, living through this with my parents feels like its aging me...but I'm not 78. I'm 48. Though the clock keeps ticking.

I know the clock is ticking on my dad too. But in the most horrible way I wish his clock would tick faster. He is not the man we all knew anymore. I think a lot about how his death will make my mom another widow. Kind of weird I went through that before she did. But his mind is gone...his body is broken down, he is miserable, he is inconsolable. Mom is so sad, so in agony, to see him like this.

I read a great book this week, in between the care giving, recommended by a friend. It's called Being Mortal: Medicine and What Matters in the End by Atul Gawande. It was hard to read in places. But it contained so much wisdom. We should all, as humans, read this book.

Mike never wanted this to happen to him...he used to joke with us to put him on a surfboard and push him out to sea, or leave him under a tree on the mountain. Fortunately God took him quickly and painlessly. This is not what is happening to my dad. My elder stepdaughter, after hearing what's going on with my dad, in her usual direct but poignant wisdom, said, and mind you this is after years of intense suffering on her part finding a way to live without her own dear dad, I think we dodged a bullet with dad. Thank God he didn't go through this.

Yes. Mike hated doctors, and hospitals. He went exactly the way he would have wanted to, and it's not until now that I really, finally understand that deep in my soul. Before I might have agreed out loud, yes, wasn't he fortunate to go so easily, but it was always accompanied by a certain tacit resentment that I had no last moments with him. No longer. Watching my dad suffer like this, being part of the chaos of not knowing what to do, has led to, ironically, another level of healing for me about Mike. Something I could never bring myself to fully accept is now glowing brightly in front of me.

I'm glad, Mike, for your sake, that you escaped your earthly bonds so easily. I miss you so much. But I'm so happy you didn't suffer like this. God bless you, and from wherever you are, please put a good word in to ease my dad's transition.

Because I just don't know what else to do.


Showing 10 reactions

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  • commented 2016-11-01 06:50:51 -0700
    Hi Lisa, one of the best, and worst things of sharing here is realizing so many of us have suffered many of the same difficulties this life can bring. Thanks for being here.
    Janice, a private duty case manager sounds like a great idea. Thank you. We have a lot of calls to make for sure.
    Shelley, thank you for the vets suggestion…unfortunately he did not serve during a time of war. I have sure been learning a lot about all the systems out there, and I will keep treading water, thank you and hugs.
    Judy, thank you, as I told Shelley he is not eligible for vet support, but we have been making all kinds of calls and learning a lot so fingers crossed we will find some answers.
    To everyone who reads and supports my heart goes out to you all and am deeply grateful for all the support and prayers.
  • commented 2016-10-29 09:57:57 -0700
    Stephanie – my heart goes out to you – my dad has Parkinsons and can barely walk. Since he was a veteran – we have Aids and Attendance – which helps immensely. I really understand what you are going through – although my husband was in the hospital for 2 months and did go through so much and he was supposed to be released. Definitely check into Veterans Association. Here is the link to it – it might help your family out – http://www.benefits.va.gov/pension/aid_attendance_housebound.asp
  • commented 2016-10-28 13:07:06 -0700
    Stephanie I lost my father September 2011 and my husband died April 2012 at 55 with esophageal cancer only diagnosis 7 weeks before he died. So I understand what you are going through, hard to keep your head above water at times.
  • commented 2016-10-28 13:05:10 -0700
    Stephanie was your father a veteran of war, if so he could possible qualify for aid and attendance through the military to help with his nursing home care. You will need to find a VA fiduciary to assist with the paperwork. My father was able to get this and paid for about half of his nursing home care.
  • commented 2016-10-28 12:03:34 -0700
    You might want to seek out a private duty case manager. They will be able to assist you with options for your mom. You can find one through your social service office of the nursing home. I am sorry you have to go through all of this. I’m glad your mom has you there to help her. Prayers are sent for you and your family.
  • commented 2016-10-27 23:45:45 -0700
    Stephanie it’s all so very hard. I lost my dad three months before my husband. He was 91 and didn’t suffer long, but I was his only caregiver and faced all of what you’re dealing with now. It’s taken a huge toll on me, and I’ve aged a lot. But as you said there’s not much more we can do but take it one step at a time. And remember that sometimes deciding to do nothing for the moment is a decision in itself.
  • commented 2016-10-27 20:19:56 -0700
    Penny, I am glad Gary ended up having a relatively peaceful death and that you had a chance to say goodbye. We never do stop missing them though, that pain is intense. I’m so sorry for your loss and thank you for reading, and commenting, and wish I could hug you.
    Cathy, you’re right, it is never ending with death around us. It never gets easier either. I’m glad your parents arranged things to be a little easier for them and for you and hope their passings were free of pain. Thanks for being here and sharing.
    Patricia, thank you for the hospice suggestion. It’s an excellent thought and when we get to where we’re going I will indeed. My experience in Kona with the hospice has been excellent…Mike never needed it but they offer free counseling for spouse and child loss and that was what kept me together. So again, thank you so much, and blessings to you.
  • commented 2016-10-27 20:00:08 -0700
    Stephanie, My heart is with you. I have felt very unprepared, also, for being so surrounded by death and how it has happened to those I’ve loved. Have you sought out a local hospice? Not always, but often, their staff are wonderful resources for helping the community—not just their patients and their families—to deal with the very awful decisions which pile on us at a time when we’d rather be allowed to turn inward and deal with our emotions. They have been through it all many times over and know options for living arrangements, financial arrangements, grief support, and on and on. I hope you find the help you need and deserve. Pat
  • commented 2016-10-27 08:44:54 -0700
    Stephanie, Been there with my parents, although we moved them from their home of 55 years prior to health issues. They chose a facility in their hometown, so they could still see their friends, go to same docs, same church, etc. The continuum of care was important, independent apartment, assisted living and nursing care if needed down the road. My Dad cried when he had to make the decision to sell his home, but it was a necessary decision, and I’m glad he and Mom could make it for themselves.

    I, too, have felt I’ve aged in the last 6 years, having to face all I did, deaths of husband, parents and brother in law, dismantling parents and my home, figuring it all out alone just sucks. Both my parents died within weeks of health issues, so they, too, didn’t linger for years. The lists of stuff to do were never ending, but that is life, it keeps going, so we do, too. No one warns you about this part of life and aging, it just kinds sneaks in the door one day. Please take care of yourself, this, too, shall pass.
  • commented 2016-10-27 06:58:01 -0700
    Stephanie: I can really relate to this post. My husband Gary was diagnosed with terminal cancer and was given 2 months to a year to live. He died one month after his diagnosis as a result of an infection. The infection was caused by the palliative chemo he was receiving. Immediately after his death, I was angry….for him, for me, for his children…because we were cheated out of that extra precious time. In a very short while, I began to realize how lucky we were all were – that my husband did not have to experience a painful lingering death and that we, as his family, did not have to watch this man that we loved with all our hearts go through the ravages that this horrible disease can inflict. His death was very peaceful and he looked just like Gary when he died. He hadn’t started losing weight and experiencing the excruciating pain so many cancer patients go through. I am so blessed that my last memories of him are peaceful. Unlike you, I did have a chance to say good bye and I will be forever grateful for that and like you, I will never stop missing him.

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