Mom
Today was bittersweet. Today I experienced a miracle. The miracle was given to one of the most deserving people I know, My mom.
Let's rewind to June 2016, My mom and I were on the phone, I was irritated because I knew she had scheduled to have a knee replacement surgery but she was not giving me any information about it. She has always been ridiculously private, I on the other hand have no filter and do not care what people know about me or think of me. In the gene pool I got most things from my mom, looks, extremely pale skin, hair, eye color but one thing I certainly did not inherit is my mother's personality. I am more outgoing, I seek socialization and share most of my everyday life openly. My very self reliant mom however, she wouldn't even tell her own daughter the date of her upcoming surgery.
I remember the conversation clearly and it haunts me:
ME: Mom, you are being ridiculous, what if something happens to you during surgery, NO ONE can even get into your house. How are you even going to get home? take care of yourself?
Mom: no I am fine, the doctor says I will go to rehab and be home and back to normal without any pain. I don't want you to come.
ME: God forbid someone make plans to help you out. Where will you go to rehab, when will you go home, My mother in law had this surgery a year ago and she said she still has pain a year later. Is this Dr. aware that you have a 3 story home? it sound too good to be true.
Finally, after several similar conversations and assuring her that I would be on vacation over the 4th of July for 10 days and would absolutely NOT be heading to the hospital to check on her, she finally admitted that she was having 3 joints replaced the first of which was scheduled for July 5th. The second for Aug. 22nd and the 3rd on October 11th. She kept telling me everything will be great and in December she would be good as new and how she couldn't wait to see her grand kids and visit us for Christmas...
Throughout all of this I had been talking at length to our neighbor "DDTS" who had taken her all of her appointments and was much more likely to tell me the truth. DDTS gave me a lot of reassurance that the surgeon was really good and kept me in the loop (much to my mom's chagrin) about how my mom was doing physically. I knew my mom was in bad shape but I had no idea what was ahead of us. She had hid it well, but looking back there were so many signs.
Let's rewind a bit further to what makes my mom my mom...
First, She was adopted. She had an open adoption. She knew her birth mother, Cleo. Cleo had attended high school with my grandparents and moved away to Ohio with most of her family, she returned at 26 had a secret baby, my grandmother was her nurse that day. My grandmother adopted my mom and to be honest SHE wasn't a great person, but that is another post. I did not know much about Cleo but one thing I did know was that Cleo had Alzheimer's disease.
When I graduated college I worked as a social worker for a non profit called the Alzheimer's project. I had always been curious about Cleo, so I paid her a visit in a nursing home in Akron in August 2008. She clearly was in advanced stages of dementia, but she looked at me and said "I am glad you finally came" as if she thought I was my mother. This was one of the best trips I have ever taken in my life. I saw someone else with my eye color, someone with my mom's soft skin, apart from my mom no one has ever really looked like me.
Part of my job was to monitor obituaries of our clients names, I added Cleo to my list. She had had dementia nearly a decade and she died in December 17, 2008 just 4 months after my visit. I, the curious and boisterous one, used her obituary to expose her 55 year old secret, I called her family. That too in an entirely different post, so why am I telling you this, because one thing most adoptees are missing (even in an open adoption) is your family medical history. What I learned was that not only had Cleo had dementia but several of her siblings and both her mother and father had also had dementia. Eight to 10 people with my genes all had the same disease.
Insert my new biggest fear, my mom is probably going to get dementia. EVERYDAY for the last 3 years of my life I had a front row seat to this devastating disease. I knew how hard it was on caregivers. It is impossible to describe, but this disease is vicious, and now it was going most likely going to take away my mom. How do you prepare for that?
My mom has been dealt a fairly shitty hand in life. She was abused as a child and her parents told her she was a liar. She went to college, worked got married, had three daughters and stayed home with us nearly 15 years. After 20 years of marriage my parents divorced, I was 9. I don't really ever remember a time when they liked each other, most of my younger memories are of them fighting so loudly the neighbors often called the police. So, at 40 years old, she sent my oldest sister to college and back to the work force she went. She went on to become one of the strongest and most independent people I know. She adapted, managed her new life as raising us as a newly single newly working mom. Our house was old, she learned to fix things, the grass needed mowed, the snow needed shoveled, my mom did it all, and the house stayed (ridiculously) clean (another gene that missed me) and meals stayed on the table. She never missed a beat, looking back she had to have felt like life was a disaster but she persevered. I appreciate this more now that I am a mom, I am sure I wouldn't survive in the same circumstances.
Back to the part where my mom and I differ in personality; we butted heads a lot and still do, but I appreciate all she has done for me and taught me. Eight years later, I went off to college, she stayed in that house continued working in the manufacturing industry which was anything but stable until she was laid off from her last job in 2015. Her arthritis had gotten so bad she wasn't able to get around well, she had put off getting joints replaced because she couldn't really afford to take off work. She had had periods of unemployment in the past but this time was different, she was very depressed. She had no insurance and no income so she applied for medical assistance, through that she also qualified for disability but was forced to take her social security income early at prorated rate. This was not in her very private but I am sure very calculated plan for retirement. But at least she had no excuse to put off the joint replacement surgeries she needed any longer. She saw her doctors and she planned her surgeries. Of course she didn't ask for any help and as usual she barely told me (or my sisters) anything about any of it. Hence the conversation above.
July 6th, is the day my worst fears were realized. My mom woke up from knee surgery and didn't know where she was. The doctor I spoke with told me she had had a period of "A Fib" while being prepped for the surgery but otherwise everything had gone as scheduled. From my past work, I knew general anesthesia could exacerbate underlying conditions and I can't say I hadn't noticed that mom had had a few periods of confusion that I had noticed randomly before. We talked nearly every day but nothing ever really sent up red flags. Maybe I was in denial but I trusted that she could take care of herself as she always did. I believed that after she finally had these surgeries she would be better. Come to find out, the lady, who barely wanted us to know she was having surgery, had a LOT more we should have been concerned about than arthritis. All those months she spent waiting for surgery, I am fairly certain she had never left her bed. She could barely walk and she lost nearly all of her muscle mass because she couldn't even make it down stairs to the kitchen let alone out to the store to get groceries.
Now I am on the phone with a social worker telling me that I needed to come get my mom NOW because she couldn't go home alone. Her orthopedic surgeon didn't want to send her to an inpatient rehab facility for various reasons, mostly because he didn't recommend it because of the risk of infection. The hospital couldn't keep her because well they weren't getting paid by medicaid, the approval was for an orthopedic surgery (typically a one night stay). They didn't know her baseline cognitive state and they certainly didn't care what she THOUGHT she had been told by the surgeon about rehab before.
I bought myself enough time to get home from our vacation in Tennessee, wash my clothes and turn around and take the kids to go get her from the hospital.
The week I spent caring for her at her house was HELL, she was so confused,and needed help with EVERYTHING. I wasn't even invited to her surgery a week before and now I was literally figuring out how to get a fresh surgically cut knee into a 38 inch high jacuzzi tub. Did I mention my mom was private, well there went that!
She was demanding my attention every half second and I was attempting to take care of my two preschoolers who were so off their routine after nearly 3 weeks of being away from home. All in a house that hadn't been cleaned in months and is in NO way child proof or even child friendly. Three nights of being up all night unplugging her inflatable leg cuffs and helping her walk to the bathroom every 20 minutes then putting her back in bed just to have my phone ring again (waking up my kids every time) because she needed her pillow shifted under her knee was all it took for me to break and beg my husband to save me. He had just returned to work after a two week vacation, but thank God his territory ends about a hour and a half from my mom's house so he worked there and drove up to at least help in the evenings. We survived a week like that. The hardest week of my life. I handed the reigns over to my 88 year old grandmother.
My mom's confusion calmed down a bit gradually, she was still inappropriately demanding to be attended to every second but she wasn't seeing things in her sleep anymore. All of which was VERY unlike her but we chalked it all up to the fact that she didn't handle pain medication well. She slowly was getting better and had in-home therapy, but she fired them because she didn't want to work. August came and my great Aunt took over care. She still wasn't herself exactly but she made it to the 22nd and had her hip replaced. My Aunt moved my mom into her house afterwards, I spoke with everyone daily, doctors, out patient rehab etc. I was able to advocate for her and ask questions from home.
In September, we went to Disney world for Andy's 5th birthday. I see a theme developing here, I shouldn't go on vacation...
Mom had had a fall and spent a few nights in the hospital about a week before. She wasn't doing as well cognitively when she went back to my Great Aunt's house. Her Orthopedic surgeon postponed her 3rd surgery indefinitely which really through mom for a loop. The week we were gone I couldn't stay in constant contact as I had been and she was very anxious and it seemed as if she had just given up on her progress. She refused to walk she wanted to stay in bed all day and be served.
I remember being alarmed when she called and left me several messages saying she needed to talk to my oldest sister. Tracy was at Disney with us, mom had also called and her husband about 15 times. Thinking it must be an emergency I called her back from Magic Kingdom. The "emergency" was she needed to know the check number to a check she had sent my sister from my grandmothers account, because you know everyone has that on them at Disney world. That day I realized mom's ability to reason was gone, did I mention she was still managing her own and my grandmother's finances? Well that ended shortly thereafter, as did her stay with my great aunt.
Once we got back from vacation, I, again, loaded Chelsea up and headed to Meadville to see if I could help smooth things over with my very irritate great Aunt. She believed that my mom was perhaps faking her new "fear" of falling and just not doing anything for herself just to be difficult. I knew mom had over stayed her welcome there but I was about 15 minutes too late in implementing her new plan of care. When I returned home Monday my plan was to call her PCP who I had spoken to frequently (She had given me cell number by this point) since her hospitalization and move forward with the plan to try inpatient rehab. That plan got held up on the technicality that you really can't be directly admitted to a rehab without a hospital stay, and her PCP, a nurse practitioner, had to get her physician to sign off on admitting her. Well, my mom called me at 9 am Tuesday, as I was on the phone asking why no one had called me back on Monday regarding this issue. the NP told me just to have her sent to the ER for change in mental status/ failure to thrive and that the Dr. was going to handle it from there. When I called my mom back my great-aunt answered and told me that my mother had called the police on her claiming that she was being held against her will. Well that was a fun situation to diffuse from 300 miles away, but the police never even showed up. It all ended extremely nasty and we no longer speak to my grandmother or any of her sisters because of their behaviors following this event. It sure was nice to tell my grandmother, whom I have never liked, what I really thought about her though!
This was early October, for the next 4 months my mom stayed in inpatient rehab receiving inpatient PT, OT and ST daily. Physically she was doing ok, She never really improved walking, but she gained some weight and muscle back. I was of course a pain in the ass to anyone who worked with her. I ended my career as a social worker in a nursing home/skilled rehab, I knew how it worked. I was my mom's advocated, even though I knew it was next to impossible to get anything done in a rehab, everyone in the place knew my voice. I regularly spoke to the "psychiatrist" and anyone else who was involved in her care. I wanted answers, WHAT happened to my my mom. People don't just forget to walk, they don't have a 180 degree change in personality without a cause. Change her meds, do more tests, tell me something. Her "dementia" did not have a typical presentation it came and went and was unlike any variation I had ever seen. One day about 3 months in, a random nurse who picked up the phone gave me my first clue, She read me her diagnosis list. One I had never heard before, and it stood out, Cerebral Vascular Disease with no evidence of stroke. OK so there is something, some evidence that on CT scans or MRI's someone had noticed shrinking in her brain. That nurse said she would see where the diagnosis came from, she would get me more info, she would have the dr. call me. She never did. I called the doctors office but he didn't discuss his nursing home/rehab patients in that office because he didn't have the records, BULL. I called the director of nursing at the rehab several times with no response, I requested every medical record she had but I may as well had been banging my head against a wall. I never got answers, the only thing I did get was that they attempted to schedule another MRI but the insurance denied that. Mom wasn't progressing, it was time for discharge.
It was pretty clear to me that she wasn't going to be able to go home alone, but my mom had no self awareness, she didn't understand that. Both of my sisters saw her in the rehab, they listened to my "reports" and knew mom needed help. Crystal went to her "home" evaluation. We all made a plan, I was going to take mom to my house when she discharged and then we are all going to take turns having her visit until we could figure this all out. The problem with that plan is that Mom's Medicaid is a state run program, she can only get medical care from providers in Pennsylvania. I spent a lot of time on the phone figuring out what to do about that. I spoke with her case manager who in no certain terms told me, if you tell me she is going out of the state for an extended period of time I am required to disqualify her from the program. Well shit. I told her to forget I said that and said she could not afford to lose her medical insurance at this point. I learned a lot about medicaid and medicare and the difference between each states program. We had a lot of things to decide and a mom who was not reasonable, she was barely agreeing to come visit us and she was certainly not on board with our decision to put her house on the market. I went ahead and got her an appointment with her Primary care for the Friday I was picking her up.
Mom was very paranoid, she was afraid we were all going to take all of her things from her and sell her house out from under her. She insisted she needed a week in the house to sort through her things, I agreed to Friday, Saturday Sunday so I didn't have to bring my kids to a house again. Brett, my kind wonderful and supportive husband had rented a uhaul and went up the night before I did. He loaded her entire bedroom suite, her favorite recliner and side table and tv and drove it 6 hours to our house, then worked the next day and spent the entire night taking care of the kids after he put them to bed he moved all my craft room (that's a lot of crap) upstairs and set her up her own bedroom in the basement.
The Wednesday before this lovely trip to pick my disgruntle confused mom, I fell down the stairs spraining my ankle (which STILL hurts 2.5 months later) SERIOUSLY, can anything go right? Brett was supposed to go get a hotel in Pittsburgh so he could get up to work in the morning then go pack up her things and drive back to Baltimore. Instead he had to spend the night at urgent care with me and get up extra early to fit all of the driving in to one day. I had to schedule a babysitter to cover the 3 hours between when I had to leave to head to PA and when Brett would arrive back.
Friday morning I hobble may way through her PCP appointment. The NP increased her depression medication and refers us to a get a barrage of psychoneuro testing done. The testing was scheduled for April when we would be back in PA.
We left on Sunday to go back to Baltimore, after she had gone through exactly 0 things she insisted she needed to while at her house. I ran into a problem when filling her prescription in PA, apparently when she was in the rehab they changed her medical assistance as if she was there for the rest of her life. Well you can't see your pcp or fill your prescriptions until her (also useless) case worker filed the paperwork to switch it again. The nursing home gave me 10 of her old pills at discharge, and you better believe that it took me calling the case worker and her boss EVERY SINGLE one of those days before that dang change happened. I made them get special approval so I could have it filled it IN Maryland because they were incompetent.
Well guess what, as soon as she started the higher dose, she got worse, mentally and physically. She never wanted to get out of bed now, she never wanted to eat, do her exercises nothing. It was like having another child and really depressing to watch. The ONE time she did go out with me to take the kids to the school was a disaster. Seriously, what had happened to my mom?
By this point, I am seriously depressed at not knowing what had happened to her but also resigning myself to the fact that dementia doesn't get better, and knew she will only get worse. I took a picture of her one day because her cheek was red, from a rash, It shocked me to see that picture on my phone screen, She looked like a skeleton. That night, I cried myself to sleep I realized that my mom was going to die from this. Every time I looked at her or even thought about her I was fighting back tears. This wasn't my mom, I hadn't had MY mom since that conversation back in June when she wasn't telling me when her surgery was. WHERE did my fighter go? What made her give up? I was as hopeless.
Tracy, Crystal and I had all planned to go back to my mom's house for spring break April 10 - 17th, because there was a lot to be done before putting it on the market. I was able to schedule all the neuropysch testing for that week, a follow up with her pcp (who had taken a new job but scheduled us for her last day) and to get mom's taxes done that week.
Remember that plan about splitting time with mom at all of our houses? After the week at mom's house it made sense to have Tracy Drive mom back to her house in Florida because she was so far away rather than having her fly alone. But Crystal and I live about 5 hours apart. Well a few weeks went by at my house and Crystal never offered up a plan to take her turn so I finally I asked her turn because my sister in law was going to be visiting, but her answer was radio silence. Literally, we were talking on the phone and she gave zero response, awkward but loud and clear that she didn't intend to help. Eventually, enough resentment built up in me that I recruited my oldest sister tell her she had to do it. And begrudgingly She she agreed to two weeks. I had to drive 5 hours round trip to Allentown to make the exchange on two Sundays but we got 2 weeks of respite in the 8 weeks between leaving the rehab and going back to her house.
The day after she got back to my house my mom accused me of stealing from her. I was so hurt and offended, I had done so much for her in the past 9 months, and that is what she thinks of me. I spent the next two week mad, I barely spoke to her. The practical side of me knew it was the disease, I had seen it a million times at work. BUT I was pissed at the disease, whatever it was. I resented how my sisters had the easy end of this deal just because they had jobs outside of their home. I was pissed because while I couldn't bring it to words but I just knew my kids would never get a chance to know the mom I grew up with. They already don't know who my dad is, and he is very much alive but just he doesn't care. Why her, why won't they get to know the woman who raised me, the one who cared, the one who made me who I am? She loves them. Why is all that she has had in this life crap? It isn't fair. All of it manifested into resentment toward anything I had to do for my mom.
So then the week of work at her house, goal was to put the house on the market. Mom couldn't go back to it even is she had a miraculous recovery and it is sitting empty while she is wasting her money paying bills there. But there was years of neglected maintenance to catch up with.
As scheduled we saw her PCP, got the taxes done and worked. I arranged to meet two realtors Thursday, The first was pitiful and the second cancelled and rescheduled for the next day. The next stop on our agenda that day was the Neurologist, where we would hopefully get some sort of insight into what was going on with Mom.
The week was quickly coming to an end and I felt like we had gotten NOWHERE I wanted to scream and cry but trudge along I did. As I was getting ready to leave for the appointment I notice my mom was literally laying down on the cement steps. I was backing the truck up, I didn't see what happened, one minute my sister is helping her down to the car and the next she's on the ground. I literally scream for my husband who is up a ladder scraping paint or something, but my sister screams back that she didn't fall but rather gently lowered herself to the ground because she couldn't hold her up when she lost her balance. Everyone hearing the commotion has come to see what is going on, and mom acts like it is no big deal, I was fairly certain I just had a heart attack.
I wanted someone to go with us, it was so stressful being with mom alone, but everyone was busy working to finish up so off we went.
We get to the desk after an agonizingly slow walk to the 3rd floor office. Did I mention she is afraid of falling, and she shuffles, and she takes about 13-60 seconds to find motivation to take a single step. I ask her to sit down and go to the desk to check in. The receptionist said, you don't have an appointment today, didn't you get my messages. I am fairly certain I was breathing fire when I responded. "No, no I did not get any messages, YOU certainly never called me OR her... I have MADE it abundantly clear that everyone is supposed to call ME so who did YOU call?" She rambles off a number I don't recognize and my mom's home phone number that had been disconnected. I couldn't communicate at that point, in my head I was screaming ARE YOU FUCKING KIDDING ME, you just cancel an appointment that took 2 months to get? She kept saying something about the doctor wanting her to have the psychoneuro testing done before she sees her, UM HELLO, THAT IS WHAT WE ARE HERE TO DO! I had literally spoken to this woman twice on the phone, The first time to change the date of the appointment to when we were actually going to be in PA, I told her my mom's entire situation and explained that she staying out of town. The receptionist was the one who recommended changing from the initial male doctor to Dr. Warren because the male doctor was the type to "throw a pill at you and send you away" Then I called back to double check that they had the right records and ensure that they had my contact information if they needed anything else.
Back at the window she was still fumbling but figures out that the number she called was my great Aunt, OH LORD, I start spewing at that point, I am fairly certain I started crying and mentioning about how my Aunt was banned from getting any information about my mom when she got herself kicked out of their ER in October and HIPPA violations... and how we are only there for that week and I need answers blah blah blah... (The walls were closing in a bit on me....) when someone says "oooo there is a note that says ONLY CONTACT DAUGHTER... didn't we have a cancellation tomorrow morning." I stopped talking and notice the crowd of employees who had gathered to see who is making a scene at the front desk. Someone else steps in front of me and explains that the testing has to be done at some other facility and that someone at the PCP had mistakenly thought that they do it in the office but because she is medicaid she has to be seen at a "rural" facility. I am still just speechlessly crying, screaming in my head about how I don't really care, how she cannot be penalized just because Medcaid won't pay you enough to do it and we are leaving until she is seen. I may have looked a little crazy in the eyes because next the doctor stepped up to bat she looks at me, looks at my mom and says "come back at 10 am tomorrow, are those her medical records you are holding, I will read them tonight and see what I can do." I may have squeaked out a "thank you, do you realize how long it takes to get her here, she fell down" and we left. My mom is apologizing to me at that point I felt bad and really defeated.
The next morning I am up bright and early, wake my mom up, my oldest sister comes in and the three of us head off to find answers on GOOD Friday. Everything runs smoothly, I love this doctor, she spends more than an hour with my mom, testing, evaluating, reviewing her history. She asks for more tests, but tells us she has a hunch that it is a kind of Parkinsons like problem either multisystem Atrophy or SPS something or other. One the tests is a spinal tap. Dr. Warren offers to stay late and have us come back that afternoon to fit it in. That afternoon we go back. I stay with mom during the procedure and she mentions another possibility, kind of a long shot but if my mom walks better in the next few days after this spinal fluid has been drained, that we need to let her know because while it is rare there is a condition called Normal Pressure Hydrocephalus. It is often mistaken for dementia or parkinson's and your mom has 2 of the 3 indicators for it. It is treatable by taking the excess spinal fluid off the brain which it relieves the symptoms.. wait, WHAT, did you just say there was hope???
It could be pressure on her brain from excess fluid causing all this shit? not the death sentence?
Well I may just love Dr. Warren now! but I am not holding my breath. I am really trying not think of how amazing that would be, that a shunt could fix all of this. I get on google that night, researching all three. NPH is my mom, everything I read is exactly her. like EXACTLY. and the next day when I ask how mom had been in the morning, they tell me she is walking better! I could seriously jump up and down... This is really it, I watched her walk without a walker from the shower to her bedroom that afternoon. at a somewhat normal pace. ok now I am about to sign her up for the neuro surgery but I don't even know if it is really true. or all in her head, willing it to be true because I had told her all about it. I am still skeptical. I have to remain skeptical through fighting with my sisters as they try to get me to stay with mom to take her to the MRI and EEG that were scheduled as soon as possible but can't be done until Tuesday. I legitimately can not stay as I have surgery the following week. Tracy takes more time off and Mom ends up going to Florida after the test and we all wait to hear what the results are. The doctor was on vacation the entire next week so we didn't expect to hear anything until she returned. The office did call that Monday, but the only results they had were that she needed B12 shots. I passed along the exciting message about her days following the spinal tap. The nurse said they would pass on the info. Tuesday, Wednesday and Thursday we talked every day but mostly it was them asking for her to schedule a follow up (on May 25th) me saying that was too far out and asking for a video conference, them agreeing to a call but the doctor would have to call me etc. etc. It took until Thursday to get an absolute answer, Dr. Warren's nurse said my mom has Normal Pressure Hydrocephalus and would be referred to a NeuroSurgeon to have a shunt placed!!!!! That my friends is the best news ever, truly a MIRACLE!!!!
Let's rewind to June 2016, My mom and I were on the phone, I was irritated because I knew she had scheduled to have a knee replacement surgery but she was not giving me any information about it. She has always been ridiculously private, I on the other hand have no filter and do not care what people know about me or think of me. In the gene pool I got most things from my mom, looks, extremely pale skin, hair, eye color but one thing I certainly did not inherit is my mother's personality. I am more outgoing, I seek socialization and share most of my everyday life openly. My very self reliant mom however, she wouldn't even tell her own daughter the date of her upcoming surgery.
I remember the conversation clearly and it haunts me:
ME: Mom, you are being ridiculous, what if something happens to you during surgery, NO ONE can even get into your house. How are you even going to get home? take care of yourself?
Mom: no I am fine, the doctor says I will go to rehab and be home and back to normal without any pain. I don't want you to come.
ME: God forbid someone make plans to help you out. Where will you go to rehab, when will you go home, My mother in law had this surgery a year ago and she said she still has pain a year later. Is this Dr. aware that you have a 3 story home? it sound too good to be true.
Finally, after several similar conversations and assuring her that I would be on vacation over the 4th of July for 10 days and would absolutely NOT be heading to the hospital to check on her, she finally admitted that she was having 3 joints replaced the first of which was scheduled for July 5th. The second for Aug. 22nd and the 3rd on October 11th. She kept telling me everything will be great and in December she would be good as new and how she couldn't wait to see her grand kids and visit us for Christmas...
Throughout all of this I had been talking at length to our neighbor "DDTS" who had taken her all of her appointments and was much more likely to tell me the truth. DDTS gave me a lot of reassurance that the surgeon was really good and kept me in the loop (much to my mom's chagrin) about how my mom was doing physically. I knew my mom was in bad shape but I had no idea what was ahead of us. She had hid it well, but looking back there were so many signs.
Let's rewind a bit further to what makes my mom my mom...
First, She was adopted. She had an open adoption. She knew her birth mother, Cleo. Cleo had attended high school with my grandparents and moved away to Ohio with most of her family, she returned at 26 had a secret baby, my grandmother was her nurse that day. My grandmother adopted my mom and to be honest SHE wasn't a great person, but that is another post. I did not know much about Cleo but one thing I did know was that Cleo had Alzheimer's disease.
When I graduated college I worked as a social worker for a non profit called the Alzheimer's project. I had always been curious about Cleo, so I paid her a visit in a nursing home in Akron in August 2008. She clearly was in advanced stages of dementia, but she looked at me and said "I am glad you finally came" as if she thought I was my mother. This was one of the best trips I have ever taken in my life. I saw someone else with my eye color, someone with my mom's soft skin, apart from my mom no one has ever really looked like me.
Part of my job was to monitor obituaries of our clients names, I added Cleo to my list. She had had dementia nearly a decade and she died in December 17, 2008 just 4 months after my visit. I, the curious and boisterous one, used her obituary to expose her 55 year old secret, I called her family. That too in an entirely different post, so why am I telling you this, because one thing most adoptees are missing (even in an open adoption) is your family medical history. What I learned was that not only had Cleo had dementia but several of her siblings and both her mother and father had also had dementia. Eight to 10 people with my genes all had the same disease.
Insert my new biggest fear, my mom is probably going to get dementia. EVERYDAY for the last 3 years of my life I had a front row seat to this devastating disease. I knew how hard it was on caregivers. It is impossible to describe, but this disease is vicious, and now it was going most likely going to take away my mom. How do you prepare for that?
My mom has been dealt a fairly shitty hand in life. She was abused as a child and her parents told her she was a liar. She went to college, worked got married, had three daughters and stayed home with us nearly 15 years. After 20 years of marriage my parents divorced, I was 9. I don't really ever remember a time when they liked each other, most of my younger memories are of them fighting so loudly the neighbors often called the police. So, at 40 years old, she sent my oldest sister to college and back to the work force she went. She went on to become one of the strongest and most independent people I know. She adapted, managed her new life as raising us as a newly single newly working mom. Our house was old, she learned to fix things, the grass needed mowed, the snow needed shoveled, my mom did it all, and the house stayed (ridiculously) clean (another gene that missed me) and meals stayed on the table. She never missed a beat, looking back she had to have felt like life was a disaster but she persevered. I appreciate this more now that I am a mom, I am sure I wouldn't survive in the same circumstances.
Back to the part where my mom and I differ in personality; we butted heads a lot and still do, but I appreciate all she has done for me and taught me. Eight years later, I went off to college, she stayed in that house continued working in the manufacturing industry which was anything but stable until she was laid off from her last job in 2015. Her arthritis had gotten so bad she wasn't able to get around well, she had put off getting joints replaced because she couldn't really afford to take off work. She had had periods of unemployment in the past but this time was different, she was very depressed. She had no insurance and no income so she applied for medical assistance, through that she also qualified for disability but was forced to take her social security income early at prorated rate. This was not in her very private but I am sure very calculated plan for retirement. But at least she had no excuse to put off the joint replacement surgeries she needed any longer. She saw her doctors and she planned her surgeries. Of course she didn't ask for any help and as usual she barely told me (or my sisters) anything about any of it. Hence the conversation above.
July 6th, is the day my worst fears were realized. My mom woke up from knee surgery and didn't know where she was. The doctor I spoke with told me she had had a period of "A Fib" while being prepped for the surgery but otherwise everything had gone as scheduled. From my past work, I knew general anesthesia could exacerbate underlying conditions and I can't say I hadn't noticed that mom had had a few periods of confusion that I had noticed randomly before. We talked nearly every day but nothing ever really sent up red flags. Maybe I was in denial but I trusted that she could take care of herself as she always did. I believed that after she finally had these surgeries she would be better. Come to find out, the lady, who barely wanted us to know she was having surgery, had a LOT more we should have been concerned about than arthritis. All those months she spent waiting for surgery, I am fairly certain she had never left her bed. She could barely walk and she lost nearly all of her muscle mass because she couldn't even make it down stairs to the kitchen let alone out to the store to get groceries.
Now I am on the phone with a social worker telling me that I needed to come get my mom NOW because she couldn't go home alone. Her orthopedic surgeon didn't want to send her to an inpatient rehab facility for various reasons, mostly because he didn't recommend it because of the risk of infection. The hospital couldn't keep her because well they weren't getting paid by medicaid, the approval was for an orthopedic surgery (typically a one night stay). They didn't know her baseline cognitive state and they certainly didn't care what she THOUGHT she had been told by the surgeon about rehab before.
I bought myself enough time to get home from our vacation in Tennessee, wash my clothes and turn around and take the kids to go get her from the hospital.
The week I spent caring for her at her house was HELL, she was so confused,and needed help with EVERYTHING. I wasn't even invited to her surgery a week before and now I was literally figuring out how to get a fresh surgically cut knee into a 38 inch high jacuzzi tub. Did I mention my mom was private, well there went that!
She was demanding my attention every half second and I was attempting to take care of my two preschoolers who were so off their routine after nearly 3 weeks of being away from home. All in a house that hadn't been cleaned in months and is in NO way child proof or even child friendly. Three nights of being up all night unplugging her inflatable leg cuffs and helping her walk to the bathroom every 20 minutes then putting her back in bed just to have my phone ring again (waking up my kids every time) because she needed her pillow shifted under her knee was all it took for me to break and beg my husband to save me. He had just returned to work after a two week vacation, but thank God his territory ends about a hour and a half from my mom's house so he worked there and drove up to at least help in the evenings. We survived a week like that. The hardest week of my life. I handed the reigns over to my 88 year old grandmother.
My mom's confusion calmed down a bit gradually, she was still inappropriately demanding to be attended to every second but she wasn't seeing things in her sleep anymore. All of which was VERY unlike her but we chalked it all up to the fact that she didn't handle pain medication well. She slowly was getting better and had in-home therapy, but she fired them because she didn't want to work. August came and my great Aunt took over care. She still wasn't herself exactly but she made it to the 22nd and had her hip replaced. My Aunt moved my mom into her house afterwards, I spoke with everyone daily, doctors, out patient rehab etc. I was able to advocate for her and ask questions from home.
In September, we went to Disney world for Andy's 5th birthday. I see a theme developing here, I shouldn't go on vacation...
Mom had had a fall and spent a few nights in the hospital about a week before. She wasn't doing as well cognitively when she went back to my Great Aunt's house. Her Orthopedic surgeon postponed her 3rd surgery indefinitely which really through mom for a loop. The week we were gone I couldn't stay in constant contact as I had been and she was very anxious and it seemed as if she had just given up on her progress. She refused to walk she wanted to stay in bed all day and be served.
I remember being alarmed when she called and left me several messages saying she needed to talk to my oldest sister. Tracy was at Disney with us, mom had also called and her husband about 15 times. Thinking it must be an emergency I called her back from Magic Kingdom. The "emergency" was she needed to know the check number to a check she had sent my sister from my grandmothers account, because you know everyone has that on them at Disney world. That day I realized mom's ability to reason was gone, did I mention she was still managing her own and my grandmother's finances? Well that ended shortly thereafter, as did her stay with my great aunt.
Once we got back from vacation, I, again, loaded Chelsea up and headed to Meadville to see if I could help smooth things over with my very irritate great Aunt. She believed that my mom was perhaps faking her new "fear" of falling and just not doing anything for herself just to be difficult. I knew mom had over stayed her welcome there but I was about 15 minutes too late in implementing her new plan of care. When I returned home Monday my plan was to call her PCP who I had spoken to frequently (She had given me cell number by this point) since her hospitalization and move forward with the plan to try inpatient rehab. That plan got held up on the technicality that you really can't be directly admitted to a rehab without a hospital stay, and her PCP, a nurse practitioner, had to get her physician to sign off on admitting her. Well, my mom called me at 9 am Tuesday, as I was on the phone asking why no one had called me back on Monday regarding this issue. the NP told me just to have her sent to the ER for change in mental status/ failure to thrive and that the Dr. was going to handle it from there. When I called my mom back my great-aunt answered and told me that my mother had called the police on her claiming that she was being held against her will. Well that was a fun situation to diffuse from 300 miles away, but the police never even showed up. It all ended extremely nasty and we no longer speak to my grandmother or any of her sisters because of their behaviors following this event. It sure was nice to tell my grandmother, whom I have never liked, what I really thought about her though!
This was early October, for the next 4 months my mom stayed in inpatient rehab receiving inpatient PT, OT and ST daily. Physically she was doing ok, She never really improved walking, but she gained some weight and muscle back. I was of course a pain in the ass to anyone who worked with her. I ended my career as a social worker in a nursing home/skilled rehab, I knew how it worked. I was my mom's advocated, even though I knew it was next to impossible to get anything done in a rehab, everyone in the place knew my voice. I regularly spoke to the "psychiatrist" and anyone else who was involved in her care. I wanted answers, WHAT happened to my my mom. People don't just forget to walk, they don't have a 180 degree change in personality without a cause. Change her meds, do more tests, tell me something. Her "dementia" did not have a typical presentation it came and went and was unlike any variation I had ever seen. One day about 3 months in, a random nurse who picked up the phone gave me my first clue, She read me her diagnosis list. One I had never heard before, and it stood out, Cerebral Vascular Disease with no evidence of stroke. OK so there is something, some evidence that on CT scans or MRI's someone had noticed shrinking in her brain. That nurse said she would see where the diagnosis came from, she would get me more info, she would have the dr. call me. She never did. I called the doctors office but he didn't discuss his nursing home/rehab patients in that office because he didn't have the records, BULL. I called the director of nursing at the rehab several times with no response, I requested every medical record she had but I may as well had been banging my head against a wall. I never got answers, the only thing I did get was that they attempted to schedule another MRI but the insurance denied that. Mom wasn't progressing, it was time for discharge.
It was pretty clear to me that she wasn't going to be able to go home alone, but my mom had no self awareness, she didn't understand that. Both of my sisters saw her in the rehab, they listened to my "reports" and knew mom needed help. Crystal went to her "home" evaluation. We all made a plan, I was going to take mom to my house when she discharged and then we are all going to take turns having her visit until we could figure this all out. The problem with that plan is that Mom's Medicaid is a state run program, she can only get medical care from providers in Pennsylvania. I spent a lot of time on the phone figuring out what to do about that. I spoke with her case manager who in no certain terms told me, if you tell me she is going out of the state for an extended period of time I am required to disqualify her from the program. Well shit. I told her to forget I said that and said she could not afford to lose her medical insurance at this point. I learned a lot about medicaid and medicare and the difference between each states program. We had a lot of things to decide and a mom who was not reasonable, she was barely agreeing to come visit us and she was certainly not on board with our decision to put her house on the market. I went ahead and got her an appointment with her Primary care for the Friday I was picking her up.
Mom was very paranoid, she was afraid we were all going to take all of her things from her and sell her house out from under her. She insisted she needed a week in the house to sort through her things, I agreed to Friday, Saturday Sunday so I didn't have to bring my kids to a house again. Brett, my kind wonderful and supportive husband had rented a uhaul and went up the night before I did. He loaded her entire bedroom suite, her favorite recliner and side table and tv and drove it 6 hours to our house, then worked the next day and spent the entire night taking care of the kids after he put them to bed he moved all my craft room (that's a lot of crap) upstairs and set her up her own bedroom in the basement.
The Wednesday before this lovely trip to pick my disgruntle confused mom, I fell down the stairs spraining my ankle (which STILL hurts 2.5 months later) SERIOUSLY, can anything go right? Brett was supposed to go get a hotel in Pittsburgh so he could get up to work in the morning then go pack up her things and drive back to Baltimore. Instead he had to spend the night at urgent care with me and get up extra early to fit all of the driving in to one day. I had to schedule a babysitter to cover the 3 hours between when I had to leave to head to PA and when Brett would arrive back.
Friday morning I hobble may way through her PCP appointment. The NP increased her depression medication and refers us to a get a barrage of psychoneuro testing done. The testing was scheduled for April when we would be back in PA.
We left on Sunday to go back to Baltimore, after she had gone through exactly 0 things she insisted she needed to while at her house. I ran into a problem when filling her prescription in PA, apparently when she was in the rehab they changed her medical assistance as if she was there for the rest of her life. Well you can't see your pcp or fill your prescriptions until her (also useless) case worker filed the paperwork to switch it again. The nursing home gave me 10 of her old pills at discharge, and you better believe that it took me calling the case worker and her boss EVERY SINGLE one of those days before that dang change happened. I made them get special approval so I could have it filled it IN Maryland because they were incompetent.
Well guess what, as soon as she started the higher dose, she got worse, mentally and physically. She never wanted to get out of bed now, she never wanted to eat, do her exercises nothing. It was like having another child and really depressing to watch. The ONE time she did go out with me to take the kids to the school was a disaster. Seriously, what had happened to my mom?
By this point, I am seriously depressed at not knowing what had happened to her but also resigning myself to the fact that dementia doesn't get better, and knew she will only get worse. I took a picture of her one day because her cheek was red, from a rash, It shocked me to see that picture on my phone screen, She looked like a skeleton. That night, I cried myself to sleep I realized that my mom was going to die from this. Every time I looked at her or even thought about her I was fighting back tears. This wasn't my mom, I hadn't had MY mom since that conversation back in June when she wasn't telling me when her surgery was. WHERE did my fighter go? What made her give up? I was as hopeless.
That picture in March 2017
Mom before all of this in 2014
Tracy, Crystal and I had all planned to go back to my mom's house for spring break April 10 - 17th, because there was a lot to be done before putting it on the market. I was able to schedule all the neuropysch testing for that week, a follow up with her pcp (who had taken a new job but scheduled us for her last day) and to get mom's taxes done that week.
Remember that plan about splitting time with mom at all of our houses? After the week at mom's house it made sense to have Tracy Drive mom back to her house in Florida because she was so far away rather than having her fly alone. But Crystal and I live about 5 hours apart. Well a few weeks went by at my house and Crystal never offered up a plan to take her turn so I finally I asked her turn because my sister in law was going to be visiting, but her answer was radio silence. Literally, we were talking on the phone and she gave zero response, awkward but loud and clear that she didn't intend to help. Eventually, enough resentment built up in me that I recruited my oldest sister tell her she had to do it. And begrudgingly She she agreed to two weeks. I had to drive 5 hours round trip to Allentown to make the exchange on two Sundays but we got 2 weeks of respite in the 8 weeks between leaving the rehab and going back to her house.
The day after she got back to my house my mom accused me of stealing from her. I was so hurt and offended, I had done so much for her in the past 9 months, and that is what she thinks of me. I spent the next two week mad, I barely spoke to her. The practical side of me knew it was the disease, I had seen it a million times at work. BUT I was pissed at the disease, whatever it was. I resented how my sisters had the easy end of this deal just because they had jobs outside of their home. I was pissed because while I couldn't bring it to words but I just knew my kids would never get a chance to know the mom I grew up with. They already don't know who my dad is, and he is very much alive but just he doesn't care. Why her, why won't they get to know the woman who raised me, the one who cared, the one who made me who I am? She loves them. Why is all that she has had in this life crap? It isn't fair. All of it manifested into resentment toward anything I had to do for my mom.
So then the week of work at her house, goal was to put the house on the market. Mom couldn't go back to it even is she had a miraculous recovery and it is sitting empty while she is wasting her money paying bills there. But there was years of neglected maintenance to catch up with.
As scheduled we saw her PCP, got the taxes done and worked. I arranged to meet two realtors Thursday, The first was pitiful and the second cancelled and rescheduled for the next day. The next stop on our agenda that day was the Neurologist, where we would hopefully get some sort of insight into what was going on with Mom.
The week was quickly coming to an end and I felt like we had gotten NOWHERE I wanted to scream and cry but trudge along I did. As I was getting ready to leave for the appointment I notice my mom was literally laying down on the cement steps. I was backing the truck up, I didn't see what happened, one minute my sister is helping her down to the car and the next she's on the ground. I literally scream for my husband who is up a ladder scraping paint or something, but my sister screams back that she didn't fall but rather gently lowered herself to the ground because she couldn't hold her up when she lost her balance. Everyone hearing the commotion has come to see what is going on, and mom acts like it is no big deal, I was fairly certain I just had a heart attack.
I wanted someone to go with us, it was so stressful being with mom alone, but everyone was busy working to finish up so off we went.
We get to the desk after an agonizingly slow walk to the 3rd floor office. Did I mention she is afraid of falling, and she shuffles, and she takes about 13-60 seconds to find motivation to take a single step. I ask her to sit down and go to the desk to check in. The receptionist said, you don't have an appointment today, didn't you get my messages. I am fairly certain I was breathing fire when I responded. "No, no I did not get any messages, YOU certainly never called me OR her... I have MADE it abundantly clear that everyone is supposed to call ME so who did YOU call?" She rambles off a number I don't recognize and my mom's home phone number that had been disconnected. I couldn't communicate at that point, in my head I was screaming ARE YOU FUCKING KIDDING ME, you just cancel an appointment that took 2 months to get? She kept saying something about the doctor wanting her to have the psychoneuro testing done before she sees her, UM HELLO, THAT IS WHAT WE ARE HERE TO DO! I had literally spoken to this woman twice on the phone, The first time to change the date of the appointment to when we were actually going to be in PA, I told her my mom's entire situation and explained that she staying out of town. The receptionist was the one who recommended changing from the initial male doctor to Dr. Warren because the male doctor was the type to "throw a pill at you and send you away" Then I called back to double check that they had the right records and ensure that they had my contact information if they needed anything else.
Back at the window she was still fumbling but figures out that the number she called was my great Aunt, OH LORD, I start spewing at that point, I am fairly certain I started crying and mentioning about how my Aunt was banned from getting any information about my mom when she got herself kicked out of their ER in October and HIPPA violations... and how we are only there for that week and I need answers blah blah blah... (The walls were closing in a bit on me....) when someone says "oooo there is a note that says ONLY CONTACT DAUGHTER... didn't we have a cancellation tomorrow morning." I stopped talking and notice the crowd of employees who had gathered to see who is making a scene at the front desk. Someone else steps in front of me and explains that the testing has to be done at some other facility and that someone at the PCP had mistakenly thought that they do it in the office but because she is medicaid she has to be seen at a "rural" facility. I am still just speechlessly crying, screaming in my head about how I don't really care, how she cannot be penalized just because Medcaid won't pay you enough to do it and we are leaving until she is seen. I may have looked a little crazy in the eyes because next the doctor stepped up to bat she looks at me, looks at my mom and says "come back at 10 am tomorrow, are those her medical records you are holding, I will read them tonight and see what I can do." I may have squeaked out a "thank you, do you realize how long it takes to get her here, she fell down" and we left. My mom is apologizing to me at that point I felt bad and really defeated.
The next morning I am up bright and early, wake my mom up, my oldest sister comes in and the three of us head off to find answers on GOOD Friday. Everything runs smoothly, I love this doctor, she spends more than an hour with my mom, testing, evaluating, reviewing her history. She asks for more tests, but tells us she has a hunch that it is a kind of Parkinsons like problem either multisystem Atrophy or SPS something or other. One the tests is a spinal tap. Dr. Warren offers to stay late and have us come back that afternoon to fit it in. That afternoon we go back. I stay with mom during the procedure and she mentions another possibility, kind of a long shot but if my mom walks better in the next few days after this spinal fluid has been drained, that we need to let her know because while it is rare there is a condition called Normal Pressure Hydrocephalus. It is often mistaken for dementia or parkinson's and your mom has 2 of the 3 indicators for it. It is treatable by taking the excess spinal fluid off the brain which it relieves the symptoms.. wait, WHAT, did you just say there was hope???
It could be pressure on her brain from excess fluid causing all this shit? not the death sentence?
Well I may just love Dr. Warren now! but I am not holding my breath. I am really trying not think of how amazing that would be, that a shunt could fix all of this. I get on google that night, researching all three. NPH is my mom, everything I read is exactly her. like EXACTLY. and the next day when I ask how mom had been in the morning, they tell me she is walking better! I could seriously jump up and down... This is really it, I watched her walk without a walker from the shower to her bedroom that afternoon. at a somewhat normal pace. ok now I am about to sign her up for the neuro surgery but I don't even know if it is really true. or all in her head, willing it to be true because I had told her all about it. I am still skeptical. I have to remain skeptical through fighting with my sisters as they try to get me to stay with mom to take her to the MRI and EEG that were scheduled as soon as possible but can't be done until Tuesday. I legitimately can not stay as I have surgery the following week. Tracy takes more time off and Mom ends up going to Florida after the test and we all wait to hear what the results are. The doctor was on vacation the entire next week so we didn't expect to hear anything until she returned. The office did call that Monday, but the only results they had were that she needed B12 shots. I passed along the exciting message about her days following the spinal tap. The nurse said they would pass on the info. Tuesday, Wednesday and Thursday we talked every day but mostly it was them asking for her to schedule a follow up (on May 25th) me saying that was too far out and asking for a video conference, them agreeing to a call but the doctor would have to call me etc. etc. It took until Thursday to get an absolute answer, Dr. Warren's nurse said my mom has Normal Pressure Hydrocephalus and would be referred to a NeuroSurgeon to have a shunt placed!!!!! That my friends is the best news ever, truly a MIRACLE!!!!
Comments
Post a Comment