When the Caregiver Becomes a Bully

March 13 - Diva Sister sharing the good news with her nurses that she is going home today 

This afternoon I realized an ugly thing about my caregiving attitude toward my sister Margaret.  I am becoming a bully and need to find a better way of navigating our relationship. Margaret is 81 years old and has been through a lengthy hospital stay and rehabilitation for almost two months.  On March 13 she was discharged from re-hab because she no longer qualified for skilled nursing.  I honestly did not think she was ready to return to her apartment and live on her own, but she lobbied fiercely for going home and the re-hab center discharged her.

These past two weeks have been a blur of caregiving activity--followup doctor appointments, twice weekly visits to the wound center for post-operative care that will have to go on indefinitely, arranging for her phalanx of at home caretenders (for which I'm very grateful that she has their help), setting up her apartment so that it's safe, restocking the fridge and pantry with easy meals, and laundry.  And most importantly, getting her TV cable working so she can see The Price is Right and getting in bird feeding supplies!

In my former working life, I was an event coordinator and planner.  I know how to organize conferences for 200 people, plan and conduct workshops and business meetings.  With Margaret's homecoming, I just realized today that I am unleashing all this pent up organizational fervor on her.  Deciding what she'll eat and in what order, how her bathroom and kitchen and clothes closets must be arranged, how she'll take her medicines--and on and on.  I have become just like Donald Trump's chief of staff John Kelly--with about as much success as he is having!  For, like Trump, Diva Sister has not fallen in line.  In fact she fought me on all my efforts to make her follow my rules--for her own good, of course.

This afternoon I was lecturing her about what we must do at home to avoid an emergency run to the hospital again if her blood sugar dips dangerously low--which usually results in a trip to the emergency room and hospitalization.  I am terrified that this will happen and she will be turned away because her hospital bills have been just astronomical.  Have no idea how much health care she is entitled to and whether we are reaching a cap.  So, I'm pounding on about what she MUST do to avoid this and happen to look in her face and see that her eyes were swimming with tears.  That's when I realized that I was turning into my sister's bully rather than her caregiver and I was ashamed.

This week, I'm going to make a great effort to let go of my expectations and standards and give her the freedom to live her life and make decisions about her daily activities.  It will be hard not to butt in, but I will try.  I don't want to be a caregiver, but even more, I don't want to be a bully.  Wish us luck and if you have any secrets about navigating this narrow path, please share them. . .  

Things Fall Apart-- Deciding on Long Term Care

Diva Sister in the Toyota Bread Truck

Well, Diva Sister got the good news from her doctor yesterday that she could be discharged from the skilled nursing rehab center.  Looks like she will be shaking the joint next Tuesday, god help us all.  Of course she's happy but, as her caregiver, I have major concerns about how successful going home is going to be.  In a previous post I mentioned a couple of assessments that are used by health professionals and family members to decide if a person is able to live safely and independently in his or her own home.  You may find these criteria useful if you're in the no win situation of deciding if your family member needs long term care:

ADLs--Activities of Daily Living- if you cannot, w/o assistance
1.  use the toilet
2.  eat
3.  dress
4.  bathe
5.  groom
6.  get out of bed
7.  get out of a chair
8.  walk
then you lack the capacity for basic physical independence.

IADLs - Independent Activities of Daily Living- if you cannot
1.  shop for yourself
2.  prepare your own food
3.  maintain your housekeeping
4.  do your laundry
5.  manage your medications
6.  make phone calls
7.  handle your own finances
8.  travel on your own
then you lack the capacity to live safely on your own.

Of course, deciding just how many of these activities your relative or friend must be able to do is an individual decision, but most assessments recommend that you should be able to do all the ADLs. I have been observing Diva Sister for many years and gradually handling most of these tasks for her.  I have not found a long term facility willing to go through all that I know about Diva's abilities.  So, on March 13 we'll load up all her stuff in the Toyota Bread Truck and head back to her apartment.  We have a 30 day window for the re-hab center to accept her back in long term care if things fall apart.  god help us all, they will. . .

A Place to Call Home

Margaret's Apartment Warming, October 2008

Tomorrow is an important day for Diva Sister--and me. She has a doctor's appointment which will determine whether she is clear of a medical problem that has made it necessary for her to stay in a skilled nursing facility since the end of January. If the doctor and the re-hab staff determine that she no longer needs skilled nursing care and that she has made sufficient progress in physical therapy to return home, she will be released.  She is very anxious to get to go home to her much loved apartment and--I must say--has been uncharacteristically cooperative with her treatment and therapy in order to "help" the re-hab staff decide that she is able to go home!  Diva Sister is a wiley old gal!  As her caregiver, I am very concerned that in her own apartment--even with a lot of support--she will not be able to maintain the progress she has made and that we will be back in the same medical crisis situation that sent her to the hospital and rehab for the fourth time in the last few years.

Making the decision whether an aging and medically fragile family member is able to continue living independently is excruciating for all concerned--and emotionally draining.  In care plan meetings at the rehab center, Margaret is a demon self advocate for her ability to live on her own.  I sit in the meetings, armed with my legal Durable Power of Attorney for Health Care for her, and silently scream "No, you can't cook for yourself without setting off the smoke alarms and calling out the fire department!" "No, you can't see well enough to perform the routine procedures like testing your blood sugar so that you can act when it dips dangerously low." In the end, the staff determines whether the patient can safely go home and the caregiver has to do what he or she can to line up support for return to independent living.  In our situation, these two sisters cannot live together--we've tried it with very bad results.  Both of us are very private people who just want to be left alone in our own home.  During a period of 4-6 months about ten years ago, it was necessary for Diva Sister and me to live together.  I often told my friends to check the local Courier-Journal for notice of a murder/suicide of the Lowe sisters!

In 2008 Margaret moved from her lifetime home in Pikeville, Kentucky to be nearer to me in Louisville as she began to need more and more help and her medical condition worsened.  We found her a cozy apartment in a senior citizen's complex about 10 minute drive from me.  My friends organized her an apartment warming, gifting her with things she loves like seasonal decorations and organizational supplies for her massive correspondence project.  Diva LOVES sending cards to everyone for all occasions!  We have shuffled along with this arrangement since October 2008, but over the years she's lost the ability to perform routine life activities like grooming, shopping, paying bills and cooking.  She gets help from Caretenders and I take care of the rest.  Still, she feels that she is managing on her own, while I know she needs to be in a more long term situation.  That's a big leap in any care situation. 

If you haven't seen this list, check back tomorrow for criteria that health professionals use to evaluate whether a person is able to live independently and safely.  Margaret doesn't meet many of these criteria, but I suppose we'll give it one more go!

Caregiving Chronicles for a Diva Sister

 

Diva Sister Margaret and Chet

For almost ten years I've been the primary caregiver for my 81 year old sister whom I have named, with just cause, Diva Sister. Throughout her life she has been a person whose, as the saying goes, "bread always lands butter side up." By that I mean that no matter the dire situation she finds herself in, someone always comes to the rescue. Unfortunately, that someone is me, her younger--by nine years--sister. At this time in our lives, it's only the two of us remaining in our immediate family. That's why I find myself in this role of caregiving Diva Sister. And since her health is becoming increasingly fragile, the caregiving responsibilities are bound to increase.

Over the years, by necessity, I've become pretty adept at caregiving from practical strategies for day to day care to managing major crises like hospital/re-hab stays. Through this blog I want to share what I've learned that may help readers who find themselves in the same situation. Plus, in the wee hours of the night when I'm struggling with insomnia, my mind churning with worry over the current Diva Sister crisis, I often get out of bed, fix a cup of Aveda Comforting Tea and open the purple--Diva Sister's color on my calendar--journal and write until my mind is quiet enough to sleep. Maybe with this blog I'll come here to write (pun intended) myself!