Questions

After years of helping others,  doing what I thought I was supposed to do, both as RS President and as a person attempting to be a disciple, I find myself once again questioning.

How is it that so few people are willing to help others?

How is it that so many people are so judgmental?

Where and how do I draw the line between watching outdoorsy own interest and helping others?

And the most troubling question: How can those in leadership positions not show more empathy? And how can I honestly feel fellowship for those I can no longer trust?

What Now?

Mom has been gone for nine days now. I find it really hard to write or think or talk about Mom. I just can't believe she's gone. On Monday aftgernoon, she was improving and the doctros expected to send her home on Thursday. Then Monday night I was called back to the hospital. I raced to get there and just got to hold her hand for a minute. Mom overcame so many things and bounced back form everything that I really expected her to bounce back once more.

Mom has been the rock of our family for so long. And caregiving, and especially Mom, has been the main focus of my life for so long. Now all I can think of is that my life is so empty.

Mom was SO happy just to have me around the house. I had hoped to be retired before now and to be able to spend some time with Mom. I had hoped to do some minor fix ups on the house and to spend more time just talking to Mom.

When I told Mom that I wanted her to stick around for a while yet she said, "What?! Do you expect me to live forever?" I didn't want to let go. I am glad that she no longer has to endure the pain. I am thankful that she had a peaceful, easy passing. But, oh, I miss her so much!

There's Always One More Thing

I remember thinking that I would never again book three appointments in one week because it made me crazy. Never say never. This past week I had three appointments before Friday, when I had five on one day. Needless to say, I took the entire day off from work to do this.

On Monday, I took time to turn in my retirement paperwork. I felt such an overwhelming sense of relief and lightness once I did this. My official retirement date is May 28th. I am dealing with an increased number of doctor's visits for Mom and lack of time to take care of my own health. And I really feel like I am not working at my job at the level I expect of myself. I find myself wishing that I had done this earlier.

We are still fighting Mom’s pressure sore problems. It gets better and then gets a little worse. This was one of our Friday appointments. The doctor prescribed another ointment and said he is going to schedule a home health nurse to come out. I hope that this will be a good thing. It feels like I am failing at my job of taking care of Mom. But I just want to be sure that this heals.

Fortunately, our first three Friday appointments were all at the same place. On the way home from these, I had a minor accident. Going around a curve, there was a big commercial truck pulling a heavy equipment trailer in the lane next to me. The trailer swung out a little too far and hit the right rear of my vehicle. No one was hurt and my car is drivable, but it took a more than an hour on scene to deal with the paperwork and then another hour on the phone. And I had to re-schedule the afternoon appointments. The most difficult thing for me is the extra time off from work and the extra hassle I will have to deal with to get the car fixed. I just don't want to deal with one more thing.

Does Anybody Really Care?

I used to love my job. I have put a lot into making my position valuable to the school. I used to feel that I contributed something valuable. I still think that I have contributed a lot to the school. I just don't think that anyone really cares how I am doing.

Now that people know that I’m going to be retiring, people who haven't made the time before to come get training on various software, now want me to put in extra time to teach them these things before I retire.

I got deathly sick at work on Friday afternoon. I had to crawl under a table to change a network cable. When I got up, I thought I was going to pass out. Then I got nauseous. So I ran to the bathroom and threw cold water on my face. Even so, I still felt nauseous and dizzy. I was working with a teacher at the time and she was upset with me when I told her I was sick and was going to have to go home. I sent e-mails (that I was sick and was going home) to the appropriate people and got back some "cute" comments. I have no desire to do this anymore.

My long-time co-worker begged me to stay at work until the end of May. The other person in our area was engaged to be married to a career military man (military intelligence). He got an overseas assignment and she was able to go with him now--or wait a year. So they got married this past weekend and she is gone. So I am going to try to stay until the end of May, but I may need to take more time off than I expected.

I applied for Social Security. For some reason I don't understand, I can't get it until July. If I retire at the end of May, I may not get anything from my pension until July. I just don't know how fast they process things. Fortunately, I have a little bit of a financial buffer so that we can get through a couple of months, if necessary.

I am so "done" mentally with this job.

Whirling Dervish

It's Saturday!

Today I need to:
Shop: I need to hit four to five stores (pet store, discount store, drug store, large bulk items store, ?something for me?)
Clean: All Floors (vacuum & mop), bathrooms, cats' spraying, cats' boxes & food.
Cook: Meals for next week.
Make copies: Church program for tomorrow.

So . . . What am I doing sitting here blogging? Just wanted to take a moment before I become a whirling dervish. :)

I am a coward. I admit it.

I dread dealing with anything legal, or new, or different.

Today, I was finally able to take off long enough to get his vehicle titles changed into my name so that I can do something with them. I cried on the way to the DMV. It seems like I cry every time I have to deal with closing or ending one more aspect of his life. That’s part of it, of course. . . really ending things. Another part is dealing with authority figures. Since I teach every day, you wouldn’t think these things would bother me. It’s not really that bad and shouldn’t bother me so much!

I think I learned this feeling of dread when Mom lost her leg. I could never have imagined how hard it would be to see her suffering and be unable to really do anything to alleviate it. After the initial days of thinking that at any moment we would lose her, the days of hospital, critical care and rehab seemed endless. During the initial weeks in ICU, I had to make a number of difficult decisions regarding procedures and her care. And after those initial weeks, everyone else went back to their normal lives and almost totally disappeared. No one called; no one came. At least not until I threw a hissy fit. (Maybe I expected too much of people.)

And then there was a year of doctor’s visits and tests nearly every day and rehab every other day--while still working. Rushing here and there...four hours a day of driving.

When Wes had his stroke, I dreaded dealing with a whole new set of doctors and testing labs and financial/legal concerns. Once again, I was off to doctors and tests nearly every day. It seemed like deja vu all over again.Now that he is gone, I wonder If I would have pushed harder for more tests and treatment if I had not dreaded the whole process so much. Or would I just have been needlessly putting him through more stress?

So, I got through one more dreaded ending today and most of them are done.

Now...back to dealing with Mom’s myriad of doctors.

A Common Life

For many years, I have loved this poem by Emily Dickinson:

If I can stop one heart from breaking,
I shall not live in vain;
If I can ease one life the aching,
Or cool one pain,
Or help one fainting robin
Unto his nest again,
I shall not live in vain

I think this aptly applies to those of us who take on the role of caregiving.This has been a comfort to me, when I have felt that life was passing me by and when I become frustrated, tired and angry. What I am doing has value.

And I recently came across another quote which really hit home:

“I am a common man with common thoughts and I've led a common life. There are no monuments dedicated to me and my name will soon be forgotten. But I've loved another with all my heart and soul, and to me, this has always been enough”. --Nicholas Sparks, from his novel: 'The Notebook'

Isn’t it enough to have loved and to have eased one pain? Sisters!

Someone stole our smiley faces. The bums!

On our door at work, we have signs with sliding smiley faces to let people know where we are. to give them some idea of when we will return. One morning last week, I found that someone had stolen our smiley faces.

Sometimes it seems like life events have stolen my smiley face. I went out to lunch with a co-worker and she said that she doesn't see me smile anymore and that I always look stressed.

I feel I am constantly juggling doctor's appointments and medical tests, and shuffling and re-scheduling appointments, plus shopping and cooking for Mom's restrictive diet, keeping up with the household chores. Lots of driving. Lots of time on my feet. When anything extra or different is added into the mix, I feel like it's going to push me over the edge. And it seems like there is always something extra.

I am still dealing with legal items from my brother's death, which really bothers me. Perhaps it shouldn't, but it does. I hate dealing with bureaucracy. And then, it brings his death to the front of my mind again.

Too often, at the end of the day, my patience is worn thin and I don't have the level of tolerance I need for Mom. And I don't have the energy to do the extras that mean so much to her.

My goal, right now, is to get more sleep more consistently.

I sure miss my smiley faces.

Courage

“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.' ” May Anne Radmacher

Sometimes I find it so hard to deal with the emotions that come along with caregiving. I find that most people don't understand...only those who are caregivers or have been seem to instinctively know that I ride a roller coaster of emotions. More and more, I find that many of the things that others think are important, and that I used to care about, strike me as shallow concerns.

I did a lot of crying when my brother had his stroke. But then, I envisioned time together. I still cry over his loss.

I cry as I see Mom go downhill; I grieve for her losses. Although I feel very selfish about it, I grieve for myself.

At the same time, I am so thankful for small acts of kindness and compassion from friends and family. I wonder how many people realize that even small acts of kindness can give another person the courage to keep trying each day. The smile, the kind word, the funny email, the phone call, the hug, the "I care" all help me to face each day and try to find joy in it. All of you are my angels.

Transitions

When Wes had his stroke, I felt like I had been hit upside of the head with a 2 x 4. How could I cope with this? I found myself grieving for the loss of the person he was, having to adjust to a different relationship--one in which I was the adult taking care of a large, lost child.

Somehow, we developed a routine and, even though there were more doctors, more meds to take care of, more juggling of time, everything seemed to work. And Wes seemed to be getting better.

And then, I found one morning that he had passed away during the night. I felt like I had been hit upside of the head with a 2 x 4 again. Had there been something more I could have done? Had I missed something? Had I not been aggressive enough in his care? As I think back on things, I really don't know if I could have done anything more that would have made a difference.

And then, there was the rush to take care of things. Having to pick out a mortuary immediately, having to make funeral arrangements the same day, having to deal with the funeral itself.

And then, having to go back to work. Everything is just supposed to go back to normal. I'm supposed to jump back in and be the person I was before all of this. And I really don't know what I'm doing and why.

Stress

I was watching/listening to our local PBS station the other night while I was getting ready for bed, after having helped Mom with her bath and closed up the house. I listened to a well-known author telling us that there is no stress in the world. It's all in how we decide to react to situations.

I find it hard to believe that this person has ever been in the position that caregivers are in. I can't believe that he has been in the emergency room at 3:00 in the morning with a loved one in incredible pain which no drug can touch....or watched the cognitive and/or physical decline of a loved one....or gone without sleep in order to tend to someone else's needs.

I agree that we can do a great deal to alleviate the stress of many situations. For caregivers, I think this is a constant effort. And when dealing with crisis, or ongoing crises, I don't see how it is possible. When you are in the trenches and bombs are being lobbed at you, it's pretty hard to keep your head up, let alone see the sunlight.

I think that caregivers are a pretty awesome group of people because we manage to hear the bird singing and see the sunlight, at least sometimes. We have no control over the bombs that are lobbed at us or the crises that we face.

I work every day to look for the good. Just the same, saying there is no stress does not make it so.

Holiday Dinner

Now that all of the kids are grown and have homes and families of their own, they rotate hosting holiday dinners. This year, the youngest boy and his wife have a house, rather than an apartment, and hosted for the first time. Everyone contributes to the dinner, so that all of the work doesn’t fall on one family. (I contribute my special dinner rolls.) They always fix special portions to meet Grandma’s dietary needs.

It makes me feel good to see that they all have married special people and that they get along so well together. It’s so great to see them all working together and just automatically helping with each other’s children…and children that automatically go to any adult in the family for help or attention.

We have a lot to be thankful for.

Birthday Dinner

Sunday, November 7th, was Mom's 92nd birthday. My brother was in town from Missouri and the kids had a birthday dinner for Mom. It's always good to be able to visit and catch up with each other. Mom was not feeling too good, but enjoyed herself just the same. Mom loves holding the babies and visiting with everyone.

The Blinds

November 4th, 2010

When I was young and shared apartments, we always had a division of responsibilities. Every Saturday, each roommate's chores rotated. Everything got done (usually) and the work was divided evenly (mostly). Every so often, over the years, I look at some chore and think, "I sure wish I had a chore wheel and I could point to someone else whose turn it was to clean the bathroom or the kitchen or . . . ."

I hate being the "man of the house." I have learned that "if it is to be, it's up to me." Needless to say, a lot of things don't get done around here. But I do get to open the blinds and unlock the doors in the morning and close the blinds and lock the doors every night. Day after day, night after night. I love our blinds, but they represent the fact that I am in charge. The blinds are the least of the things I am responsible for. But they are always, always there, every day, every night.

Respite Space

November 4th, 2010

We have had quite a number of guest speakers in our caregiving class. One such was an architect who specializes in universal design. One of her concepts is that our homes should have designated spaces. There are “dangerous spaces”; there should be at least one “safe space” and at least one “respite space”. What are dangerous and safe spaces? A “dangerous space” is any area or room which the caree cannot be safely left alone in. This might not apply to every one’s situation, but it is something to think about and to check out. As I have learned, I need to “Mom-proof” things. A safe space would be a room or area where your loved one can be safe without being watched or having someone with them. And then there is the “respite space”. This is a space where the caregiver can go to be alone, to be private, to take a nap, to read, or whatever for a short break.

So I have made my bedroom my respite space. Previously, I have always left my door open except when I am dressing. Now I have started trying to take some respite time for myself.

When I get too tired or stressed out, I can tell Mom and Wes that I need to rest for a bit. I am trying to get them used to the idea that sometimes I need some alone time. Sometimes I have more of a problem with this than they do. If I can go in my room and just be quiet for 15 minutes or half an hour, it helps me tremendously.

"Say a Good Good-Bye"

October 28th, 2010

As we look forward to Thanksgiving, I am reminded of advice that I read long ago. It was to “say a good goodbye.”

Remember that on 9/11 those people who knew they were about to die called those they cared about to tell them they loved them. This author suggested that we not wait until the end of life to tell people we love them. He suggested that we regularly sit down and think about what we would say to people, if we knew that this was the last time we could communicate with them. What would you tell them about what you are thankful for in your relationship with that person? What do you admire in that person? What would you want them to know? Tell them now.

When Mom lost her leg and was in critical condition for so long, I never knew when I left her bedside if I would see her alive again. I made it a point to kiss her cheek and tell her I loved her. Since I am less than perfect, I am sometimes less than patient. Then I need to give myself a time-out and try to think of what I am thankful for.

Shopping Lesosn

October 24th, 2010

This weekend was our “big” shopping weekend. I have been taking my brother along shopping with me. I have told him that I need the help lifting and carrying things since I had my hand surgery, which is true. It also makes him feel useful and gets him out of the house. It also tends to be stressful for me, since I have to walk slower so that he can keep up with me and I always need to keep an eye on him so that he doesn’t become overwhelmed by the people there.

We went to the big warehouse club store to stock up. Since it was close to noon when we were done, I thought we would get hot dogs there. I thought he had been doing better, so I asked him to take the cart and get us a table while I got the hot dogs and drinks. I knew this was a mistake right away. He got about 10 feet away and, with a lot of people moving around him, he just froze. I could see that he was confused and unsure of what to do. Fortunately, the line for food moved fast and I got to him in just a couple of minutes.

We talked about this in my caregiving class: that people with any form of dementia can become confused and upset in crowds or unfamiliar situations and that, as caregivers, we are their lifeline. Since he has regained a few basic IADL skills, I assumed he could handle this. It still seems so strange that I need to watch over him as I would a child. And yet, I need to try to treat him as an adult.

We did enjoy the hot dogs, though.

This Morning

October 18th, 2010

This morning I was feeling pretty proud of myself. I got breakfast made for everyone (not too hard: cereal, fruit & pills), cleaned the kitchen counters and microwave, one bathroom sink and changed one bed. After sitting down to eat and getting Mom and Wes started on their day, I was still able to get off to work on time. I was feeling downright smug until I was about halfway to work and realized I had forgotten my glasses. So I spent my workday squinting at computer screens…and reminding myself to laugh at myself.

What is the worst thing?

I have a friend who always says, "Everyone's worst thing is their worst thing."

We go through life worrying and stressing about many things. I think that most of us have experienced job stress and stress related to our children. Some have been through divorce, child custody battles, personal health problems or any number of other serious issues. When facing problems, we always tend to think that they are the worst thing.

Nevertheless, in my book, facing the end of life for someone you love trumps everything else.

We are trying to balance my mom's congestive heart failure against her kidney failure. This is basically a choice of deaths.

For a friend to complain to me that my "dealing with a dying parent" is not any worse than their job stress just boggles my mind. Everything else is either replaceable or solvable. Death and dying is not. This hurts my heart.

Communication

October 11, 2010

I have done my best to communicate well with all of Mom’s doctor’s and check to be sure that they communicate with each other. However, Mom does not always communicate everything with me.

The evening before we went to see her GP, she experienced chest pain while I was helping her bathe. I got her Nitroglycerin and it went away right away. At the doctor’s, I reminded her to tell him about this, which she did. And he asked if she had been having more of these incidents since her last visit and how often. She said, “Oh, about every two weeks.” At which point the doctor gave me “the look” and asked if I had taken her to the cardiologist recently. Mom had not told me what was going on and when I had asked her about the same question, she just said it had happened a couple of weeks before.

She’s very good about sharing some things, but not others. I think this is a way for her to exert some control over her own life and of trying to protect me from stress and worry. I know that she doesn’t want more aggressive treatment for either her heart or her kidneys. Knowing her medical conditions as well as I do, I can understand this. Each specialist thinks that his organ is the most important. More aggressive treatment for her congestive heart failure will probably damage her kidneys. And she does to want to go on dialysis. This is a decision she made years ago and still maintains. “When you are capable of making informed decisions, your choices should be respected.” (from Ethical and Legal Issues, AGS Foundation)