The Hospital

We moved into room 603 at Garden Grove Hospital. Someone from the family was on watch every waking hour. Because Bob had no insurance, I found myself entering a world of government services and programs. This meant swallowing my pride as I stood in long lines answering questions about assets, liabilities, property, and ability to pay. Taking a number, waiting among others in hard chairs on linoleum floors, the coldness of the surroundings contrasted with the warmth of the strangers in whose hands I found myself. Kind, compassionate, understanding - I began to understand what it meant to allow a person to have dignity at the lowest point in their life. Medi-Cal, Disability, SSI opened up a range of services to us. The local AIDS Services Foundation through the Ryan White Act offered more assistance. I was overwhelmed by the generosity and compassion of the social workers.

Humbling. Transforming.

In room 603, we kept a running log of our observations of Bob, questions for the doctors, and instructions for one another so as family members would come and go, we would all be on the same page. Bob's family. His mother. His sons - Matt and Rob. His cousin, Tony. His ex-wife, Peggy. His partner, Lenny. His sister- me. His family. We rotated at the bedside studying his every twitch. These scribbled correspondences, written on scraps of paper were taped to the bathroom door with medical tape. The handwriting looked as panicked as we felt. As desperate.

On a small, portable tape player, music played round the clock. Arias from La Boheme, La Traviata, and Madama Butterfly provided the score for our family opera.

THE LOG
Saturday April 24 - Matt
Questions to ask doctor:
What has been done for him and how's he doing?
What is causing him to shake so much?
When will we get the results from the MRI?
What can we do to make him more comfortable he is so restless?
What will be done over the next few days?
He seems incapable of asking for help. What can be done?

Saturday April 24 - Rob
Infection in both lungs causes some shakiness.
Cat-scan was negative.

April 25 - Matt
Dad seems delirious.
Took blood at 4:30
Treating him for a number of infections.

April 25 - Amy
Matt, talk to Sally regarding how to do Power of Attorney without Bob's signature

1:00 p.m.
Infectious Disease Doctor in.
Not criptococcal meningitus
Possibly HIV in brain so AZT may help
Pneumonia improving. No fever.
Will take him off Adivin to see if he will be more alert.
Good that he does hear and respond with some language
Tremor may come back off Adivin
Tremor may have been caused by sudden withdrawal from Zoloft combined with other meds
Did not eat breakfast
Not TB
Not fungal
Prognosis guarded
Not Parkinson's
Questions to ask doctor:
What is the infection?
Is it treatable?
Shunting procedure - what if he doesn't have it?
What about life support?
Insurance questions - what treatment would you prescribe if he had it? How much money?
What are his chances of regaining normalcy?
Physical therapy?
Ask about foot protectors.

Monday Morning April 25 Observations since 7:15 a.m. - Amy
More alert
Asking questions concerning his condition
Aware of infection
He has sores on his angles and heels
Asked what music was on. Said "think it helps."

9:00 a.m.
Mark from ASF called. Understands the problem regarding shunting.
Is putting urgent on our case to get faster response.
Very warm and friendly.
Requested medical records from the doctor.

9:35 a.m.
Bath
Has foot protectors for heels
Restless, shaking started again

Noon
Talking incoherently
Seems to have a sore mouth have doctor look inside.
Vital - we need his driver's license for medical power of attorney
SS Card
Have doctor sign HIV form today. On table.
Rob/Matt we need to have medical power of attorney signed.
Amy has appointment with medical staff at ASF. Leave all Bob's ID stuff at Mom's so I can take to meeting.
Need bank statements for last 3 months

Tuesday April 26 - Matt
3:00 p.m.
Dad is sleeping soundly.
He has eaten 50% of breakfast.
Social Security Office closed tomorrow.
Day of Mourning – President Nixon.

Wednesday April 27 – Rob
2:15 p.m.
Dad sleeping soundly

3:20 p.m.
The doctors can’t release records without signature (Dad’s) or power of attorney
Wednesday April 27 – Amy
Saw ASF benefits counselor
Will fill out additional forms
Need help with pulling records. Rob can you spare time on Friday morning to help me at Mom’s? Leave message on my machine
Matt – we need set of copies of all his medical records. Call Angelique (sp?) at Laguna ASF office and make appointment with her regarding conservatorship.
Fixed heel protectors.

Thursday April 28 - Matt
Dad is awake but groggy.

6:40 p.m. – Tony
Ate most of his dinner (such as it is)
Recognized me. Even said “Tony”
Resting very quietly
Became pretty alert at about 7:30. He drank 1 1/2 containers of juice.
Had a nice visit.
Amy -The nurse said Doctor Conner called at 6:00 asking for you.

Monday May 2 – 11:00 a.m. -Amy
Sleeping
Amy got medical records, SS card and labs from doctor’s office in Laguna.
Have appointment with SS 1:45 today
If anyone is here, when doctor arrives ask about the shunting. Has he gotten a neurosurgeon? When etc. Also would like to know what Bob’s sense of time is.
What state is his consciousness in daily?

Wednesday May 4 – Amy
3:30 p.m.
Pneumonia much improved
Condition will remain same until we can get a surgeon to perform shunt
Insurance is hold up.
Bob slept all day. Ate a good lunch.
Gary was by.
Amy went to SS today. All forms turned in.
Stopped by court house regarding conservatorship. Looks like we will need a lawyer
Will call legal aid society first.

Wednesday 5:00 p.m. – Peggy
Still asleep

Thursday May 5 - Amy
Very alert at lunch.
Lenny here . Fed him lunch
Gary came
Bob definitely aware.
If doctor comes ask about neurosurgeon and time frame.
Pro’s and con’s of shunting?
Risks after?
If no shunt, what about quality of life?
Life expectancy?

(Aria- A Sister's Journey with AIDS to be continued in the next post - Power of Attorney)