It is amazing who comes into our lives and what we learn from them unexpectedly. Such is the experience I am processing in prayer tonight.
I have a friend who is going through some really horrific financial times. Like most working folks around here, the dip in the economy has impacted her family significantly. Unlike most working folks, she has no family or friends really to help her through. After years of trying to live on too small a salary, she has lost her savings, her home, even her furnishings and jewelry in an effort to stay afloat. For many reasons, some poor choices, some bad luck, but mostly health related, my friend has descended into enormous debt. Lately, things have gotten bleak indeed. She daily must make difficult choices between basic human needs, like food or medicine, electricity or gasoline to get to work. I want to support her, and I try as I can, but her problems are so large, and my own reserves so tenuous, even depleted at times. It is obvious that I cannot save her from this and it makes me enormously sad.
Oddly, this friend has been one of the most generous of her time for my sorrows. I share my lunch with her on occasion and we laugh and find joy in spite of the pain around us. She has been a gift to my heart and a devoted visitor for mom. She has also been a wise theologian, although I don't know if she would like me saying such a thing. She has given me a Lenten lesson I will never forget. If Lent is about giving up something in order to help those less fortunate than ourselves, she has taught me by example and I am humbled.
In the last year, as mom's illness has raised my bills and reduced my income, I have also felt the bite of economic change. She is more than enough to keep me cautious. Two of her medications are not covered by her insurance and the alternatives they allow do not help her. I have wasted hours, days, trying to get her something to alleviate her pain to no avail. In my frustration, I keep on dropping another $40 for three pills at a time that give her, and consequently me, ease to sleep for another three nights. I regularly spend twice as much on my grocery bill than I used to just to accommodate her special diet. I pay to get her hair washed and styled once a week, and our heat bill doubled as we no longer turn down the heat (the house is never empty anymore). We keep finding open windows and the heat cranking, or last summer the air conditioner on and the door wide open, all new expensive behaviors since dementia.
I brought mom in when her own money ran out. Her carefully squirreled away funds fell to con artists, some health issues, bad luck, poor choices and all the same reasons my friend suffers. Mom was deep in debt, sick and destitute. I remember all that we did, my husband and I, as a family, in our efforts to get her settled and safe. It was difficult and yes full of sacrifices all round, including my own. There are times I resent giving up the things I wanted, worked for, to do that. I know the impact on my marriage has been tough to take for both of us. Mom is expensive in every sense of the word. It sometimes feels as if it will never end, and if it doesn't soon, I will be joining the "bad choices" financial club. There is no easy way to fix any of it and, once again, it is all so sad sometimes.
Tonight, as I was helping mom to bed she began talking about my friend and how I should leave her because it is too sad. "This has to stop!" she insisted. Mom won't pray for her, she told me, because my friend isn't doing anything in her eyes to fix it. I was tired and instead of remembering it was just mom's disease being so mean, I tried to explain to mom how our friend was struggling and how really difficult it was for her right now. Mom surprised me with her vehement insistence that "she isn't moving in with us if she becomes homeless!" Apart from mom being correct about that unfortunate truth, I was stunned as I looked at the parallels in their situations. Where is her compassion? Did that rot away with her numbers? Mom has been going to Lenten activities at her church the whole season. Did it mean nothing?
The biggest difference, my mom had someplace to go when it all ran out. Her paycheck doesn't cover her expenses either. If I continue to make these poor fiscal choices, will I be any better off? That mom's disease, or her fear, has robbed her of her impulse to pray for the needy is the saddest part of all.
So dear Grimelda, source of love, light , redemption and solace,
Ease our pain. Help us to keep whole as we continue on this road through sadness. Grant us endurance, laughter and hugs. Help us to keep our soft hearts. Give me the strength not to give too much away in my need to care for others. Let me learn from those before me, ancient and otherwise, and make different compassionate mistakes.
May we still rejoice in birdsong and smiles, in sunny days with puffy clouds and the new green of ressurecting life.
And help us to remember, all of us deserve prayer, especially those who make mistakes.
Amen
Amen
And,
Amen
Friday, April 15, 2011
Monday, March 28, 2011
Day Care
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, February 2, 2011
slowed by snow
It has been a long time since I made myself slow down enough to write. It has been survival mode for so long, I think I just adjusted to it inside and now I am functioning again. Tears and anger, panic and prayers, all help me through. I sleep more now and the other moments are full of being mom's executive function. Is it good functioning? I refuse to judge. It is working better than before, but still isn't what I was hoping for.
Disappointment is common as snowstorms in New England. Frequent and intense. It makes me slow down at any rate. Although I have been too occupied with the interminable tasks of living to write, I, and my connection to the holy have been growing. So much happens in silence and the dark. It has been a long uphill climb to adjust to my lost illusions of freedom and self determination.
When did I get the idea I had choices anyway? Letting go of more of my self and redefining ministry to fit my reality still only goes so far in my soul. I just feel betrayed. I resist what my heart finds painful. I try faking it, but to little benefit. I have grown adept at "fiblettes" for the demented, but it falls short at home. The problem is that I know when I am lying to myself, so it doesn't work very well.
So now, snowbound. Living in the strange yet beautiful white dunes of mega-snow. Isolated by the "snowball effect" of a Blizzard or Winter storm event every couple of days that keeps my students and my caregivers far from me and all of us locked inside. I am now unable to hide away from the disease that steals mom. The constant winter has forced me to care for her, too much and yet just enough, alone. For a month plus. With snow engulfing my world, I have few choices. I am here. No one else can come, even when they want to. And like the ever growing snowbanks prevent me from seeing the road, the constant exposure to mom's mental winter, prevents me from ignoring the reality. Now, to embrace that cold truth, and find the joy anyway.
I know there is a metaphor for the slowing of mom's brain that parallels this constant barrage of winter white. It is beautiful, dangerous, and can literally bring down the house if we ignore it and don't clear it.
Our physical bodies ache from all the shoveling. Our cabin fever is at a high pitch and worrying about the next storm only makes for a sour stomach. The weather will continue at its' pace, not ours. Snow will still come. Reacting is sometimes the only option.
For now...It is pretty, and it will be a very green summer with all the melt. That is all I can get to right now. but it is something.
It will have to do.
And it is enough.
Amen.
Disappointment is common as snowstorms in New England. Frequent and intense. It makes me slow down at any rate. Although I have been too occupied with the interminable tasks of living to write, I, and my connection to the holy have been growing. So much happens in silence and the dark. It has been a long uphill climb to adjust to my lost illusions of freedom and self determination.
When did I get the idea I had choices anyway? Letting go of more of my self and redefining ministry to fit my reality still only goes so far in my soul. I just feel betrayed. I resist what my heart finds painful. I try faking it, but to little benefit. I have grown adept at "fiblettes" for the demented, but it falls short at home. The problem is that I know when I am lying to myself, so it doesn't work very well.
So now, snowbound. Living in the strange yet beautiful white dunes of mega-snow. Isolated by the "snowball effect" of a Blizzard or Winter storm event every couple of days that keeps my students and my caregivers far from me and all of us locked inside. I am now unable to hide away from the disease that steals mom. The constant winter has forced me to care for her, too much and yet just enough, alone. For a month plus. With snow engulfing my world, I have few choices. I am here. No one else can come, even when they want to. And like the ever growing snowbanks prevent me from seeing the road, the constant exposure to mom's mental winter, prevents me from ignoring the reality. Now, to embrace that cold truth, and find the joy anyway.
I know there is a metaphor for the slowing of mom's brain that parallels this constant barrage of winter white. It is beautiful, dangerous, and can literally bring down the house if we ignore it and don't clear it.
Our physical bodies ache from all the shoveling. Our cabin fever is at a high pitch and worrying about the next storm only makes for a sour stomach. The weather will continue at its' pace, not ours. Snow will still come. Reacting is sometimes the only option.
For now...It is pretty, and it will be a very green summer with all the melt. That is all I can get to right now. but it is something.
It will have to do.
And it is enough.
Amen.
Monday, September 27, 2010
Take mom to work day II.
Well, our story continues with the absence of the homestay student, the unavailability of a neighbor to mom sit and the nature of the husband (He abhors change, wants to be the extra advisor at youth group and is finished with the mom watching) results with me hauling mother across the city, sandwich in hand, as a the last minute tag along to the worship I was scheduled to lead at one of the colleges. I am so lucky that the coincidence that it was parents weekend allowed it to be okay that this funny old stranger was part of their small group worship. To be fair mom's stories, although pure fantasy now and shared as fact ,are entertaining. I only cringed a little when she sagely told them how she was inspired to be a nurse by roller derby. She only has difficulty telling stories when she stumbles into reality. Her fiction is flawless. It was not quite disastrous though it was by Grace alone that we got through it.
Obviously I cannot keep dragging mom with me to work.
It is raining and I am wanting to hibernate. Avoidance has been working so well for my family. Just pretend it isn't there and it won't be, right? Perhaps I am a bit angry just now. Even though I have hours of undone, time dependent tasks to be accomplished at my campus jobs, today just cannot be a work day. Oh! the expletives I stuff inside. And there it is. My new alarm clock. Mom is up...gotta go.
Amen
Obviously I cannot keep dragging mom with me to work.
It is raining and I am wanting to hibernate. Avoidance has been working so well for my family. Just pretend it isn't there and it won't be, right? Perhaps I am a bit angry just now. Even though I have hours of undone, time dependent tasks to be accomplished at my campus jobs, today just cannot be a work day. Oh! the expletives I stuff inside. And there it is. My new alarm clock. Mom is up...gotta go.
Amen
Sunday, September 26, 2010
growing to hate Sunday
The best laid plans...This was to be a big church day...then my sister who was scheduled over a month ago for this opening Sunday called last night. She got sick. I was OK, and even understanding until she said,"you didn't have anything did you?" Yes, I had something. I had a lot of something and SUNDAYS are not days off for clergy! Now it is a wake mom up-get her dressed-cook breakfast-launch her to the Baptist church with a willing ride provider-get in my car-go late to my church for the first service-stay and work for half of the coffee hour-get back in the car-drive back home-catch mom when she is dropped off by the same willing driver-feed mom- get her settled until the hubby gets back from the second service (where I am going to be unfortunately conspicuously absent) get back in the car-return to church for the bi-monthly meeting of my campus ministry steering committee-get back in the car and go home so I can let the husband get back to his planning for Youth group tonight (which is scheduled the same time I am supposed to be preaching at one of the colleges)-morning. I am tired just thinking about it, and that only gets me to 2PM. I am counting on my home stay student or a neighbor (yet to be contacted) to be the home monitor while I work at a College in the evening. Still better than an all church day that ends with mom with the flu. Sermon for my day? We only think we are in charge of our life. Ummm..God? Why Sunday?
Oops...gotta run.
Oops...gotta run.
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
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