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)

Mom and the Shelf

October 10, 2010

The other day, Mom pulled the shelf in her bedroom over. She was not hurt, because it did not come down on top of her. She said she didn’t know what happened. “It just came down.” Well, she just wanted to see what was in the gift package that I set on the top shelf. I put the package up there a week ago and told her and showed her what was in it—a quilt for Audra’s baby. I wanted a place to put it where or nosy cats would not get into it.

My bad. I should not have put it up there. She saw it up there and didn’t remember it at all. So she wanted to see what it was. The shelf tipped over because she used it to pull herself up and reach to the top. There’s no other way she could have gotten the package down.

She said earlier in the week that she thought she had a little stroke. I think she probably did. She’s a little more confused than would be normal. I need to clean the shelf off and remove the things on the top. Now I know that I need to “baby proof” the house more–as much as possible given our situation.

There’s always another thing. The situation changes, but I don’t always know something has changed until after the fact. I feel like I should be able to anticipate things, but I never seem to be able to.

Our Diaper Party
October 4, 2010

On Saturday, we attended a baby diaper party for my niece, Katie, thrown by her sister, Audra.These two, both pregnant, have been a tremendous help to me, coming to help with cleaning.

I was struggling with trying to manage everything when a counselor advised me to ask for help. “After all, the worst thing that can happen is that they can say no.” So I called the girls and asked for just a little help with housecleaning. Audra said, “We were just waiting for you to ask.” They have been alternating weeks and it has been such a help. To me, it’s more than physical help–although that is a very big thing. It’s a tangible way of showing love. Every time I see them, I am reminded that I “only had to ask”, that someone else appreciates what I do, that they care and that I DO have blessings.

Being in the Moment
October 3, 2010

This week in our caregiving class, we watched a film, “Complaints of a Dutiful Daughter,” by Deborah Hoffmann. In this film, Ms. Hoffmann documents her struggle with accepting her mother’s Alzheimer’s disease. In the beginning, she tried to correct her mother’s faulty memory, tried to make things right and normal.

Eventually, she came to the conclusion that being right was not as important as being there and enjoying the moment. When her mother no longer recognized that this was her daughter, she could still accept that this was a friend. Once she accepted her mother as she was at that moment, she was able to enjoy the time spent with her.

Ms. Hoffman expresses what I think we all feel, that our memories and cognitive abilities make us who we are. It is so extremely difficult to see someone you love lose so much of themselves and their past. Yet, once we can accept that they still have value and can still enjoy life, if in different ways than before, we can perhaps achieve some level of peace. And perhaps we can find moments of happiness. It may be just the very simple and basic act of sharing the same space.

When our loved one is physically suffering, it becomes even more difficult. Sometimes, no matter how much we love them, it can be incredibly difficult to deal with. I pray for patience, for strength, for understanding and the knowledge to provide what my mother and brother need. I find it helps to reach out and share. Most of the time, I don’t need someone to solve my problems. I just need someone to listen.

Small Drama, Big Drama

September 27, 2010

I was perplexed at a friend’s reaction earlier this week. She lost an inexpensive camera that was old, but she had enough money to buy a new one right away. However, she said that she cried all day over this. Her reaction seemed extreme for the loss of a ‘thing’.

Then I had to go to the mechanic on Friday and in my rush to get out of work on time, I left my wallet at work. This had me anxious and nearly in tears. Everyone at the auto shop was very nice about it. I am, after all a returning customer.

And I knew right away where it must be. I know that I am always very tired by the end of the week. Lately, often become inordinately upset over seemingly little things. Over past several years, I have had to deal with so many big crises in dealing with my mother’s—and now my brother’s—health issues, and to be reasonably calm, cool and rational for their sakes, while doing so.

In thinking about it, I have come to the conclusion that, it’s the little things that push me over the edge. I think some part of me says I shouldn’t have to deal with the ‘normal’ annoyances of life when I am handling so much more. Maybe I am on emotional overload by the end of the week. Or maybe it’s just ‘safe’ to let go when dealing with something that is not life threatening.

This put a different perspective on my friend’s reaction. I am still learning, trying to learn, how to take a deep breath and put things in perspective.

Free Technology for Teachers: 7 Sources of Free Sounds for Multimedia Projects

Free Technology for Teachers: 7 Sources of Free Sounds for Multimedia Projects

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Gardening

On a happier note. . .

Mom and I went to the garden store and picked out some things. We got more tomato plants and a bromeliad for her. Our first tomato plants are already flowering and we have one lone tomato developing. I have planted a short row of various types of tomatoes, So I am hoping that we will have a good crop of tomatoes spread out over the season.

I planted some pansies and some lantana in the front. I got some grass seed spread & covered on our bare spot in front. At least, I got all of the live plants in the ground before the rain.

Flowergate

Well, now . . .

There will be NO demonstration garden and NO community garden. Since a few people care more about being in control than they care about working together or the long view of benefiting the community, we will not be doing anything which brings us together anytime in the near future.

This has, once again, been a learning experience. I have learned that there are those who. because they are truly small people, will do their best to cause problems for others. . . since it is the only way that they can feel important.

Everyone brings something to our lives. Sometimes it is to be an example of how NOT to be.

I salute our FSD rep for trying to create a community of togetherness and inclusiveness. . . for being a truly humble and giving person.

Mom and Me

I love this picture of Mom and me.

The last six months have been a bit tougher. Mom's health has been up and down, with her being close to death a couple of times in November. Following these episodes, both her hearing and eyesight became significantly worse.

She's been feeling much better since the turn of the year, but adjusting medication is a constant balancing act. Which is more important: kidneys or heart? I say without the heart, you don't have to worry about the kidneys. Mom says she would rather die from congestive heart failure than from kidney failure.

"Life is eternal; and love is immortal; and death is only a horizon; and a horizon is nothing save the limits of our sight." --Rossiter Worthington Raymond

I have learned to appreciate the good days.

Demonstration Gardening

We (some of our faculty and staff) are -- will be -- creating demonstration garden plots at the college, which we hope will lead to a true community garden. (I really want to put in a few vegetables at home. Can I do the digging? We'll see. Need to get started soon.)

Our team has two of the large bowl planters in the center of campus, the large rectangular above ground planter (left), and our real challenge is a gravelly strip of ground which is the shade virtually all of the time.

The 6 Myths of Caregiving

The 6 Myths of Caregiving

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Good Riddance!

New Year's Day 2010: Spent some time cleaning and getting rid of things. It's amazing how much junk I have accumulated and how many unfinished projects I have found. There is so much more that I need to get to. Now I have to organize and store the things I really must keep.