Time flies except when it doesn't. Time in the world of a caregiver is often irrelevant. Days flow into weeks and weeks flow into months. I lose track of when symptoms began or when they ended or who we saw and on what date. Every day is a Saturday. It is an old habit from work. Saturday was a day off and I was home. I am home most of the time now. My mind calls all days Saturday.This creates the curious feeling of being a visitor in the coastal town where we live. I go out for groceries or church or almost anywhere here and I am out of step with the general culture of the working folks and more in step with the visitors. They are on holiday. I may not be on holiday but my frame of reference is from a holiday mindset. Every day is a week-end day.
It is amazing how small the world can become as the caregiving process continues. I am not sure how this is changing me but I do know that I am changing. I do not have the points of reference I had with the community at large. I don't hear the ongoing stories of friends at AA or at church. I move in and out like an outlier showing up for supplies and a brief conversation with one or two people. It is amazing how comfortable I feel in this isolation.
In the past month my husband's health has been playing havoc with his body. It is his mind. The doctors cannot find an actual cause for the variety of symptoms that are coming and going. This is the slow progression that could be the fast progression. This disease affects the brain cells, shrinks areas of the brain that tell the body what to do or not to do. No one has an idea how long it will be before a vital function is cut off from brain central. Currently we are experiencing forays of symptoms much like guerilla warfare.
Symptoms rush in and then out again. His blood pressure is going up and down. The other part of this awful disease is that he is less and less able to identify his symptoms accurately. The immutable truth is that there are no cures. Hopefully we can treat symptoms to provide comfort. Hopefully he will be spared a long, lingering process. Hopefully I will be spared that also. But I am ready to stay the course and my husband is proving to be a brave man facing daily difficulties without complaint. I am learning from him.
Pay attention. We never know when we may be in the presence of people who unexpectedly become part of our learning. I am beginning to understand that precious life and wisdom dwells in every situation as in every soul. Like snowflakes no two of us are the same. There is always a teaching to be found. Pay attention.
Wednesday, May 31, 2017
Saturday, May 13, 2017
Sharing The Burden
I blog on caregiving.com as well as here and for different reasons. Tonight I did a blog on the caregiving site that I am posting here also. My husband has Frontal Temporal Dementia and I am his sole caregiver. The caregiving.com site is an amazing way to share with other caregiver's and to learn from them. If you are a caregiver or know someone who is a caregiver I recommend finding caregiving.com and using the information to your best advantage. Without further ado....
Sharing The Burden
I was just in a chat when someone came on who expressed that she was exhausted from trying to be stronger than she felt. As so often happens in chats or when talking with friends over coffee, a comment will go straight to the heart of the matter. That lovely woman's comment spoke my truth. I don't think I would have known how to put it. She did and I am grateful for her.
There are days when I look around and I wrestle with the feeling that I am a four year old trying to be a twenty year old. I am much older than twenty but you get my point. Wow! Just as I typed that last sentence I got a picture of the National Geographic pictures of women in other countries walking miles to the nearest watering hole and then back home with the water weighing them down on the return journey. I'll bet if we could talk together we would all instantly understand the demands we each have on our lives and we would each say we have no idea how we meet those demands because we often feel far too little to take the next step or make the next decision. I am getting goose bumps. I am having one small memory after the other come to the front of my mind as I think of the times I knew without a doubt I was being carried by a loving God and He was making the decisions through me because I simply could not make them. I was too little. I was too overwhelmed. I was too hurt and sad and frightened of the future. I wanted to be little and have someone step in and take over.
There are many well meaning suggestions for resting and taking care of ourselves and they are all important and do make a difference. I just think there are days when the depth of sadness and grief supersedes all our good intentions. I think what I call overwhelming is often the reality of this journey. It is what Denise has identified as the journey that has only one ending and we are walking that journey, staying busy with all the daily tasks, exhausting ourselves with all that caregiving demands of us. We are walking the journey with our eyes so focused on the moment and then we look up and we clear our heads of the demands on us and we see the ending. We gasp at the ache inside and the sorrow pouring into our hearts. We momentarily fall to our emotional knees. I think this is when we experience the exhaustion of being stronger than we feel.
If we are fortunate enough to have a friend to share with, a group to talk with and this amazing site to use every single day we struggle as we stand up from our emotional knees, we bond together, we meet each other in that tender and vulnerable place and we share the burden. Imagine, if you will, the bond that binds us to each other and the miraculous understanding that on the days when I am strong, I can share some of that with you when you are feeling weak and when I am weak you will share your strength with me. Imagine that bond binding together hundreds of souls who are loving and providing care for someone. Imagine the love and energy of that love pouring out from us into the world of caregiving. We keep what we have by giving it away. This is a deep truth that I have been taught by others. In our weakness we find our strength. We share our burdens. I am deeply humbled and blessed by all of you. Thank you.
Sharing The Burden
I was just in a chat when someone came on who expressed that she was exhausted from trying to be stronger than she felt. As so often happens in chats or when talking with friends over coffee, a comment will go straight to the heart of the matter. That lovely woman's comment spoke my truth. I don't think I would have known how to put it. She did and I am grateful for her.
There are days when I look around and I wrestle with the feeling that I am a four year old trying to be a twenty year old. I am much older than twenty but you get my point. Wow! Just as I typed that last sentence I got a picture of the National Geographic pictures of women in other countries walking miles to the nearest watering hole and then back home with the water weighing them down on the return journey. I'll bet if we could talk together we would all instantly understand the demands we each have on our lives and we would each say we have no idea how we meet those demands because we often feel far too little to take the next step or make the next decision. I am getting goose bumps. I am having one small memory after the other come to the front of my mind as I think of the times I knew without a doubt I was being carried by a loving God and He was making the decisions through me because I simply could not make them. I was too little. I was too overwhelmed. I was too hurt and sad and frightened of the future. I wanted to be little and have someone step in and take over.
There are many well meaning suggestions for resting and taking care of ourselves and they are all important and do make a difference. I just think there are days when the depth of sadness and grief supersedes all our good intentions. I think what I call overwhelming is often the reality of this journey. It is what Denise has identified as the journey that has only one ending and we are walking that journey, staying busy with all the daily tasks, exhausting ourselves with all that caregiving demands of us. We are walking the journey with our eyes so focused on the moment and then we look up and we clear our heads of the demands on us and we see the ending. We gasp at the ache inside and the sorrow pouring into our hearts. We momentarily fall to our emotional knees. I think this is when we experience the exhaustion of being stronger than we feel.
If we are fortunate enough to have a friend to share with, a group to talk with and this amazing site to use every single day we struggle as we stand up from our emotional knees, we bond together, we meet each other in that tender and vulnerable place and we share the burden. Imagine, if you will, the bond that binds us to each other and the miraculous understanding that on the days when I am strong, I can share some of that with you when you are feeling weak and when I am weak you will share your strength with me. Imagine that bond binding together hundreds of souls who are loving and providing care for someone. Imagine the love and energy of that love pouring out from us into the world of caregiving. We keep what we have by giving it away. This is a deep truth that I have been taught by others. In our weakness we find our strength. We share our burdens. I am deeply humbled and blessed by all of you. Thank you.
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