I am on an emotional mega-coaster.This isn't anything I can control and knowing that isn't real helpful right now. Too much is sometimes just that. Too much. My cat died the day after Thanksgiving and I became a grandmother for the first time less than a week later.
Thanksgiving was wonderful, then my father in Law had a stroke when he
got home. He is experiencing an amazing recovery which is fabulous, but
feels too weak to drive, (I applaud that choice) so cannot come up to meet the baby. My adult children are living their independent launched lives, as planned and prayed for, and I miss them with every fiber of my being. I miss my mother on so many levels. Mom is happier in "the home" but she
is not eating and becoming more and more "absent". I cannot get to see her often enough. The work projects I
spent so much energy on at the hospital are going without a hitch and
yet I am crying myself to sleep. I have been so unbearably sad for the last month, it is remarkable that I got up this morning. My life is incredibly full of amazing things. I have been working , constantly working actually, in an effort to hold back this dark familiar LONELY pit. I know intellectually that overwork, be it as a caregiver or as a chaplain or even as a the funny wife of my nerdy husband, has a price all its own. While being in the moment with patients in need, or students in turmoil, friends in crisis, removes me, if just for the moment, from my own heavy grief burden, it doesn't do anything to cure it. When I stop, I S T O P. Life pours in full force and I freeze.
OK Grimelda. I am finally listening.
I am going to the Caregivers support group now. I am going to hang onto every positive, every hopeful thing I can muster. I am going to find laughter hiding in the muck and I am going to go ahead and weep for Kitty, for my mother's self, for my pining dog and for the neglected life I leave in the wake of my business. And I am going to sing. I am going to sing of the miracles of a healthy granddaughter, a loving husband, amazing adult children, and the persistence of parents.
Amen Amen and Amen
Showing posts with label sleepless. Show all posts
Showing posts with label sleepless. Show all posts
Friday, December 16, 2011
Friday, October 14, 2011
Perspective
One week ago mom came home to sleep over. She missed her cat and me. She was so excited to get to cuddle with her cat, to spend a day with me, and to buy a bigger bed for her "new apartment". She came home having lost some mobility. She was using a cane when I left her for respite but rolled out of the twin bed that comes with the respite room and bruised her behind apparently the day after she got there. She uses a walker now most of the time but was beginning to use her cane again. When she walks with the walker she looks a decade older. She seems defeated. When she takes her cane in hand she swells with pride and is straight and power filled again.
I found her subdued, too compliant and quite sad. I was sad too. What made me crazy before; the 3 hour breakfast ritual, the feeding of my pets with constant people food goodies, the criticism of my cleaning and cooking skills, even the constant sighing and groaning, didn't bother me because I knew they were temporary. I also knew that without her my world had become very empty. I knew I really had missed her. It was a good 24 hours but we were both exhausted when it was over.
I cried myself to sleep that night and woke with a nagging headache.
My sister took mom the next day as I stumbled through a difficult busy Sunday. Clergy workday! I made my appointments but was late. I lost track of things and time. My concentration evaporated in business. My sister sent pictures of the stuff they were buying for the apartment
and questions about the bill for the facility by text and I could not
face it. I was hardly home by the time my sister called me to discuss her texts. My head was really beginning to hurt.
I was teary. Lonely. Tired. Defeated.
And my head hurt!
The next day, Indigenous Peoples Day/Columbus Day/Time and a Half for Work Day, I went to work, feeling odd and still holding the headache. I was going to go mom's after work and help her get her room settled. Did not happen. By 11A.M. I was back in the car on my way home with the worst headache of my life, too sick to work.
I got the flu. I was so sick I could not get to the bathroom without help. I could not move without pain. I could not eat or even keep track of when I took the Advil to lower my temperature. I needed a caregiver as I lost my ability to take care of me.
During my flu I used mom's tray, her cups with lids, her cuddly cat for warmth and her wisdom (when I could remember it) to write down what I could not remember and to ask for help. I got a one week glimpse into how helpless she felt living on the second floor when the stairs were unmanageable. I felt some of the loneliness she felt when no one could come see me and I was too tired to or achy to use a phone or computer. I felt a taste of her claustrophobia when I could not drive myself to the Dr. and had to ask my neighbor to drive me. I felt a bit of the betrayal she feels from my brother when I needed my husband and he kept leaving to go to work, letting my unemployed neighbor come by and make sure I had soup and drink.
I am finally feeling a bit like a human. I am only quarantined a couple of more days and I can finally handle food and the stairs again. (Tamiflu works!) Tonight, as I was coming back upstairs after being with my husband watching TV, I went to gather the tissues I had let fall when I was sicker and found my mother's cane! She had propped it in the window, behind the chair when she had decided to take her walker on our shopping trip. Together, in our tired and transitioning state, we had forgotten it and didn't notice.
My husband has been to check on mom three times since I last saw her. She never asked about her cane. I put her cane in a pile of things for him to take to her in the morning. I cannot go yet. I miss her. I don't want to lose her. I want her to keep trying to stand and walk tall. It is depressing and defeating to be forced into helplessness.
I miss my mother. I am grateful, in a very sick way, that I got this taste in a small way of what it was like to be her in our house. It is helping me embrace her being with other elders in "the home." I cannot wait to see her Tuesday, when I am no longer contagious.
Grimelda, thanks for the worst headache of my life, four days of intense weakness and pain, sleepless nights and an overworked husband. Thanks for gastric distress, high fever, a foggy brain and forced isolation. Thank you also for good friends, excellent medicine, health insurance and Tamiflu. I needed that.
Amen Amen and Amen.
I found her subdued, too compliant and quite sad. I was sad too. What made me crazy before; the 3 hour breakfast ritual, the feeding of my pets with constant people food goodies, the criticism of my cleaning and cooking skills, even the constant sighing and groaning, didn't bother me because I knew they were temporary. I also knew that without her my world had become very empty. I knew I really had missed her. It was a good 24 hours but we were both exhausted when it was over.
I cried myself to sleep that night and woke with a nagging headache.
My sister took mom the next day as I stumbled through a difficult busy Sunday. Clergy workday! I made my appointments but was late. I lost track of things and time. My concentration evaporated in business. My sister sent pictures of the stuff they were buying for the apartment
and questions about the bill for the facility by text and I could not
face it. I was hardly home by the time my sister called me to discuss her texts. My head was really beginning to hurt.I was teary. Lonely. Tired. Defeated.
And my head hurt!
The next day, Indigenous Peoples Day/Columbus Day/Time and a Half for Work Day, I went to work, feeling odd and still holding the headache. I was going to go mom's after work and help her get her room settled. Did not happen. By 11A.M. I was back in the car on my way home with the worst headache of my life, too sick to work.
I got the flu. I was so sick I could not get to the bathroom without help. I could not move without pain. I could not eat or even keep track of when I took the Advil to lower my temperature. I needed a caregiver as I lost my ability to take care of me.
I am finally feeling a bit like a human. I am only quarantined a couple of more days and I can finally handle food and the stairs again. (Tamiflu works!) Tonight, as I was coming back upstairs after being with my husband watching TV, I went to gather the tissues I had let fall when I was sicker and found my mother's cane! She had propped it in the window, behind the chair when she had decided to take her walker on our shopping trip. Together, in our tired and transitioning state, we had forgotten it and didn't notice.
My husband has been to check on mom three times since I last saw her. She never asked about her cane. I put her cane in a pile of things for him to take to her in the morning. I cannot go yet. I miss her. I don't want to lose her. I want her to keep trying to stand and walk tall. It is depressing and defeating to be forced into helplessness.
I miss my mother. I am grateful, in a very sick way, that I got this taste in a small way of what it was like to be her in our house. It is helping me embrace her being with other elders in "the home." I cannot wait to see her Tuesday, when I am no longer contagious.
Grimelda, thanks for the worst headache of my life, four days of intense weakness and pain, sleepless nights and an overworked husband. Thanks for gastric distress, high fever, a foggy brain and forced isolation. Thank you also for good friends, excellent medicine, health insurance and Tamiflu. I needed that.
Amen Amen and Amen.
Tuesday, March 22, 2011
The melting (down and otherwise)
It has been an intense time in our home for the last month. As the weather here has finally eased, the walls of snow slowly dissolve, revealing huge potholes in what was the road to our house last fall. This is the wrath of winter in all its destructive power.
As Mom has weathered the winter, I have grown more physically and spiritually drained. My own sanity besieged. With this sluggishness of spirit and cognitive function, I realize that I can no longer leave Mom unattended. I have seen her thought processes decay this last season. Little things, like going to the store for fresh vegetables or even out coffee and doughnuts, things that we did so joyously together at this time last year, now have a muddy, murky quality. Although I have watched it happen, it still comes as a surprise that her world has now become so small and measured.
Sometime this winter, almost unnoticed, Mom quit trying to use her computer. She had been saying my husband had "unhooked it and not put it back". He did borrow her monitor a few times to use with his laptop, but I had reconnected it several times. She just...stopped. No fanfare. She stopped, and now...? Just...gone. Mom quit initiating phone calls over a year ago. She was not able to sequence numbers and was getting too frustrated. She quit answering the phone, even with caller ID, months ago. I now hand her the phone when folks call. She hands them back muttering "I cannot hear on these things! You do it!"
I suppose in the grand scheme of things, this is just one more complication of a deteriorating mind. The consequences of this change are enormous. It has cut her off from her family. Her whole social life has suddenly been reduced to my household. Now, most days, my husband and I, along with the two ladies that I employ to help out, are her only human contact.
Mom's children and grandchildren have settled all over the world. A lifetime of welcoming the lonely stranger into the family has created a vast web of relationships, only some by blood. All of these people are her family of the heart. Now that Mom no longer uses e-mail, or the phone, they have no way to stay connected with her, except to physically visit. Not all of them understand Mom's condition. Some that do, especially the younger ones, do not have the means to come see her in person. If they do not reach out to her soon, I fear it will be too late. This disease is rotting her memories.
My own children live close by, and visit frequently enough, so she knows them. What is becoming painfully clear is that Mom is losing her ability to recognize even those she loves when they change appearance. Although she knows they should age, that a child she last saw as a toddler is now a pre-teen, the image in her heart overrides all attempts at logic. She knows us by what we looked like were when we lived with her.
This inability to utilize electronic communication, and the telephone, became starkly clear in the last two weeks. We have one part of the family living in Tokyo. When the earthquakes and tsunami hit, and the nuclear accidents filled the news, our entire scattered family's thoughts were with them. Ironically, our only communication with them has been through Facebook posts made from my "sister's" smartphone. For those of us glued to our computers, we have followed her detailed posts of her experience with a mix of hope and terror. They have been having a harrowing, life altering time. Thank God they are doing okay.
Since there was nothing she could do, and she was already so sad, I tried to protect her from the anxiety of the situation. I did not immediately share with mom what I was doing always online. I forgot that Mom still reads the paper and that she understands most of it. Once I realized that fibletts were going to be useless, that her depression was growing, I relented. I diligently read aloud each of those posts to Mom. She knows all is okay with her "girl"and her baby (he is now 10 years old I think) and no longer asks.
Once again, it is surreal to share such intense and life changing events with a mother who cannot hold it in her memory. Mom pines for her family and they are always otherwise occupied. It is all so sad sometimes.
Most of her only son's family lives over 1500 miles away. They had two big events this month. One of mom's grandsons got married, adding both a granddaughter in-law and, with her daughter, a new step-great-granddaughter. Meanwhile a new great-granddaughter was also born this month to a different grandson and his fiancee. While Mom is delighted with the new additions to the family, she is also agitated. She cannot remember their unusual names, or recall who belongs with whom. Mom has no concrete context. She has no way to hang onto their names or faces. We have no pictures (they are all on Facebook or attached to e-mails she doesn't open). While I repeatedly show pictures of my brother's growing family to her on my laptop, she says things like "That doesn't look like him" while looking at current pictures of her only son, or "She is cute, which one is that?" She knows she has more family than she sees but they might as well be invisible. Now they are reduced to confusing people she yearns to know, but holds no hope of meeting.
It robs the happiness out of what used to be so joyous. It makes me whine.
It isn't just Mom that is hurting. My family's self protection habit of keeping physical distance from Mom also isolates me. That has been difficult to navigate. When I expected to be happy, instead I am flooded with negative emotions. I am angry that I could not go see the family when they gathered to celebrate the wedding. Mom's family is also mine. It is normal that miss them too. I want to embrace them too. I want to smell the sweet scent of the newest baby. I resent being left out. It is making it more difficult to find that Love that sustains me. I am so jealous of my local sister's freedom to travel, it is currently difficult to contain. I fear I am growing bitter.
Then I remember ...Mom.
How petty of me because I can at least have hope of meeting them eventually. I can friend them on Facebook. I can have some form of relationship with them other than just words that fall through the holes in my memory.
The intensity of all this has taken a toll on me. These are my family too. I process all these feelings at support group, with my colleagues at the hospital, with my therapist, even here in the blog. But mom only has us. And I fear , right now, it is too much for me. I am hoping to help both of us by getting her in an adult day program. I pray she gets some new friends. Someone with whom she can find joy again. Someone with whom she can grieve. Someone to share a meal who isn't obsessed with her nutrition. Someone to talk to that isn't always overtired and distracted. Someone else. Not forever, but for a little while. Someone not me.
On this second day of Spring, we have just had still another new snowfall. The sun is rising and so is the household. I was just beginning to see the hope of lawn under the glacier pack outside. The new snow hides the potholes temporarily. It will not last. It cannot. But it is inspiring anyway. I will now allow Hope to soothe my tired bones.
Holy spirit, I pray for containment of all these "melt downs". For the safety of all loved ones, even those I have yet to meet. For the reconnection of human souls through friendly communion, for the strength to persevere as things continue to fall apart, melt, transform and redefine, and with hope for all, a good nights sleep tomorrow.
Amen
Amen
amd
Amen
As Mom has weathered the winter, I have grown more physically and spiritually drained. My own sanity besieged. With this sluggishness of spirit and cognitive function, I realize that I can no longer leave Mom unattended. I have seen her thought processes decay this last season. Little things, like going to the store for fresh vegetables or even out coffee and doughnuts, things that we did so joyously together at this time last year, now have a muddy, murky quality. Although I have watched it happen, it still comes as a surprise that her world has now become so small and measured.
Sometime this winter, almost unnoticed, Mom quit trying to use her computer. She had been saying my husband had "unhooked it and not put it back". He did borrow her monitor a few times to use with his laptop, but I had reconnected it several times. She just...stopped. No fanfare. She stopped, and now...? Just...gone. Mom quit initiating phone calls over a year ago. She was not able to sequence numbers and was getting too frustrated. She quit answering the phone, even with caller ID, months ago. I now hand her the phone when folks call. She hands them back muttering "I cannot hear on these things! You do it!"
I suppose in the grand scheme of things, this is just one more complication of a deteriorating mind. The consequences of this change are enormous. It has cut her off from her family. Her whole social life has suddenly been reduced to my household. Now, most days, my husband and I, along with the two ladies that I employ to help out, are her only human contact.
My own children live close by, and visit frequently enough, so she knows them. What is becoming painfully clear is that Mom is losing her ability to recognize even those she loves when they change appearance. Although she knows they should age, that a child she last saw as a toddler is now a pre-teen, the image in her heart overrides all attempts at logic. She knows us by what we looked like were when we lived with her.
This inability to utilize electronic communication, and the telephone, became starkly clear in the last two weeks. We have one part of the family living in Tokyo. When the earthquakes and tsunami hit, and the nuclear accidents filled the news, our entire scattered family's thoughts were with them. Ironically, our only communication with them has been through Facebook posts made from my "sister's" smartphone. For those of us glued to our computers, we have followed her detailed posts of her experience with a mix of hope and terror. They have been having a harrowing, life altering time. Thank God they are doing okay.
Once again, it is surreal to share such intense and life changing events with a mother who cannot hold it in her memory. Mom pines for her family and they are always otherwise occupied. It is all so sad sometimes.
Most of her only son's family lives over 1500 miles away. They had two big events this month. One of mom's grandsons got married, adding both a granddaughter in-law and, with her daughter, a new step-great-granddaughter. Meanwhile a new great-granddaughter was also born this month to a different grandson and his fiancee. While Mom is delighted with the new additions to the family, she is also agitated. She cannot remember their unusual names, or recall who belongs with whom. Mom has no concrete context. She has no way to hang onto their names or faces. We have no pictures (they are all on Facebook or attached to e-mails she doesn't open). While I repeatedly show pictures of my brother's growing family to her on my laptop, she says things like "That doesn't look like him" while looking at current pictures of her only son, or "She is cute, which one is that?" She knows she has more family than she sees but they might as well be invisible. Now they are reduced to confusing people she yearns to know, but holds no hope of meeting.
It robs the happiness out of what used to be so joyous. It makes me whine.
It isn't just Mom that is hurting. My family's self protection habit of keeping physical distance from Mom also isolates me. That has been difficult to navigate. When I expected to be happy, instead I am flooded with negative emotions. I am angry that I could not go see the family when they gathered to celebrate the wedding. Mom's family is also mine. It is normal that miss them too. I want to embrace them too. I want to smell the sweet scent of the newest baby. I resent being left out. It is making it more difficult to find that Love that sustains me. I am so jealous of my local sister's freedom to travel, it is currently difficult to contain. I fear I am growing bitter.Then I remember ...Mom.
How petty of me because I can at least have hope of meeting them eventually. I can friend them on Facebook. I can have some form of relationship with them other than just words that fall through the holes in my memory.
The intensity of all this has taken a toll on me. These are my family too. I process all these feelings at support group, with my colleagues at the hospital, with my therapist, even here in the blog. But mom only has us. And I fear , right now, it is too much for me. I am hoping to help both of us by getting her in an adult day program. I pray she gets some new friends. Someone with whom she can find joy again. Someone with whom she can grieve. Someone to share a meal who isn't obsessed with her nutrition. Someone to talk to that isn't always overtired and distracted. Someone else. Not forever, but for a little while. Someone not me.
On this second day of Spring, we have just had still another new snowfall. The sun is rising and so is the household. I was just beginning to see the hope of lawn under the glacier pack outside. The new snow hides the potholes temporarily. It will not last. It cannot. But it is inspiring anyway. I will now allow Hope to soothe my tired bones.
Holy spirit, I pray for containment of all these "melt downs". For the safety of all loved ones, even those I have yet to meet. For the reconnection of human souls through friendly communion, for the strength to persevere as things continue to fall apart, melt, transform and redefine, and with hope for all, a good nights sleep tomorrow.
Amen
Amen
amd
Amen
Wednesday, September 22, 2010
and why not? Take mom to work day
With caregivers unavailable I found myself with mom and work appointments at the same time. It was Alzhiemers awareness day and I was stuck. I had a bimonthly staff meeting at the hospital and a peace day vigil to accomplish, neither of which I could really miss or get a sub for. So, I dressed in purple and brought mom with me. Surprisingly, we had a pretty good, if occasionally awkward day.
Today was not just International Peace day, not just the Spring Equinox, not just Alzhiemer's awareness day, I added one more! Welcome "take mom to work" day. A bit of a switch since I was younger and it was "take your daughter to work" day, but everything is topsy-turvy now. Thanks, Grimelda, for purple sprinkled donuts, understanding supportive colleagues and interesting times.
May peace prevail on earth. http://www.worldpeace.org/
Amen
Today was not just International Peace day, not just the Spring Equinox, not just Alzhiemer's awareness day, I added one more! Welcome "take mom to work" day. A bit of a switch since I was younger and it was "take your daughter to work" day, but everything is topsy-turvy now. Thanks, Grimelda, for purple sprinkled donuts, understanding supportive colleagues and interesting times.
May peace prevail on earth. http://www.worldpeace.org/
Amen
Sunday, September 19, 2010
After respite, panic
After a month of planning and an incredible amount of finagling, I managed to get 48 hours of respite. This time it mostly worked. It fell apart in the last three hours and now I am up in full blown back spasm and pain. Panic has returned to me. Pardon me but...WTF?
Too much stress so I chose carefully my respite activity this time. I went away to B&B and for a spa day. That was wonderful. I had massage, body wrap, a manicure, pedicure a facial and my hair done. It was so nice to be taken care of and pampered. I took a dear friend with me who was also a good caregiver. She did all the driving and helped with the planning. The B&B was a little tired, but the innkeepers were pleasant and the gardens beautiful. I spent way too much money and never really had a good meal,(just bad luck mostly) but the company was good and for the most part the trip was very relaxing.
It is hard to get away. I got a phone call at least once a day to help with some detail, but the stress level was much less. My one big regret is that I didn't get to see my daughter. We almost made it but had to let it go at the very last minute. That is the source of most of this pain I think. My disappointment at not getting to see her. Daughters and mothers, what a job we do on our emotions with this amazing love relationship! She moved out permanently just a while ago (7 weeks maybe) and yet I miss her warm yet snarky presence constantly.
Seeing my daughter in our plan came at the very end, like dessert. It was to be a short visit, no more than a hug, a tour of her classroom(she is a teacher now) and a chance to feel her in my arms. I had to cancel it and come straight home when my caregivers son was hospitalized and she had to leave. My family members were not around for many good reasons involving life and there was no family back up here. My best support, she who calls me PW, my friend from the caregivers support group and life, came at the drop of a hat and stayed with mom till I could return. I am grateful. But I am in such physical pain tonight from grief, I cannot rest.
I feel as if I used up everything I had to get away only to come back into a well of anxiety and pain. pain pain pain. God, take this sadness, this heartbreak away. Fill me once again with your love.
I fell asleep finally at 4:30. I got up at 7am and we are back to the routine again. I am planning a way to see my daughter now. I hate exhaustion.
Amen
Too much stress so I chose carefully my respite activity this time. I went away to B&B and for a spa day. That was wonderful. I had massage, body wrap, a manicure, pedicure a facial and my hair done. It was so nice to be taken care of and pampered. I took a dear friend with me who was also a good caregiver. She did all the driving and helped with the planning. The B&B was a little tired, but the innkeepers were pleasant and the gardens beautiful. I spent way too much money and never really had a good meal,(just bad luck mostly) but the company was good and for the most part the trip was very relaxing.
It is hard to get away. I got a phone call at least once a day to help with some detail, but the stress level was much less. My one big regret is that I didn't get to see my daughter. We almost made it but had to let it go at the very last minute. That is the source of most of this pain I think. My disappointment at not getting to see her. Daughters and mothers, what a job we do on our emotions with this amazing love relationship! She moved out permanently just a while ago (7 weeks maybe) and yet I miss her warm yet snarky presence constantly.
Seeing my daughter in our plan came at the very end, like dessert. It was to be a short visit, no more than a hug, a tour of her classroom(she is a teacher now) and a chance to feel her in my arms. I had to cancel it and come straight home when my caregivers son was hospitalized and she had to leave. My family members were not around for many good reasons involving life and there was no family back up here. My best support, she who calls me PW, my friend from the caregivers support group and life, came at the drop of a hat and stayed with mom till I could return. I am grateful. But I am in such physical pain tonight from grief, I cannot rest.
I feel as if I used up everything I had to get away only to come back into a well of anxiety and pain. pain pain pain. God, take this sadness, this heartbreak away. Fill me once again with your love.
I fell asleep finally at 4:30. I got up at 7am and we are back to the routine again. I am planning a way to see my daughter now. I hate exhaustion.
Amen
Tuesday, September 7, 2010
I speak the silence of midnight
I am once again drawn to writing to calm and restore myself after a trying few days. The heat of summer has finally broken and the chill of midnight, wrapped in the occasional sprinkle of soft rain has soothed my anxiety. Odd that it has also energized my insomnia. I feel a call to write when I am finally silent. It is as if there are words and images forcing themselves to the surface and if I do not release them somehow I experience pain. It is often I am seemingly forced out of bed and elusive sleep to put carefully plait my words, weaving them into life in a journal or on this blog.
I love to write. I love to craft vivid images with words and play with metaphors. I bliss out with good storytelling. I also love to read. I am surprised I have been reading so much non-fiction lately as I usually prefer novels, mythologies and poetry. I enjoy falling into a story, tumbling into the lives of the characters, seeking their meaning out of the adventure and holding their joy, pain or tragedy as my own. I can escape, or just hide in a book, feeling safe. Glorious!I find it odd, that at this stressful time, when things are often grief filled and difficult, that I have not picked up much fiction.
Maybe I have enough adventure in my daily existence just now. It occurs to me that possibly I have been driven to understand this altered life. I have somehow internalized that if I just know enough facts about something I will understand it. Perhaps that is one reason I have not been writing my own fiction much lately. (Fibletts to my my friends mom excluded) This reality is surreal enough. Who needs to make something up when daily life is so fantastical?
So now I think I will try to see what meaning will come with this non-fictional adventure story. It is a romance, a mystery, a thriller and horror filled tragedy. Sometimes it is funny and sometimes farce. All genres are embedded within this tome. I have started reading a college friend's memoir. Perhaps indulging in this next art will help me learn yet another method of meaning making.
My friend from the Alzhiemers Caregivers Support group and I were driving home from a visit with her mother who is afflicted and struggling. My friend and I had been talking for most of the drive home. I made some silly trite comment like "One more successful visit, One less day to do this" when she said "How does this end?" All became silent. I know how it ends and so does she. Forgetting, death and grieving. What we don't know, perhaps the real question is "What happens next, and how do I prepare for it? How can I survive and find peace with this?"
Alzhiemers is a book to read with your finger on the last chapter. It makes it easier to hold onto what is still there in spite of the losses when you know it will be gone. Hold on, the story is yet to unfold and the meanings and understandings come later.
And now, my heart is calmer, my mind at ease, sleep finally returns my affection. May the calm silence of the wee hours enfold us all in gentle slumber. Thank you, Grimelda, for this lovely night.
Amen
I love to write. I love to craft vivid images with words and play with metaphors. I bliss out with good storytelling. I also love to read. I am surprised I have been reading so much non-fiction lately as I usually prefer novels, mythologies and poetry. I enjoy falling into a story, tumbling into the lives of the characters, seeking their meaning out of the adventure and holding their joy, pain or tragedy as my own. I can escape, or just hide in a book, feeling safe. Glorious!I find it odd, that at this stressful time, when things are often grief filled and difficult, that I have not picked up much fiction.
Maybe I have enough adventure in my daily existence just now. It occurs to me that possibly I have been driven to understand this altered life. I have somehow internalized that if I just know enough facts about something I will understand it. Perhaps that is one reason I have not been writing my own fiction much lately. (Fibletts to my my friends mom excluded) This reality is surreal enough. Who needs to make something up when daily life is so fantastical?
So now I think I will try to see what meaning will come with this non-fictional adventure story. It is a romance, a mystery, a thriller and horror filled tragedy. Sometimes it is funny and sometimes farce. All genres are embedded within this tome. I have started reading a college friend's memoir. Perhaps indulging in this next art will help me learn yet another method of meaning making.
My friend from the Alzhiemers Caregivers Support group and I were driving home from a visit with her mother who is afflicted and struggling. My friend and I had been talking for most of the drive home. I made some silly trite comment like "One more successful visit, One less day to do this" when she said "How does this end?" All became silent. I know how it ends and so does she. Forgetting, death and grieving. What we don't know, perhaps the real question is "What happens next, and how do I prepare for it? How can I survive and find peace with this?"
Alzhiemers is a book to read with your finger on the last chapter. It makes it easier to hold onto what is still there in spite of the losses when you know it will be gone. Hold on, the story is yet to unfold and the meanings and understandings come later.
And now, my heart is calmer, my mind at ease, sleep finally returns my affection. May the calm silence of the wee hours enfold us all in gentle slumber. Thank you, Grimelda, for this lovely night.
Amen
Monday, September 6, 2010
Sugar is sweet and so are you...
I have been engaged in a continual "debate" with my mother about food. Her dementia is increasing, but her memory is not deteriorating as quickly as I had feared. On top of her dementia, she has really brittle diabetes. When she moved in with me, she gave me the task of planning her meals and monitoring her blood sugars. The numbers in her head "don't work" anymore and she was having a really difficult time doing it herself. I had no idea how difficult that would be. This has been challenging indeed. Mom isn't exactly cooperative. She is a very picky eater with a bizzare palate and has a voracious sweet tooth. There are simply only so many liverwurst on raisin bread with tomato and Miracle Whip sandwiches a person should eat a week in my opinion! My refusal to give her daily donuts and ice cream sundaes has met with much resistance.
When mom's sugars are off she is coo-coo. After she has been on a roller coaster with her sugar, highs and lows that are typical for her, she comes out "less". My heavy hand on her diet in spite of her protests has stabilized her numbers. I am her food bully now.
When I saw this article in the Cherokee Phoenix about unstable diabetes and dementia being linked I felt affirmed. It has given me the perseverance to continue to "bully" her into good eating. Meals have become a very unpleasant activity. I know I am not alone in finding the role reversal of caregiving a failing parent challenging. But honestly, tuna fish with nuts, apples, craisins and sweet pickles, mixed with miracle whip and spread on crackers? EWW and ICK.
If nothing better comes of this than that I control my own sugar, it will be worth it. But I admit, I hope by controlling hers I can slow down the progress of this disease that is eventually taking her.
Grimelda;
Help me find better places to hide the emergency candies and the sugar packets. Keep me from purchasing donuts by the dozen even if it is cheaper. Grant us all the ability to be satisfied with "mildly sweet" and the fortitude to stick to it under duress and massive guilt tripping. Let me once again take a lesson from the earth. Raisins and prunes are both sweeter than the grapes and plums they come from, but just look at them! May we all settle for sweet enough.
Amen
Persistant irregular blood sugars increase dementia chances - Cherokee Phoenix
When mom's sugars are off she is coo-coo. After she has been on a roller coaster with her sugar, highs and lows that are typical for her, she comes out "less". My heavy hand on her diet in spite of her protests has stabilized her numbers. I am her food bully now.
When I saw this article in the Cherokee Phoenix about unstable diabetes and dementia being linked I felt affirmed. It has given me the perseverance to continue to "bully" her into good eating. Meals have become a very unpleasant activity. I know I am not alone in finding the role reversal of caregiving a failing parent challenging. But honestly, tuna fish with nuts, apples, craisins and sweet pickles, mixed with miracle whip and spread on crackers? EWW and ICK.
If nothing better comes of this than that I control my own sugar, it will be worth it. But I admit, I hope by controlling hers I can slow down the progress of this disease that is eventually taking her.
Grimelda;
Help me find better places to hide the emergency candies and the sugar packets. Keep me from purchasing donuts by the dozen even if it is cheaper. Grant us all the ability to be satisfied with "mildly sweet" and the fortitude to stick to it under duress and massive guilt tripping. Let me once again take a lesson from the earth. Raisins and prunes are both sweeter than the grapes and plums they come from, but just look at them! May we all settle for sweet enough.
Amen
Persistant irregular blood sugars increase dementia chances - Cherokee Phoenix
Thursday, September 2, 2010
a different route
A realization emerged from my foggy head tonight. In my grand effort to find ministerial balance I lost my way. Over this year I have been stubborn. I have been trying to run this life according to my own personal notion of what should be right. My biggest problem, I was wrong. Is it any surprise that I kept coming up against the roadblock of my own expectations and human limits?
I gave up after becoming exhausted and supremely frustrated.
I wanted so much to make it ALL work according to some controlled plan that I was blinded to what could be.
So now,after much definitive action and financial finagling, here I am, all rescheduled, hospital hours diminished, students returned to campus, congregational leaders at home carefully included in the circle of knowing, and the caregiving helpers engaged. It looks as if all has smoothed out and the chaos is contained.
But there was still such grief. Such sadness, gloom and doom hovering in the air. My life had become mourning and I yearned for some colorful happiness in the mix. I had quit enough. Lost enough. Torn down enough. Surrendered it all to the chaos of creation. Behold the holy spirit moving in the world. Grimelda to the rescue. I made a leap of faith, answered an ad for a student seeking a homestay, and now with rejoicing, life! Youth, all growing, building, learning, truly vibrant,has moved into my spare room in the form of a young man attending high school classes far from home. His excitement and sense of adventure wakens us from our self centered nightmares and brings out our loving parenting best. This caregiving I know and understand. This I remember how to do with fondness and competence. And it is not just I. All the attitudes of my resident family has also taken a turn towards happiness. The fog remains, (curses on Dementia), but the energy has improved. All of us loved being parents and our homestay was looking for just what we needed to give.
So, I work less at the hospital, but am still there sometimes. I have new students and work at the campus with much excitement always there in the first weeks bolstering my energy. Our student likes us. His family likes us. ANd it is a mutually beneficial pairing. Mom loves having another young one around to tell her stories and worry about.
Life is not just balanced, it feels good.
I know that all is fluid. All is changing, but just now, this minute, awaiting the onslaught of a hurricane...I have balance.
I am going to sleep well tonight and dance again tomorrow.
Thank you Grimelda.
I gave up after becoming exhausted and supremely frustrated.
I wanted so much to make it ALL work according to some controlled plan that I was blinded to what could be.
So now,after much definitive action and financial finagling, here I am, all rescheduled, hospital hours diminished, students returned to campus, congregational leaders at home carefully included in the circle of knowing, and the caregiving helpers engaged. It looks as if all has smoothed out and the chaos is contained.
But there was still such grief. Such sadness, gloom and doom hovering in the air. My life had become mourning and I yearned for some colorful happiness in the mix. I had quit enough. Lost enough. Torn down enough. Surrendered it all to the chaos of creation. Behold the holy spirit moving in the world. Grimelda to the rescue. I made a leap of faith, answered an ad for a student seeking a homestay, and now with rejoicing, life! Youth, all growing, building, learning, truly vibrant,has moved into my spare room in the form of a young man attending high school classes far from home. His excitement and sense of adventure wakens us from our self centered nightmares and brings out our loving parenting best. This caregiving I know and understand. This I remember how to do with fondness and competence. And it is not just I. All the attitudes of my resident family has also taken a turn towards happiness. The fog remains, (curses on Dementia), but the energy has improved. All of us loved being parents and our homestay was looking for just what we needed to give.
So, I work less at the hospital, but am still there sometimes. I have new students and work at the campus with much excitement always there in the first weeks bolstering my energy. Our student likes us. His family likes us. ANd it is a mutually beneficial pairing. Mom loves having another young one around to tell her stories and worry about.
Life is not just balanced, it feels good.
I know that all is fluid. All is changing, but just now, this minute, awaiting the onslaught of a hurricane...I have balance.
I am going to sleep well tonight and dance again tomorrow.
Thank you Grimelda.
Tuesday, August 17, 2010
Letting love loose
My transition from Hospital chaplain to occasional fill in chaplain has reached its calendar date. The students return next week. I have but three days to regroup before they arrive, hungry and excited. Hallelujah! New Life!
What a long summer this was. Tonight I listen for the rain's return. The heat was dire. All my unshed tears now dried to salt. The arrid dust fills my nose and eyes, my long lost garden turned to seeds and chaff.
Gentle rain, my songs have been too silent for too long. Let the sun drenched soil, and my own parched spirit, be renewed, refreshed and sanctified in your holy blessing. After this drought that has somehow mirrored my own grief, let this baptism by sprinkling renew my soul in hope.
Amen
Monday, July 26, 2010
accepting help
Under great stress I go to the hairdresser. Don't you? So back from my latest wedding gig, I go for a "do".
No words. Very tired. (Messy) Said "help". Got some. (Lather) Feeling better. Still silent. (Rinse) Getting perspective. Said "HELP". (Repeat) Some things just need time and attention. Some need action. And some just are.
Resting and being is helpful.
Just tired. Thanks. for the help. For the break. For the moments of clarity. For the time.
I am never this silent at the hairdresser. I dare not say it aloud. The terrifying truth. Only in heart does that spectre burn. Horrifying is my reality. In the middle of the ceremony I forgot the groom's name!
Someday my words will return, unlike mom's. Is it stress? Is it menopause? Is it ... "IT"?
HELP ME GRIMELDA!!!!
Please...let me find my words again. Let this be anything else. Once again that niggling fear. Always there. Like the dull hum of cicadas in summer heat. The distant rumblings of thunder echo on the mountains. The storm may never come here. I still smell the wind, and get prepared.
Rest.
AMEN.
No words. Very tired. (Messy) Said "help". Got some. (Lather) Feeling better. Still silent. (Rinse) Getting perspective. Said "HELP". (Repeat) Some things just need time and attention. Some need action. And some just are.
Resting and being is helpful.
Just tired. Thanks. for the help. For the break. For the moments of clarity. For the time.
I am never this silent at the hairdresser. I dare not say it aloud. The terrifying truth. Only in heart does that spectre burn. Horrifying is my reality. In the middle of the ceremony I forgot the groom's name!
Someday my words will return, unlike mom's. Is it stress? Is it menopause? Is it ... "IT"?
HELP ME GRIMELDA!!!!
Please...let me find my words again. Let this be anything else. Once again that niggling fear. Always there. Like the dull hum of cicadas in summer heat. The distant rumblings of thunder echo on the mountains. The storm may never come here. I still smell the wind, and get prepared.
Rest.
AMEN.
Friday, July 2, 2010
and another option....
Today I played. Really played. A good friend from life is also dealing with elder care stress and today we played. Both of us got in my car...drove to the big city and spent the day doing the tourist things we did a lifetime ago with our young children. This time, instead of their wiping noses, making a mad dash to the bathroom so they could get to the potty on time or avoiding the noisy exhibits so as to minimize whining, we went as ourselves. I still wiped noses, my own. We still sprinted to the bathroom but this time I only had to keep track of myself! And we went to the lightning show and actually watched it. I laughed! I feel better too. This was a really fun time. I have been trying to balance without all the parts in play. Work and play!
Thank you Grimelda. That was a great day!
Amen and halleluyah.
Thank you Grimelda. That was a great day!
Amen and halleluyah.
Thursday, July 1, 2010
redefining normal
Today was really difficult. I left my mom in the hands of her extremely competent caregiver, a lovely woman from Ghana that I found through an agency, and escaped. I am not sure when exactly it became so difficult to be around mom during the day. It could be when she began fighting me about everything. Suddenly it seems she disapproves of so much I do, or try to do. She complains about the time I spent at the hospital.Now it is also about how I make toast,or planted flowers, even what friends I chose to see, when and how often. I struggle to understand why this conflict.My guess is it is akin to frustration. It could be her ever increasing competency losses, and all that represents. It could also be the lingering wisdom, buried under all her aggression and confusion, that I desperately need and we cannot access. It could be the new behaviors she cannot change yet that I find embarrassing, extremely inconvenient and emotionally draining. It could be that I have just gotten tired always being questioned.
At any rate, it has become unpleasant for me to spend long periods of time with my mother. Her needs seem to always trump mine until I lose myself in her care. I know that trap and am trying to avoid it. What is worse is it isn't just her needs but her every desire that has become mine to fulfill. How did this happen? Maybe it is because I have begun to resent not getting to eat food I like, go to church unencumbered, Or even decorate my home as I like. New normal now has negated my ability to plan my day without a power struggle. This is all so very new, and now constant. It wears me out.
So...I bought some time from the caregiver and I went back to work. I first went to my campus job, always slow during the summer, where I enjoyed lunch with four newer to me students. It was surprisingly odd, as what had been a pretty stable group of religious seekers just a few weeks ago morphed into an eclectic band of unknown anxiety ridden lost souls during the summer months. It was different, but still good. That filled three hours. After the campus lunch I went to the hospital getting a few precious hours of hospital time in while my extremely competent replacement is being oriented.
I am nearly out of my hospital job. My ill colleague has returned,still very shaky, from her extended leave. I cannot help but worry for her as I think she came back before she was ready. When I decided I had to leave this particular chaplaincy a mere six weeks ago myself and gave notice of my intention to be releasing the position to my supervisor, arrangements were made and my replacement hired. She began work the same day that my ill colleague returned, just a few days ago. As NewCHaplain is being brought on board I agreed to help the team and do a few more hours while she is brought up to speed.
As I enjoy the day I become aware of this trap too. I should have just left. It was hard to leave and the seduction of the ministry is strong. I love the work so much and my willpower is weak. I have friends there and with mom I am extremely isolated at times. I worry I will lose my balance again and would continue in this bad job after leaving if they only ask.
A few hours more, seeing patients and helping with office clean up, navigating the computer programs and explaining subtleties of hospital policies and politics, I am once again on my own and headed home.
Oh great spirit,help.
I am surrounded by folks that are better at what I do than I am. In theory that is good and normally I would rejoice to have such great colleagues. And actually I do! Right now, I am just so sad. I have failed in my heart, somehow, to be the caregiver I wanted to be, and that mom needs. I have failed to balance things enough to keep a beloved hospital ministry going. But mostly, I have failed to maintain the connections that I need to stay strong in my faith.
Grimelda shows me the traps of this thinking. She reminds me things are meant to change. Normal is fluid by design. When I stumble the ones who are given the gifts I drop are grateful and all is not lost, just different. Mom likes her caregiver. Her caregiver likes her. She enjoys her work as much as I enjoyed mine. The students will return, always new ones anyway, in September. New Normal can also be good. As River changes its path, it is still a river. All stages of the tree are beautiful in their own way and many depend on it to thrive. Change is neither good nor bad. It just is, and that is glorious.
AMEN
At any rate, it has become unpleasant for me to spend long periods of time with my mother. Her needs seem to always trump mine until I lose myself in her care. I know that trap and am trying to avoid it. What is worse is it isn't just her needs but her every desire that has become mine to fulfill. How did this happen? Maybe it is because I have begun to resent not getting to eat food I like, go to church unencumbered, Or even decorate my home as I like. New normal now has negated my ability to plan my day without a power struggle. This is all so very new, and now constant. It wears me out.
So...I bought some time from the caregiver and I went back to work. I first went to my campus job, always slow during the summer, where I enjoyed lunch with four newer to me students. It was surprisingly odd, as what had been a pretty stable group of religious seekers just a few weeks ago morphed into an eclectic band of unknown anxiety ridden lost souls during the summer months. It was different, but still good. That filled three hours. After the campus lunch I went to the hospital getting a few precious hours of hospital time in while my extremely competent replacement is being oriented.
I am nearly out of my hospital job. My ill colleague has returned,still very shaky, from her extended leave. I cannot help but worry for her as I think she came back before she was ready. When I decided I had to leave this particular chaplaincy a mere six weeks ago myself and gave notice of my intention to be releasing the position to my supervisor, arrangements were made and my replacement hired. She began work the same day that my ill colleague returned, just a few days ago. As NewCHaplain is being brought on board I agreed to help the team and do a few more hours while she is brought up to speed.
As I enjoy the day I become aware of this trap too. I should have just left. It was hard to leave and the seduction of the ministry is strong. I love the work so much and my willpower is weak. I have friends there and with mom I am extremely isolated at times. I worry I will lose my balance again and would continue in this bad job after leaving if they only ask.
A few hours more, seeing patients and helping with office clean up, navigating the computer programs and explaining subtleties of hospital policies and politics, I am once again on my own and headed home.
Oh great spirit,help.
I am surrounded by folks that are better at what I do than I am. In theory that is good and normally I would rejoice to have such great colleagues. And actually I do! Right now, I am just so sad. I have failed in my heart, somehow, to be the caregiver I wanted to be, and that mom needs. I have failed to balance things enough to keep a beloved hospital ministry going. But mostly, I have failed to maintain the connections that I need to stay strong in my faith.
Grimelda shows me the traps of this thinking. She reminds me things are meant to change. Normal is fluid by design. When I stumble the ones who are given the gifts I drop are grateful and all is not lost, just different. Mom likes her caregiver. Her caregiver likes her. She enjoys her work as much as I enjoyed mine. The students will return, always new ones anyway, in September. New Normal can also be good. As River changes its path, it is still a river. All stages of the tree are beautiful in their own way and many depend on it to thrive. Change is neither good nor bad. It just is, and that is glorious.
AMEN
Tuesday, June 29, 2010
Pearls
It has been weeks since I could find my voice again. Deciding to leave my hospital job drowned me in self loathing and defeatism. I could not move either way. I was stuck deep in the quicksand of surrender.It is a lonely, frightening place.
What changed? How have I once again found a way to write my soul? Many little things and nothing. Mom has progressed along her terminal road. My hopes of hanging out and just being with her have simply dissolved. Now I long to sit with the ill and dying for a break from her.
Save me from myself Grimelda.
What changed? How have I once again found a way to write my soul? Many little things and nothing. Mom has progressed along her terminal road. My hopes of hanging out and just being with her have simply dissolved. Now I long to sit with the ill and dying for a break from her.
Save me from myself Grimelda.
Friday, May 21, 2010
Call Waiting- Call Forwarding-Wrong Number?
I indeed feel in the desert now. I know there is life here too. Not the green familiar. No. Not the lush blooming delicate flowers. Not the soothing green forests. Not even the wet mud of melt and infernal buzzing of bloodsucking insects! This is more than summer. It is an internal climatic shift. My life mirrors the world around me after all.
I must learn from the lizard, the tumbleweed and the baking rocks. Find that new beauty. Right now it just feels dried up and cooked.
After two months of covering for the absent full time chaplain I am cooked. I kept cutting the hours, moving them around, dividing them up into smaller segments, and even so, I cannot make it work. The pay is so small as a per-diem employee that my take home is less than I am paying the caregiver for mom. The reality that I am paying to work, literally, has finally lifted the blinders. I am leaving the job. It makes me sad. I am fighting the grief and building resentment. I also know there really is no other option for me that makes any sense and that makes me angry. So, will I go back when mom progresses and is gone? Will I go do some other chaplaincy that is perhaps more manageable? Or, hope springs eternal, better compensated? Will I just give up? Right now, I don't know. I do know that this adventure is over and it is time to let it go. I loved it while it lasted.
Go with God, hospital chaplaincy. Rest in Peace.
Amen.
I must learn from the lizard, the tumbleweed and the baking rocks. Find that new beauty. Right now it just feels dried up and cooked.
After two months of covering for the absent full time chaplain I am cooked. I kept cutting the hours, moving them around, dividing them up into smaller segments, and even so, I cannot make it work. The pay is so small as a per-diem employee that my take home is less than I am paying the caregiver for mom. The reality that I am paying to work, literally, has finally lifted the blinders. I am leaving the job. It makes me sad. I am fighting the grief and building resentment. I also know there really is no other option for me that makes any sense and that makes me angry. So, will I go back when mom progresses and is gone? Will I go do some other chaplaincy that is perhaps more manageable? Or, hope springs eternal, better compensated? Will I just give up? Right now, I don't know. I do know that this adventure is over and it is time to let it go. I loved it while it lasted.
Go with God, hospital chaplaincy. Rest in Peace.
Amen.
Wednesday, May 5, 2010
self care splatter
I fell off the self care wagon. I have not kept my promise to myself to write everyday. I have been sleeping. That is good. Probably. I have been mostly eating right. That is almost true. I am taking my vitamins and one medication more regularly (almost 50% compliant)...I suppose that is progress. I have been working too, too much.While rewarding spiritually, it is draining physically and the time to be....vanished. That has been problematic. I have missed therapy, my women minister's support group, my denominational ministers group, my standing monthly lunch date, my friendly breakfast gathering, two appointments for doctors. The two retreats I promised myself, one after the other. I am late to everything. My dog and cats have not been to the vet or groomer. Mom missed a follow up eye exam. I didn't even make it to church for six weeks unless I was preaching.
I think I have answered my question. No. I cannot do it all.
Grimelda...guide me to release what I must with joy. Aid me in halting my headlong dash towards exhaustion. Teach me to love choosing myself sometimes. Care for those I must let go to do that. Help me grieve this loss without hurting those around me in my ambivalent pain.
Amen
Friday, April 2, 2010
a fear filled glimpse
I hear the abrupt coughing of either Mom or my daughter break a silence that, until now, has only held the sound of cats scratching their ears over refrigerator hum. The information overload of the day has unsettled me. My recent sleepy bliss is once again punctuated with unsought midnight ramblings. My mind will not still.
I began the day with mom care as usual, but she is getting weary, trying to do too much all at once after being so very sedentary for months. I find myself unable to ignore her coughing, her hairball clearing snorts that must be the result of our family cold, the spring pollen, the overstimulated senses and just too much icky in the sinuses. Mornings are long and quite undignified lately.
This one was much the same. I made the coffee, I wrote out her calendar, I put together her breakfast and prepared my own satchels for a day of work. When the aide arrived, I left the home behind and went about my workday as planned. I went first to the Alzheimer's care giver's support group meeting where we were scheduled to have a speaker. I have arranged to be on call off site so that I can attend these meetings. That has been working well for all. I have given up, at some point, the idea of only doing one thing at a time. I am unsure how to change it back now, to focus things more, or if I should even try.
Before I went in, my cell phone rang. I have been trying to close a communication loop with my stricken friend through her husband for four days. It was him. Turns out she is far more ill than I knew. The stress of the work we share, coupled with inadequate support and self care has resulted in a serious health crisis. It looks like possible burnout to me. My heart sinks. There really is nothing much I can do for any of them. I will do what I can, and for now, that is not much. I pray. For her. For her family. For strength and for faith. For guidance. (Are you there ,Lord?)
I go in. The regulars are remarkably missing. The speaker is quite good and the resources shared are excellent. The new folks that have come to the presentation are varied in their relationship to the disease. The gathering includes people who are just beginning to deal with a recent diagnosis, or with the fear of one as their beloved or they themselves struggle with memory issues. I didn't expect to be the veteran in the group. Revisiting those early times, listening empathetical to their stories, I notice how very far mom and I have come already. Yes I am tired and at the moment writing away my insomnia, but we have managed to navigate quite a few of the crises of the early stages already.
I hear again, with recently pricked ears, how important it is to take care of the caregiver. Fueled by ravenous determination, I pick up pamphlets and business cards, and ... my beeper goes off. LOUDLY. I am immediately filled with undeniable anger. I don't want to go. I want to stay with the caregivers group and be fed. But that is not the plan I made. It is the hospital and I answer.
I pray my way down the street to the parking lot. I pray my way to the emergency entrance. I pray my way to the bedside and , indeed, now I am here. Now I am the chaplain and now my prayers are with the patient and her family. This is immediate. The need is intense and just having "the chaplain" here eases the tension in the room. My anger is gone. It isn't me. It is "the chaplain". By answering that call I observe the workings of Grace. At this moment it is clear! This is what I am called to do. How can I give this up?
Afterward, grabbing lunch from the snack bar, I wonder. What is the price I pay for being a caregiver? Can I stop, even if I choose to? Is it humanly possible to do all this? Will I too get hauled off in an ambulance for giving too much away? What will happen to my coughing family if I do? And then the BIG FEAR sneaks up. Will I also get Alzheimer's?
Yes. I am afraid. It was pointed out to me that the opposite of fear is NOT bravery, as I had previously believed. The opposite of fear is faith. To keep faith strong, like a muscle, it needs exercise. I exercise my own faith with prayer. The way I am praying lately, I could be an Olympian. I am also, slightly aware that I think this is sort of crazy. Let's face it, I talk regularly with an invisible being. How different is that from someone who talks to a six foot tall invisible dinosaur named Grimelda? If being this prayerful is madness, then it is this divine madness that will have to see me through.
Precious creator: I seek Comfort for my dear friend in her pain. May she know that you are with her, and myself, as we both struggle to keep ourselves together. I struggle to care for myself. Grant me sleep, and good sense. Restore us all to health. But mostly, help me to keep my perspective, my balance and my center. I celebrate your precious gift of time with mom and my daughter, my loving husband. I also appreciate the gifts of compassion I have experienced through Grace. May all of us move forward renewed in our faith. And say hello to Grimelda for me.
Amen
I began the day with mom care as usual, but she is getting weary, trying to do too much all at once after being so very sedentary for months. I find myself unable to ignore her coughing, her hairball clearing snorts that must be the result of our family cold, the spring pollen, the overstimulated senses and just too much icky in the sinuses. Mornings are long and quite undignified lately.
This one was much the same. I made the coffee, I wrote out her calendar, I put together her breakfast and prepared my own satchels for a day of work. When the aide arrived, I left the home behind and went about my workday as planned. I went first to the Alzheimer's care giver's support group meeting where we were scheduled to have a speaker. I have arranged to be on call off site so that I can attend these meetings. That has been working well for all. I have given up, at some point, the idea of only doing one thing at a time. I am unsure how to change it back now, to focus things more, or if I should even try.
Before I went in, my cell phone rang. I have been trying to close a communication loop with my stricken friend through her husband for four days. It was him. Turns out she is far more ill than I knew. The stress of the work we share, coupled with inadequate support and self care has resulted in a serious health crisis. It looks like possible burnout to me. My heart sinks. There really is nothing much I can do for any of them. I will do what I can, and for now, that is not much. I pray. For her. For her family. For strength and for faith. For guidance. (Are you there ,Lord?)
I go in. The regulars are remarkably missing. The speaker is quite good and the resources shared are excellent. The new folks that have come to the presentation are varied in their relationship to the disease. The gathering includes people who are just beginning to deal with a recent diagnosis, or with the fear of one as their beloved or they themselves struggle with memory issues. I didn't expect to be the veteran in the group. Revisiting those early times, listening empathetical to their stories, I notice how very far mom and I have come already. Yes I am tired and at the moment writing away my insomnia, but we have managed to navigate quite a few of the crises of the early stages already.
I hear again, with recently pricked ears, how important it is to take care of the caregiver. Fueled by ravenous determination, I pick up pamphlets and business cards, and ... my beeper goes off. LOUDLY. I am immediately filled with undeniable anger. I don't want to go. I want to stay with the caregivers group and be fed. But that is not the plan I made. It is the hospital and I answer.
I pray my way down the street to the parking lot. I pray my way to the emergency entrance. I pray my way to the bedside and , indeed, now I am here. Now I am the chaplain and now my prayers are with the patient and her family. This is immediate. The need is intense and just having "the chaplain" here eases the tension in the room. My anger is gone. It isn't me. It is "the chaplain". By answering that call I observe the workings of Grace. At this moment it is clear! This is what I am called to do. How can I give this up?
Afterward, grabbing lunch from the snack bar, I wonder. What is the price I pay for being a caregiver? Can I stop, even if I choose to? Is it humanly possible to do all this? Will I too get hauled off in an ambulance for giving too much away? What will happen to my coughing family if I do? And then the BIG FEAR sneaks up. Will I also get Alzheimer's?
Yes. I am afraid. It was pointed out to me that the opposite of fear is NOT bravery, as I had previously believed. The opposite of fear is faith. To keep faith strong, like a muscle, it needs exercise. I exercise my own faith with prayer. The way I am praying lately, I could be an Olympian. I am also, slightly aware that I think this is sort of crazy. Let's face it, I talk regularly with an invisible being. How different is that from someone who talks to a six foot tall invisible dinosaur named Grimelda? If being this prayerful is madness, then it is this divine madness that will have to see me through.
Precious creator: I seek Comfort for my dear friend in her pain. May she know that you are with her, and myself, as we both struggle to keep ourselves together. I struggle to care for myself. Grant me sleep, and good sense. Restore us all to health. But mostly, help me to keep my perspective, my balance and my center. I celebrate your precious gift of time with mom and my daughter, my loving husband. I also appreciate the gifts of compassion I have experienced through Grace. May all of us move forward renewed in our faith. And say hello to Grimelda for me.
Amen
Wednesday, March 31, 2010
making hard choices
For someone who has no full time job I sure am busy! It is spring in every sense of the word. The rain has finally slowed leaving the rivers flooded, the basements puddled or worse, the air through open windows is damp and warming, the smell of wet is everywhere. The spring cold that I claimed was allergies has proved me fallible. We have had the whole family coughing for days now.
It is currently holy week and there are church events ever few minutes! The Hillel students have taken over our religious house to create a campus wide Seder, meanwhile the Christian students are scrambling to get to the various houses of worship for mass, Maundy Thursday, good Friday and of course Easter. The palms from last Sunday are braided into crosses, the matzoh from Monday is stacked on the shelves, the rooms are triple booked as every religious club on campus hosts a big event. Where did all these hard boiled eggs come from? All the while, in the background, is the slow drum beat of terms impending end and the pre-grieving of seniors having one last party, one last concert, one last festival. Spring is the most conflicted term of the academic year.
Meanwhile, @ job number two, the hospital. The full time chaplain, who is both my colleague and my friend, was taken suddenly and seriously ill last week. She is now out on medical leave for an indefinite amount of time. The rest of the pastoral care staff have asked me to cover for her during her absence. I am conflicted.
I have been trying to figure out how to balance just one day of hospital chaplaincy and care giving mom for months now. How in the world am I going to do this full time for a few weeks, or possibly months?
Job #3, the church has given me room to breathe. As a back up minister for them, the Sr. minister takes over for the holidays. Thank you God, in so many, many ways.
Now for job #4. Mom. She is finding her new church exciting, but she too is struggling. Everything at my house for the holidays is different and nothing seems to make sense. She is growing more anxious as she tries to do more things with outsders (a good thing) and cannot keep a calendar or a clock in her head (a bad thing) not to mention phone numbers, or names of folks. She is trying so hard and is so frightened underneath. I wish it was different. I try to ease things but it is next to impossible to fill a bucket that has no bottom. I pour the information in and it just has no place to land. She remains thirsty in spite of the constant flow. I have hired the home helper to come all week, just to get us through, but what is next? How long will this last? When is the next plateau?
I spin, I spin, I spin. As it is, I am so tired I allowed myself to get run down, resulting in first me then everyone else getting sick.
It is time for me to get set for class as today is a campus day, but I carry the hospital pager "in case". What in the world will I do if it actually goes off during class? I am not the only one that needs a better plan. But I definitely need a better plan
Creator, lead me as I am turning endlessly in circles. Amen
It is currently holy week and there are church events ever few minutes! The Hillel students have taken over our religious house to create a campus wide Seder, meanwhile the Christian students are scrambling to get to the various houses of worship for mass, Maundy Thursday, good Friday and of course Easter. The palms from last Sunday are braided into crosses, the matzoh from Monday is stacked on the shelves, the rooms are triple booked as every religious club on campus hosts a big event. Where did all these hard boiled eggs come from? All the while, in the background, is the slow drum beat of terms impending end and the pre-grieving of seniors having one last party, one last concert, one last festival. Spring is the most conflicted term of the academic year.
Meanwhile, @ job number two, the hospital. The full time chaplain, who is both my colleague and my friend, was taken suddenly and seriously ill last week. She is now out on medical leave for an indefinite amount of time. The rest of the pastoral care staff have asked me to cover for her during her absence. I am conflicted.
I have been trying to figure out how to balance just one day of hospital chaplaincy and care giving mom for months now. How in the world am I going to do this full time for a few weeks, or possibly months?
Job #3, the church has given me room to breathe. As a back up minister for them, the Sr. minister takes over for the holidays. Thank you God, in so many, many ways.
Now for job #4. Mom. She is finding her new church exciting, but she too is struggling. Everything at my house for the holidays is different and nothing seems to make sense. She is growing more anxious as she tries to do more things with outsders (a good thing) and cannot keep a calendar or a clock in her head (a bad thing) not to mention phone numbers, or names of folks. She is trying so hard and is so frightened underneath. I wish it was different. I try to ease things but it is next to impossible to fill a bucket that has no bottom. I pour the information in and it just has no place to land. She remains thirsty in spite of the constant flow. I have hired the home helper to come all week, just to get us through, but what is next? How long will this last? When is the next plateau?
I spin, I spin, I spin. As it is, I am so tired I allowed myself to get run down, resulting in first me then everyone else getting sick.
It is time for me to get set for class as today is a campus day, but I carry the hospital pager "in case". What in the world will I do if it actually goes off during class? I am not the only one that needs a better plan. But I definitely need a better plan
Creator, lead me as I am turning endlessly in circles. Amen
Thursday, March 25, 2010
Wednesday, March 24, 2010
Back to Work
The work pressure is on for me as the calendar doesn't care if I have time and as I have already lost two days to this cold. I went back to work today before I was well. I am sorry. I feel doubly bad because the woman I pay to help with mom was just hours past a bout with food poisoning herself. We both were at the Dr. yesterday. Mom's aide had called in sick yesterday, but feeling well enough last night, had come in weak but no longer "ill". My nose had quit running, I still cough though. Dilemma for both of us: No work-no pay. As independent contractors, we don't get sick days. I could not reschedule my meetings, I could not leave mom alone, the aide was sure she was not contagious, the students are going to come plan for the upcoming holidays and there is not a substitute for me, so with the promise of mutual low functioning and safety first,(love that Purell!)we made a pact. Mom's aide would do little besides make sure mom was safe.
I would guard my coughing and go to work. I would just keep the meetings low key and beyond coughing distance. I also promised everyone to return as soon as soon as I could so that we both could get back to bed. It was the best we could do. Mom seemed to be OK with it, so that is what we decided to do.
Honestly,sometimes I feel Mom would have me stay with her 24/7. I cannot. As much as I love my mother, and I really do love her, I also love chaplaincy. I feel alive to be out there, doing what I do. This day was exactly one of those days. By 10 am I was helping Hillel students plan their Seder, it isn't easy juggling the responsibilities of kashrut and academics. I had already joyously accepted the invitations of the GSA students for the Pride dinner,and I was looking forward to having a quick connection with a protestant student that had wanted to talk about her boyfriend when my cell phone went off. I thought it was about mom so I answered without looking. It wasn't.
I unexpectedly was called to another site, a place where I had been singing hymns with mom as a volunteer, to help someone we just barely knew. In between volunteer clergy, they had found themselves in urgent need of a protestant clergyman. I responded to the emergency call, and by 11 I sat with an aged severely ill woman and her family as she, having taken a sudden turn, prepares to die. The Spirit descends and surrounds us all. Silence. Her unique dying process begun, her beloved family gathering from distant homes,together we share prayers, blessings and amazing grace, the mystery of her passage remains, her final days or hours surrounded by the love she built over her lifetime. It is palpable, her legacy the devotion shared,The grace of awareness among her family and caregivers, Hospice at its best, this blessing I witness and hold in gratitude.
I relocate again. It is 12:30. I must return to school. Class is at 1. Discussion is lively, the energy of Spring and new adulthood fill my heart. As I leave after class I realize I missed lunch. I go home at 4 to find my caregiver already gone, relived by my daughter who has come home early from work, herself sick. She has a cold. She is too ill to drive to her own home. She wants to stay here and be taken care of. There goes the rest of "my rest". I cough, finally, relaxing. This is Home. As I reheat last night's chicken soup, find a Popsicle and pour a glass of juice for my adult daughter, Mom says,"Did you get all your stuff done?"
Yes, mother. Yes, today I got all my stuff done. And I am tired. I am taking tomorrow off. We will take the financial hit.
Great creator, Thank you for this amazing life, bless the young and old in their fear and frailty, hold us all as we find our way through, and may we all be ever aware of your constant love and care. May the love we share be constantly returned, and may all of us be surrounded by Compassion when it is our time to die.
Amen
I would guard my coughing and go to work. I would just keep the meetings low key and beyond coughing distance. I also promised everyone to return as soon as soon as I could so that we both could get back to bed. It was the best we could do. Mom seemed to be OK with it, so that is what we decided to do.
Honestly,sometimes I feel Mom would have me stay with her 24/7. I cannot. As much as I love my mother, and I really do love her, I also love chaplaincy. I feel alive to be out there, doing what I do. This day was exactly one of those days. By 10 am I was helping Hillel students plan their Seder, it isn't easy juggling the responsibilities of kashrut and academics. I had already joyously accepted the invitations of the GSA students for the Pride dinner,and I was looking forward to having a quick connection with a protestant student that had wanted to talk about her boyfriend when my cell phone went off. I thought it was about mom so I answered without looking. It wasn't.
I unexpectedly was called to another site, a place where I had been singing hymns with mom as a volunteer, to help someone we just barely knew. In between volunteer clergy, they had found themselves in urgent need of a protestant clergyman. I responded to the emergency call, and by 11 I sat with an aged severely ill woman and her family as she, having taken a sudden turn, prepares to die. The Spirit descends and surrounds us all. Silence. Her unique dying process begun, her beloved family gathering from distant homes,together we share prayers, blessings and amazing grace, the mystery of her passage remains, her final days or hours surrounded by the love she built over her lifetime. It is palpable, her legacy the devotion shared,The grace of awareness among her family and caregivers, Hospice at its best, this blessing I witness and hold in gratitude.
I relocate again. It is 12:30. I must return to school. Class is at 1. Discussion is lively, the energy of Spring and new adulthood fill my heart. As I leave after class I realize I missed lunch. I go home at 4 to find my caregiver already gone, relived by my daughter who has come home early from work, herself sick. She has a cold. She is too ill to drive to her own home. She wants to stay here and be taken care of. There goes the rest of "my rest". I cough, finally, relaxing. This is Home. As I reheat last night's chicken soup, find a Popsicle and pour a glass of juice for my adult daughter, Mom says,"Did you get all your stuff done?"
Yes, mother. Yes, today I got all my stuff done. And I am tired. I am taking tomorrow off. We will take the financial hit.
Great creator, Thank you for this amazing life, bless the young and old in their fear and frailty, hold us all as we find our way through, and may we all be ever aware of your constant love and care. May the love we share be constantly returned, and may all of us be surrounded by Compassion when it is our time to die.
Amen
Tuesday, March 23, 2010
making myself sick
One of my favorite poems has always been first fig by Edna St. Vincent Millay.
My candle burns at both ends,
it will not last the night,
but ah foes, oh my friends,
it gives a lovely light.
Somehow, I always felt that I was somehow immune to that extinguishing. My double wicked candle was going to burn endlessly by the force of my own will! Wrong! I find myself doing next to nothing right now. I am home sick. My nose and tears have been running for four days. When I allowed myself to get too tired I got sick.
I wasn't sleeping enough. I wasn't doing enough to care for myself. I gave too much away. I would tell my kids not to do this. I would not let mom do this. And yet...
So I am lucky. My nose is red. My throat is sore. And I am finally resting and renewing. The next step is to make different choices next time. This could become a much more serious problem, like heart disease or depression, if I do not pay attention. Mom's disease is long term, progressive and eventually terminal. May being her caregiver not follow suit!
So thank you Creator for giving me this lovely red nose, these chapped lips, this sore throat. My skin will heal and my behavior can change in time.
I am going back to bed, and sleep.
Amen.
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