I'm really happy about all of the positive feedback I've received from my family about the "Outlaws" post. There are other stories I'd like to share, including from my maternal side of the family but I need a little time to decompress from the emotions I put into that post. One of my cousins wonders if several of us could somehow put our memories together. That would be a fun project, but how to do it? I read my post & the many facebook comments about the post aloud to my mom this afternoon. She enjoyed remembering & the nice compliments about how cool, thoughtful & funny my cousins think she is. She will absolutely never forget the Waldorf episode when the cousins locked themselves in a room with open windows. Do any hotel rooms actually have windows that open these days? I think the windows were open at the Waldorf that day cause we were feeding pigeons on the little ledge outside the window. I'm surprised they weren't flying around inside the room. Next time I write family memories I have to include the week my family stayed at the Beverly Hills Hotel. We were there for David's medical school graduation. My dad would never have paid for that expensive a hotel but we were compted for some reason. I wish some of my cousins had been there to enjoy a fairy tale stay at the Hotel California. My other most fun memory of being in a famous establishment was when we went to the Russian Tea Room when we were in NYC for Laura's wedding.
On a completely different subject yesterday I went to a gym.
I've actually never been to a real gym before. I've done aerobics classes ( the reason I can't stand Hall & Oates to this day). I've tried yoga a few different times. I went for a while to a "rehab" gym in the '90's after a lot of Physical Therapy on a previous back issue. Just before I found out I should not be climbing hills cause of some spinal problems ( compression fractures, a healing fracure in my sacrum & a pinched nerve) I was attempting to try getting in shape by walking my street which is a steep hill. I was making it twice around our looping street in about 30 min but with every step uphill I could feel my back.The PT's I'm seeing now said it would be OK to do the treadmill if it was flat & the recumbent bike. I was really sweating. Sometimes I get somewhat compulsive & I may have gotten carried away. I also got down on a mat & tried some of my PT exercises. While I'm still in PT, I'll probably only be able to get there once a week, but I'm so glad I got started. Besides the sweat my biggest challenge was figuring out the dashboards on both pieces of equipment. My writing idol, Nora Ephron said that every time she got into shape, something broke. Having had the following in the last 2 1/2 years I can relate: broken arm, rectal cancer, radiation therapy, 2 kinds of chemotherapy, 3surgeries, a kidney stone, a heart problem. Oh, I forgot the broken ankle.
I just realized something strange. I have a full plate of stress inducing realities right now but I may be happier than any day except when I gave birth. WHY? I am making my way through it. I survived 2 years of hellish cancer treatment all the while taking care of my mother. I wasn't always graceful. I cried in doctors offices all over Tucson. I had to deal with a one incompetent doctor who was trying to dictate what my surgeon should do with me & my first therapist lasted one session. She thought I was feeling sorry for myself. She needs to go work in a drug treatment program. I was not a candidate for tough love in the middle of my cancer treatment.
Saturday, May 9, 2015
Thursday, April 30, 2015
The Outlaws
When I was a very small girl,I became acquainted with the term "outlaws". My Uncle Artie coined the term to refer to the men & women who married into the Siegel family. He told my mom that they weren't inlaws, but outlaws. The Siegel family was large so there were lots of outlaws &cousins. My Siegel grandfather &his brother married my Siegel grandmother &her sister( a lot like twins marrying twins) so all of us were proficient at figuring out who was a first,second,once removed etc cousin. Unfortunately I never had the pleasure of knowing my Siegel grandmother as she died suddenly at a tragically young age. My grandfather remarried. Her name was Fan. She was an outlaw I guess but I knew very little about her. I assume she is the one who oversaw the huge spreads of food when the family gathered in their house at 205 Church Street. There were tables laden with everyone's favorite foods. Along with the various varieties of fish,bagels & salads there was always some Rice Krispies for my sister.
We used to have family reunions while my grandfather was still alive. They were held in a park in Lancaster,Pennsylvania around the time of my grandfather's birthday in June. They were large gatherings with many active children running around. I remember barbecues but I don't remember anyone in the family who could do that. It must have been catered. Some of the cousins have talked in recent years about resurrecting the reunion, that would be much fun. Some of my cousins I have not seen in 10 years. This is my fault I know for living in Arizona and not Massachusettes,NewYok,New Jersey, Maryland Pennsylvania or Virginia.
Unclet Artie as I said coined the term outlaw, so he will be the first I talk about. He was so funny,loving and he genuinely liked other people especially children. He always had something funny to say. He never lost his Brooklyn accent so the jokes always sounded funnier because of his delivery. He danced with all of the little girls at weddings& Bar Mitzvahs. He let us put our feet on top of his shoes while we danced. He had a nickname for me. I was "Pammy from Miami". ( I wasn't but it rhymed & it was funny so I loved it). Uncle Artie worked at the Pentagon. We always wanted him to tell us what he did there. Some of us were convinced he was a secret agent of some kind. When he explained what he did it never made any sense. I was sure he was under orders not to tell anyone about his top secret job. I still don't know what he did Maybe someday his kids will tell me.
At least one of the outlaws came with a partner & that would be Aunt Maureen. Aunt Maureen was beautiful (inside and out) & vivacious. To make her entrance into our family even more exciting, she brought her parents with her. I apologize that my memories of her dad are fuzzy, but I think he was the pet wrangler in that family. Àunt Maureen's mother was a force of nature. She too was beautiful. Her name was Aunt Reggie. She was exotic (at least to me). She had a British accent. She taught us how to get the best suntans (while it was still OK to get suntans). The secret was to mix iodine & baby oil, slather yourself up & then sit with a reflector aimed at your face. Both Aunt Maureen & Aunt Reggie were born to be married. They were also never say die matchmakers. They were always dressed impeccably( they also offered fashion advice). I remember Aunt Maureen &Uncle Charles stopping by our house in Illinois on their way back from their honeymoon. They were a lesson in newlywed romance. You could see the love in the air. If any of my cousins have a picture of their wedding party, I was a flower girl. I had to stand still for the longest time during the ceremony & I was gently reprimanded by my mother afterwards because I had been sliding my foot back & forth. I have a bracelet that was a gift to me for being in the wedding that I still treasure & wear. I'm pretty sure it was before Uncle Charles & Aunt Maureen's wedding that the infamous "locked door freak out"of my mom occurred at-- I think it was the Waldorf in NYC. We had connecting rooms. One of us cousins locked the connecting door leaving a bunch of us kids alone in an upper story room with wide open windows. I dont know how we got out, but no one fell out the window. I was honored to be present when Aunt Maureen remarried after being widowed, it was a beautiful wedding in her Japanese garden. I'm so glad Morris Tischler made her happy.
Unfortunately, Uncle Peter is a far away memory, but certain things are imprinted in my brain. He was kind, warm & soft-spoken. I remember loving him so much it hurt. He & my Aunt Anne brought me a native American doll from Oklahoma. Uncle Peter was a physician with, I'm not sure what it was called then, but something along the lines of "Indian health Services". Maybe one of the Ball children can let me know what it was called. He left us much too soon.
If Aunt Maureen came with a partner, then Patricia came with a whole posse. Patricia married my youngest Uncle, so she is only about 10 years older than me. She felt too young to be an Aunt& really wanted to just be called Patricia, but I could never do that. These days skipping the "Aunt" has been easier. She was (and is) beautiful & sophisticated. I looked up to her. She brought along her parents, sister, a few cousins& the most glamorous aunts ever. They were all gorgeous & very well put together. The Siegel family definitely needed their infusion of (I hate the word, but...) CLASS. Patricia & Uncle Stanley took me along to an outstanding cultural experience(Mikhaiĺ Baryshnikov). Sorry to report that no matter how impressed and excited I was, I could barely stay awake due to some late night teen shenanigans the previous night. I don't even remember what the shenanigans had been. By the way Patricia heard of Ravi Shankar before I did.
Aunt Selma was mysterious to me. First of all she never seemed to age. I had a couple of firsts at her house. One of those things was caviar. Oh my goodness, I've been addicted ever since. Aunt Selma also offered fashion advice. I was slow to find my style. I think I needed all the advice I could get. I remember show tunes always being on the stereo. I've been addicted to those ever since also.
I have one last Siegel outlaw & that was my Uncle Myer Nathan. He was a quiet sweet man. Maybe he wasn't always quiet. Maybe it was just when he was surrounded by Siegels. He had a lot of extra family responsibilities due to my Aunt's poor health. From my vantage point he did a fantastic job. I know his children loved him very much.
I had one outlaw on my mother's side of the family. Uncle Bob was a character, not a laugh out loud character, but just very unique. He was an entomologist & taught at St Lawrence University. He had no patience with us kids who were afraid of "bugs". He had a very distinctive voice. I can still hear it. I wish I could see his reaction to a local business here in Tucson "Uncle Bob's Popcorn".
I know some of these memories may be &probably are romanticized a little. Unless I made an outright mistake I ask my cousins to let me keep my fantasies. I also know that everything wasn't always "hunky dory". I know not everyone always got along, but I also know everyone loved one another. I left out someone's 2nd marriage cause it didn't work out & I figure that's not my busines to write about .
Thanks got to Uncle Artie for the outlaws joke. It stuck in my mind all of these years &gave me the idea for this post.
Addendum: My cousin Ellen messaged me on Facebook this morning. She said she liked this post &ŕeminded me that Aunt Reggie's husband's name was David Hayman. She also said it was OK to talk about her stepfather Ralph Klein. Yes, for a while at least my aunt's name was Anne Klein. Ellen told me that Pat(Patricia) used to refer to "Ralph Klein time" as opposed to Siegel time. Ralph liked to stick to the schedule like my dad did. They were prompt/ready to leave at the time they said they were leaving. The Siegels had famously long goodbyes which always put us behind scedule. Thank you Ellen.
We used to have family reunions while my grandfather was still alive. They were held in a park in Lancaster,Pennsylvania around the time of my grandfather's birthday in June. They were large gatherings with many active children running around. I remember barbecues but I don't remember anyone in the family who could do that. It must have been catered. Some of the cousins have talked in recent years about resurrecting the reunion, that would be much fun. Some of my cousins I have not seen in 10 years. This is my fault I know for living in Arizona and not Massachusettes,NewYok,New Jersey, Maryland Pennsylvania or Virginia.
Unclet Artie as I said coined the term outlaw, so he will be the first I talk about. He was so funny,loving and he genuinely liked other people especially children. He always had something funny to say. He never lost his Brooklyn accent so the jokes always sounded funnier because of his delivery. He danced with all of the little girls at weddings& Bar Mitzvahs. He let us put our feet on top of his shoes while we danced. He had a nickname for me. I was "Pammy from Miami". ( I wasn't but it rhymed & it was funny so I loved it). Uncle Artie worked at the Pentagon. We always wanted him to tell us what he did there. Some of us were convinced he was a secret agent of some kind. When he explained what he did it never made any sense. I was sure he was under orders not to tell anyone about his top secret job. I still don't know what he did Maybe someday his kids will tell me.
At least one of the outlaws came with a partner & that would be Aunt Maureen. Aunt Maureen was beautiful (inside and out) & vivacious. To make her entrance into our family even more exciting, she brought her parents with her. I apologize that my memories of her dad are fuzzy, but I think he was the pet wrangler in that family. Àunt Maureen's mother was a force of nature. She too was beautiful. Her name was Aunt Reggie. She was exotic (at least to me). She had a British accent. She taught us how to get the best suntans (while it was still OK to get suntans). The secret was to mix iodine & baby oil, slather yourself up & then sit with a reflector aimed at your face. Both Aunt Maureen & Aunt Reggie were born to be married. They were also never say die matchmakers. They were always dressed impeccably( they also offered fashion advice). I remember Aunt Maureen &Uncle Charles stopping by our house in Illinois on their way back from their honeymoon. They were a lesson in newlywed romance. You could see the love in the air. If any of my cousins have a picture of their wedding party, I was a flower girl. I had to stand still for the longest time during the ceremony & I was gently reprimanded by my mother afterwards because I had been sliding my foot back & forth. I have a bracelet that was a gift to me for being in the wedding that I still treasure & wear. I'm pretty sure it was before Uncle Charles & Aunt Maureen's wedding that the infamous "locked door freak out"of my mom occurred at-- I think it was the Waldorf in NYC. We had connecting rooms. One of us cousins locked the connecting door leaving a bunch of us kids alone in an upper story room with wide open windows. I dont know how we got out, but no one fell out the window. I was honored to be present when Aunt Maureen remarried after being widowed, it was a beautiful wedding in her Japanese garden. I'm so glad Morris Tischler made her happy.
Unfortunately, Uncle Peter is a far away memory, but certain things are imprinted in my brain. He was kind, warm & soft-spoken. I remember loving him so much it hurt. He & my Aunt Anne brought me a native American doll from Oklahoma. Uncle Peter was a physician with, I'm not sure what it was called then, but something along the lines of "Indian health Services". Maybe one of the Ball children can let me know what it was called. He left us much too soon.
If Aunt Maureen came with a partner, then Patricia came with a whole posse. Patricia married my youngest Uncle, so she is only about 10 years older than me. She felt too young to be an Aunt& really wanted to just be called Patricia, but I could never do that. These days skipping the "Aunt" has been easier. She was (and is) beautiful & sophisticated. I looked up to her. She brought along her parents, sister, a few cousins& the most glamorous aunts ever. They were all gorgeous & very well put together. The Siegel family definitely needed their infusion of (I hate the word, but...) CLASS. Patricia & Uncle Stanley took me along to an outstanding cultural experience(Mikhaiĺ Baryshnikov). Sorry to report that no matter how impressed and excited I was, I could barely stay awake due to some late night teen shenanigans the previous night. I don't even remember what the shenanigans had been. By the way Patricia heard of Ravi Shankar before I did.
Aunt Selma was mysterious to me. First of all she never seemed to age. I had a couple of firsts at her house. One of those things was caviar. Oh my goodness, I've been addicted ever since. Aunt Selma also offered fashion advice. I was slow to find my style. I think I needed all the advice I could get. I remember show tunes always being on the stereo. I've been addicted to those ever since also.
I have one last Siegel outlaw & that was my Uncle Myer Nathan. He was a quiet sweet man. Maybe he wasn't always quiet. Maybe it was just when he was surrounded by Siegels. He had a lot of extra family responsibilities due to my Aunt's poor health. From my vantage point he did a fantastic job. I know his children loved him very much.
I had one outlaw on my mother's side of the family. Uncle Bob was a character, not a laugh out loud character, but just very unique. He was an entomologist & taught at St Lawrence University. He had no patience with us kids who were afraid of "bugs". He had a very distinctive voice. I can still hear it. I wish I could see his reaction to a local business here in Tucson "Uncle Bob's Popcorn".
I know some of these memories may be &probably are romanticized a little. Unless I made an outright mistake I ask my cousins to let me keep my fantasies. I also know that everything wasn't always "hunky dory". I know not everyone always got along, but I also know everyone loved one another. I left out someone's 2nd marriage cause it didn't work out & I figure that's not my busines to write about .
Thanks got to Uncle Artie for the outlaws joke. It stuck in my mind all of these years &gave me the idea for this post.
Addendum: My cousin Ellen messaged me on Facebook this morning. She said she liked this post &ŕeminded me that Aunt Reggie's husband's name was David Hayman. She also said it was OK to talk about her stepfather Ralph Klein. Yes, for a while at least my aunt's name was Anne Klein. Ellen told me that Pat(Patricia) used to refer to "Ralph Klein time" as opposed to Siegel time. Ralph liked to stick to the schedule like my dad did. They were prompt/ready to leave at the time they said they were leaving. The Siegels had famously long goodbyes which always put us behind scedule. Thank you Ellen.
Tuesday, April 28, 2015
WE DON'T LIVE IN OREGON (caregiving part umpteen and a half)
Interesting to read my last post again. The interim has been almost chaotic. My mother has had an infection that required her to be admitted to the hospital for IV antibiotics . She then went to rehab for 2 weeks to try to regain her strength. She is now home and healthy though not yet back to her strength and abilities she had before this infection started. Looking back I realize this had probably been going on for at least 6-8 weeks. She is now receiving home heath. There are therapists, nurses & aides coming & going. I am grateful for the help. It won't last forever, but I will try to make the most of it now.
The day my mom went to the hospital was Friday April 3. Her condition deteriorated throughout the day. I was in touch with her Primary Care Provider who was less than helpful. I've blogged before how dismissively they have responded to my concerns, suggestions &questions. I had had it with the symbolic condescending pats on the head they gave me. However I thought we had finally come to an agreement to respect one another's voice. WRONG . I was trying to prepare for the first Passover Seder that night while monitoring & helping my mom. Thank goodness for the wonderful Charlotte who was here to help for part of the day. I won't detail the phone calls back & forth with the PCP at this time , but the gist of the message I got was that I was overreacting. She almost , but not quite told me to give her 2 aspirin & call her in the morning. Just before the third cup of wine at the Seder I called the home health nurse for advice. She told me to take her to the emergency room. The rest of the family agreed & I called an ambulance. The severity of what was wrong assured me we had done the right thing. The PCP called me the next day to see how my mom was. I told her she was in the hospital. She seemed genuinely shocked, but of course offered no apologies. (I think lawyers must teach a class to them titled " Never Aologize").
The reason I am blogging on this subject is that this is instead of an angry letter to the PCP. I don't have to worry about saying it just right, I can just express myself without endless drafts of a letter I would probably never send. I was ready to fire the PCP, I just hadn't made a final decision. On the 15th I received a letter from the PCP firing my MOTHER as a patient. I was angry but not entirely surprised. Frankly what made me the angriest was that she had kicked us to the curb before I had a chance to do it to her. What can I say? One of my least attractive traits is that I don't forgive or forget.
Her letter to me looked like it had been written by an attorney. (I really have nothing against attorneys, but realize this is my second snarky remark about them). It said they were giving us thirty days notice because they could not meet the family's expectations. Damn straight! This was the most honest thing she ever said. My expectations include listening to me as much as I listened to them. I expect that they respect my religious / spiritual beliefs. I expect that my mother be treated no matter her age. I expect infections to be carefully treated. I expect not to be subjected to hockum about weird diet fads & their proselytizing about Oregon's assisted suicide law. My mother has been seeing this PCP & her nurse for about six years. The first time the nurse came to our house she said my mom was on her"way out". I expect them to respect my requests that we not talk about death in our house. My mom wants to live. She has said it over & over & may she live for a long time to come. I expect them to know that a medication should be discontinued because of certain lab results. I expect an honest recounting of recent health problems my mother has had. (A hospitalization 3 years ago was a result of my mom's sodium getting to a dangerously low level while under the PCP's watch. The PCP continually refers to that hospitalization as being because my mom was constipated-She was but that's not why she was admitted to the hospital). Why did I put up with this nonsense ? My mom liked her & I thought by being vigilant I could keep the PCP & her nurse on top of things. All I did was irritate them.
I'm not considering it now but if I ever do decide to sue them, it may be for religious discrimination as much as malpractice. Jews just don't talk about death especially in front of the patient. They questioned me frequently about my Healthcare power of attorney & advance directives. I told them repeatedly that the I WAS my mom's POA,presented proof & more than once explained to them my mom tore up her advance directives over 10 years ago after she saw the effect they had on us as a family during my dad's final illness. They didn't seem to understand the difference between a power of attorney & advance directives. We didn't fit the cookie cutter mold of their expectations.
I would be less than honest if I did not mention that I made a huge mistake with these providers by letting professional/personal boundaries disappear because for a while I thought they were our friends. When you are greeted with a hug, sometimes your good sense goes out the window. I won't cross that line again.
By the way, I had a new excellent doctor for my mom within 48 hours. When I talked to their intake person, I was open what had happened with the previous provider. I expressed my philosophy & was assured that it was their philosophy too.
One last jab at this (I almost said crackpot but that would be wrong wouldn't it?) woman is that I think the attorneys didn't tell her to never leave an angry, incoherent voicemail. I'm never erasing it.
The day my mom went to the hospital was Friday April 3. Her condition deteriorated throughout the day. I was in touch with her Primary Care Provider who was less than helpful. I've blogged before how dismissively they have responded to my concerns, suggestions &questions. I had had it with the symbolic condescending pats on the head they gave me. However I thought we had finally come to an agreement to respect one another's voice. WRONG . I was trying to prepare for the first Passover Seder that night while monitoring & helping my mom. Thank goodness for the wonderful Charlotte who was here to help for part of the day. I won't detail the phone calls back & forth with the PCP at this time , but the gist of the message I got was that I was overreacting. She almost , but not quite told me to give her 2 aspirin & call her in the morning. Just before the third cup of wine at the Seder I called the home health nurse for advice. She told me to take her to the emergency room. The rest of the family agreed & I called an ambulance. The severity of what was wrong assured me we had done the right thing. The PCP called me the next day to see how my mom was. I told her she was in the hospital. She seemed genuinely shocked, but of course offered no apologies. (I think lawyers must teach a class to them titled " Never Aologize").
The reason I am blogging on this subject is that this is instead of an angry letter to the PCP. I don't have to worry about saying it just right, I can just express myself without endless drafts of a letter I would probably never send. I was ready to fire the PCP, I just hadn't made a final decision. On the 15th I received a letter from the PCP firing my MOTHER as a patient. I was angry but not entirely surprised. Frankly what made me the angriest was that she had kicked us to the curb before I had a chance to do it to her. What can I say? One of my least attractive traits is that I don't forgive or forget.
Her letter to me looked like it had been written by an attorney. (I really have nothing against attorneys, but realize this is my second snarky remark about them). It said they were giving us thirty days notice because they could not meet the family's expectations. Damn straight! This was the most honest thing she ever said. My expectations include listening to me as much as I listened to them. I expect that they respect my religious / spiritual beliefs. I expect that my mother be treated no matter her age. I expect infections to be carefully treated. I expect not to be subjected to hockum about weird diet fads & their proselytizing about Oregon's assisted suicide law. My mother has been seeing this PCP & her nurse for about six years. The first time the nurse came to our house she said my mom was on her"way out". I expect them to respect my requests that we not talk about death in our house. My mom wants to live. She has said it over & over & may she live for a long time to come. I expect them to know that a medication should be discontinued because of certain lab results. I expect an honest recounting of recent health problems my mother has had. (A hospitalization 3 years ago was a result of my mom's sodium getting to a dangerously low level while under the PCP's watch. The PCP continually refers to that hospitalization as being because my mom was constipated-She was but that's not why she was admitted to the hospital). Why did I put up with this nonsense ? My mom liked her & I thought by being vigilant I could keep the PCP & her nurse on top of things. All I did was irritate them.
I'm not considering it now but if I ever do decide to sue them, it may be for religious discrimination as much as malpractice. Jews just don't talk about death especially in front of the patient. They questioned me frequently about my Healthcare power of attorney & advance directives. I told them repeatedly that the I WAS my mom's POA,presented proof & more than once explained to them my mom tore up her advance directives over 10 years ago after she saw the effect they had on us as a family during my dad's final illness. They didn't seem to understand the difference between a power of attorney & advance directives. We didn't fit the cookie cutter mold of their expectations.
I would be less than honest if I did not mention that I made a huge mistake with these providers by letting professional/personal boundaries disappear because for a while I thought they were our friends. When you are greeted with a hug, sometimes your good sense goes out the window. I won't cross that line again.
By the way, I had a new excellent doctor for my mom within 48 hours. When I talked to their intake person, I was open what had happened with the previous provider. I expressed my philosophy & was assured that it was their philosophy too.
One last jab at this (I almost said crackpot but that would be wrong wouldn't it?) woman is that I think the attorneys didn't tell her to never leave an angry, incoherent voicemail. I'm never erasing it.
Tuesday, March 10, 2015
Who's the Boss? Caregiving Part Umpteen
Someone I trust (even tho I haven't seen her in a couple of years) told me "They work for you, not the other way around" (referring to doctors, nurses, home health aides, etc, etc....). People have been telling me this for the last eleven years when I first helped my mom coordinate care for my father (of blessed memory). First we cared for my him, then for my sister (of blessed memory) & now I am caring for my mom. I am sometimes a slow learner, but this particular lesson (that I am in charge, not all of the holders of the jobs mentioned above) has been imprinted on my brain finally, I hope. I am stronger & more capable of standing up for what I believe my mom needs. I realize I'm not an expert in their fields & will of course listen to them, but I am the boss, I am my mom's advocate. I will fight for her right to be as independent as she can for as long as she can be. I am tired of being "patted on the head" & mocked as some kind of obsessive- refusing to face reality- daughter. They need to recognize OUR reality, OUR goals & OUR beliefs. I think I might write it up & make it required reading for anyone coming into our home to help us.
Last night, I called the old friend mentioned in this post's first sentence & asked for free professional advice. She offered some suggestions within her practice guidelines(friend or not, a professional cannot offer advice without actually seeing the problem). I called her because my mom was going to have to wait 2 weeks for this kind of official appointment. The PCP wanted to wait until some other test results came in. I understand the theory of this. It's good medicine, although my suspicious nature told me it was being denied because they thought I was not facing "reality" &/or expecting too much. There is also need to suss out problems of cognition vs problems of strength. I don't want my mom getting weaker because I expect too little of her, on the other hand I don't want to endanger her because I am expecting too much of her. I won't go into detail in this post about the problem, but it involves the bathroom. I said that if we could not get help for 2 weeks, then the bathroom was going to be completely unsafe & dysfunctional in the interim. The nurse said, in that case, she would come look at the problem today. I appreciated that but it wasn't good enough. I cannot describe how dangerous & upsetting the situation is/was. I called my friend & told her the problem. We talked a long time. She said she agreed with the PCP about waiting for the test results but understood my frustration. She offered a suggestion. I immediately put it into effect & guess what? It works!!!!! No more crying or arguing from either my mom or me. Also, a lot less stress. I wish I had insisted on this type of consult several weeks ago. Instead I was left on my own & the PCP/Nurse suggestions. This lead to a wasted $110 fix that didn't work. You of course cannot return used bathroom items.
I am so happy right now that every trip to the bathroom does not need to be feared by either my mom or me!
Last night, I called the old friend mentioned in this post's first sentence & asked for free professional advice. She offered some suggestions within her practice guidelines(friend or not, a professional cannot offer advice without actually seeing the problem). I called her because my mom was going to have to wait 2 weeks for this kind of official appointment. The PCP wanted to wait until some other test results came in. I understand the theory of this. It's good medicine, although my suspicious nature told me it was being denied because they thought I was not facing "reality" &/or expecting too much. There is also need to suss out problems of cognition vs problems of strength. I don't want my mom getting weaker because I expect too little of her, on the other hand I don't want to endanger her because I am expecting too much of her. I won't go into detail in this post about the problem, but it involves the bathroom. I said that if we could not get help for 2 weeks, then the bathroom was going to be completely unsafe & dysfunctional in the interim. The nurse said, in that case, she would come look at the problem today. I appreciated that but it wasn't good enough. I cannot describe how dangerous & upsetting the situation is/was. I called my friend & told her the problem. We talked a long time. She said she agreed with the PCP about waiting for the test results but understood my frustration. She offered a suggestion. I immediately put it into effect & guess what? It works!!!!! No more crying or arguing from either my mom or me. Also, a lot less stress. I wish I had insisted on this type of consult several weeks ago. Instead I was left on my own & the PCP/Nurse suggestions. This lead to a wasted $110 fix that didn't work. You of course cannot return used bathroom items.
I am so happy right now that every trip to the bathroom does not need to be feared by either my mom or me!
Saturday, March 7, 2015
Potpourri
Several things are going on...
My mother's strength & ability to stay focused in reality are declining rapidly. I have written about my mother before. (The D word, Lost in Translation, & A Cup of Tea) I feel like I am betraying her by writing about how she is doing. It's private, but I need to write. It is my way of trying to make sense of the incomprehensible. Let's just say that I remember my great grandmother in her final years. She "saw" & "heard" things that were not there. She was not always cooperative. She didn't communicate much. She needed help from my grandmother in the bathroom. She was strong though. She walked around the house without a problem. My mom is having trouble even getting around with the walker. We have the wheelchair easily available now, because some times she needs it. She is capable of far more than she attempts. "I can't" is her favorite expression. If I walk away, she can do more than if I stand there & tell her she can do it. It's hard to decide though. I don't want her in danger, but sometimes if she says "I'm going to fall" it sounds to me more like a threat than a prediction. When I think about what I used to worry about with her, I would give anything to go back to those problems rather than the ones we have today. Will the current problems sometime in the future look "easy" or "mild"? I have been alone with my mom for almost 48 hours, save for an hour when the nurse practitioner came to see her yesterday. I have some relief coming in the morning for a few hours. What I look forward to the most is conversing. When I am away from home or if I'm able to talk on the phone after my mom is in bed, I chat & chat & chat..... I strike up conversations with almost everyone I see. Now I sound like I am whining. This is happening to my mother, not to me. I have so much to be grateful for. I need to count my blessings.
I am finding it hard to interject any humor, even my dark, sarcastic humor into this. I titled this post Potpourri because I intended to discuss other things that are going on. Thursday night the world lost a lovely inspirational woman at the tender age of about 57. I only knew her for a year but will never forget her serene demeanor in the face of an awful illness. Someday I hope to find what it takes to be at peace with a bad situation even while fighting against it. Tomorrow morning I am going to a group meeting where I met this lovely lady. The mood will be sad. Unbelievably, the set topic of the presentation & discussion will be friendship which has been planned for a long time.
We should all just breathe.......& try to be present for ourselves & one another.
My mother's strength & ability to stay focused in reality are declining rapidly. I have written about my mother before. (The D word, Lost in Translation, & A Cup of Tea) I feel like I am betraying her by writing about how she is doing. It's private, but I need to write. It is my way of trying to make sense of the incomprehensible. Let's just say that I remember my great grandmother in her final years. She "saw" & "heard" things that were not there. She was not always cooperative. She didn't communicate much. She needed help from my grandmother in the bathroom. She was strong though. She walked around the house without a problem. My mom is having trouble even getting around with the walker. We have the wheelchair easily available now, because some times she needs it. She is capable of far more than she attempts. "I can't" is her favorite expression. If I walk away, she can do more than if I stand there & tell her she can do it. It's hard to decide though. I don't want her in danger, but sometimes if she says "I'm going to fall" it sounds to me more like a threat than a prediction. When I think about what I used to worry about with her, I would give anything to go back to those problems rather than the ones we have today. Will the current problems sometime in the future look "easy" or "mild"? I have been alone with my mom for almost 48 hours, save for an hour when the nurse practitioner came to see her yesterday. I have some relief coming in the morning for a few hours. What I look forward to the most is conversing. When I am away from home or if I'm able to talk on the phone after my mom is in bed, I chat & chat & chat..... I strike up conversations with almost everyone I see. Now I sound like I am whining. This is happening to my mother, not to me. I have so much to be grateful for. I need to count my blessings.
I am finding it hard to interject any humor, even my dark, sarcastic humor into this. I titled this post Potpourri because I intended to discuss other things that are going on. Thursday night the world lost a lovely inspirational woman at the tender age of about 57. I only knew her for a year but will never forget her serene demeanor in the face of an awful illness. Someday I hope to find what it takes to be at peace with a bad situation even while fighting against it. Tomorrow morning I am going to a group meeting where I met this lovely lady. The mood will be sad. Unbelievably, the set topic of the presentation & discussion will be friendship which has been planned for a long time.
We should all just breathe.......& try to be present for ourselves & one another.
Thursday, January 1, 2015
A Cup of Tea (Trakht Gut Vet Zein Gut)
My mom has a nurse who has been coming to see her here at home for about the past 5 years. I like her very much, but she has one habit that has bothered me. Many health care professionals feel the need to force the patient & family to "face reality". It's gotten to the point with this one nurse that I irritate her by interrupting her little speeches. She tried again the other day. She wanted to talk to me alone before we went in my mom's room. I thought "uh oh". We sat down, she leaned forward, looked me in the eye & said "Pam, you know your mother is a very old woman...". I waited for her to take a short pause before I interrupted her again & said "Just because I don't want to talk about it doesn't mean I don't know it". I went on to use about 3 metaphors such as "I may appear to have my head in the sand but I don't. I just don't want to talk about it"..I think she finally understood!!!! We shook hands. My mom hasn't been out of the house for 2 1/2 years. The only place I want my mom to go is to the emergency room if an emergency happens. We are not going to go to any specialist's offices. S/he would just want to order a bunch of tests which would mean more trips out which would drive my mom crazy & wear her out. The nurse practitioner & RN will continue to see my mom here at home & try to manage her care & medications. We are lucky that there is a lab that comes to the house so that my mom's blood can be tested every few weeks to see if her medications or diet need to be adjusted. In other words, just because my mom is a "very old woman" does not mean we don't want vigilant care. Infections will get treated, fluid imbalances will be addressed & things that can be fixed or improved will be. This nurse wasn't suggesting we ignore my mom, but the message I was getting from her was that she thought I was living in "la la land". (Even if I wasn't facing "reality" I still don't understand this need from medical professionals to beat you over the head with it). I believe in the old Yiddish expression "Think good & it will be good" "Trakht gut vet zein gut". Our home will remain a place to talk about what is going right, what is good, what is optimistic. Words & attitudes affect one's surroundings.
The very day after the nurse visited, I went out for one of my doctor's appointments. My mom was home with our most excellent caregiver Charlotte. When I left it was cloudy & ready to drizzle. When I got home, it was 40 degrees F & pouring rain. Charlotte had a cup of tea waiting for me because my mom had ASKED her to make it as I would be cold when I came home. My mom had told her to be sure not to make black tea, because I'm not allowed to drink that. She is correct. I am not allowed to drink black tea. Pretty good for a "very old woman" !
The very day after the nurse visited, I went out for one of my doctor's appointments. My mom was home with our most excellent caregiver Charlotte. When I left it was cloudy & ready to drizzle. When I got home, it was 40 degrees F & pouring rain. Charlotte had a cup of tea waiting for me because my mom had ASKED her to make it as I would be cold when I came home. My mom had told her to be sure not to make black tea, because I'm not allowed to drink that. She is correct. I am not allowed to drink black tea. Pretty good for a "very old woman" !
Texting Etiquette
Not long ago I was invited, via text message, to an important event just 3 days away. I was offended! Maybe you wouldn't be, but I was. As readers will know, I need to arrange caregiving for my 88 year old mother whenever I am planning to be out of the house. I can not leave her alone. I stewed about this invitation for a while, trying to figure out if I could make arrangements on such short notice. I was also annoyed at being invited at the last moment & not even with a phone call, but with a text message. I thought how to respond to this invitation for a few hours. Apparently, this was not fast enough, because the person who had invited me telephoned to find out if I had received the text message! Why not call me in the first place? Why not call me a week ago? Maybe I should save this righteous indignation for more important things, but I am not the person who could do that. I did manage to make arrangements so that I could attend, but apparently it's still bugging me! Ha!
Again not long ago, I saw a post on Facebook that someone who was a friend of a friend had passed away the previous night. This of course was sad, but the problem was not all of the family had yet been notified! Subsequent comments indicated that some of his relatives found out about the death on Facebook. Tragic. I think if we hear of a death, we should keep our fingers off the keys & make a phone call, an old fashioned telephone call. I appreciate the irony that someone who is blogging details of her life would object to people sharing too much on Facebook, but this is my choice & my life.
I know a few people who don't like congratulations, happy birthdays, invitations, etc issued online. They want phone calls or greeting cards. Yes, I know a wonderful woman who has a full collection of greeting cards & sends them out for holidays & birthdays. They are a treat to receive. "Snail" mail has its positive side. It's fun to open the mail box & find something other than a bill or junk mail. It's touching that someone took the time to personally reach out to you. I am not that motivated to send out cards like my friend does, but she likes me anyway.
Again not long ago, I saw a post on Facebook that someone who was a friend of a friend had passed away the previous night. This of course was sad, but the problem was not all of the family had yet been notified! Subsequent comments indicated that some of his relatives found out about the death on Facebook. Tragic. I think if we hear of a death, we should keep our fingers off the keys & make a phone call, an old fashioned telephone call. I appreciate the irony that someone who is blogging details of her life would object to people sharing too much on Facebook, but this is my choice & my life.
I know a few people who don't like congratulations, happy birthdays, invitations, etc issued online. They want phone calls or greeting cards. Yes, I know a wonderful woman who has a full collection of greeting cards & sends them out for holidays & birthdays. They are a treat to receive. "Snail" mail has its positive side. It's fun to open the mail box & find something other than a bill or junk mail. It's touching that someone took the time to personally reach out to you. I am not that motivated to send out cards like my friend does, but she likes me anyway.
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