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the center of the universe is the brain

Archive for the month “March, 2009”

Days of Darkness 3

The saddest part about losing Mom is that I never really had Mom. I had whatever part of her that she was able to share with me. Or whatever feelings she chose to project onto me. The years I spent in the same house with her I searched to uncover her secrets.

Secrets I could never possibly find. What she thought or loved. Did she like to dance? Who broke her heart? Her real secret is likely much darker than what I was looking for but keeping it secret made it darker and more powerful.

Only my morbid curiosity is interested in knowing what dark secrets Mom kept all her life.

I would rather know who she might have been without that burden…

Maybe she would have dared to wash dishes without wearing gloves. Allowed the house to get dirty while she played outside with us. She would have laughed more and played music loudly and not been afraid of what other people thought.

She would have enjoyed Dad and let him be the odd, theoretical math geek he was instead of wishing he was someone else… someone who wore a suit and went to society parties.

Maybe she would have gone ahead and become a doctor instead of a nurse – that’s what she did because that’s what it was okay for a woman to do. Or maybe she would have at least been brave enough to continue working after she got married. Maybe she would have been brave enough to break a few rules.

If Mom had been free of secrets, she probably would have let me keep all the stray dogs and cats that came around the house. Even if she hated them, she could enjoy my love of the little creatures.

That strange, dark house would be lit with laughter. The rooms would be painted in bright colors. The floors would be scuffed from children and pets and friends. People would share ideas and music and art. It would be a place of freedom.

I never wanted kids but I do kind of wish I had a daughter to whom I could give this life. We would have Play-Doh fights in dress-up cloths and write math problems on the walls. We would make up rules so we could break them.

Letting go of Mom means letting go of her secrets. The one last rule… the rule of keeping secrets… is the only one left to break.


Never Give Up; Never Surrender

The complexity of health care in the United States makes even the most mundane procedure seem daunting. Wandering hospital halls without a GPS makes one realize they are in “the system.” Break free.

Easy to say, not easy to do. If you or a loved one is in crisis, it’s the only way to get the care you need. And it’s the only way we as a culture can change the system. All our whining, bitching and complaining is meaningless. We must advocate. One patient, one doctor, one administrator at a time.

What I realized in trying to get the appropriate care for Mom was that the first response the doctors had was what was safe within the system.

Don’t kick and scream. Put your emotions on hold. This challenge is one that requires you to be perfectly clear. There is no instruction manual. But here are some suggestions:

1. Always remain respectful and always believe that the person is there because they care and want to make a difference. Whether you are dealing with someone who has been kind or someone who’s been an ass, treat them with respect. Otherwise your self-respect will erode.

2. Be prepared to repeat medical history and current concerns over and over and over. Be clear and try to be as succinct as possible but also be thorough.

3. Educate yourself. Don’t think you can get your medical degree through Google but do use online source to inform yourself. If you are diagnosed with an illness, check symptoms and options for treatment. But do not dismiss the advice of your doctor. If you have questions or concerns, talk to them. Call them. Insist on being seen. Be persistent.

4. Be persistent. Make sure your doctor knows who you are. I discovered my mother’s primary care physician had other patients with the same name!

5. Remember your doctor sees probably 16 or more patients every day. While you are focused on one case – yours – your doctor is juggling multitudes of illness, referrals, sniffles, chronic diseases, suspected child abuse, unexpected pregnancies, hypochondriacs, undiagnosable mysteries… That doesn’t mean you should take pity; just remember that you have to remind him of your concerns.

The one thing that continues to baffle me is how slowly “the system” moves. Emergency and triage people are the stars. They jump in. But patients spend very little time with them. After emergency care, the patient is sucked into a system that seems to thrive on waiting.

We are all part of “the system” and there is enough blame to go around. Generally I blame insurance companies. They are responsible to their shareholders, not to the patients.

Hand-in-hand with insurance companies are health care administrators. These are the people who have forgotten their purpose beyond budget and marketing and billable services.

Doctors are the most powerful people within the system. I’m certain that most doctors truly care about the well-being of their patients. However, how many of them have stood up and said, “No.” No to time limits on office visits. No to limitations placed on nursing the requires nurses to get a doctor’s order to provide care for a patient. No to system rules that prevent a family from having access to needed care to help a loved one.

The second most powerful group inside the system is nurses. Across the country there is a shortage of nurses (except, from what I understand, Portland, OR). Many of them are unionized. Unions tend to deal with more concrete issues but they could be used for basic organization. Nurses have the foundation to stand up and say, “Stop. It’s time the system get out of the way and allow us to care for our patients.”

I confess. I am part of the system. It’s easy to forget that, working at Alaska Children’s Services. We’re a small organization and I don’t have to deal with billing or coding or regulations. I hope that my being there alters the system in some positive way. I hope that my advocacy for Mom’s well-being has supported someone’s care-giving.

Days of Darkness 2

In writing this post I am trying to be open, expressive and helpful while still respecting my mother’s privacy. Certainly a difficult balance but both aspects are important enough for me to give it a try.

Over the last few weeks, Mom declared that she wanted to die. She refused food, fluid and medication. She had conversations with my sister, the nurse and the social worker expressing that she was sorry for the mess she was leaving us in but she didn’t have a choice. When pressed, she couldn’t express why she wanted to die or what mess she was leaving us in. She went on about the financial mess and how it would ruin our marriages but she couldn’t explain further.

Several caregivers agreed with my opinion that this was not Mom talking. Finally, we all came together and my sister and I agreed to the decision to try to have Mom hospitalized even though we knew she wouldn’t agree. The doctor found a hospital with a qualified geriatric program that would admit her once she had medical clearance.

Mom went somewhat willingly.

Now the wait begins. Either we’ll have Mom back and she’ll live many more years with some level of independence, in relatively good health, perhaps even find some peace within herself or she will need institutional care at one level or another and we’ll all make adjustments to accept this new lifestyle.

There is not an experience in my life that I can draw on in order to comfort or inform. I am in the dark but mostly at ease. I am confident that we did the right thing and hope that my confidence will remain strong until it is confirmed.

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