Tuesday, January 11, 2005

The Road We All Will Travel

I’m struck by the number of my journal friends who are facing, or have recently faced, the challenge of ministering to an ill or dying parent. We are at that age, I suppose. You think you reach independent adulthood sometime before you hit thirty. But that’s not when it really happens. It’s when your parents and grandparents have gone, when you become the matriarch of your own clan. Or you stand, relying on your own strength alone, because the invisible bulwark of the preceding generations is passing away. It’s an odd feeling…a combination of grief, forlornness, and empowerment. You suddenly want to ask your parents all the questions you never did, about being a grown-up, about being wise…the questions you know that, if they were here, you would still not be asking. Because you don’t think to ask until they’re gone. That is when you need the answers.

Then, there’s the challenge of procuring decent medical care for your dying parent. The medical culture of 21st –century America has provided us with a perfect purifying fire. You will need to grab your sword and fight your way through the maze of HMO red tape, Medicare rip-offs, stand-offish physicians who possess head knowledge but have no heart, and health "care" professionals who most definitely do not care. You will be confronted by a team of doctors who each claim some impersonal chunk of your beloved parent—the cardiologist, the gastro-intestinal specialist, the internist, the oncologist… but you won’t have one who deals with the whole person. Primary Care physicians? They’re just there to write the referrals to the specialists. That is, if you can get an appointment in less than a month. In the end, you are as exhausted and drained by the interminable battle with the medicos, as you are by the suffering and death of your loved one. There is something to be said for the strength and wisdom gained from the incessant fight. But I, for one, would rather have spent quiet healing time with my dad, than having had to don my breastplate and helmet daily to sally forth and procure another ounce of help from the recalcitrant medical community.

To all my sisters out there, I can only say—fight the good fight. And know that it’s going to be a fight. There’s a good chance your parent will not have a choice between dying at home or in the hospital. Hospitals don’t want to waste their time on terminal patients. When my dad’s hospice nurse sent him to the hospital in the last week of his life, looking for some treatment to make him more comfortable, his attending physician asked me, "Why is he here? We can’t do anything for him here." Luckily, Dad wanted to go home. It’s a good thing…he really didn’t have any other choice. The hospital was not going to let him stay.

You will probably need to face helping your loved one die at home. It’s not like the movies, my friends…that’s the only wisdom I have to offer. It’s hard work, it’s heart-wrenching…it’s an experience that nothing in our previous lives has prepared us to do. Without going into the less-appealing details, let me just say that you will do things you never thought you could do, and find a strength within yourself that you never knew you possessed. If you make it through to the end, you will have a sense of connection to your parent that you will never lose, and a feeling of having accomplished something every bit as miraculous as giving birth.

Blessings, strength, grace, and power to all of you who are standing at the beginning of that road today. Those of us who have traveled it before you wait along the roadside, ready to help in any way we can.


  1. This is a challenge that does come with age,  a definite rite of passage.  I wanted so badly for dad to be able to die at home.  Mom had that blessing, dying in her own bed while falling asleep.  I prepared myself for his death that way and all it would involve.  I think when it didn't work out that way, it was harder.  We, who have been there, do need to help others who are just getting started on that road.

  2. We've been lucky so far. Only my mom's mother had to spend time in a nursing home and she had Alzheimers (back when they were just beginning to understand what it was). Part of it may be our success oriented culture. Death isn't seen a natural progression of life, I think many health professionals see it as a failure somehow. All our science and there's stiill only one sure way off this ball of dirt.

  3. Unfortunately I faced that with both parents.  I am so very happy that I was able to care for them at 'our' home.  We're called the sandwich generation.  Women who are sandwiched inbetween taking care of our children and our aging parents.  

    And you're right.  Anyone dealing with this will need all the support they can get.  Sie  

  4.   I faced the deaths of my parents and then more recently, my sister. My father passed on while I was stationed in Germany and I had not seen him in 18 months. My sister passed more recently. The thing I found I missed in one case, I gained in the later. I had time to spend with my sister, speaking of life and death of things fair and unfair. Being able to speak at length with her helped me make my peace with it all. Not being able to spend any time with my father who passed all of a sudden haunted me for years. I miss them both yet I know Sue and I were able to make a peace that I was unable to share with Dad. . Just thinking aloud

  5. ah.........this I understand to my very core.

    Well said.

  6. You're right -- I totally missed this.  Great entry -- especially the point about caregivers losing time to deal with the medicos that could be better spent with their loved ones.

  7. Hello Lisa-
    There are not enough words to express my gratitude for posting this entry. I am sorry that I am just now reading it. This is such a difficult journey that has started for me and having support means so much to me. I am the designated "spokesperson" for my Mom (along with my Dad) and this does add to being more stressed. But i am not complaining one bit! I will do whatever to make sure that Mom's every wish and want is met.
    My Mother's illness, the end of her life and her quality is my constant thought now. As I have said before to you, i am blessed that I'm surrounded by medical professionals that are sincerely concerend about her releif from pain, her quality, her dignity and to respect all of her wishes. The hospice we have chosen is terrific and very capable.

    Thank you for thinking of me and posting this entry Lisa. Many thanks to you and hugs too!

  8. Very well written. My mom has worked for years now as a nursing home administrator. I've been exposed to that side of elder care and must say I never want to end up there, neither does she. But, in this day and age having the luxury(?) to be at home isn't always an option. I like that hospice care has sprung up to bridge the gap but it still seems that an immense gap exists. :-) ---Robbie

  9. my mom is 79. Your entry make me cry. I think as we grieve for our parents, we also grieve for the loss of an idea, the idea we would be forever young , brave  & invincible ourselves.

  10. ty most of the time i feel alone since i lost my dad in Oct 2004 i was also his caregiver and i am now the same for my mom. i am trying to start a journal for myself but i just cant. i dont know where to start. maybe someone can help me....