Monday, August 22, 2005

Long Week, Sacred Land

Well, if anyone is still around to read this blog, I've returned. This week may still be sketchy in terms of posts. I still have a few things left to do.

On August 14, my mom called from the hospital. Her only brother and living relative was taken from the rehab center to the hospital because he had pneumonia. He had just been in the hospital for a very nasty infection in his legs. He had Muscular Dystrophy (in an earlier post I said Multiple Sclerosis, but I was in a hurry and wrote the wrong disease). He had lived with it for over 35 years in various conditions, mostly unable to walk the last ten years. This caused him to have edema and multiple complications.

He was at the rehab center to get back to some condition where he could go home to his apartment in a retirement community. This had been a long struggle and he had the same issues for over a year. I had tried to get him to move closer to us or move to an assisted care facility that could make sure that he was helped in and out of bed and better monitored, but he refused. During his last hospitalization, we discussed going to a nursing home. He also refused that.

He was not incompetent, I just think that he felt a nursing home was the "end of the line" and wanted to avoid it as much as possible. He didn't want to live with any of us, but wanted his independence. I had pretty much given up trying to convince him to do anything different. In between that, my mom would go to his apartment at least three times a week to take him food and check on him.

I wasn't nearly as attentive in the last few months, only visiting him about two times a month. I felt bad about that this week.

Of course, my mom was feeling very guilty about her time, not going out there more often. But, as I told my mom this week, you really don't know how your time is measured. He had been in the hospital twice before for the same infection, even though he had home care nurses and therapists coming to his home. I think we all assumed that this last hospitalization and then rehab was the same as before, just another routine in the life of an older disabled person and he would be home soon again. He was planning on his niece and wife's cousin (his wife died about 8 years ago from cancer) coming from Mexico to visit. It was planned for a year.

Anyway, last Saturday night I was babysitting for my brother and his wife. I loaned them my truck since their's did not have it. They were supposed to take my cell phone, too, but forgot. My mom called from the hospital and said that Uncle Donald was on a ventilater. She didn't say he was in a drug induced coma. I don't think she knew that. Neither did she understand the seriousness of his condition. She knew it was pneumonia, but the nurse couldn't give her much details so she assumed this was just another bout of illness.

See, nurses aren't in the habit of giving out a bunch of information about patients without direction from the physician.

My mom called Saturday and asked me if I would come. Obviously, I couldn't because I had no car and couldn't contact my bro. I told her to come home and rest (the nurse concurred) and I would go with her in the morning.

7:30 AM Sunday, August 15th, the doctor from the hospital called and asked us to come down as soon as possible to discuss Donald's condition. I spoke to the doctor and then told my Mom that we needed to go. The doctor had actually given me more information and though he was doing the "we can talk about Donald's condition and treatment" I knew that the doctor calling at 7:30 AM on a Sunday meant that he wanted to discuss how far we wanted to go, this is the end of the line, etc. He asked if Donald had a DNR. He didn't, but we would complete one when we came down.

I broke it to my Mom, though very gently and did say we needed to discuss disconnecting the vent as the doctor had given me enough information about his condition and treatment to know that he was really no there anymore, just machines. I wanted her to get information from the doctor so she didn't think we were pressuring her to do something unnecessary at this point, but I wanted her to be prepared.

My mom was in denial. She kept asking if they were saying when he might wake up. I kept trying to tell her that it wasn't going to happen. Finally, I said that I had to get a shower and I would go with her down to the hospital. I woke my brother up (I had stayed the night since they came home so late while I was baby sitting) and told him what was up.

My mom started making phone calls. One of the calls that came in was my Uncle's caregiver from the agency who wanted to go see him but didn't know how to get there. My mom told her to come to my brother's and we would all go down together.

I came out of the shower as she came in and told them I needed about 15 minutes before I was ready. I gave my mom my cell phone and told her to call my other brother in Arizona then I went back into the bathroom. A few minutes later, the caregiver knocked on the front door. My mom had went down to her car while she spoke to my brother. The caregiver said that there was something wrong with my mom and I should come down immediately. When I got there, my mom was sitting in the car seat with the phone in one hand, her head in the other, her face very red and crying almost hysterically. When I asked what was wrong, she said her head hurt. I asked if she had hit it while moving her stuff around in the car. She just shook her head and kept saying her head hurt.

I wasn't sure what was going on so I yelled to my youngest bro to come on because we needed to get to the hospital and check on Donald. I thought my mom was just really upset about Donald and wanted to get down there. We jumped in the car and took off for the 25 minute ride down south to Shawnee Mission Medical Center. My mom kept crying. I was driving. I was trying to comfort her a little. My brother and the care giver were in the back seat, occassionally leaning forward to pat her on the back and do the same.

As we got to the main highway, my mom started asking me where we were and where we were going. At first, I thought she was just upset. I told her we were in her new car and going to the hospital. What proceeded was probably the scariest moments of my life. She kept repeating the same ten or so questions over and over again. Like a broken record. I mean that exactly as it sounds. The same exact questions in the same exact words in the same exact order. As soon as I finished answering the first round of questions, she would pause a few moments and then begin it again.

When I assured her we were going to the hospital and yes it was where Uncle Donald was, yes she had been on the phone, yes she was talking to my brother, yes we called him back, no I don't know if she blacked out, I don't know why she didn't remember anything and yes, it was a good thing she filled up the car. Pause a few seconds, begin again. In between she said her head hurt. Her face was very red.

About eight minutes into the drive I was pushing the car at 80 through the construction zone and mentally kicking myself for not getting off the exit several miles back at the closest hospital. She was exhibiting signs of shock or stroke. Short term memory loss is a give away. My brother was in the back with the care giver and both of them were conversing about something, but I didn't hear them except my brother's occassional admonishment to slow down in some sections of the construction.

Later he told me that part of their conversation was about whether he should drive and the other part was him praying (really, and that is unusual) that we wouldn't die on the way to the hospital.

I made a 25 minute trip in about 12 or 13 minutes. My mom was asking the same questions for about the 50th time (no shit). I pulled up to the emergency entrance, had my brother help her out, called for a wheelchair and we got her inside quickly. She remembered things like her birthdate, her SS#, her medication, but she couldn't remember how we got there, where we were, what we were doing, etc (my brother later told her it was a good thing she couldn't remember how I was driving her car).

They took her blood pressure and it was 220 over 112. Very bad.

They took her in the emergency room and I gave them info while they checked her out. The whole time, she was still asking the same questions over and over. The ER doctor asked how long it was going on, when I told him about 30 minutes by this point, they started running a bunch of tests. I sent my brother up to the ICU to chat with the doctor real quick about the situation.

He came back utterly confused except to say that Donald's condition was unchanged since this morning and still on the vent. After getting mom settled and seeing her through most of her tests and answering admit questions, I told my brother to stay with her while I went upstairs to check on Donald. The long suffering care giver had went up and seemed very upset.

I had a few minutes chat with the nurse who then paged the doctor. I told them I was in the emergency room and have them page me when he called in, going back down to wait.

My mom was still in the same condition. Agitated, didn't know where she was, how she got there, why, what was going on. The same questions still.

Finally, an endocronologist called down to the ER about my Uncle and was discussing whether we wanted to authorize dialysis. Donald's system was failing. His blood pressure was ultra low and only being kept at a "living" pressure by drugs and machines. I knew that dialysis could result in immediate heart failure in his condition and told them I wanted to wait before making that decision. Then I was called back into the ER with my mom as a second doctor came in and asked questions.

Then Donald's main physician called down and wanted to know if we would give a verbal "DNR". Yes. I gave that.

Now my mom wanted to go the restroom. Got that arranged. (She still didn't know where she was or why).

Then the pulmonologist for Donald called down and said he wanted to have a conference with us. I asked if we had time while I dealt with my mom. He said yes, we should take our time and call when we were ready.

Time flies when you are having fun, at this point, we'd been at the hospital for three hours. My mom's condition hadn't changed. That was scary. Another doctor came in and asked my mom questions about what day, date and year it was. Who was president, etc. She thought it was June 22, 2006. Saturday. She couldn't remember getting up, getting dressed, eating, brushing her teeth, calling my other brother. Nothing.

Five hours into this and several trips up and down between ER and ICU and then outside to make phone calls, the neurologist came back and said the CAT scan was inconclusive on my mom and he thought maybe she had "global transcranial amnesia". IE, shock causing short term memory loss. It does happen, but I wasn't buying it. He saw I wasn't buying it. He said they would do more tests and wanted to admit my mom (who still asked the same questions over and over except she was now incorporating a few more questions about who she worked for and that she needed to go to work tomorrow if it was Sunday - tomorrow being Monday).

Finally got her settled and resting in her room. Went back upstairs and there was no change in Donald. He looked bad though. He was bloated and his tongue was sticking out around the tube. I looked at the six pumps hooked up, not including the vent, what they were pumping into him and realized that my mom would not be in any condition to make decisions about what to do because what to do was going to include instructions to disconnect the vent. Still, I knew if I told them that while she had not seen him one last time she would be very angry. I explained the dilemna to the doctor who said that we "had time" but he couldn't say how long that was.

Several hours later, my mom finally came to her senses. She now could not remember how she got to the hospital, being treated or asking questons, but stopped asking the same questions over and over and now made logical sense. Some family from my dad's side came up to see her immediately so I had a couple of hours of reprieve before having to break it to her. I had already instructed the staff to call me first if something changed with Donald.

In the meantime, we had arranged for my sister in law to drive the care giver back to her house. My brother had taken duty in between going up to ICU and staying with my mom so I could go up. My dad (my parents are divorced 16 years) was at my house putting in my new water heater. I sent money with my sister in law to give him to buy the parts. Gave him updates. He was being a pain in my ass a little since he kept asking what was taking so long and why I didn't just give the doctor the go ahead to pull the vent on my Uncle. I knew he thought he was being helpful and concerned about dragging out a bad situation and not making my mom make that decision, but he did not get the whole, "if mom doesn't see her last living relative and only brother before he dies, it would be worse" thing.

Finally, I took mom up to see Donald and she started crying. The nurse called Donald's doctor who my mom insisted on talking to when I was done and who, like all doctors, was trying to tell her that we should make a decision without telling you what to do, but she latched on his comment about being able to continue doing everything they could if she wished. She wanted to do that and insisted that she had to wait until his niece from his wife's side of the family had a chance to make it there. They were in Mexico. They had taken care of him when he lived there for two years after his wife died of cancer.

When I suggest that we didn't have time, she got really upset, so I said nothing but had a last conversation with the doctor about the prognosis. Very poor, he said (ie, he's not coming out of coma no matter what).

My mom kept saying to Donald that he was strong and he could fight this thing. I knew she still wasn't accepting the reality of the situation and I was dreading having to try to convince her to let go (she had his durable medical power of attorney).

Took mom back to her room, stayed there for several hours until she went to sleep, finally went to get food and go home to rest.

Next morning, Monday, my brother and I went back to the hospital. They had already had my mom down for several tests. An MRI showed she had a "mini stroke" (duh). She would need her blood pressure medicine changed. I went up stairs and the nurse was happy to see me in the ICU. Donald's blood pressure had dropped even more and they didn't think they could keep it going artificially much longer. I told them not to call my mom and that we would be back soon to talk to the doctor with directions.

I told my mom. She made me call the pastor to come and give "last prayers" which is the Luthern version of "last rights". She still wanted to wait until she talked to Monica in Mexico. Finally, though I dreaded bringing on another episode, I told her directly that he was only being kept alive by machines and he was not coming back out of the coma. I was starting to resent "Monica in Mexico" because we couldn't get in touch with her and we were dragging out a bad situation for the hope that this person, whom I had never met, would be able to get here in time to see him before he died. I had the pulmonologist called again and let my mom talk to him. She still asked him if he thought we should disconnect the vent. I said, "Mom, he cannot and will not tell you that. All he can tell you is his condition and prognosis and he's telling you he has no chance of recovering from the coma or living without the vent."

You know, they tell you that God doesn't give you anymore than you can handle. God must have had me pegged as Hercules that day.

Finally, she agreed but wanted the Pastor there first. We went down stairs to wait for him. He came about a half hour later. He was short, rolly polly, red cheeked and bald on top, but he seemed very nice and strangely jovial. He knew my mom and uncle, but he didn't really know my brother and I since we didn't go to that church (actually, we are bad, non congregational sorts). We went up to Donald's rooom again. The nurses said we had to dress in gowns and gloves if we were going to touch Donald due to the nature of his infection.

While we did that, the nurse called the doctor and handed me the phone. I gave him the verbal to order the vent removed. We went in and stood around the bed, holding his hands while the pastor gave "last prayers". My mom was quietly sobbing in the wheelchair. I was crying, but I really couldn't tell you if I was crying for Donald or because my Mom was crying or because I was scared she was going to bring on another episode. About three minutes later, he was still "breathing" on his own, but barely. I watched the monitors slowly receding. Right in the middle of this, the ICU nurse says that Monica was calling.

My mom went out and began telling Monica that Donald was dying. However, you have to know my mom because she won't just state the facts, she has to tell the whole story, no matter how long and unnecessary (see, I come by in naturally). I kept trying to tell her to get off the phone and come in the room because the monitor was just about at nil and he was passing. She kept saying "just a minute". Finally, I saw the monitor go flat, "Mom! Let me have the phone. Uncle Donald is passing."

Actually, he had passed at least a minute before while she was blabbing on the phone. All this pain in the ass and she was blabbing on the phone when he died after all. She dropped the phone and went into the room, beginning to sob again. Nobody told her he had already died. I told Monica, whom I did not know so I think I was more dispassionate than I could have been, that he had just died and she started weeping. She said she would be here the next day.

The nurse turned off all the machines and we stayed in there for awhile with my mom. Actually, it was mabye ten minutes. For the first time ever, in the quickest time ever, a "bereavement" specialist came to the room and asked to speak to me. He said that we needed to call the funeral home and have them come get the body then took my arm and said, "let me show you to the phone". I realize now that they were just trying to keep us from being paralyzed, but I swear that was the quickest I had ever had somebody trying to tell the "grieving family" to get the body out of the room. When my grandma died, they told us we could take as much time as necessary.

I think I was in shock a little. I told the gentleman that this death was unexpected and that we did not have a funeral plan or home arranged to take care of it and I needed a few minutes to consult my mom. I'd like to say I took this guy wrong, but as a "berievement director" and supposedly the chaplain, he was the coldest fish I'd dealt with in a long time. I told him to leave all the forms with the nurse and I would sign the releases when I was done.

The nurses were much nicer, knowing my mom was also a patient, and told us to take our time. I will say that the entire medical staff was extremely nice.

When we got back to my mom's room, the nurse came and said the doctor would release my mom that night since she was no longer showing any signs, physical or mental, of her small stroke, but they would wait a few hours checking her vital signs since she just had another traumatic event.

She was fine, though still crying once in awhile, but we were able to take her home that night.

That was the start of my week seven days ago. The rest of the week was spent arranging the funeral, getting my mom's medicine, picking up our distant relatives from the airport (Monica and her mom) and all the other things that go along with it.

I'll fill out the rest of the week later, but I will say that Monica and her mother turned out to be very nice ladies. Monica spoke very good english and her mother spoke none, but we did pretty good. As soon as we met them at the airport, Monica grabbed me and kissed me on the cheek. Very Euro/Latin America. For all my ill thoughts of Monica on Monday, she and her mom turned out to be "family" after all. More on that later, but it was a highly enjoyable visit given the circumstances.

There's lots to tell about arranging the funeral as well. I really feel like I spent way too much time at that funeral home. However, they did an excellent job arranging everything and not pressuring us into buying anything extra and helping us arrange things with Leavenworth Natinal Cemetary. My uncle was a member of the VFW (he was a Korean War Vet) and we received a discount on the funeral as well as arranged to have the VFW give the final military honors including the flag ceremony, 21 gun salute and taps.

When we drove up, the VFW members came to attention. When his casket was unloaded from the hearst, they presented arms. Two members of the VFW escorted the coffin into the small memorial chapel for the grave side services. Four men, two flag bearers (US and Air Force) with two sentries, stood by the door of the chapel.

VFW renders military honors.

Many people from the retirement home came to pay their last respects. Mr and Mrs. Lucky Mendel. I wanted to say their names because they were very good friends to my uncle. They cried the day we came to tell them the news and when we gave Lucky my uncle's electric wheelchair. Lucky is also a Korean War Vet and had been having problems getting around lately. We decided that he should have the wheelchair.

The head VFW member gave a small speech about service to country, read a prayer and then proceeded with the ceremony. I wish I could remember the prayer because it was quite lovely and talked about fallen commrades who had gone before. The chosen VFW members folded the flag and handed it to my mom with a few brief words about honor and service to country, then stood back and saluted. We heard the sergent at arms give the command to present arms and prepare the 21 gun salute. Three perfect vollies. I guess some of the people didn't know that's what would happen and they jumped when the first volley rang out. Then the bugler played the opening strains of "The Wild Blue Yonder" (my uncle's last service was in the Air Force) before going into taps. I could tell that surprised some people as well, but it was an interesting addition to the service.

As they played taps, the head VFW member read the words in time to the bugler:

Day is done,
gone the sun,
From the lake,
from the hills,
from the sky;
All is well,
safely rest,
God is nigh.

Once that was completed, I heard them give the order to attention, rest and then fall out.

They left before I could thank them.

Pastor Burows then gave the final service. I haven't attended Luthern services in years and I was struck by the similarities to Catholic services with the sign of the cross and the Lord's Prayer. The Pastor gave a brief story of Donald's life and then talked about faith. He talked about how all illness, deformity and pain are gone and that we all walk finally perfect in the eyes of God. Final prayers and the service broke up.

The director for Leavenworth National Cemetary was also very nice and helpful. He provided us with information and a map showing where the burial site would be.

Leavenworth National Cemetary, August 19th, 2005.

If you've never been there, you don't know how beautiful the cemetary really is. It may seem odd to call a cemetary "beautiful", but when you stand on the hill near the memorial chapel and look out over the cemetary, you can see the rows and rows of white marble head stones on rolling green grass and under shaded trees, lined up perfectly with their neat and simple engravings of names, ranks, honors and wars.

It truly is a sacred place.

If you want to teach your children about duty, honor and sacrifice, walk by these headstones and read them.


Anonymous said...

Please take some time to look after yourself. God has given you the strength to endure this tragedy and sometimes endurance is all we have. I will certainly pray that God will grant you peace and contentment. Bless you.

Gadfly said...

I can commiserate fully, having just buried my father. I understand your suffering, the frantic "what should be done" agonizing over proper courses of treatment. It sucks.

FbL said...

Hugs to you, dear Kat. You were amazing. Yes, time to take care of yourself and recover.

Roberto said...

Thanks for sharing, Kat...We all look forward to more of your insightful commentary....when you are ready.

Mixed Humor said...

Sorry to hear about that week...was wondering if you were on a mini-vacation.

Condolences and best regards,


Scott from Oregon said...

I did the eight weeks of hospital duty a few months back, as my Mum went in with pnuemonia and came out mostly in a wheelchair. Death is not what seems the cruelest, to me. It is the period between being vibrant and alive and death. That period of just being old and decrepit and sick and knowing that this is it, for you. The best you have left in your body....

Brave are those who work in hospitals and witness this period of the human life cycle on a daily basis....