Saturday, April 11, 2009

Easter respite for care-givers when family cares

I cannot emphasize enough the importance of families and friends (especially family) providing respite for the fellow family member caregivers. Care-giving is a thankless job. The rest of your family member and friends will never get what you deal with every day.

Care-givers are in the trenches everyday.

As a care-giver, you will be in the best shape possible when you have a care-giver in house with you. The best arrangement is (at least) two care-givers "against" one patient. The two of you will be able to sense when one of you needs and break. The strong one at that moment will know to step it up and give the tired care-giver some space. Care-giving is like a carefully choreographed dance.

My mom and myself have been dancing in this regard since I was a kid.

My mom is somewhat of a saint. She brought my (maternal) grandmother from her lonely life in Florida and into our home to live in approximately 1972. My "second mother" lived with us until her death in 1993.

My mom unknowingly taught me an important life lesson as she cared for her mom throughout those 21 years. That life lesson built the strong character, integrity and compassion that I possess today. I am not selfish. I care about others, which are in need --- especially, and unconditionally my family (maternal and paternal)

By caring for her mother unconditionally and forsaking her own autonomy for the best interests of her mother, my mom taught me that I would always have a safe place to land in her arms. She showed me through her actions that my family will always be there for me - unconditionally.

Mom also taught me how to care for an elderly family member. I gained incredible respect for the elderly. Mom taught me how to be patient and tender and loving with those who were weakened.

I have always been very surprised that not all family members of appreciate the sacrifices my mom has made throughout the years.

Mom's family never really understood mom's sacrifice and the strain that grandma's joining our nuclear family. One in a while, a relative on my mom's side would "invite" grandma for a few week visits at their home. As a kid, I always thought of those as "guilt visits." But, the ramifications of the trips were pretty horrible.

After staying with the IMHO guilty relatives, my grandma would come home to Cary and into the arms of mom (her daughter).

Grandma would weep and express the fact she was lonely during the visits because the hosts would essentially prop grandma up in a chair and leave her alone as they went about their planned activities. Grandma (my mom's mom) said that she felt left alone and in the way. Apparently grandma's relatives did not include Grandma in activities or even remotely plan activities that would interest Grandma. The visits seemed to be more of an "obligation checked off" than a loving visit.

Grandma died at my parents' (and my grandma's) home. My mom found her. No member of grandma's family offered to come to Cary NC and help mom out or even just to show presence and support for fellow living family members.

But then again, none of my mom's family came to NC to see grandma at our home when she was alive.

BOTTOM LINE: Mom's family apparently did not even want to come to Cary NC to personally thank my mom for caring for grandma for over 20 years. Moreover, my mom's family never seem to get that there was expected strain on my parents' marriage when the mom/mother-in-law moves in for over 20 years.

My dad treated my Grandma with love, respect and tenderness. My dad was devastated at Grandma's passing but I don't think many people expected that.

ANOTHER BOTTOM LINE: I am not even sure whether any of my mom's family came to my brother's memorial service after he died in a 1980 freak car accident at age 25. In contrast, dad's family was there.

When 25 year olds die, the parents of the kid don't generally send out engraved invitations. People who care just get there!

2000 - current:
My mother continued to be a saint (and get additional practice as a sole care-giver) when she cared for me through 7 or 8 painful and debilitating orthopedic surgeries and the consequential unfortunate physical limitations

(Thanks again, Dr. Chris Dangles of Carle Clinic in Urbana, Illinois and Dr. Alison Toth of Duke Sports Medicine in Durham, NC for performing unnecessary surgeries and abandoning me, respectively).

2006 - 2007:
My mother cared for me from the moment I was diagnosed with invasive breast cancer in Chicago. She brought me to Duke University and then she cared for me (without making me feel the least bit of a burden) through surgeries, chemotherapy, hospitalizations and radiation therapy.

2007 - current:
Approximately two weeks after I completed my radiation treatments (March 2007), I was literally packing up my belongings to return to my "home" in Chicago when mom and I learned that my dad (mom's husband of 53 years) had colon cancer.

I unpacked. I would never leave my mom alone to care for dad.

Mom was a saint and she would have done it. But mom and I were a team and she needed rest.

Mom and I have cared for dad non-stop since his diagnosis. Every single day since dad's diagnosis, mom and I wake up with no expectations of how the day will end. We have cared and encouraged dad through:

(1) multiple surgeries,

(2) numerous UTIs (very few medical professionals understand that mental confusion is often the only presenting symptom of the UTI in elderly men),

(3) disastrous hospitalizations where the "stranger doctors" (professionally known as "hospitalists") literally refused to communicate with dad's current treating Duke physicians.

Why were the hospitalizations disastrous? Because the arrogance of the "stranger doctors" resulted in quick turn-around readmits with pneumonia, an impressive foot infection and raging UTIs.


1. Now it is Easter 2009. Two years ago, I was not sure we would see this day. But with love, emotional support from my dad's sister (and her ailing husband and four daughters), nutrition and very good Duke Clinic physicians (despite the very bad Duke hospitalists), dad is plugging along.

We are indeed blessed.

2. This Easter 2009, dad, mom and I are sharing the table with my oldest niece (Jessica). Great kid. Great young lady. My niece was of course here to see dad. But, more importantly, Jess is a young lady of extraordinary character and compassionate. She cared for me when I struggled with cancer and she is available for my dad. I am proud to be related to Jess.

Thanks to my niece, for even a brief few days, mom and I are able to focus on making a special Easter dinner and attend church. More importantly, Dad feels loved, safe and, in a word, happy.

It is absolutely critical that caregivers (and even patients) be provided opportunities to live in the moment and without the looming implications of a terminal illness. My phenomenal niece gave mom and I that precious time and we are grateful.

My beautiful niece is 22 years old, just graduated from university and literally moved into a new home Friday. The kid must have been exhausted. But family is important to her and she has such honest love and respect for my parents. My niece jumped in a car and drove to Cary, NC to spend Easter with us.

Having Jess help with meals and laundry and just get our minds off of sickness may seem inconsequential. Nope. It is terrific.

3. A couple of months ago (and just in time for Easter 2009), my cousin Linda found me through my patient advocacy work on Wellsphere. (Linda is the daughter of my dad's cousin). This re-connection has been a tremendous and powerful event for my family.

Dad's family is all about inclusion. Thank goodness, Dad's mom (my Nana - Florence) routinely hand wrote letter to all of us that kept us current with one another. Linda is taking on the effort of finding and introducing family members to one another. Ahhh, strength in numbers.

Linda is wise enough about the human spirit that she understands that you cannot take the first no for an answer. The initial reaction of caregivers is that they will get their rest as the ill person is resting. Caregivers tend to feel guilty having time to themselves.

It is late right now and I am officially resting but I hear dad's every moan and cry. I think that a truly understanding and compassion family member will absolutely insist on the caregiver taking a break.

We need to make the reunion of dad's side happen. We need trips to Linda's lake house in South Carolina. We need continued emails, messaging and visits. We need a trip to South Florida so that we can enjoy some relaxation and reconnect with my dad's Cousin Fred (a man of extreme character who works with disadvantaged children of minority heritage). Fred is a strong supporter of Barack Obama's policies. [Note to self: respectfully chat with Fred about this the dangers of "hospitalists" and Obama's inane universal health care proposal.]

When relatives connect with my dad and make plans with him, my dad looks towards the future --- that is very healthy for dad and it gives him hope to live. REMEMBER THAT FOR YOUR OWN SITUATIONS. Find something for the patient to look forward to. It is critical.

We have not seen this side of dad's family for over 20 years. And yet, dad's entire family have shown a level of care and concern for my family (specifically my mom and dad) that has unfortunately been a void on my mom's side of the family.

Whereas these distant (and yet growing ever closer) parts of my dad's family routinely express love and concern for mom and the need for her to rest, my mom's own family has effectively ignored her during these troubling times. Although he is nice guy, my mom does not have a supportive, compassionate or understanding brother. Pity.

Sometimes my mom gets a bit embarrassed that she does not receive a similar level of care and concern from her family. Mom need not worry. People are what they are. We are known as human beings by the way we chose to treat the weakness among us.

I hope you all have a blessed and peaceful Easter (or Passover). God is in our lives and shows himself in many forms.

I challenge all of you to treat each and every person (even if the person is a family member) you encounter as though that person is in fact God himself.

Be kind to one another.

Happy Easter

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