Hospice means not getting what you want

I’ve been rather quiet lately as deadlines have loomed and obligations have multiplied. It’s always busy, the life of a writer. But it seems that the choice often comes down to living or writing.

I can have time to think, reflect, observe, and formulate the words expressing my deepest soul.

Or I can live a life.

Is it odd, as my life has become richer lately, that I miss my quiet days? I’ve made choices to expand my duties in recent months, and I’ve decided to learn some science and language.

I’m not a science kind of girl, and yet I’m learning how to say “kidney” and “itch” in Spanish.

Why?

Why not?

A few years ago, I became involved in a residential children’s home. Yes, technically an orphanage. As I entered those walls, I prayed to learn everything. I wanted the heartbreak, I said, in order to know the true reality of living and working with those who need love the most.

My prayers were answered. I’m not sure I could ever go back to that work, but those few years shaped and deepened my life in a way I never could have imagined.

The heartbreak was real.

In the past year, the death of my friend has re-focused my priorities and lent an urgency to the age-old “meaning of life” angst.

I’ve been searching, and it’s difficult to understand why or what for.

I’ve become involved in hospice, and I’ve gotten extremely close (perhaps too close) to a woman dying of ALS. I can’t say too much, in order to respect her privacy, but these few months have broken my heart in a way I can’t describe.

Years ago, I asked for heartbreak so I could learn and understand.

This time around, I hoped for love and tenderness. I didn’t discredit the ugliness of dying, and I didn’t hold out unrealistic hope for cure or shiny happily ever afters. But I thought, perhaps foolishly, that I might find a piece of my heart that died with my friend almost exactly a year ago.

Anyone involved in hospice or intense medical care can understand the overwhelming, life-sucking struggle of advocacy. The system we set up to protect patients and providers can seem cold, heartless, and downright cruel. But when newbies come in and care too much, old-timers worry. They warn, rightly, of burn out.

I had one mantra as I began this new journey:

Someone on hospice should get whatever she wants.

At least within reason.

But that hasn’t been the case. Sometimes wants are unreasonable or unrealistic. When a relatively young person develops a terminal illness, how could any want be reasonable? Give me back my life, we would say. It’s too much and far too little at the same time.

It takes a village to care for a dying woman, and yet some days it feels as if the walls are closing in. I do one tiny part compared to all of the vast, various needs in her life. And yet…and yet…I find myself closing off. Dissolving into tears. Over-sensitive to the rage and frustration my friend can’t help but dish out.

Hospice, for all I’ve championed its merits and importance, means not getting what you want. It means acknowledging that life will never be the same again.

Life in hospice means rage and fear and desolation all at the same time, never knowing from one day to the next what might happen.

It’s a journey of faith.

It’s courage.

But sometimes it’s sobbing into the steering wheel on the way home, wondering whether life or death would be kinder.

When I first began this journey, I was horrified at someone who said, “I wish God would take her.” And while my friend is likely at least a few months away from death (but who really knows?), some days I understand that sentiment.

If I had to live as a quadriplegic, unable to wipe my own eye or push my own glasses up my nose, wouldn’t I do a lot more than lash out in anger a few times a day?

If I had to give up my career, social life, and everything that I loved, could I be satisfied with waking up in the morning and never feeling the sun on my face?

As my life narrowed to a hospital bed and I had to choose between conscious pain or medicated stupor, how would I cope?

I’ve learned a great deal in the past few months, but this kind of learning continues for a lifetime. The hardest lesson, yet again, is the reality:

Life means not getting what we want. Not even in hospice when it only seems fair.

It’s a hard thing, accepting the imperfections of this world. But what is our alternative?

How are you managing with the imperfections of our world today?

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11 thoughts on “Hospice means not getting what you want

  1. Natasha Knight says:

    Touching post, Ana. U2 has a song out and I can’t remember what it’s called but it talks about it not being easy to ‘take on the shape of someone else’s pain’. I think most often we forget about another’s pain. I know I do. I get so caught up in my (usually not all that important) stuff, that time moves along and I realize I’ve moved so far from where I used to be or where I always thought I’d be – remembering that other person and the shape of their pain. There are a lot of things that are not fair. I have this crazy view (and it may be naive) but it’s that God is so in love with us that all he sees is good and he’s blind to bad. Maybe that’s why the unfairness of it. Anyhow, I have no words of comfort really, more an “I’m here and I hear you”. We just keep going and keep doing the best we can. Maybe the hardest part is not arming ourselves and to keep on feeling even if it leaves us sobbing over our steering wheel.

    x

    Natasha

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  2. racheldevineuk says:

    A very profound and thoughtful reflection on life, death and pain – something we tend to think about a little more often as we age, and also when we are with people at the end of their life. I am full of admiration at your selfless caring of those in need, and you are right that people new at this should be aware of burnout. Even the carers need some care too, and this is often forgotten.
    I too sometimes think about the meaning of it all. I don’t have the consolation of religion as I ceased to be a believer many years ago, so stumble through life, trying to be a good human being for its own sake. I took care of my mother for 12 years when she was stricken with illness, and she died in my arms, and now I look after my 91 year old Dad, who has mild dementia. I don’t consider myself to be any better than anyone else. I just do what I feel needs to be done. They took care of me when I was young, and now I am repaying the debt. I am very lucky in that I have the support of a wider family network, but as a 65 year old, single woman, with arthritis and other health problems, I won’t pretend that I sometimes wonder what the future holds for me too.
    I am very lucky in that I am mainly optimistic and cheerful, although I do have my down moments. One thing I have done for 30 years is to keep a diary, and I find this is a great therapy for expressing feelings, pain and doubt. My writing, too, is a great escape, and I love to have family to stay – in particular the little ones. I hope that you too have times of joy as well as sadness, and that you will be able to share with others when the burden of caring becomes too great for you to bear. You are an inspiration, Ana, and I am so glad to have met you through the Internet. You are caring and giving, and still find the time and enthusiasm for new interests, which is wonderful. Keep doing what you are doing, but lean on friends when you need to and remember that for many people you are a special person. X

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  3. laurellasky says:

    Your caring means a lot to patients, just holding their hand so they are not alone.sometimes death is welcomed like a friend, no more horrendous pain or suffering the indignity that comes, wearing a diaper. That’s why I got burned out working in a hospital, a children’s hospital. We sort of understand why old folks die but it breaks your heart to see terminal children who may be in awful pain and yet their spirits are high and they have home. That’s why we must live each day as if it’s the last. There are no easy answers. Just do the best you can and if it’s too much to handle, stop doing it without quilt. You’ve done the best you can and that matters.

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  4. awesomesub says:

    Hi Ana, your post made me cry. I am so sorry that you had such a hard time lately, and all I can do is send good thoughts. Maybe I got this wrong, but you made this sound as if you are looking for a kind of balance in more than one way. One is the balance between writing and living, so that you have the best of both. I believe you will find this, because from what you have written in your blog, you have often enough been able to change what was harmful for you. I wish I had more of that kind of judgment.
    Is it possible that the other balance you are looking for is between heartbreak (grief?), love and tenderness? I know that we cannot have one without knowing the other, but that doesn’t make the pain any better for a long while I guess.
    I am so sorry because you lost your friend last year, and you have my sympathy for the situation you are in at the moment. I don’t know how I could cope with this. You want to help and your friend is not always able to appreciate that the way it would be good for you and her. Maybe that makes closing off a healthy way of dealing with this sometimes.
    Almost two years ago a friend of mine died. She had just turned eighteen, but was anorexic and died from it. In a way, I felt betrayed by her, because I thought she had thrown away her life. She deserved a good life, and I wanted that more for her than she did. And I still think life has not been fair. I also think that about my granny’s situation, and granny enjoyed life in good ways.
    I don’t think I have a good way of dealing with the imperfections of life. I guess I ignore them pretty often, until they hit me one way or the other, however, when they come my way, at least I try to get through. If I was the one in a hospital bed, I wouldn’t know what to think. I like making people happy, but I am not sure how this could work, restricted to a bed. So I can understand the frustration that would have to come from this sort of helplessness. Maybe I’d give up (and this is what I would hate myself for) but even then I’d try to be nice to others who want to help. And in some moments I’d be grateful for understanding I receive from others who can see that I maybe cannot be nice in that moment. I hope that your friend is able to show more of her good self to you again, and I am sorry that I have no real answer at all, but I am sending good thoughts your way.

    lots of hugs and ❤

    Nina

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  5. catrouble says:

    Oh Ana…I can understand your pain but I have to give you mucho kudos my friend…not everyone has the strength and fortitude to work and/or donate their time to hospice. I was so grateful to all of the hospice workers…nurses, volunteers, aides, therapists, etc. for the care they gave my dad and the support they gave my mom and my sons.

    Thank you for all you do. Sending lots of prayers and positive energy for you.

    Hugs and blessings…Cat

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  6. rozharrison says:

    Hi Ana, this is such a touching and heartfelt post. What you are doing for the patients and their families is a wonderful thing and it takes a special person. You have such a heart.

    Sending positive thoughts and huge (((hugs)))
    Roz

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  7. abby says:

    One year ago…today my mom died….you my dear, sweet friend are doing the work of angels on earth. To be there when someone is at the end of their life here on earth, is a special privilege. It is not easy…but you are making a difference…a big one. HUGS>..
    hugs abby

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  8. minellesbreath says:

    It is such a wonderful privilege to care for someone who is dying. Yes….and so painful.
    However, believe that you are making someone’s passing so much easier. Love and compassion make all the loved ones have comfort in the difficult process of letting go!

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  9. JoanneBest says:

    Dearest Ana,
    I hope, when you lay your head down at night to sleep, you realize that you are truly an angel on earth. I’ve gladly had my share of taking care of elderly people in need, but in my case, it was always family and everything I did I did out of love. What you have done, what you are doing, you are also doing it out of love because you are so full of love it overflows, in a way, it means even more because you are not doing it out of obligation, but you are doing it because you have a pure heart full of love and you care deeply about others. It means so much to the people you tend to and their families, whether they express their appreciation to you or not, believe me, they are so very grateful for every single thing you do.
    When I became my Mother-In-Law’s caretaker, nearly 10 years ago, I quit my job so someone could be with her all the time. Although she had 2 daughters, they were frozen, the only reason she finally got the Alzheimer diagnosis was because I pushed and guilted them into doing *something*, and when MIL was still able to talk she asked that she remain home instead of going to a nursing home. The point I’m trying to get to is that I called hospice and arranged to have someone come to the house (as well as a visiting nurse) and the weight I felt was so much lighter knowing hospice was here helping her, and helping me as well.
    It didn’t matter to me that my MIL never liked me, I didn’t care that she resented me for marrying her son, all I knew was that she needed love and care and if her own children were unable to step up for their own reasons, I was determined to make sure she was receiving the best care she could.
    It’s funny in a way, that as she became worse, she began to rely on me more than anyone. She let me bathe her and feed her and sit with her talking to her for hours while I held her hand and stroked her hair.
    The night before she passed, while I was sitting with her trying to get her to eat a little bit of applesauce, she grabbed my hand and was squeezing it tight as if she was trying to tell me something. She was looking into my eyes and there was a different look there, like she was pleading with me , that she was tired and done and didn’t want this anymore. Tears were pouring down my face, I knew she didn’t have much time left and I felt helpless. I didn’t know what to do or what to say to her so I prayed with her and I silently asked God to please give me the right words to say to her so I could give her some comfort.
    The words came to me like a flash, and I held her and told her “it’s okay if you want to let go, we love you and want you here with us but if you want to move on, it’s okay to let go, you don’t have to be strong anymore if you don’t have the strength, it’s okay to let go but remember, I love you, we all love you and always will”…. this was sometime around 11pm. The next morning my husband went in to check on her around 4:30am and she was gone.
    There is a tiny part of me that feels guilt, like if I didn’t say those words to her perhaps she would have held on longer, but she was in a lot of pain, unable to do anything for herself, and I know she wanted to be with her husband again.

    I’m babbling a bit, my mind is all over the place since my Dad passed away 3 days ago. I was taking care of him since my Mom died 2 years ago, and all he wanted was to be with her again. My plan, if he had come home from the hospital, was to call hospice. A lot of people don’t realize that, at least in NJ, hospice isn’t only for terminal patients.
    I think you are an amazing woman Ana, you are what I would like to be when I grow up, doesn’t matter that I’m older than you, you still are someone I strive be like, even just a tiny bit. Whether you know it or not, I hold you in my heart , and there have been many times when you have unknowingly kept me going when I felt like I couldn’t take another step.
    Thank you for that, and so much more ❤
    Love and hugs,
    Joanne ❤

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