If Only in My Dreams

There have been way too many musical acts coming here during Christmas. If I have to listen to one more caroling group I am going to resort to throwing objects out of the room at them. I need a marshmallow shooter. I did pull up my big girl panties and try to go to one of the concerts. The man and his wife tried hard. But the line was crossed when they sang "I'll Be Home for Christmas". Totally not appropriate. There are too many people who are stuck here, many permanently, who would rather be home for Christmas but cannot be. This is my first Christmas ever without being with family or dear friends. I am finding it hard to really care. This year it seems like just another day at the Hotel California, where I checked in but can never leave. I am rocking my ugly Christmas sweater T-Shirt (it is too hot in here for a sweater) and my light up Santa hat and trying my best to care. It is just lonely, and frustrating, and sad. I guess this year I will be home for Christmas "If only in my dreams".

I get no respect

I am so thankful that I can speak up for myself and fight for my own dignity and respect. Two mornings ago I wanted to eat Breakfast in my room.  I avoid the dining hall like the plague infected chaos that it is. The CNA refused to help me back in bed and forced me to go eat in the dining room. When I got back from therapy, I asked to have help getting back into bed. She did this, not the gentlest but she did help. About 20 minutes later I realized I really had to go to the bathroom. I requested this and she went off. She was in another patient's room and stated screaming "I just put her to bed not 20 minutes ago. She should have gone then. She does nothing but lay around in bed anyway. I am not putting up with this. She is such a pain." Um, no. This is NOT okay with me. I ended up speaking with the nursing director who was as horrified as I was pissed. She took down detailed notes and spoke with the CNA about her behavior. This particular person will no longer provide care for me as I am not comfortable with it. She humiliated me by name in front of other patients and staff. I could hear her down the hall she was so loud.Since then the CNAs have been efficient but very cold and abrupt. I am sure her story was told to them very differently than what happened. Whatever.

Reflections One

I have not written an update in quite a while about how therapy is going. It is a hard three hour work out each day and I end up exhausted by the end of it. I push myself to do more, stronger, harder sometimes to my own detriment. I just want to get back to normal as soon as possible The rehabilitation doctor was in today and said I had a few more weeks to stay here. One day at a time.
Below are some things I have been doing in physical therapy.
* Kicking a ball (not soccer star, more like uncoordinated toddler)
* Opening my hand enough to pick up soft squishy beanbags
* Leg exercises (extending legs, marching in place while seated, rotating feet as much as possible, etc.) with a pound weight on each leg (the weight seems to help me be more aware of my leg and move it easier))
* Working on balance by sitting on the edge of the table/mat and reaching forward to place objects on pegs or to roll a ball
* Shifting weight into my left leg
* Raising my left foot high enough, and properly, to place it on a step
* Getting myself dressed and taking care of daily needs
* Practicing standing balance by standing with support and a walker and shifting weight from side to side or front to back
* Riding the exercise bike thing from Hell (not recently as my lungs have been bothering me)
* Working on swallowing different textured foods
* "Walking" with a walker and support about 30 feet (my left leg drags and does not pick up to step yet)

Sometimes I do not see the successes but looking back over it I have come a long way in two weeks. When I arrived I could not move my left side at all really. So there has been progress, hard progress, frustrating progress, slow progress, but progress.

I still have my migraine but now finally have pain medicine for it. So hopefully it will at least be controlled if not broken. I also started on breathing treatments 4 times a day because the Mitochondrial disease is making it harder to breathe.. It feels like the muscles in my diaphragm are week and difficult to work, making each breath an effort. My lungs also get tight. My pulse ox stays high enough to be safe, but it is exhausting and painful. The nurses and physicians assistants would not listen to me or understand, but the doctor knew what I was saying and was willing to do something about it. I am still waiting for something for sleep. He does not feel comfortable adjusting or adding medicine because I am on a lot of "psychiatric" medications (One is used for my muscles from the dystonia, the other is supposed to help me sleep) and he wants the psychiatrist to decide what to do.

I am getting used to having a roommate after over a week of a room to myself. She is a sweet older lady, but there are some issues. She must be hard of hearing because her TV is always set to jet engine loud. She is also incontinent and struggling with diarrhea which makes for late night visits from aids to clean her up, and oh the smells. But she is kind, and she provided me with information on a way for my Mom to be able to visit me here (the city buses do not go this far and neither one of us can drive). I am hoping to see Mom on Christmas Eve.

By Its Cover

I usually try not to judge someone without knowing them and spending even a little bit of time with them. However, last night I totally looked at the cover without seeing the wisdom in the pages. I received a roommate (they were switching rooms around all day) and my first impression was that she was rude and deaf (her TV was up so loud for my headache). Then a visitor had a tantrum because I have a tray table between her bed and mine. I am allowed two tables because I cannot life and move my laptop every time I need a surface to eat or color or whatever. I am very careful to turn it tightly but this woman was just going off. Finally I discovered my roommate is incontinent and has the world's worst diarrhea right now. Oh the smells alone almost did me in. But then this morning I was able to meet her. We talked for a little while and it turns out she is a delightful woman. She even helped me find a way for my Mom to visit me while I am here.I was so mistaken and judgmental that I am ashamed of myself. I needed to relearn that lesson and this sweet, kind woman has taught it to me.

Small Victories

I have been very impatient with therapy. To me it seems like I should be able to do so much more than I can right now. I see people who are elderly and fragile doing things that seem like they are impossible for me. But I have noticed the small victories, the ones that do not seem to count but that add up to massive success. Often these small victories are more important and worthy of celebration than the one huge success. I have been here 10 days and have noticed many small victories that I choose to celebrate.
* Being able to get dressed almost completely by myself (everything but the bra and shoes)
* Being able to stand with the assistance of one person and a walker
* Increasing the foods I can swallow
*Being able to start to take "steps" with help
* Being able to pick up a beanbag with my hand
*Improved balance while sitting
* With a railing and one person assisting I can get into and out of bed
* I have found tricks to allow me to position myself in bed and move independently when lying down
* Brushing my own teeth, washing my own face, putting on deodorant, and brushing hair
* Kicking a slowly rolling ball with my bad leg (not soccer star style, but my foot hits the ball)
* Being able to independently eat with adaptations (food cut small, special plate/"scoop dish")

I have the Right...The Right...

Today (Tuesday) I hope to meet with a social worker as I have requested. There are several issues in terms of care that need to be addressed. I have the right to go to the bathroom when I need to, not an hour or more later. I have the right to not be ridiculed to my face or behind my back. I have the right to access my doctor when requested, instead of being ignored. I have the right to make my own choices about what I do and when I do it. I have the right to freedom of speech and to be heard. I have the right to know my own body better than anyone. Yet none of these rights are being fully given. The sad thing is that this is an average nursing home/rehab facility (definitely not the worst) and many people do not even have the ability to know or state their rights. I do not think I am asking too much or being unreasonable. I want to have dignity, self determination, access to proper medical care, and respect. I want to be treated as a human, not bed 205 or my diagnosis.

First Steps

Today at therapy I had the honor of witnessing a woman take her first steps with a walker since her disability/illness. She was so very scared and anxious. But she overcame that and walked!! It was not far, but distance was not the point. When she sat down she was in overwhelming happy tears, and I almost joined her. Sometimes the biggest things are the little things, the act of beginning, the start of the journey. That pride in her heart and on her face, along with amazement, was priceless.
I had my own small victory at therapy today. I "walked" 8-10 feet (last time was about 4-5) and was actually able to lift most of my left foot off of the ground. It was hard, so hard, but so worth it to feel and see myself moving. It takes so much work but I have improved in just a week. It is all a journey, a process of learning and discovery, a series of lessons and struggles and victories. It is about how you see the world and the perspective that you seek.

Chestnuts Roasting on an Open Fire

This is a difficult post for me to write because it deals with some very personal issues. 7 years ago I was an inpatient in a psychiatric facility for 11 days because of what we now know as bipolar disorder. This seriously traumatized me for quite a while, and there are still after effects. So I think part of my problem here is that in so many ways it resembles that hospital. The rooms are sterile and "safe", there are activities that they keep attendance at, you have no privacy (the door must remain open at all times), and there is usually someone shouting. You cannot go outside without an escort and then pretty much contained to a courtyard. They force you to get up according to their schedule, they make you get dressed even if you feel like having a pajama day, and you do not get to shower solo. The staff is about the same too- some really nice and some who talk to me as if I am intellectually challenged. I think this might be part of the reason I cannot sleep is that it makes me too anxious at night. I never want to experience what I did before ever again, and this is just a little bit too close for comfort.In fact, because of my Bipolar Disorder I will be seeing a therapist and a psychiatrist while I am here. Oh the fun. If only I could find peace from all of this and allow my mind to calm and my body to relax.

And on the Seventh Day...

Today is a rest day from therapy, a day without pushing my body to and beyond its bounds. While I want to get better as fast as possible, I also know my body needs this rest. We may need to adjust therapy as once I am finished my energy for the day is gone and I sleep. This is probably because of the Mitochondrial Disease. The Mitochondria are in every single cell in the body and are what produces energy for the cell. Mine are damaged and so do not produce energy properly. So I can only do so much before my reserve for the day is gone. I am sure spending 3 hours doing therapy and then the remainder in bed is not going to help me as much as if I was awake and capable of doing more.
I like that in the process of the Creation, God himself took a day of rest. He had completed an enormous, unfathomable task and then rested. He took the time of peace and calm and rejuvenation. It makes me feel less of a disappointment to need that day of rest. And today I will be thanking the Lord for the many blessings in my life, relaxing in His loving arms, and drawing near to Him.

The Lion Sleeps Tonight

In the Jungle, the Mighty Jungle, the Lion Sleeps Tonight

I am jealous of that blasted lion. Another night I am too restless, out of sorts to sleep. Another long night of trying to pass the time and trying to sleep every so often.. I have slept one night since I have been here on December 7. The rest of the nights have been spent awake. So during the day after therapy I collapse in exhaustion. Thankfully tomorrow is a day off from therapy so I can rest all I want. Well not really. They really try to get you awake and out of bed here as part of your recovery. My energy depleted self, with cells that do not properly produce energy, has its own limitations. I need the doctor to write for something for this headache that gets worse at night, and for anxiety or sleep. He said he would but then never did. I would give almost anything to be able to sleep.
Speaking of sleep, a lot of the elderly people here go to bed so early and wake up at still dark O'30. They start getting out of bed and getting ready for the day at 5 am. 5 am is not a time I like to see. Neither is the 6 am when they wake my butt up if I manage to fall asleep for a few minutes. Just one morning it would be nice to hold a sleep in - when everyone refuses to get up before a decent time. A minor revolt, a stand on the right to sleep. I may stage a one man revolt tomorrow.

A Man is Not an Island

Today was the facility's Christmas party for families and residents. I attempted to go, but when the music started my migraine began to let me know it was not down for a Christmas sing a long. But while I was there waiting for it to start I noticed a huge divide in the patients. It is something I have noticed here before. It is not a divide based on ability, cognitive function, or behaviors. Rather it is a divide based on who has family that visits and who does not. Today the results were about half and half. The families that came were loving and caring and excited to visit. Those without visitors sat quietly at tables with others without visitors, looking around at all the new people in the room. I can't say if they were all sad, but it broke my heart. I cannot receive a visit from my Mom this holiday season, but I am only here temporarily. For those who live here or are here for a long time it must get lonely. I wonder if they feel forgotten, lost. Even if they cannot communicate, who knows how much they can hear and feel and know, My friends have showered me with love and support and that has made a huge difference.

The Journey of a Thousand Steps

Friday: I have been feeling badly in PT/OT because I am basically the only patient with two therapists working with them at once. It was frustrating, because the other patients were so much further along as I worked to convince my arm to lift more than an inch, or my foot to raise off the ground even an inch. Yesterday was an amazing day. It still took two therapists, but I "walked" between 5 and 10 feet. Okay, so walked is an overstatement. Two therapists supported me upright, I held on to a walker, and my left foot just barely slid on the ground. But I moved!! I was upright and moving and I was able to attempt to tell my body what to do. Huge victory!! I want to be walking but it is all about baby steps and patience. I am not a patient person in most situations, so this is a huge lesson for me. I cannot expect to suddenly be back to my normal. I have to give it time, and way harder work than I ever imagined possible, but I am stubborn. And the journey of a thousand steps begins with just one.

Saturday: I have a new nemesis. It looks harmless until you try to get your non cooperative left side to join in the fun. I primarily use it with my right side while my left leg goes along for the ride. My left hand cannot grasp the handle independently so it just chills out.

I was so proud of myself for lasting 15 minutes with only a 1 minute break and making it .11 of a mile. Then an elderly man on oxygen came in, did 20 minutes, and surpassed my great achievement in under 3 minutes. Ugh!

Today was a good day in therapy though. With minor assistance I was able to extend my leg nearly straight out. I kicked a ball with my bad leg - not soccer player style, more like uncoordinated toddler in a chair style but I kicked the slow moving thing! As I was doing leg exercises and doing my best to lift the stubborn leg, the therapist told me to look at how high another patient was getting her legs doing the same exercise. I simply replied "Showoff!" The big thing today was I was able to pull my foot about 3-4 inches off of the ground to put it on a low step and put a little weight into it. I did that five times (with support but the movement was mine!). !! I needed a good day as I was getting so discouraged. The therapist today said he can really see changes since I came in on Monday and that I am making great progress. I guess from my perspective I want to get back to my life so badly that I lose sight of the small victories. I need to take the time to appreciate and celebrate those small victories!

Reality Check

I have an unknown Mitochondrial disease. This means that the energy production in all of the cells in my body is not proper. It can cause a lot of unpleasant symptoms and limitations, including death. The reason it is unknown is because my DNA came back abnormal for mitochondrial disease but not in any pattern they have seen before. Yes, I have to be an original. Along with those DNA changes are associated changes for a high prevalence of Bipolar Disorder and Early Onset Alzheimer's Disease. I already have Bipolar Disorder. Being here has faced me with the very real possibility of what my life would look like with Alzheimer's disease and it is not comforting. I do not want to lose all of my dignity, my value, my worth, my humanity, my individuality by living in a place like this. It is scary enough to think about slowly losing memory and body function. In Early Onset Alzheimer's the disease usually lass longer because the body is not yet changed by age. I have a profound appreciation for what these people's lives are like and would love to find a way to make them better. I want change for if this happens to me, but also for those to whom it is already happening.

The Sound and the Fury

Many of the residents here have difficulty communicating. There is a sweet old man (I think) who likes to hold my hand and give me high fives but no matter what I do I cannot understand a word he says. I cannot imagine the frustration of trying to talk and having it come out garbled or not at all. Some people here are really patient about speaking with the residents, but others just pretend to listen then nod and carry on with whatever they were doing. I can communicate. I can make my voice heard. I can speak for myself. I can have a mini temper fit like I did this afternoon (long story) and be understood. When someone who cannot speak clearly works so hard and cannot be heard, can not speak for themselves, can not be understood I can only imagine the frustration.The least we can do is try our best to hear them, to give them a voice, and to understand when they get upset over you not understanding them. I pray that i never lose the ability to communicate, but if I do I pray that someone will take the time to hear my voice.

A Rose By Any Other Name...

A rare two posting night. :) I cannot sleep yet because of my headache and this observation really hit home tonight.
It is very easy to view the elderly as being child like. Often they are spoken to or treated as if it is assumed that their cognitive abilities have all but vanished. No one here has Dementia (not on the two wards I use) but the way many people talk to them you would never know. I had to do an assessment for recreation services today, and one of the questions was what important information I wanted them to know. I specifically had her write that I am highly intelligent and detest having people talk down to me or treat me as a child. I just hope they can follow that.
My big revelation this evening is how patients are talked about without them knowing, even in front of other patients. They literally have very inappropriate nick names for several of the residents that I know of. They laugh about these people and find humor in their limitations. As a former preschool special education teacher I would never have talked about my students like this because no matter what the challenges are they were first and foremost children. Here it should be that patients are first and foremost human beings. I know some people can have a difficult personality, or an annoying habit but that is no reason to demean them. Dignity can be a very rare thing around here.
Is this how we want our elderly to be treated? These people are mothers, fathers, sons, daughters, sisters, brothers, friends. They matter to someone. I was raised to respect those older than me, even if just by a little bit. We have lost this manner in so many ways. It breaks my heart to see and hear it. I am so thankful that this is not my home, that I get to go home and go back to a life where I will have dignity, respect, appreciation, love, and belonging. But for so many this is home and they do not get to return to a life of respect.

Boot Camp

Today was my first day of therapy. And all I can say is that they kicked my A$$! I was there for three hours of hard work. It is amazing how hard it is to make such small movements right now. I did get to stand up with assistance and work on putting some weight on my bad leg. We are also looking at getting me a new set of AFOs (ankle foot orthotics) to help stabilize my legs. I also now have a splint for my left hand to keep it from curling up so tightly. I am to wear it as much as possible during the day and all night. Let me tell you that typing one handed is exhausting and time consuming. So if some of these posts are short that is why. My therapists are incredible and totally rock. They push me but not to the point of significant pain or exhaustion.
What impressed me today was watching the elderly patients (I am the youngest here by probably 30+ years) who are working so hard to gain or maintain skills. No one complained the entire time that I was there. One man whom I believe had a brain injury at some point and now lives here (He is in the residential unit) actually refused to leave until he completed a specific exercise. Everyone was at their own ability level and working on their own needs, but we all respected each other's battles.
After therapy I decided to be brave and join in one of the scheduled activities. I was with a small group of old women and they were so nice to me. We made Christmas cards and craft gingerbread people. Several of them could not write, and it was so nice to be able to help even one handed. It was an activity like I would have done with my preschoolers but still fun and a nice change of scenery. But sitting up for even longer wore me out. By the end I was slumped to the side and raced at the rate of a sick snail back to my room.
I also ate in the dining hall today for two meals. Old people get stuck in their ways and do not seem to like change. I tried to roll up to a table with three sweet looking old women and was told that the spot was taken - by someone not there- and I needed to move. I will get to the cafeteria early when I choose to eat there (I can also eat in my room) so I can start at an empty table and let them choose whether to sit with me or not. The ladies at the activity were much nicer.
My migraine still has not gone away. It is tolerable during the day but gets much worse at night and in the early mornings. I have no pain medicine for it, as the theory (and I call it a theory) is that pain medicine can actually cause it to rebound worse. I for one am willing to take that chance. It has to end soon...right?

Blindsighted

Late on Wednesday night/early Thursday morning I was having difficulty sleeping. At around 3:30am I just felt majorly "off". By 4am I had noticed my left arm and leg were numb and tingling. By 4:30am I had an intense headache and significant weakness on the left side. It was then that I decided a trip to the Emergency Room might be a good idea. As soon as I got there I was evaluated for a stroke and "qualified" (do I put that on a resume?) and they called a code stroke. It went from one person in the room with me to half the dang ER. A CT scan was done and normal. I then teleconferenced via this cool robot with a neurologist on call at another hospital since I live in small town nowhere. It was decided that I needed to be transferred immediately to a larger hospital with better staff/treatment options/testing. After a long 45 minute ambulance ride, I arrived at the big hospital. I then spent from 7:00 am until 6:30pm in the ER. Um, I think that is a personal best (worst). They did finally move me from a curtained section of the ER to a private room which I and my headache appreciated. During all of this time my weakness progressed and I lost sensation on my left side. The vision in my left eye also became impaired, with no peripheral vision and blurry vision. I met with the neurologist the next day and it was decided I needed an MRI to detect any stroke, swelling, or metabolic changes. The MRI sucked because it was so loud, but I did get to listen to some good music. Apparently the MRI came back normal. The doctor then decided that I was having/am having a hemiplegic migraine. This is a migraine which causes one side of the body to behave as if there were a stroke. He tried IV Keppra and Magnesium to break the migraine but neither one offered much help. At that point he felt that I could and should go to rehab (an aspect of a nursing home) and I would have to wait out the migraine and hopefully recover use. It is now almost a week later and I still have the freakin headache (it is worst at night and early morning), and my left side is in rebellion against me. Today I have my first sessions of therapy (PT, OT, Speech) and a big meeting to discuss my plan of care and such. Yesterday was a day of assessments.
Because I am far from home and my mother cannot drive, I had no clothing to bring to rehab with me. They found me a couple items to borrow from the laundry (they save clothing people leave behind- function way over fashion here). I have the most amazing friend who is sending me the clothes and personal items that I need as well as some entertainment and time passing items. I am so blessed.
I am hoping to get a better insight into how we treat the elderly in America, a new perspective on illness and age, and to continue to document my recovery (both the humorous and difficult).