<p>Several CC posters have gone through so much and have received support from so many, I thought to post this article that brought tears to my eyes as I thought of fellow CC posters:
<a href=“http://www.nytimes.com/2009/03/31/health/31case.html?_r=1&em[/url]”>http://www.nytimes.com/2009/03/31/health/31case.html?_r=1&em</a></p>
<p>marite – thank you for posting that article. It is beautiful. What a terrific young man.</p>
<p>That is a wonderful link Marite…thank you for sharing…</p>
<p>I watched House this past Monday with my 22, soon to be 23 yr old son… about a patient with Locked In Syndrome… which is what a girlfriend of mine has… it was a very interesting show and eerie to watch… the ability to care about someone, even a cyberspace someone is a valid, worthy ability. To care about someone who is unable to reciprocate is a higher level of soul, in my book. Many of us shared LTS, admiring her brashness, while feeling glad we were not on the receiving end… we didn’t know her and yet we liked her…and cared about her. </p>
<p>Our kids all have unique paths to travel in life… I have enjoyed all the posts here about the different choices kids and families make… whether about college or about prom dresses or recipes… the CC community is vibrant and real…</p>
<p>What a beautiful column, marite! I imagine that the writer will be a wonderful physician.</p>
<p>Thank you for posting this.</p>
<p>Spoiler alert.</p>
<p>I loved the ending:</p>
<p>"It turned out he had taken a job with the hospital after his girlfriend’s death. His story, I realized, was a kind of love story, and in some way it evoked all of our stories, whether we are doctor or patient, comforter or comforted, healer or healed. Josh reaffirmed for me what we medical professionals know but all too easily forget: the human story is not a series of illnesses and treatments that we manage, but is an unfolding mystery — a process with which we ourselves are in ongoing communion, both as witnesses and as full participants.</p>
<p>There, settling into our place in the story, we can see it in its wholeness and let it make us whole. We take part in its healing as it unfolds, and we are healed by its unfolding."</p>
<p>It’s also heartening to think of the kind of doctor the author (a 4th year med student) is going to be someday-</p>
<p>It’s also obvious that what will make the author a good doctor isn’t just his knowledge of the technical aspects of medicine.</p>
<p>I think the author must be a “she” whose first name is Nell. But I fell in love with Josh who stayed with his girl friend from middle school to the bitter end and was motivated to offer his loving care to others with whom he had no connection other than humanity.</p>
<p>… I also appreciated the humanity showed by the hospital staff in the final comment on the young woman’s chart "“Josh understands that [she] is dying and states that he is struggling to imagine a future without her.”</p>
<p>Clearly, the doctors in this case were affected by his devotion as well - and made an official note of it.</p>
<p>Caring for a loved one throughout the journey of a serious/terminal disease is incredibly hard and lonely. I’ve seen mature adults fall away from the situation, its too hard, too sad, just too yucky, etc. Sometimes its the spouse, child, etc that leaves their love one because they cant take it. I dont judge someone who cant do it, but I will comment on those that stay and “just do it”. Sounds like Josh was and still is an incredible young man with determination and compassion. As hard as sticking it out is, it is a blessing to have served someone you love to the end…</p>
<p>sistersunnie: My SIL cared for my brother during the final two years. She was at the hospital from 8am to 8pm. Through them, I got to know how very hard it is. I thought about you, about Crabbylady, LTS and others who posted about caring and losing their loved ones as I read this article.
Hang in there, sistersunnie!</p>
<p>What compassion Josh brings to his work!!</p>
<p>I imagine he got a C.N.A. to qualify as a “sitter”. So many sitters just sit, watching TV or reading. Josh pours his self into his job.</p>
<p>Until one has been really ill, or been a caretaker for length of time, it is not imaginable.</p>
<p>We had some wonderful sitters. All brought their unique talents to our home and we appreciated them. The best ones were veterans of caring for a loved one. Then they graciously shared their skills with us as a paid employee. I can honestly say I loved them and miss their presence in our lives. We stay in touch now. It takes a special person to do this work with grace and skill.</p>
<p>sistersunnie:</p>
<br>
<br>
<p>When the doctors told my dh and me that he had at most a month to live, I got him discharged from the hospital after getting a PICC line inserted and a visit from the hospice nurses regarding the mini IV pump. He was a patient at the hospital where I had worked for many years, and was always treated with the most total lovingkindness. </p>
<p>So we went home. There are no words that can describe that experience and those 4 weeks. Surreal; a different plane or dimension of experience. Words just can’t capture it. And I don’t want to try, since those memories will always have the power to strangle me with deep sorrow and pain. </p>
<p>My two sisters were totally unable to cope. I actually felt abondoned by them. (My husbands sister, also a nurse, had lost one of her children, and was an ‘insider’ re: heartbreak. She was completely present for dh and me.) I totally understood why they were psychologically running away from such pain as fast as they could. They didn’t realize it, though. It was years, and alot of tears, before that deep rift was mended, since the distance didn’t end with dh’s death. I finally lost it with them, described for them how they had behaved and how they had turned away from my children as well, and how that had made us feel. I then proceeded to tell them WHY they had acted that way, and that I understood their actions. Forgiving someone even before she is aware of having failed you. Ironic. Anyway, my sisters are the type of people who do for and love others all the time, naturally like breathing. Thus, my total confusion regarding how they acted during that last month of dh’s life. I’m not sure my SIL will ever completely forgive them, though.<br>
I was deeply hurt by their actions, even while understanding their inability to do anything else. If they could have, they would have. </p>
<p>If you have inhabited the ‘valley of the shadow of death’ ever in your life, you have a lifetime membership, and can help others walk through it. Those who are able to do so without having personally experienced tragedy are very special people. Spiritually mature. </p>
<p>One of my least sensitive coworkers said to me during my husbands illness, " Just think how much spiritual growth this suffering will give you." I looked agape at this woman, who had never suffered a day in her life, and I thought, ‘only people who have suffered get to say that, and they never would.’ What I actually said to her, was, “But nobody ever chooses suffering; it is thrust upon you. Give me my husband alive and healthy over ‘spiritual growth’ anyday…” On a widow/widower bulletin board I sometimes frequent, those kind of people are called DGIs, as in don’t-get-it.</p>
<p>dsc6 – I have seen many DGIs but have never heard the term before. When a dear GF lost her 3 year fight with kidney cancer, we wondered how some of her other so-called friends never appeared to talk with her, offer help with meals or chemo, etc. My nephew was diagnosed with bladder cancer at the age of 3. My parents were unable to help as they were dealing with their own disabilities. Whenever I could make arrangements for my 3 young children to be with friends during the day and my DH at night, I would fly out and help for 3-7 days at a time. Some of my sister’s friends and co-workers were by her and her husband’s side day in and day out; others were unable to deal with the illness of a child and fell by the wayside. Others they barely knew rose to the occasion and have become dear friends. Today my nephew is 16 years old and doing fairly well although he has some after effects from radiation and year long IV nutrition.</p>
<p>dsc6- I hadnt thought about the last weeks leading to his death if I could help it. It was a time of survival, mine and his. I was running as fast as I could trying to keep up with everything. I had Hospice, and home health care aids with me round the clock, but felt so alone, especially at night. I laid on an inflatable mattress beside his bed and listened to him breathing. Pray alot, but didnt sleep. I couldnt wait for the sun to rise each morning, they were the longest nights, very surreal. For three nights I just knew it was his last and yet each morning the sun rose…and we started all over again. The world narrowed to just he and I during those nights. The sitter stayed in the other room unless I called, to respect my space and time with him. She came in every two hours to help me dose him, turn him, etc. Funny thing is the last night he slept more comfortable than he had in months and the sun rose, I sang to him, cleaned him and then he was gone. I actually didnt see it coming when it happened. But was blessed to be right there, holding his hand and singing…I’ll never be the same. Most cant understand if they have never been there…I wish I didnt.</p>
<p>I hear you, sister. </p>
<p>I have dealt with death as a critical care nurse for many years. But what I experienced during those days at home with dh was on an entirely different reality. An outside-of-this-world experience. Very close to the veil separating this world from the next. Straddling the fence, so to speak. </p>
<p>For so many months after, that experience was never far from my conscious mind. Always very close to the surface of my thoughts, with an amazing power to hurt deeply. I can’t hardly bear to jump into that memory now, I don’t see the point. I sort of worked through it, got to the point of thinking of the alive and healthy person when I think about him. That is one of the blessings that passing time brings–it normalizes your memory a bit. After all, there was much more ‘healthy’ time than there was ‘terminally ill and dying’ time. But, for awhile, the intensity of those memories burns you. Even after that fades a bit, you will never be the same. How can you? I don’t think even our own dying will be as intense an experience as helping our dearest beloved through it. </p>
<p>Must. Go. Outside.</p>
<p>This board is a remarkable, remarkable place. It is a little world unto itself.</p>
<p>I am sitting in a hotel room in London weeping.</p>