Wednesday 17 April 2013

I'm a Professional Caregiver and You're Not

When I was a teenager, my Dad had a series of strokes.  When Mum went into the hospital for minor surgery, a woman in a white uniform arrived in our house to take care of Dad.  I couldn't stand her and she didn't think much of me.  In those days, I was studying theatre at university and rehearsals often lasted till well into the night.  This nurse disapproved of my hours, of the state of my bedroom, and I suppose she disapproved of the way that I spoke to my Dad (normally).  I was glad to see the back of her.

Over the years, I've learned a lot about the power politics that sometimes play out in homecare.  I have learned that caregivers who are team players by nature often become like members of our extended family.  I have learned that in home nursing for children, the rules of agencies are often at odds with what families need (eg. we don't want uniforms that remind my child of hospital stays and painful procedures).  All families are different and families have the right not to be judged in their own home.

For the most part, we have had wonderful paid caregivers in our home - people who honestly loved my family members with care needs and respected our way of life in our most private domain.  Once in a while though, a nurse would arrive who insisted on the uniform.  We had a male nurse who insisted on changing everything around in Nicholas' room to be more 'like we do it in the hospital'.  He constantly referred to me as 'Mum'.  Calling mothers 'Mum' is standard fare in hospitals where doctors see so many sick children that they cannot possibly remember parents' names.  But at home, I wasn't having it.  "I'm sure your mother would rather have exclusive rights to being called "Mum" - please do call me Donna.  I insist, as this is my home", I said, smiling.  My little ploy had no effect and this nurse continued to wear his uniform and call me "Mum".  We replaced him.

Palliative care is a discipline that has mastered the art of working with families.  Homecare workers of all levels are team members with caregivers, but it's the patient and family who are the acknowledged leaders. Our palliative care doctor (and all his staff) were the best example of team players I have ever seen.  Basically the message was "what would you like to do about this and how can we help?"  Naturally, that is a very different message from one in the hospital where you need the professionals to take charge and direct treatment.  But even then, in the case of chronic care and lengthy hospitalisations, the relations between family, patient and professionals rightly take a shift to be more relaxed, open and collaborative.

One thing I know is that I cannot give care alone.  For my complex relatives, it takes a team of family together with professionals from across disciplines and levels of qualification.  Besides great professional skills, I look for friendliness and flexibility in our prospective team members.  Oh, yes, and a sense of humour.  With those qualities, we're bound to be friends for life.
Sometimes caregivers are silly. We like that.

And we like it when they are kind.

I could tell so many stories of the kindness of our own team members.... doctors who hugged me, nurses who cried with me, and our forever friends who have lived with us and helped me with whatever we needed in the way of, well, everything.  But for the last week, the family care online forums have been awash in tears for a little boy with disabilities who passed away.  His name was Gavin and his mother Kate Leong, wrote about his life and passing in her blog "Chasing Rainbows".  Kate and her husband wanted Gavin to help other children, even in death, so they donated his organs.  Kate posted this message on facebook a couple of days ago.  To me, this message speaks to the bonds between professionals and family caregivers that can be forged by facing struggles together, as one.

Whenever Gavin was hospitalized - or even there for an appointment - it always felt like we were home with family. He was so loved by his doctors - and we loved them, too. I was so grateful to get this email (which I'm sharing with permission) from Gavin's Orthopedic doctor who was always amazed with his progress and determination. Thank you, Dr. Peter Gabos, for taking such good care of my son... and for comforting me with this message:
Dear Ms. Leong—

I was in the OR yesterday operating in the room right next to Gavin’s. You can imagine my shock and profound sadness when I learned he was in fact the child undergoing organ harvest. We stopped our case in a moment of absolute silence for him. I am so profoundly saddened by your loss. The world has truly lost one of its most courageous beings. The example of care and unconditional love that infused through you to him will stay with me forever. I am so blessed to have been touched by the both of you.

My prayers and thoughts are with you, Ed, and the rest of your family and circle of friends. Most humbly yours,


Peter Gabos, MD
Alfred I. DuPont Hospital for Children


The Caregivers' Living Room said...

I share my blog posts in lots of caregiver forums. In one, the discussion got going about whether family caregivers feel that we need 'tidy up the house' before professionals arrive to help us out. This is what one person wrote:
Interesting topic, I've always felt this way, "oh no company is coming(therapist and teachers who did feel like family very quickly)) clean up or at least hide things in the closet" hahah. I didn't think about others thinking the same way. I guess becasue I always thought other people's houses were probably always clean and mine was cluttered all the time. We had lots of teachers and therapists coming to the house from the time she was 4 weeks old and then again after her strokes and even this year her tutor would come 3 days. I guess it's just a natural way to feel AND I got a lot done in a short time before they came(although sometimes it was hard to find what I had stuffed in a closet LOL).

Special Considerations said...

I have been a family caregiver, CNA, home healthcare aide, and am a PATHS TRAINED DSP.

i have worked in administrative roles for agencies that provides residential and day programming for those who need special consideration.

In the administrative roles, I had
the pleasure of speaking to support staff regarding families. I just happen to be a Big Fan of families. You can learn so much from them about caring for their loved one. Listen, learn, and ask for information, allow them to assist if they want to do so.

Remember, usually family has provided the care in the past-they may be uneasy about giving up this task (of love and caring) But support care staff can show continuum of care and put the family'a mind at ease.

The Caregivers' Living Room said...

Thank you for the great advice (it's a gift to all concerned that you have experience both as a family caregiver and as a service provider)! It's tricky terrain and highly emotional, especially at the beginning. Thank you for your sensitive comments.

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