Life Goes On

Allowing two months between posts may not be the way to gain blog followers, but sometimes it is the best way to maintain sanity.  During the past two months since Mother's Day, mom's health has remained fairly good, with only one intervening infection that was relatively short-lived. I have endured a couple of bouts of depression which, while difficult, were at least easier to weather than in the past. Next week we will be embarking on our first respite break - one week during which I will camp and fish alone and mom will be cared for in a private room in a nursing facility. I'm looking forward to finding out what this will feel like, leaving her in the hands of others for a short predetermined space of time. It is something that I absolutely could not have done even last year, so this marks a major growth for me. It is also something that she was too anxious to face until recently, so growth for her, as well. My hope is that all goes well and we both return refreshed and able to continue our usual routine with renewed energy. My hope is that the process runs so smoothly that we will be able to do it again as soon as the opportunity presents itself again, in about sixty days.  I hope she has fun and enjoys interacting with others.  I feel like a mother sending her daughter to school for the first time.

Happy Mother's Day

"What's your pleasure, oh Joy of my Life?" I asked mom this question about half an hour ago and she couldn't think of anything she'd rather do than come home for a nap.  Earlier today we went to Starbucks (for the first time in a coon's age) and then went to see the movie Water for Elephants.  It was a good outing, but by the time we got home I could tell that she was flagging. Now she is resting in the living room while I'm sitting here typing this entry. Mother's day has always been one of my favorite holidays. The flowers above came for her yesterday from my brother and his wife. Aren't they gorgeous? :) 

I want to share two of my favorite gifts I've given her in the past with you. One of them is a poem I wrote for her when I was 19, just after our lives had fallen apart and we were beginning to struggle through picking up the pieces and building a new relationship with each other:

Mother's Day 1989

Sometimes it seems as though it's difficult for me

To express my feelings for you;

Words don't seem enough.

So I listen to my heart and paint a picture:

When I'm alone in the dark

Alone and frightened

It is your hand that reaches out to comfort me;

When I am lost and confused and I can't find my way

It is your voice that rings out clearly to lead me home;

When my heart is breaking and everything is wrong

It is your eyes that glisten in an echo of my own tears;

When it seems as though the entire world is sick of me and wants me to crawl away

I know that I can come to you

And with you, I need no one else

Because I know that you will always care.

And when they praise me for a job well done

I know your heart is bursting with joy to share my happiness

When I'm unsure of myself and afraid to try

You are always there, and the simple beating of your heart

Gives me courage.

I know that I can accomplish anything my heart desires

And go anywhere my dreams want to lead me

And be successful there

Because even when I don't know, you do

And you have faith enough for the both of us.

"I love you" seems so cliche, it's hardly worth saying

But you are so much a part of me, and so important in my life

You will live in my heart forever: I know you will always be with me

I praise God every day I live that he allowed me to be your child

Because no one else could have done me any better, not ever

And I will always be here for you, whenever you need me

Because I love you, Mom.

It's as true today as it was then.

The other gift I want to share with you is a locket I purchased for her in the mid 1990's. In it I placed the high school graduation pictures of myself, my mom, and my grandma, along with the legend, "Mother's Love is Eternal."

Happy Mother's Day to all of you from both of us.

Taking Care of Business

Every time someone you know loses someone they love, they say to make sure you tell those you love you love them every day, to live every day like it's your last. Mom and I have been in the habit of telling each other we love each other so regularly for so long that I can't remember when it started, although I suspect it was shortly after I graduated high school and left home (which at that point made expressing our feelings much easier). In fact, we say "I love you" to each other so often it would probably get on someone else's nerves if they had to be around us for very long. Sometimes I ask mom, "Are you sick of hearing me say that?" and she'll say "of course not!" and we'll laugh. When I was little we even went through a period where we had a code for it: squeezing the other's hand 3 times, for I. Love.You.

It's weird I know (even to me, sometimes) but I can honestly say I think that mom and I have no unfinished business. One of the questions the social worker for the hospice asks is about what unfinished business mom has in her relationships and what she would like to see happen. Mom couldn't think of anything to say. Everyone she loves knows she loves them. She has no unfinished arguments or issues with anyone (except for maybe my dad, and he's beyond finishing anything). She and I long ago passed into a habit of peaceful co-existence that seldom sees a disagreement and all of those are misumderstandings which rise more out of exhaustion than anything else and are quickly cleared up. We understand each other. How many people can actually say that?

I've been extraordinarily blessed in my life to have not one, but four people with whom I share this kind of relationship. People with whom it is not necessary for me to speak unless I feel like it, with whom companionable silence serves us just as well as the raucous belly laugh or the heartfelt conversation (or hug). I'm not sure why I've been so blessed. But I cherish my mom and I'm happy and honored to be sharing this last era of her life with her. I'm glad we have the good relationship we have. It's hard but doable. I can't imagine how on earth we would be able to function, dealing with our day-to-day challenges, if we didn't have each other's understanding. And love.

It Could Always Be Worse

I find it extraordinarily difficult to write on bad days. By bad days, I don't mean days that go badly, necessarily, but just mom's bad days. She has a lot of them. For the past several days her mental status has been dropping severely in the evenings. Tonight we came home around 4:30 from eating out - a rare treat and something we did today to celebrate my father's probate finally being closed. She immediately locked on to the idea of looking for some books that have been on her mind lately. They are children's books that she has remembered owning for some reason, and they are nowhere to be found in the upper part of the house. Although she knows (or knew before) that she cannot reach the basement on her oxygen, she asked about going down cellar to look for the books. I told her that wouldn't work since her oxygen won't reach and the work would prove too strenuous for her. "Well shit," she said. (A completely uncharacteristic response). She was mad at me. I asked her calmly not to be angry and reminded her that I don't set her rules, but that I only try my best to remind her what's best for her. She shrugged it off. I watched her for a while, exhibiting more confused behavior (messing nervously with her journal, worrying over what day it was) and finally she said (or meant to say - it got a little mixed up coming out) that she couldn't think as well as a three year-old. I told her things aren't quite that bad and reminded her that they could always get worse. I suggested that she consider going to bed early, and she agreed it was a good idea. I gave her her meds, helped her get dressed, ushered her to the bathroom to take care of her teeth and toilet, then tucked her in bed. About an hour later she got up, telling me she'd had a bad dream and needed to check to make sure the stove was off. I assured her and reassured her that it was off and everything was fine. Half an hour later, I came by her room on the way to mine and she asked me if I had just said "Daddy." I had been talking to the dog, so I told her she must have heard me say "Paddy." She said "Oh, that's better." You bet your ass mom, I thought but didn't say.

The truth is that I dream of taking some time off. I have been told that I shouldn't feel bad about this, that time off is a normal desire for a primary caretaker and even necessary for one's sanity. The trouble I have with this is that it links clearly in my mind to resentment of having to take care of her. I don't care how normal it is to resent being in my position, I don't WANT to resent my mom. But I do at times, and it always breaks my heart. I'm working on taking it easier on myself but it's damned hard. Anyway . . . the hospice (with Medicare's blessing) allows for five days per year of off time, 24 hour days. If I elect to take this time off, Mom would be moved into one of their homes for the few days when I use them. I have recognized the need in me to take a break ever since she came home from the hospital in January and got admitted to hospice, but I can't seem to make myself do it. Yet. It isn't really like, but it feels like I would be condemning her to a jail of boredom for the time I would be gone. It's rough on her mental status, and things happen to her when she's in residential care that scare her. I'm only just now beginning to get the full story on some of the hallucinations she had while she was in rehab. Sigh.

I used to take mental breaks on a regular basis, where I would find somewhere to disappear to and no one in the world would know where I was. I would call mom and let her know I'd arrived okay, and then leave her a number for emergencies only. Then I would take 2 - 3 days to myself. It was grand and mysterious and relaxing. And quiet. I am learning to revere the quiet. I get a few minutes or so of quiet to myself throughout the day and it's where I find the scraps of my sanity and begin to mend them back together. Until I can screw up my courage for a real break, it will have to do.

Picking Our Battles

Being mom's primary caretaker (and being her daughter) necessitates taking on another role - being her advocate. I try to do my best to make sure that her medical staff takes good care of her but does so with compassion. However, sometimes compassion is hard to come by in medical offices. Administrative staff especially (in our experience) can be unfeeling and harsh at times. An important skill I have learned is when to hold my tongue and when to let it go.

Last week I had scheduled an abdominal/pelvic ultrasound for her at the request of her primary physician, a man that everyone in our family loves and idolizes. She had been experiencing some pains in her abdomen and he wanted to make sure that everything was okay. Neither he nor I thought about the fact tthat the pelvic ultrasound prep could turn out to be a horrible trial for her (as it can for any woman). I had her drink her 32 ounces of water before leaving for the appointment, knowing that she would be in pain before we got there from having to hold her full bladder, but not expecting what was going to happen.

Apparently, she was so dehydrated that the water rushed to her bowels instead of filling her bladder. Halfway to the appointment and stuck in morning traffic, she told me she needed to make a bowel movement. I hung my head and asked her to hold on.

We arrived at the office, where I asked her to sit down while I got her checked in. She was telling me she couldn't wait anymore, so I informed the receptionist of the situtation and asked her to let us use the restroom. She told me that doing so would require rescheduling the pelvic portion of the exam (which I already knew). I told her I understood but we needed to go. She told me the tech would be out in just 2 - 3 minutes and asked me if we could wait. I asked mom to wait. She made it about one more minute before telling me she couldn't wait anymore. I told the receptionist we couldn't wait anymore and she repeated that we would ruin the pelvic exam. I told her, "I know, but we have to go. Now." Meanwhile there are five other women in the room watching the situation develop. And I was painfully aware, even if the recptionist was not, that the exam would be ruined either way. The receptionist tells someone else what is going on with us, then comes back and repeats, AGAIN, that we will have to reschedule the pelvic exam. I refrained from strangling her and took mom to relieve herself.

We returned to the waiting room and sat down.Ten minutes later, mom looks at me and asks if they forgot us. I told her that I was watching the clock. After another ten minutes, I took another deep breath and went up to the counter. "I just wanted to let you know that she was able to hold her bladder," I said. "So it's twenty minutes past her appointment time and we've been here half an hour?" The receptionist said, "Oh, I know! It''l be just a few more minutes . . . " I couldn't help saying, "I just couldnt' tell if you were making us wait longer because of the bathroom or what."  Then the receptionist finally said the previous patient was just taking a little extra time to complete and the tech would be with us as soon as possible.

After the exam was over, they asked me to reschedule the pelvic. I already knew I was going to have to fight to cancel it, but I went ahead and scheduled it anyway. Then on the way home I called the doctor and left a message, explained that we had failed the pelvic, and asked if it was really necessary. His nurse called me back and and said he really wanted it but they could possibly do a CT scan if that would be easier. So I thanked her and cancelled the pelvic. We can talk about the CT the next time we see the doctor in person.

Mom's abdominal came back normal and she is no longer having pains. After discussing this with her and the hospice nurse I'm pretty certain that the pains were caused by constipation brought on by dehydration. The doctor will understand, I know. But I'd never try to explain that to a receptionist. Pick your battles, kid.

I screwed up by allowing them to schedule it in the first place. It won't happen again.

Easter Sunday

I'm sitting here having a relatively quiet morning this morning and remembering the Easters I had as a child at my grandmother's house. I don't know what today will bring (mom is still sleeping off a headache) but I know it will be nothing to equal those days of egg hunts and massive grandma feasts. We may make it to church this evening or not depending on how she is feeling, or we may stay home and watch TV. I miss my grandma but I feel she is close to us and so does mom. Do you ever get that feeling that someone you have loved and lost is hanging right over your shoulder, watching or laughing with whatever you do? We do. That's one of the reasons I know mom will always be close to me, even after she has moved on to heaven. Today especially I am reminded that we will be reunited in the resurrection. Happy Easter to all of you from us.

When's the Big Day?

If there's one thing that Mom and I have learned over the past few months, it's that people can be really funny about death. I'm not mentioning this to make light of anyone's feelings or to say that we haven't had our weird moments, because we have. But for us, at least, it's been more like a "benture".
When we were younger, I would look at mom, usually on a boring day, and say, "Hey mom. Wanna go on a benture?" and she would respond, "Sure!" and off we would go, usually on a road trip to some not-too-far-off small Kansas town where neither of us had been before. Most of these trips would end up just being a drive in the country, no big discovery. Sometimes we would hit tourist traps like the Indian Burial Ground that used to be out near Salina, or the Old Abilene Town. Sometimes we would end up shopping. Usually we would get a coke, or if we got hungry, stop somewhere new to eat. In Spokane, most of our "bentures" would exist of trying out new places to eat. Nowadays, our bentures are all but non-existent. Road trips are difficult as she is too debilitated to walk very far or sit up in the car for long trips unless she's having a good day, and there is always the math on the oxygen to consider. We still make road trips home to JC where I grew up to visit my best friends and my God daughters, and we have the routine down pretty well for that even though it has to wait until she is clearly on an upswing of good days. But all spontaneity has pretty much flown out the window and down the lane.
Our new benture is planning her funeral. I'm not sure how to break this to you, but we both find it an odd combination of comforting and relaxing to work out these details. It was stressful (honestly just a bit) at first, but it quickly got to be more like planning a party. Some people think it's morbid and don't want to discuss it. Some people freak out and panic and think it's like, you know, tomorrow (it's not). Which leads me back to my original thought.
Mom has been a bit stuck lately (as she will get on some small ideas from time to time) on the concept of prognosis. She knows she's not supposed to get better (although the doctors have been impressed with her condition lately). She knows that the COPD is eventually going to kill her, and that the process by which this will happen is chronic respiriatory failure. We have discussed the end of her life at length because we had to execute a DNR order for her. But sometimes she forgets the details and wants to go over it again. Sometimes she'll say, "So, no one has mentioned a time limit or anything . . . " and I have to remind her that like the woman in the cancer center commercials, she has no expiration date stamped on the bottom of her foot. Her illness is cyclic, with ups and downs -- the ups being mostly healthy days and the downs being days when she has infection in her respiratory tract, which usually also negatively affects her mental status, making a hard day for both of us. Typically, recently, we've been having about 3-4 weeks of infection to 1 week of health. Some infections are worse than others. Her current one is mild and her mental symptoms are likewise pretty mild. The infection she had in December nearly killed her because it triggered a low sodium episode. So all things considered, it's a crapshoot. She could go anywhere from next week to ten years, although I believe the doctors think she's unlikely to last that long. The bottom line is there is no bottom line -- no one really knows when. Is it any wonder we've become practical? I'm trying to apply the same good attitude that we fostered toward planning her funeral to helping her plan her will. She wants to leave everything up to me and I want to give everything away now. We will meet somewhere in the middle, as we usually do.
We have taken care of our business with each other and have no unfinished business. This is odd, I know. Most people never get that. But we know we love each other and that makes it easier to have calm discussions about things. Plus, we've had lots of practice dealing with very difficult experiences, so that helps. I try not to let her see my grief anymore than absolutely necessary because I don't want her worrying about me anymore than she already does (almost constantly). She tries not to be a burden on me and I have to remind her that that's what I'm here for. We manage quite nicely considering our circumstances. The hysteria has passed for the most part. For now.