Saturday, October 10, 2009

Coping in Caregiving

Our entry into the world of special needs parenting was sudden. We had experienced the occasional ear infection, chicken pox, broken bone, bronchitis, etc., but serious illness had never been a part of either my husband’s life nor mine. In fact, I was brought up in a “non-medical” household (in which we prayed, rather than taking medicine or going to the doctor). Our kids had each vomited once or twice in their lifetime. We were blissfully ignorant of what it was like to care for a critically ill child.

When Katie became ill in the autumn of her 6th grade school year, we were not prepared to move into the hospital full-time, but that is what we did. We were even less prepared to be discharged to Ronald McDonald House with all of Katie’s post-chemotherapy needs, knowing that she had a large tumor in her abdomen (encasing her kidney, adrenal gland, in a lobe of her liver, filling her inferior vena cava and entering her heart). We had been told that she could die at any time from this tumor. To be discharged to Ronald McDonald House meant more togetherness, a more comfortable environment for the four of us, but it also meant a frightening degree of responsibility for Katie’s physical well-being, when she was very fragile indeed. We knew NOTHING about how to prepare and give injections, maintain a PICC line, maintain the nasal-gastric tube feeds and pump, treat severe nausea…but we learned, quickly.

Medlist KEGMy way of coping was a little bit OCD and artistic, as I am. I began with a small spiral-bound notebook in which I wrote down every medication as it was given, her temperature 2x a day, how many cans of formula she took in - how much she lost if she was sick - and the time when each thing occurred. I made a “map” of the medications and tools needed for morning and evening. I created a color-coded system for this, as well, and later, I used Microsoft Outlook to track and record the more complex matters that arose. Temperature, line flushing syringes, injections (2 or 3 per day, depending upon the chemotherapy cycle), antibiotics, anti-nausea meds, liquid nutrition – we were taught by the best professionals to use and administer these, and we did it all.

MedList KEG2At first, I strongly resisted this role of home health care nurse. I felt that Katie was sick enough to deserve a professional caregiver. We even called an agency and interviewed one. But the important thing – which surprised us greatly - was that Katie preferred our non-professional, sometimes bumbling, care-giving to that given by anyone else. Even when she was an inpatient in the hospital, she preferred to have her dad give her injections, rather than a nurse! Her dad, who used to become faint at seeing his own blood drawn, became the man who gave Katie her shots. I was the one who drew them up, prepared the ice bag (to numb the spot), sterilized her skin, held her hands for comfort while the shot was given, and put on the band-aid afterward. We shared all of the care-giving responsibilities, becoming a sort of relay-medical-team, and it worked for us, as a family.

When Katie relapsed and needed hospice care, we learned more. We were able to take care of her, here at home; she never had to go back to the hospital, but was able to stay in her own familiar house, sleep in her own bed, with all of her favorite things around her. She had us, her family and friends, and our cats with her. She passed away peacefully in her room, with me, her dad and her brother by her side.

Katie was sick for 10 months before she passed away. Our time as parents of a child with special needs was relatively short; our "special need" now is grief. Some of you have been taking care of a child with special needs for many years, and you know more about this calling than I ever will. I can only try to imagine how tiring, how discouraging, and how frustrating it may be on some days, with insurance issues, medical issues, fatigue, sadness, the hopes and dreams that are not coming to fruition, the need for respite care. You are doing a great work, every single day that you get up, advocate and care for your child, go to bed, and then get up and do it again.

I want to salute you for the job that you do every day. You are giving your child love, tenderness and comfort EVERY time you give a medication, a feeding, a shot, or hold her hand while it happens - every time you make a phone call to find the right treatment, doctor, therapy or the best school placement for him. Every single act of caring translates into love. The memory of giving that loving care to Katie during her illness is precious to me now. And love is the best medicine we have to offer each other.

Blessings to you and your children!

You can also read this post at Hopeful Parents.


ChiTown Girl said...

when are you going to write a book? you're writing is incredible.

Busy Bee Suz said...

This is beautiful Karen. I don't think anyone could ever be prepared, but you took this job seriously and I am amazed at your artful OCD record keeping. Katie was lucky to have such wonderful parents that took this task to heart and made it that much easier (if easier could be) to deal with her disease.
I see the special needs kids at Lindsays school in the afternoon as they are getting ready for their afternoon transportaion. The unfailing love and devotion these parents have for their children just amazes me. Humbles me. As I complain about silly things, they have real issues on a daily basis. Kind of a slap of reality for me.
Take care,

Elizabeth said...

Thank you, Karen. I read with awe about your experience caring for Katie, completely not expecting your tribute and words of support for those of us who care for our children with special needs. You are more than generous. Thank you.

Lakeland Jo said...

I agree with Chi Town girl- book please. Start now- you are a great writer

Karla said...

You know, today I was thinking of putting up the Halloween decorations and was immediately trasported to the day Sam was diagnosed. I've decided to hold off for now and perhaps even skip the halloween decorations...we'll see. :)

Thanks again for sharing so eloquently about Katie's and the family's journey.

Karen and Joe said...

Beautiful and love-filled, yet sad. It hurts to read of your family's very difficult ten months, only to have to then deal with the grief of losing that precious girl. I am so sad today with my husband's birthday, so sad my son is not here. I am sad for you and all the parents who go through these types of things. Life is so hard to take in, sometimes.

Jason, as himself said...

Katie was in the best hands. What if this happened to me and one of my children? I can't imagine that I would be able to handle it. But I suppose I would because when these things happen we rise to the occasion because we have to.

Life is so unfair. Why your beautiful Katie was taken from you and countless low lifes are allowed to wander the earth causing harm and suffering everywhere they go just boggles the mind.

Thank you for sharing this stuff.

Kay said...

Unfortunately we were well acquainted with caregiving long before our little guy 'got sick' as he had never been an overly healthy little boy from the day he was born. I was seeing specialists with him instead of lazing around at home recovering from his delivery. About the time we thought our caregiving days were behind us and he seemed to level out some is when he got 'really sick'. But I certainly wasn't prepared for the new levels of caregiving I would have to do... and yes, we had charts and graphs too. ugh.

Renee said...

Dearest Karen, you are pure love and how lucky that Katie has you and her Dad. How lucky others are to hear your support to them while they take care of their children.

I love you Karen.

Love Renee xoxo

KBL 2 ORD 2 SAN 2 LUV said...

I would never, ever, in a thousand lifetimes, wish such tragedy and grief upon anyone. However, through such a heartwrenching ordeal, we have become the recipients of your beautiful words, your teachings, and we have come to know Katie. I probably would have never met her otherwise.

The investment of spirit, time, and energy that you and other parents selflessly pour into your children is indeed humbling. All I can do is pray that if this were ever to happen to me, I would have your strength.

Renee said...

Thank you dear Karen it always matters to me what you have to say.

Love Renee xoxo

amanda said...

That, my friend, was a beautiful post. I am not sure that any amount of time to prepare could have made the situation better for you.