Sunday, May 31, 2009

Fragile, Handle With Care

That phrase seems to best describe all three of us this weekend…


Beth is frightened. Beth has been very sick and the changes in her from last weekend are startling and frightening. She is thinner and gaunt. She is weaker. Her skin is translucent. There is a sense of fragility as though merely touching her with my clumsy hands will break her. Beth has always had a BIG presence and now she seems smaller. There is urgency in Beth’s actions – a need to push to finish things. There are presents to send, postcards and letters to write. She has a need to do what she can to make sure Linda is taken care of. The universe is unfair, Beth is frightened and she is fragile.


Linda is frightened. She can’t stop the degeneration Beth’s illness causes. She can’t pretend that there will be a happy ever after and that she and her love will grow old together. So Linda throws herself into things she can control. She rearranges the living room furniture. She focuses on feeding us. She makes lists of what to do and prioritizes them. She makes a master list of the lists. Hers are the actions of someone trying to keep the fear at bay. She is trying to be strong, to be the anchor and yet she is wounded as well. The universe is unfair, Linda is frightened and she is fragile.


I am frightened. The changes in Beth from week to week are no longer subtle. I stay up much too late during the week reading medical journals on line and looking for anything we can do to improve Beth’s quality of life and her quantity of life. I wish I could take an extended leave of absence to be here more. I count the weeks before my workload eases enough for me to be granted more leave. I hate the 18 miles of water that puts limits on how readily I can get to Victoria if/when needed. I hate the uncompassionate and apathetic healthcare Beth receives. I hate the lack of wealth that keeps us from seeking medical help in other places. I am trying to be strong, to be someone Beth and Linda can lean on. Yet my emotions are so near the surface. The more I try to control them and keep them in, the more they break through. I am frightened and it makes me snappy. I am frightened and it makes me sad. I am frightened and it makes me hurt. I am frightened and I cry.

The universe is unfair, I am frightened and I am fragile.

Saturday, May 16, 2009

Constants, Changes and Boundaries

I have been doing a lot of thinking about how Beth’s life is now. Of course this is all based on my perceptions and Beth most likely has a somewhat different view. Well, I can’t speak for Beth or Linda so my perceptions are what you get.

At this time there seems to be two definite constants for Beth – fear and change. I hope there is a third constant of love from Linda, me and the extended family Beth has built through her blog but I think the fear often overrides the feeling of being loved.

Fear is Beth’s constant companion. With her memory problems increasing and her regressions, much of what we take for granted is lost to her. She often doesn’t recognize this apartment. She doesn’t know who the careworkers are, doesn’t understand why she is sick and has to use a wheelchair, doesn’t understand why strangers keep telling her what to do. Imagine being a toddler lost in a gigantic crowded shopping mall and you might get an idea of what the fear is like. When Beth is not regressed the fear is still there. It is the fear of what happens next with her condition: fear of overheating, losing more function, losing cognitive abilities even more, never being treated, never being taken seriously by the medicos. There is fear of being abandoned by everyone or of being institutionalized.

Adding to the fear and often fueling it is change. Beth’s condition fluctuates, often quite dramatically. During good periods she can do 10K’s, visit the park, play badminton write or talk on many complex topics and conduct in depth research. During bad periods she becomes very weak and loses cognitive abilities. These are the times when she is too sick to muster the energy to leave the apartment, go to the doctor or finish simple tasks.

Beth can go from the good periods to the bad periods in the course of a few days, a few hours or even a few minutes. I have been conversing with her and over the course of 30 minutes she loses energy, cognitive ability and regresses. I started out talking to adult Beth and now I am talking with the 5 year old who doesn’t understand what I am saying. It is these periods of rapid regression which cause the most anxiety and fear. I (or Linda) am dealing with Beth as I would with any adult. By the time I realize that I need to switch to dealing with a 5 year old I have made Beth upset and frightened. I am trying to learn to pick up on the cues to Beth regressing to avoid causing the fear.

As part of learning to interact in ways that don’t increase Beth’s anxiety I have become very aware of boundaries. We all have a series of boundaries that are part of how we interact with others. There are people in my life who I am more comfortable with. I have different boundaries for them compared to casual acquaintances or co-workers. I trust people who respect my boundaries and am suspicious of people who ignore them.

For Beth boundaries are important. With the medical stuff she has lost many choices and people touch her often, regardless of if she is comfortable with it. When she goes to bed she is hovered over as we watch for seizures or to be sure she keeps breathing. She has no privacy in showering or being in the bathroom. A lot of the boundaries have fallen victim to her illness. This is why it is so very important to respect other boundaries Beth has.

There is just one area where Beth seems to be unable to set boundaries – when she perceives that someone needs help. Beth is the most giving person I have ever known who always places herself last. This means there are times when Beth will stay up all night emailing people who are having a tough time even though it costs her so much energy her body can’t manage to breathe without prompting.

If I am having a bad time, need support and I keep it from Beth that hurts her. She wants to be there for me (as well as other friends who need help). I just have to balance it so that Beth doesn’t make herself weaker/sicker in the course of being there for me. I have to remember that while Beth can help me I also need to help myself. Just as it is important to Beth that I know she cares, it is important to me that her caring for me not push her closer to hospital.

Hmmm… it would seem I have some tasks.
Help Beth feel that being loved is also a constant in her life.
Understand the cognitive and physical changes Beth goes through and react in ways that reassure her and make her feel safe.
Be aware of boundaries and honor them. Place boundaries to help Beth put her health first more.

Well this blog post seems to have gotten quite rambling. Thank you for letting me sort out my thoughts. If they have helped you as well then that is even better.