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)