Easter Brunch

Heading down to Rockland on a gorgeous day

I picked Dad up yesterday morning and we headed down to Rockland for the day. PJ's partner Frank had the bulk of his large family up for Easter and in true Italian fashion (and by the way, everyone in Frank's family is a sweetheart, I couldn't ask for a better brother-in-law or family to know), there was going to be tons of food. How could we miss this?
To be honest I wasn't sure how this was going to work. Dad has been sheltered, watched over by nurses and doctor's for months now. It hadn't it me until it was time for Dad and I to leave. Whatever fears I had were squashed as soon as Dad stood up from the wheelchair and using the side of the car, walked to the passenger seat and scooted himself in. We were able to bring his hemi-cane and it was quickly apparent that's all he was going to need.
We hopped in the car and away we went. It's been cool up in Maine still, yet yesterday was warm and sunny. It was the perfect day to take a car ride. This was the first time since the stroke Dad had been out of a facility for anything other than being transported for a CT scan. He loved it! He didn't even want the radio on in the car, preferring to just look out the window at the landscape.
The only real concern any of us had were the steps into the Inn, as there are several. Dad did an amazing job on all the steps. Someone made the comment inquiring if Dad had his ankle brace on. He didn't. His right leg and his right foot have come a long way.
I could wax poetic about the day, the experience, all of it. Instead; however, I'm going to share photos of the day with you. Dad had an epic day. It convinced me that he will do just fine when he comes home. Hope and faith are great concepts to have in your mind, when you actually see the payoff though, well that's something entirely different. It was a great day with family and friends. Enjoy the photos and Happy Easter everyone!

Photos of the afternoon

March 25, 2013, Day 82

Day 82? What? It doesn’t seem possible does it? 82 days seems like a long time, yet it’s nothing when you really think about it. Heck, I’ve had relationships that didn’t last 82 days. I sometimes sound like a broken record when people ask me how Dad is doing. I nod my head, smile and tell them he’s doing well, slowly and surely making progress one day at a time. One day at a time right? One day at a time is all we have.

Since Dad’s recovery is based on the level of care Medicare and his insurance will pay for, the suggestion was recently made that maybe Dad could get more of an a la carte selection of therapies. In other words, maybe he could get more therapy if he pays for it. Well you can always get more of everything if you pay for it can’t you? I suppose money really does make the world go round? But Dad isn’t some pure bred bird dog you buy that you then ship off for training, to return a champion hunting animal. What we need to do is take the tools learned from all his therapies and actively help him out when the trained professionals aren’t around, because there will come a day when they won’t be around.      

I received a phone call from Dad’s physical therapist today wanting to set up a home assessment for some time this week. The questions they have asked all along and the concerns about the house have been railings (are there any in the house), bathroom setup (believe it or not a shower stall is exactly what they want) and steps (of which there are thankfully only 2). Mom and Dad made the right decision when they bought their little house because it’s a ranch. Part of the reason for buying the house was Mom has difficulty with steps and in the case of steps, less is best. Little did we all know how fortuitous it was for everyone that they purchased their current house. Everything happens for a reason right? Physical therapy wanting to come and asses the house, with Dad in tow, is huge because that means he’s coming home and soon. While coming home is the goal we all have at this moment, I also know that when it happens it will be another beginning for us all. We will all have to pull together to not just visit with Dad on a Sunday for a couple of hours but help him continue to improve to his full potential on a daily basis. I'm ready. Let's do this.  

Addendum: Last night when I saw Dad, he relayed to me that he was able to move his right thumb in therapy, something that surprised even him! It was the first time since his hemorrhagic stroke in mid-January that he was able to move it. Of course when I was there and asked him to move it, using all his as I call them Jedi mind tricks, he could not, but that's ok. He had moved it during the day, which means he will move it again. Yesterday was a stellar day!

Addendum to the addendum: Just got word this morning that Dad is approved for a 6 hour leave on Saturday to accompany us to Rockland for an Easter family dinner with Frank's (PJ's partner) side of the family! Like I've said before, it does not take much to make me happy and all of this news is more than I could have ever expected and makes me so happy. Pictures from this weekend will surely follow!

Palm Sunday

Pastor Elaine stopped by since Dad couldn't make it to Palm Sunday

Relaxing this morning

More to write later enjoy!

Wings

Today Dad got his "wings" today when his physical therapist approved him for two things. One was no supervision with transitioning himself from the bed to the wheelchair or a regular chair and two, he only needs  close contact when using his hemi-cane. When I got to his room, I noticed this paper wrapped around his cane. There is something out there for everything. The hemi-cane is such a cool contraption for a one handed walker.  For the last couple of days now Dad has been hinting at being able to come home in about two weeks. I'm starting to believe him. 

Greetings from the Weekend

While Mom was in church yesterday, I went over to Stillwater to hang out with Dad. Not a fan of electric razors, I brought him one he could use. Afterwards we headed down the hall to the common area. Sitting there, we could hear someone playing the piano in the dining room. They were playing old standards, from say, the late 1800’s (I may or may not be exaggerating this), and playing them very slowly, as if playing for a funeral march. Dad and I got such a kick out of it though, we couldn’t stop chuckling. Whoever was playing God Bless You, keep trying, because practice will make perfect. After picking Mom up and running a loop of errands around Bangor, we made our way back to Stillwater as PJ was just showing up.

Dad is doing really well transitioning from the wheelchair to a regular chair as his right leg continues to improve in muscle strength and movement. He has been doing the leg exercises he learned in acute rehab and in the month he has been in skilled nursing has made what I think are huge improvements. Dad, on the other hand, seems less than impressed. Regardless, I see a big improvement. His balance is better, he’s steadier on his feet when standing and while he still can’t quite move his foot, his leg itself has continued to improve. His right arm; however, shows no real sign of improving yet. Dad insinuated over the weekend to just lobe it off if it wasn’t going to work. I laughed at the ridiculousness of this notion and commented that the arm is usually the last part to come back, that he can continue to improve for up to a year and beyond and that maybe we shouldn’t quite go down that road yet. Can you imagine….

Enjoy some pictures from this weekend!

  

All shaved and ready for the day!

Dad and PJ

Roommates

Dad had a new roommate when I showed up yesterday after work. It had been almost a week since the last one left, a young father who had been in a car accident where the car caught on fire and burned his legs, poor kid. This last week was the first time since his first few days in acute rehab that he had a room all to himself. I remember, in the beginning, they asked us if Dad wanted to be alone in a room or did he mind if he had a roommate. Dad being Dad didn’t care one way or the other…until he actually had roommates. Now I’m not quite sure if he wants them or not. It is what it is though. If I were to think about how many he’s had since everything happened, I would say, it’s about a dozen different roommates in the 10 weeks since the stroke. Some we have talked with and gotten to know, some have been off in their own little world, some have been very quiet. They have all been in the various facilities for different reasons. It’s interesting, as I think back, I don’t believe any of them have been there for stroke recovery specifically.

Dad’s roommate this time is a young 84 year old gentleman who was born in Brewer Maine (the sister city to Bangor), still lives independently in the same house he’s been in for the last 49 years and with the exception of a couple of years he was in the service has never lived away. His wife passed away four years ago this month, his one daughter moved to Alabama for 12 years before returning to Maine (they may leave, but always come back up here). Dad and I met his two daughters yesterday (we aren’t sure yet if there are other children) and we were told their father would have Dad in stitches soon as he apparently has quite the sense of humor. I tell you all this because this is the stuff Dad would tell to us. He loves to talk to people and then tell us everything about who he talked to, where they are from, what they did for a living, any and all information he learned about them. And when he references people it’s always by their first and last name, what state they are from, what town they live in, what they did/do for a living, where he knows them from. And he brings up these facts every time he talks about them. So it’s Liz Becker across the street, Lee and Barbara Smith from church, Artie and Dave Hacker who clean up parts of the Appalachian Trail, Gene Morton who used to be a sheriff, etc. I get the biggest kick of it to be honest.  

So we will see how Dad fairs with his newest roommate. I’m sure there will be a couple of more before it’s Dad’s turn to walk out of Stillwater.

Staying Positive

What’s the alternative? There are opposites everywhere we look, surrounding us at every corner. I can only say it so many times, we can be this way or that way. Either way takes just as much effort, but which way makes you feel better? Optimism or pessimism? Positivism or negativism , which one do you ascribe to? If these similar opposites require the same amount of energy, the same amount of emotional thought and investment, why on earth would you chose door number 2 and err with the darker of the two sides? Yes frustration can run rampant and I am definitely guilty of allowing it more time in my head than it should have. But when you look at the frustration facing you, what are you really looking at? You are looking at things you have no control over. And what is the only thing you do have control over? How you react to every situation presented to you. That’s it. To rely on others to give us an expected response is a waste of time. Relying on others is merely relying on projections of who we are onto someone or something else. In the end your almost always disappointed, because that someone or something is not you. If you rely on yourself though and learn to react better with given situations, well, you will find yourself changing your thought processes. All of a sudden, you will not get frustrated, you will not be pessimistic, negative thoughts will fade away. Things become easier, even when they aren’t necessarily easier.

Dad is improving every day. He is itching to get the ankle brace they fitted him for last week because that is going to help stabilize his leg and foot. He is itching to get out of Stillwater and come home because mentally that is going to make a huge difference. Sometimes you need that itch to motivate you to accomplish things. The itch he has is good. It is all good.

One Day

I’m going to relate part of a conversation I had with Dad a couple of summers ago that gave me a little insight into my father. First, let me preface by saying, Dad and I used to sit in the garage or the backyard during the summer months, both of us always preferring to be outdoors versus indoors, especially when the weather is nice. Summers in Maine are pretty spectacular and one of the reasons he retired up here (and why PJ and I followed suit). Dad and I would sit outside sipping martinis (he is the only one I know who drinks them besides me) and talk for what seemed like hours as the sun went down. I knew at the time, those were special moments that would stick with me and make me smile for years to come. He would tell me stories about his parents, stories about growing up, always lots of stories. The man liked to talk. None of the stories were new either. He liked to repeat himself (a character trait I seemed to have inherited from him). I asked Dad one time if he was close with his father, my Opa. I knew he was close with his mother, but Opa passed away from lung cancer caused by asbestos when I was 6. Dad was 33. Afterwards, Oma came to live with us until her death a month and a half shy of her 100^th birthday in 2004. Opa forever holds a place in my heart as the kindest person I ever met. If you ask others that knew him, well, my sentiment is not alone because it is also theirs. But my grandparents were 40 when they had Dad. In 1944 that was pretty old to be having a kid and needless to say the age difference was considerable for the times. So when one summer night I asked Dad if he ever had any conversations with his father about this or that he paused for a moment, then replied, “You have to understand, my father was already such and such age by the time I was a teenager. He worked long hard hours (he was a machinist and mason) and when he came home he was tired. I was a teenager. What teenager do you know that wants to hang out with their parents? So we didn’t talk much.” I could hear a twinge of regret in his voice when he shared this with me. It was as if life had just gotten in the way, as it has a tendency to do, yet I felt it was something he had wished he had done before it became too late. Funny how things end up one day all of a sudden becoming too late. Should have, could have, didn’t because of a million and one excuses right? We all do it, I have most certainly been guilty of it. Are the excuses we make to ourselves worth it though? Don’t let the opportunities you have in front of you now, to make connections with the people closest to you, become a too late scenario one day. Take advantage of the time you have, because one day will be here before you know it.        



Dad helping his father (on the left) and John Pollack (on the right), who was one of their neighbors in Livingston NJ,  redo the steps on the back of their house, a weekend project Dad was less than thrilled to be helping with. I love this picture.



It's a Small World

Stillwater common area through the eye of Tiny Planet, 3/9/2013

This Is Now

PJ found himself up at the house last week by himself. Mom and I had gone to her PCP yearly visit, he had gone to see Dad and stop by the house. I think it all hits us when we are by ourselves and surrounded. After Mom and I returned, PJ and I were in the garage and he made the comment, “I was feeling a little sorry for myself and looked around at all of Dad’s tools and thought he’s not going to be tinkering around here anymore with them.” It was honestly the same sentiment I had during that first week after the stroke. I have been staying with Mom and Dad though and so my experience has been slightly different than PJ’s. Mourning the loss of who he was happened much earlier for me. We all go through the stages of grieving, whether it’s a death, a divorce, any kind of life changing event. The changing of the familiar to the unfamiliar gets most of us every time.  Sometimes it’s drastic, like an auto mobile accident and BOOM, in a flash everything is different and you mourn and grieve once the shock wears off. Sometimes it’s gradual, you or someone you know finds out they have a terminal disease and have only months to live, you have time to mourn and grieve before it happens. All of it is part of the process though (everything is a process isn’t it?). I told PJ not to feel sad. Who’s to say Dad wasn’t going to be re-arranging all his tools on the peg board, painting aluminum coffee can’s gray to hold the many variations of screws and nails he has, organizing the chaos of his workbench (something only he knew about)? PJ agreed. As realistic as we both are with the current situation is also as optimistic as we have to be about the unknown future. There is no crystal ball that says this stroke happened so everything will be fine going forward, just as it won’t say this stroke happened so everything will be shit going forward. As Dad has to re-learn almost everything, so too must we re-learn almost everything. One of them is the past is the past. That life is gone. None of us are going back to that place again. But you know what, Dad is still here with us and that is all that matters now.   

March 6, 2013, Day 63

Yesterday afternoon we all met with the Social Worker at Stillwater, where Dad is currently residing. He had called last week wanting to set up a family meeting to go over what needs to be gone over. It was the first time we all sat down with the ones who get paid the big bucks (as I like to say) to talk since we were all around Dad at Maine Medical in January during the initial days after the stroke. Today that seems like forever ago. While we have all been to see Dad on different days, during different times and with different people, it was nice for us to all be there at the same moment with him, discussing what the next step was going to be. It was also a relief to have confirmation of what we have all been noticing, that Dad is doing really well in therapy and continuing to improve daily.

The physical side of his therapy is coming along slowly but surely (not that it's a race, but the tortise always wins). This Friday he gets fitted for an ankle brace to help with the foot drop he has. Although his right arm is still not showing much improvement, the hope is the electric muscle stimulation they have begun will help activate his muscles which will hopefully trigger his brain to relearn how to use his arm. The web of connections our bodies have running throughout to keep us going is truly amazing, with the brain, our own private wizard of OZ orchestrating it all, the most fascinating.  At the moment he has to wear an arm sling constantly so his shoulder doesn’t slide out of its socket and become completely dislocated. You don’t realize how heavy a limb is until you can’t move it anymore and it just hangs there. I’m double jointed in my arms and I’ve joked with him saying he can try and do all the little parlor tricks I used to perform for my friends by popping my arm out. It used to freak people out. He cringes at the thought, then laughs.

Occupational therapy is somewhat difficult as I imagine it would be for any of us in the same position. Not only is half your body fairly motionless, but the side that does have movement isn’t your dominant side. Now try to put on a pair of pants and pull them up. Put a t-shirt on. Try it at home and see how you fair. I did last weekend and I failed miserably. Needless to say, he is still a mod assist and does need that moderate assistance with regards to dressing and bathing himself, but that too does improve daily and will continue to with practice.

As I mentioned in another blog entry, speech also continues to advance, despite the stumbling blocks in communication with the aphasia and apraxia. Most people who suffer apraxia of speech “learn” themselves out of it with the proper help and Dad has a great speech therapist. She’s excited to work with him because she sees great potential in him to overcome this debilitating disorder. She has started Melodic Intonation Therapy with him and he has responded increasingly well to it.

All of this news was fine and great for us to hear. But what was the best news from yesterday’s meeting? The possibility of Dad returning home in 4-6 weeks! That’s right, there is a very good chance that Dad will be well enough to come home in another month. Time and patience, practice and will. These are my new “fours” and you can't have one without the other. These are what I remind Dad of. These are what we all remind ourselves of. All things are possible. Always.    

   

Lift that leg!

Lift that leg!

Now stretch it out!

Dad fell twice this week. The first time his neighbor across the way saw him and pushed a call button, alerting the nursing staff. The second time, I don't know. His bed was already rigged so if he got up they knew about it. I didn't make it to Stillwater until 6 pm that night and when I showed up I noticed the travelling blood pressure/whatever else it does machine, sitting in his room. Then the CRNA came in and notified Dad they had just called his wife about the fall. This time he had hit his head. Now he was going to be under a neurological watch for the next 36 hours. For the first four hours someone comes in every 15 minutes to check his vitals, his eyes, the strength in his good arm. It decreases in increments after that, etc etc. What can I say? I could describe this feeling or that feeling, but in the end whatever you would be feeling given this information is how I felt at one point or the other. He was ok, slightly embarrassed, but ok and so I was ok. What more could you ask for?

"Why do we fall? So we can learn to pick ourselves up again." - Batman Begins. Allow me to be cliched for a moment, but there's no need to save the world in a day. I post these photos, because despite what happened this week, the reality is Dad will walk. Maintaining balance will be a challenge, but there is no doubt it will happen.

Aphasia, apraxia, dyspraxia, oh my!

Specifically, in the last two weeks we have seen improvements in Dad’s speech. He has begun forming the beginnings of simple sentences. He gets tied up on what I call the “bang” part of the sentence, the ending, the meaning, the point he’s trying to make. The beginnings are there. You have to start somewhere right, so where better than the beginning. The other day the speech therapist was teasing Dad about his name. She keeps calling him different names, provoking him to say his own name. He tried to introduce me to her and she tried to get him to say my name (it’s a tough sound to make, little kids always have difficulty), pointing out to me where the K sounds come from in our throat, just below the larynx. Both of these tasks are still difficult for him. She has confirmed what his other rehab speech therapist had confirmed, he is suffering from some apraxia on top of the aphasia. Apraxia, not to be confused with dyspraxia, is a neurological disorder that affects our ability to perform a task even though we may understand what is being asked, even though we are willing, even if we already know how to do it. I say some apraxia, because as Dad has been somewhat inconsistent with his rehab progress, the apraxia is also somewhat inconsistent. To give you a sense or idea of what apraxia is like, if you are having a conversation with Dad, he understands everything you are talking to him about. If he doesn’t think about it he can spit out a sentence, phrase or word, it’s understood and in the context of what you’re talking about. But if he is asked a question, if he is asked to do a task and has to think about it, well there entails the current roadblock. Sometimes he can do it, sometimes he can’t. He is also fully aware that when speaking, sometimes the wrong words come out or he gets hung up on a word and then continues to repeat it. It can obviously become frustrating (what was that virtue again?). I’m just trying to encourage him to relax and to give time for the right word to find its way out of his head, down the path and out of his mouth. In this day and age we are usually so quick to speak our mind and spout out seemingly anything without regard, in many instances, to what we are saying. We begin forming what our responses are while the other person is talking instead of actually listening to what they are saying. Well every sound out of Dad’s mouth is an attempt to communicate. Every sound is something we all need to focus on. He is communicating with us, we just need to listen very carefully. He will get there. We all will.