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The Journey Continues

Photo by Valette

The memorial service for Mom is planned for April. My sister has really run with the event and has things well under control. I feel badly because she really doesn’t have to do everything but she seems energized by the process and excited to see people who will be joining us from near and far.

I’m looking forward to seeing John. Living apart has been a traumatic experience. If the timing had been different the affects of the separation might be softer but not by much. Six weeks will have passed when we see each other in Boston at Logan Airport in April. We have a history with airports.

When people ask where we met, I tell them Chicago O’Hare. That’s the truth, really. We had been corresponding via e-mail, chat and phone for five months before we met in person. After that we took our relationship to the highways and airways traveling between Pittsfield, MA and Louisville, KY.

For five months we traversed I90 and, Albany, Manchester and Louisville airports. We may have given some others a test run. At that time, being together had an urgency and being apart had a yearning both of which obstructed moving on with life as it had been known.

Now that we’ve been together 10 years, being apart is more pained and knowing we’ll see each other in a couple of weeks provides a comfort along with a sense of adhesion that, if I was a romantic. I’d call completeness.

I’m making this part of the journey with some apprehension. Concerned that my separation from John is usurping my grieving process over Mom’s death, I wonder if the timing of these events will haunt me once our living situation has settled and we reach a sense of normalcy. I wonder but when I ask myself what that means, I can’t say that I know. But I don’t think it will be my doom.

So I’ll focus on the joy of seeing John and try not to be rude to others who seek our time and attention. I might even let John talk to other people.


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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