Taking care of Dad also means taking care of his pets. We all try to keep in contact with each other regarding what has and hasn't been done for each pet fairly regularly. This is usually accomplished by text. Texting on the go, for me at least, often involves voice to text. It also includes some interesting text fails.
As I have mentioned in early posts, my dad has a parrot named Mickey. Mickey enjoys eating fruit so whenever fruit is on Dad's menu we will set some aside for him as well. One day I brought some melon to Dad's house and after we finished eating I cut up the remainder, put it in a storage bag with Mickey's name on it and put it in the refrigerator. Then I attempted a voice to text message to Hillery that should have read: I sliced up some melon and put it in the fridge in a bag marked "Mickey".
A few minutes later I received a reply: LOL! Omg!! Just one bag? Is it a garbage bag?
Huh? What the heck did I send her to get that response? I went back to re read my text...it read: I sliced up someone and put him in the fridge in a bag marked Mickey.
Note to self: voice to text is not your friend.
Showing posts with label peace. Show all posts
Showing posts with label peace. Show all posts
Saturday, November 22, 2014
Wednesday, November 19, 2014
my real name...
(My first name is not ERIN. For this part of the story I will have to tell you my real first name. Likely this will be the one and only post in which I will mention my first name. If it were not such a significant part of something that happened I would not consider it but, unfortunately, this part of the story does not work without it.)
Dad was transferred to a rehab hospital upon his discharge from the stroke ward. We were told he would need seven to ten days of rehab which would include physical therapy, occupational therapy and, hopefully, enough time for us to come up with a plan for round the clock care. Immediately it was clear, between me and my two sisters, we had very different ideas of what was right for Dad. This would take almost the entire stay to come to an agreement that satisfied everyone enough to be comfortable...at least for now.
After the transport left the hospital with Dad I loaded everything into the car and made my way to the facility. With any luck the staff would be sensitive to dementia patients having difficulty accepting assistance. Dad was still having trouble staying in reality. His short term memory would last minutes at best. His long term wasn't much better. Even worse, dad was still combative; he would insist he was going home, demand it, start to try to get up so he could walk out and we would have to restrain him until someone, usually me or one of my sisters, could talk some sense into him. None of this changed when he entered the rehab facility.
I entered the automatic doors and went to the front desk and asked if my dad had arrived yet. A sweet faced woman in scrubs who sat at the nurses station said he had just been brought in and directed me to his room. I peeked in to see how he was handling everything. Although he was clearly not happy to be in another hospital it appeared that the nurses helping him were assisting him with a trip to the toilet. If there was paper work to sign, now would be a good time.
I went back to the front desk and again spoke to the woman in scrubs who turned out to be a nurse named Patty. She walked me through all of the paper work. After about the fifth page I wished I had been able to attend Dad's doctor's appointments. The few things I did know for sure were relayed to me by word of mouth as they had been relevant. Now I was being asked for details I, quite frankly, didn't know. I winged it and asked Patty to hold out any pages I wasn't sure about. Then came a page that really made me uncomfortable. It was a waiver clearing the facility of liability if Dad should have an accident. No way was I going to sign that. I asked her to hold that out for my sisters' opinions, sure that they, too, would be unwilling to sign away our rights to sue if the facility was negligent.
I made my way back to Dad's room to check if the staff had been successful getting him to the toilet on time. They were not. Dad was on the bed and he was reaching into his sweat pants trying to pull out the adult diaper they had put on him. It was clear this solution felt strange and uncomfortable for him. A nurse was loudly trying to convince him to keep it on. It was time for me to intervene.
"Dad, I know that is uncomfortable but you have had an issue with bladder control", I explained, "I brought you two pairs of briefs but those are already soiled. If you can please keep this on, I will go get more briefs."
One of the nurses loudly chimed in, "Yes, Mr. Houlihan, you have to keep the diaper on!"
I shot her a quick look to let her know she wasn't helping and corrected. "DOCTOR Houlihan, ma'am", and leaned in and whispered, "Kindly refrain from referring to it as a 'diaper'. This is hard enough on his dignity without humiliating him with his physical problems."
She was annoyed but did not contradict me. The good news was that we did get him to leave the Depends on. It was a minor victory which I immediately relayed to my sisters. We would use the opportunity presented here to get dad accustomed to disposable briefs. That night I went to the store and got a large bag of pull up disposable briefs. Something good had finally come out of Dad's stroke. It might be the only thing.
Over the next few days we would all encounter this insensitive attitude from the staff. It was as if they either had no experience with Alzheimer's patients or simply no longer cared about the feelings of the patients. Perhaps, they felt that they didn't need to be that compassionate since all of their patients were temporary. My sisters and I found it alarming and rather shameful.
Mike came and joined me later that evening. Several times, Dad became agitated. He demanded his shoes insisting, "I'm going home right now!" I was so glad to have Mike there. He has a wonderful way with Dad.
"Dad, do you remember you had a stroke?" Mike asked calmly.
"No", Dad replied with a look of horror. "I don't remember any of that..."
"Yes", Mike explained, "You have been in the hospital for several days. You couldn't talk or stand for the first three. Your memory is not so good either."
"This is terrible", Dad said with a despairing tone.
"Well, here is something interesting...you haven't known me for very long but you always remember my name. You have known her" (pointing to me) "her whole life but for some reason can't remember her name. My point is that the memories are in there. We just have to figure out how to bring them out".
Dad nodded. He seemed to somewhat accept the situation for the moment.
(For some reason he would take Mike at his word but when I tried to explain this to him he sometimes responded in a tone of superiority, "Oh I did NOT!" or "I'm fine. Let's go!" Mike speculated that it was a "guy thing". Somehow it was less emasculating to accept any physical issue from another man than it was from a tiny woman.)
Dad's demands to leave, attempts to walk out on his own and his combative and stubborn attitude made him very difficult to work with and extremely unpopular with the staff. His insistence that he could walk on his own was a big problem, particularly given the slow response of the nurses when his bed alarm would sound indicating he was trying to get out of bed. Our family had no choice but to tag team sitting with him round the clock and because we all had jobs we had no choice but to hire senior sitters for the hours none of our family could be there. It was an exhausting schedule. The staff finally became so exasperated the doctor on staff prescribed Dad an antipsychotic to level him out enough that he could sleep through the night. Although it did give the nurses a much needed break it also affected his emotions.
I arrived for my early morning Dad sitting shift on Sunday at 6:00 AM. When I first arrived he was sleeping. It would be a while yet before he would fully wake up, but seamless sitting was mandatory given his unpredictable behavior. He stirred a few times before 8:30. I would peek to see if he was actually awake or just dosing. A few times I asked, "You okay, Daddy?" or "You need to use the restroom?'
Finally, he woke up and was ready to sit up. I turned on a nature program and asked him a few basic questions:
Do you know why you are here? (no)
Do you know you had a stroke? (no)
What is your name? (Thomas J O'Houlihan)
What is your birthdate? (he might pause but always answered this correctly)
Where do you live? (Brooklyn, NY...his hometown. He was certain about this answer. For some reason he had forgotten Texas completely)
How many children do you have? (this answer varied. I decided to focus on this one.)
Selfishly, I was deeply troubled how many times he answered "I don't know" to questions about the number and names of his children. He had not said my name from his own natural memory in over a year. It was heartbreaking to have put so much time into his care every week, to be committed to his health, hygiene and well being but to not be a prominent memory. I had been reduced to someone who was familiar but not exactly known. Out of desperation I began several memory exercises, hoping the stroke had not wiped his memory of me completely.
I walked him through his five children (he was not sure how many he had), trying to help him recall the names and order of birth. I had said the names in order a few times from the time he woke up to try to jog his memory, "Hillary, Paula, Jenny...". Then I started walking him through starting with "Who is your oldest?" "Then who is next?" And when he got stuck "is the next one a boy or a girl?" He actually had trouble with Tom and Jenny. I wondered if part of that was a kind block that his mind performed because they were the ones who had passed on. Dad stalled out after Tom.
"Is that everyone? " I asked, trying not to betray the answer.
"I think there's one more", he said, hesitantly.
"You're right", I said, trying not to get my hopes up, "There is one more. Can you tell me who is your fifth child?"
He thought for a minute and said "B....B..."
My heart sunk. Was he going to say my nephew's name, "Bradley"?
"B...B...Bird?" he stammered with uncertainly.
I was stunned. "That's right Dad", I encouraged, my heart pounding with hope, "Your youngest is named after a bird. It's a spring bird. Do you remember what bird?"
He thought again and said "Robin?"
"That's right, Dad! I'm Robin!" I replied, unable to control the tears welling up.
"You're Robin?" Dad asked, and he lit up for a second.
I hugged him and told him how happy that made me. He started to cry. "I can't...I can't....how can I forget my own child?" he sobbed.
"But, Dad, you remembered! Do you know how happy you have made me. I knew it was in there somewhere. It's all still in there, we just have to keep working at it," I said, breaking into tears, myself.
"I am so sorry", he wept, "I'm so, so sorry...". His body convulsed as his anguish continued.
"Daddy, I love you. I'm not going anywhere. We're going to get through this, I promise!" I did my best to reassure him. I hugged him for a while and we both had a good cry together. Never before would I have guessed that my stoic father, who was not given to displays of emotion, would weep in my arms as I comforted him the way he did that morning.
To be continued...
Dad was transferred to a rehab hospital upon his discharge from the stroke ward. We were told he would need seven to ten days of rehab which would include physical therapy, occupational therapy and, hopefully, enough time for us to come up with a plan for round the clock care. Immediately it was clear, between me and my two sisters, we had very different ideas of what was right for Dad. This would take almost the entire stay to come to an agreement that satisfied everyone enough to be comfortable...at least for now.
After the transport left the hospital with Dad I loaded everything into the car and made my way to the facility. With any luck the staff would be sensitive to dementia patients having difficulty accepting assistance. Dad was still having trouble staying in reality. His short term memory would last minutes at best. His long term wasn't much better. Even worse, dad was still combative; he would insist he was going home, demand it, start to try to get up so he could walk out and we would have to restrain him until someone, usually me or one of my sisters, could talk some sense into him. None of this changed when he entered the rehab facility.
I entered the automatic doors and went to the front desk and asked if my dad had arrived yet. A sweet faced woman in scrubs who sat at the nurses station said he had just been brought in and directed me to his room. I peeked in to see how he was handling everything. Although he was clearly not happy to be in another hospital it appeared that the nurses helping him were assisting him with a trip to the toilet. If there was paper work to sign, now would be a good time.
I went back to the front desk and again spoke to the woman in scrubs who turned out to be a nurse named Patty. She walked me through all of the paper work. After about the fifth page I wished I had been able to attend Dad's doctor's appointments. The few things I did know for sure were relayed to me by word of mouth as they had been relevant. Now I was being asked for details I, quite frankly, didn't know. I winged it and asked Patty to hold out any pages I wasn't sure about. Then came a page that really made me uncomfortable. It was a waiver clearing the facility of liability if Dad should have an accident. No way was I going to sign that. I asked her to hold that out for my sisters' opinions, sure that they, too, would be unwilling to sign away our rights to sue if the facility was negligent.
I made my way back to Dad's room to check if the staff had been successful getting him to the toilet on time. They were not. Dad was on the bed and he was reaching into his sweat pants trying to pull out the adult diaper they had put on him. It was clear this solution felt strange and uncomfortable for him. A nurse was loudly trying to convince him to keep it on. It was time for me to intervene.
"Dad, I know that is uncomfortable but you have had an issue with bladder control", I explained, "I brought you two pairs of briefs but those are already soiled. If you can please keep this on, I will go get more briefs."
One of the nurses loudly chimed in, "Yes, Mr. Houlihan, you have to keep the diaper on!"
I shot her a quick look to let her know she wasn't helping and corrected. "DOCTOR Houlihan, ma'am", and leaned in and whispered, "Kindly refrain from referring to it as a 'diaper'. This is hard enough on his dignity without humiliating him with his physical problems."
She was annoyed but did not contradict me. The good news was that we did get him to leave the Depends on. It was a minor victory which I immediately relayed to my sisters. We would use the opportunity presented here to get dad accustomed to disposable briefs. That night I went to the store and got a large bag of pull up disposable briefs. Something good had finally come out of Dad's stroke. It might be the only thing.
Over the next few days we would all encounter this insensitive attitude from the staff. It was as if they either had no experience with Alzheimer's patients or simply no longer cared about the feelings of the patients. Perhaps, they felt that they didn't need to be that compassionate since all of their patients were temporary. My sisters and I found it alarming and rather shameful.
Mike came and joined me later that evening. Several times, Dad became agitated. He demanded his shoes insisting, "I'm going home right now!" I was so glad to have Mike there. He has a wonderful way with Dad.
"Dad, do you remember you had a stroke?" Mike asked calmly.
"No", Dad replied with a look of horror. "I don't remember any of that..."
"Yes", Mike explained, "You have been in the hospital for several days. You couldn't talk or stand for the first three. Your memory is not so good either."
"This is terrible", Dad said with a despairing tone.
"Well, here is something interesting...you haven't known me for very long but you always remember my name. You have known her" (pointing to me) "her whole life but for some reason can't remember her name. My point is that the memories are in there. We just have to figure out how to bring them out".
Dad nodded. He seemed to somewhat accept the situation for the moment.
(For some reason he would take Mike at his word but when I tried to explain this to him he sometimes responded in a tone of superiority, "Oh I did NOT!" or "I'm fine. Let's go!" Mike speculated that it was a "guy thing". Somehow it was less emasculating to accept any physical issue from another man than it was from a tiny woman.)
Dad's demands to leave, attempts to walk out on his own and his combative and stubborn attitude made him very difficult to work with and extremely unpopular with the staff. His insistence that he could walk on his own was a big problem, particularly given the slow response of the nurses when his bed alarm would sound indicating he was trying to get out of bed. Our family had no choice but to tag team sitting with him round the clock and because we all had jobs we had no choice but to hire senior sitters for the hours none of our family could be there. It was an exhausting schedule. The staff finally became so exasperated the doctor on staff prescribed Dad an antipsychotic to level him out enough that he could sleep through the night. Although it did give the nurses a much needed break it also affected his emotions.
I arrived for my early morning Dad sitting shift on Sunday at 6:00 AM. When I first arrived he was sleeping. It would be a while yet before he would fully wake up, but seamless sitting was mandatory given his unpredictable behavior. He stirred a few times before 8:30. I would peek to see if he was actually awake or just dosing. A few times I asked, "You okay, Daddy?" or "You need to use the restroom?'
Finally, he woke up and was ready to sit up. I turned on a nature program and asked him a few basic questions:
Do you know why you are here? (no)
Do you know you had a stroke? (no)
What is your name? (Thomas J O'Houlihan)
What is your birthdate? (he might pause but always answered this correctly)
Where do you live? (Brooklyn, NY...his hometown. He was certain about this answer. For some reason he had forgotten Texas completely)
How many children do you have? (this answer varied. I decided to focus on this one.)
Selfishly, I was deeply troubled how many times he answered "I don't know" to questions about the number and names of his children. He had not said my name from his own natural memory in over a year. It was heartbreaking to have put so much time into his care every week, to be committed to his health, hygiene and well being but to not be a prominent memory. I had been reduced to someone who was familiar but not exactly known. Out of desperation I began several memory exercises, hoping the stroke had not wiped his memory of me completely.
I walked him through his five children (he was not sure how many he had), trying to help him recall the names and order of birth. I had said the names in order a few times from the time he woke up to try to jog his memory, "Hillary, Paula, Jenny...". Then I started walking him through starting with "Who is your oldest?" "Then who is next?" And when he got stuck "is the next one a boy or a girl?" He actually had trouble with Tom and Jenny. I wondered if part of that was a kind block that his mind performed because they were the ones who had passed on. Dad stalled out after Tom.
"Is that everyone? " I asked, trying not to betray the answer.
"I think there's one more", he said, hesitantly.
"You're right", I said, trying not to get my hopes up, "There is one more. Can you tell me who is your fifth child?"
He thought for a minute and said "B....B..."
My heart sunk. Was he going to say my nephew's name, "Bradley"?
"B...B...Bird?" he stammered with uncertainly.
I was stunned. "That's right Dad", I encouraged, my heart pounding with hope, "Your youngest is named after a bird. It's a spring bird. Do you remember what bird?"
He thought again and said "Robin?"
"That's right, Dad! I'm Robin!" I replied, unable to control the tears welling up.
"You're Robin?" Dad asked, and he lit up for a second.
I hugged him and told him how happy that made me. He started to cry. "I can't...I can't....how can I forget my own child?" he sobbed.
"But, Dad, you remembered! Do you know how happy you have made me. I knew it was in there somewhere. It's all still in there, we just have to keep working at it," I said, breaking into tears, myself.
"I am so sorry", he wept, "I'm so, so sorry...". His body convulsed as his anguish continued.
"Daddy, I love you. I'm not going anywhere. We're going to get through this, I promise!" I did my best to reassure him. I hugged him for a while and we both had a good cry together. Never before would I have guessed that my stoic father, who was not given to displays of emotion, would weep in my arms as I comforted him the way he did that morning.
To be continued...
Friday, November 14, 2014
fall risk...(part 1)
Room 3101 [FALL RISK]. Room 3102 [FALL RISK]. Room 3103 [FALL RISK]. We continued down the hall of the hospital floor where they had moved Dad. This wing was specifically for stroke patients. It was alarming the number of rooms marked [FALL RISK]. Those rooms not marked were also not occupied. It was inevitable we would end up here. I will have to back track a bit to explain how we ended up in the stroke ward on a Sunday night.
Lately, I have been dealing with caregiver related depression. I know I am going through a low point when I start looking up the stages of Alzheimer's to see how long each stage generally lasts and fishing to see if we are getting close to the end of our journey. Then I think about how long I have been journaling as self therapy. I have only been writing a little over a year but it feels so much longer. I know Dad is at least at stage five but possibly at stage six depending on who you talk to. A few days ago I looked up the length of the stages. Stage five: 1.5 years. Stage six: 2.5 years. Stage 7: 1 to 2.5 years. My heart sunk. If he is only at stage five...this is a marathon I did not train to run. Likely we have a minimum of three more years of Dad getting progressively worse until we are eventually taking care of his shell. This time last year Dad seemed considerably more optimistic. He would walk the backyard slowly but unassisted, engage in lively (if repetitive) conversation, argue about hygiene but eventually cooperate with a little incentive from the bakery. Now he only goes outside to wave goodbye or sit on the porch. He stubbornly refuses his cane or rolling walker but can't get around without using the walls and furniture to support himself. For some reason he rejects these aids as a sign of weakness, offended at the thought that he might not be able to care for himself.
The original idea to start writing my thoughts on the progression of Dad's disease started about four years ago but I put it off feeling that it was a bit self indulgent, even arrogant to think I really had anything useful to say. I finally gave in when Dad seemed to be firmly in the moderate phase of the disease September last year. We have definitely had a roller coaster ride as a family since then. Funny how I thought the disease would be the focus of this journal but it really seems to be the the binding constant of an ever changing story about the caregivers rather than the patient. All of us cope in different ways. We have our good days and bad days. Some weeks we work like a well oiled machine and others we are ready to throttle each other or throw up our hands and walk away.
Patterns also change. Since Tom's death we are back to three shifts a week, each. Concern over dad's lack of exercise and unwillingness to leave his beloved recliner is at a new high. Dad doesn't remember to elevate his legs when he is in the recliner and because he is there for prolonged periods of time he gets edema in his calves, ankles and feet. This causes his skin to become tight and itchy especially on his left leg. He will scratch himself to the point of bleeding and sometimes will say he has to go to the restroom in order to privately dig at his leg and not have to listen to anyone telling him to stop. I have begun trimming his nails before each shower to keep him from scratching down to the bone. The first time I did this I joked about his long pinkie nail asking if he was try to grow a "coke scooper". My sisters enjoyed this little joke. Nail trimming is getting more and more important. He hates it but is always grateful once it is done. If he were allowed to keep his claws he would dig at his leg until he hit bone.
In the past four months Dad had gotten weaker and weaker. Each attempt to get him to shower or take his meds was becoming increasingly more difficult. The past three weeks it appeared the writing was on the wall. Dad defies any attempt at hygiene like a five year old trying to get his way. He insists that he showers every day, insulted at the implication that he does not. I tend to try to prove him wrong. Appealing to his sense of reason is quickly becoming pointless.
"You haven't showered in a week!"
"I most certainly have! I shower every day!" (This statement from Dad is never as fluid as it reads. It's stuttered, chopped and sometimes incomplete, but the message is loud and clear.)
"No you do not! You know how I know? I chose that outfit you are wearing last Saturday!"
These exchanges are repeated almost verbatim every week. When Dad realizes he can't talk his way out of it he turns his head, impatiently tapping the arm of his recliner, pondering his next argument. The past two attempts have ended with a grudging, "Okay, I'll do it but when I'm done you're gone."
"That's fine with me," I agree just as stubbornly, "As long as you shower I will be happy to leave once you are out".
He is never happy to hear that his terms are acceptable.
More and more I started finding him so weak on my nights that I would spend the night just to make sure his legs stayed elevated while he slept so he might have enough energy to move the next day. Mike, my constant supporter, will offer to take care of the Allison solo or even come over and spend the night as well. He keeps Dad company while I do laundry or dishes and helps me remind Dad to keep his feet up, even putting pillows under his calves for extra height. With Mike in the spare bedroom I take my place dosing on the couch. Occasionally, DAD wakes up in the middle of the night disoriented. I will hear him stir and then let out a startled "Uuuah!" as he wakes.
"You okay, Dad?" I ask in the dark.
"Paula?" he says sleepily.
"I'm Erin", I remind him gently.
"I gotta let buddy out", he says, struggling to get out of his recliner. I bring the rolling walker over to him for leverage but he rejects it at first. "I don't need that..." then after a few straining attempts to stand he has no choice but to take the offered help. Depending on how tired he is he may or may not use the walker to make his way to the back door to let out the dog and then go use the bathroom. I follow closely behind, acutely aware that even with me there if he begins to fall the odds of me being able to save him are slim.
On the nights that I chose to sleep there I informed Paula of my intentions. We both knew Dad's days with the illusion of independence were running out.
Two weeks ago I arrived for Friday shower night. Dad was more argumentative than usual and I was alarmed how weak he seemed. Nevertheless, I chose to continue to attempt hygiene since he had clearly not showered since the previous week. I put my cell phone in my pocket, ready to call for help if I should need it. Mike stayed with Allison in the kitchen preparing dinner and entertaining Buddy.
Dad began the ritual of preparing removing his socks, commenting on his swollen feet, pulling his pant leg over his knee so he could dig at his shin and then complain about what a mess it is, removing his watches (he wears one on each wrist. I remind him about them saying, "Ya wanna give me 'East Coast' and 'West Coast'?"), removing his outer shirt, pants, and finally hemming and hawing before giving me his t-shirt. As always I let out a playful "Aaaargh!" as he removed this last item because it still makes him laugh. I turned on the water and made sure it was appropriately warm before watching him make his way to the shower and allowing him to "do his thing in privacy".
I left the room and sat on the couch in the living area. Not thirty seconds had passed when I heard a noise like he had dropped his razor or a brush. Suspicious, I ran back into the bathroom and found him braced in the doorway of the toilet area, his legs shaking as he fought to remain standing. The shower door was open and the water still running. He had really tried to make it. I grabbed my phone and sent a one word text to Mike: "HELP".
Mike bolted into the room and positioned himself in front of Dad to keep him from falling forward while I remained behind him with trying to keep him from leaning too far to either side as we made our way back to the bed. His legs faultered beneath him a couple times. No way I could have helped him back to the bed by myself. Dad collapsed onto the bed and we positioned his feet up on the foam bed wedge. Next we helped him dress in clean scrubs. Shower would have to wait for another night.
Dad laid still while I searched for something on his bedroom TV to entertain him. I sent a text to Paula explaining what had happened. Mike brought dinner into the bedroom and we all camped out watching a boring movie that none of us were interested in.
"What are we doing in here", Dad asked from time to time.
"You almost fell", we explained. "We are staying in here while we keep your legs elevated".
Dad would sigh and roll his eyes. "We don't need to stay in here. Lets go out to the living room", he protested.
"No, this is good, Dad", I insisted. "Your legs need to stay up for now". It was frustrating for all of us.
Paula called after a while. "What happened?" she asked.
"We tried to get Dad to shower but he almost fell while he was in the bathroom", I explained and then detailed for her the events leading up to our positioning on the bed.
Paula, being the medical professional of my siblings, speculated what might have caused Dad's sudden weakness. She felt it could be heart failure related to the DVT that was causing the swelling in his legs and that we should keep both his legs and chest elevated in the "recliner" position. This new development could put him at risk for an embolism. Keeping him in the correct position should be easy enough as long as someone stayed with him. We agreed I would need to spend the night. Paula was grateful I was staying.
We positioned Dad on the recliner and, fortunately for me, Dad did not argue that he needed to use his walker during the night. He made two trips to the bathroom and to let Buddy out. If I had not been there to remind him he would have returned to the sitting position without reclining. I wondered how many nights I would have to spend like this.
Morning came and Dad was resting peacefully, still reclined with his legs elevated. I decided it was time to go. Bradley would be here soon and it didn't look like Dad was going anywhere. I softly told him, "Dad, I'm gonna go. You keep your feet up, okay?" He smiled and nodded. I gave him a kiss on the forehead and started to walk away.
"Hey...come here." he said weakly with a smile.
"What?" I asked and walked back. Dad held out his arms for a hug. I hugged him and told him I would be back later. I guess he was glad I stayed.
To be continued...
Lately, I have been dealing with caregiver related depression. I know I am going through a low point when I start looking up the stages of Alzheimer's to see how long each stage generally lasts and fishing to see if we are getting close to the end of our journey. Then I think about how long I have been journaling as self therapy. I have only been writing a little over a year but it feels so much longer. I know Dad is at least at stage five but possibly at stage six depending on who you talk to. A few days ago I looked up the length of the stages. Stage five: 1.5 years. Stage six: 2.5 years. Stage 7: 1 to 2.5 years. My heart sunk. If he is only at stage five...this is a marathon I did not train to run. Likely we have a minimum of three more years of Dad getting progressively worse until we are eventually taking care of his shell. This time last year Dad seemed considerably more optimistic. He would walk the backyard slowly but unassisted, engage in lively (if repetitive) conversation, argue about hygiene but eventually cooperate with a little incentive from the bakery. Now he only goes outside to wave goodbye or sit on the porch. He stubbornly refuses his cane or rolling walker but can't get around without using the walls and furniture to support himself. For some reason he rejects these aids as a sign of weakness, offended at the thought that he might not be able to care for himself.
The original idea to start writing my thoughts on the progression of Dad's disease started about four years ago but I put it off feeling that it was a bit self indulgent, even arrogant to think I really had anything useful to say. I finally gave in when Dad seemed to be firmly in the moderate phase of the disease September last year. We have definitely had a roller coaster ride as a family since then. Funny how I thought the disease would be the focus of this journal but it really seems to be the the binding constant of an ever changing story about the caregivers rather than the patient. All of us cope in different ways. We have our good days and bad days. Some weeks we work like a well oiled machine and others we are ready to throttle each other or throw up our hands and walk away.
Patterns also change. Since Tom's death we are back to three shifts a week, each. Concern over dad's lack of exercise and unwillingness to leave his beloved recliner is at a new high. Dad doesn't remember to elevate his legs when he is in the recliner and because he is there for prolonged periods of time he gets edema in his calves, ankles and feet. This causes his skin to become tight and itchy especially on his left leg. He will scratch himself to the point of bleeding and sometimes will say he has to go to the restroom in order to privately dig at his leg and not have to listen to anyone telling him to stop. I have begun trimming his nails before each shower to keep him from scratching down to the bone. The first time I did this I joked about his long pinkie nail asking if he was try to grow a "coke scooper". My sisters enjoyed this little joke. Nail trimming is getting more and more important. He hates it but is always grateful once it is done. If he were allowed to keep his claws he would dig at his leg until he hit bone.
In the past four months Dad had gotten weaker and weaker. Each attempt to get him to shower or take his meds was becoming increasingly more difficult. The past three weeks it appeared the writing was on the wall. Dad defies any attempt at hygiene like a five year old trying to get his way. He insists that he showers every day, insulted at the implication that he does not. I tend to try to prove him wrong. Appealing to his sense of reason is quickly becoming pointless.
"You haven't showered in a week!"
"I most certainly have! I shower every day!" (This statement from Dad is never as fluid as it reads. It's stuttered, chopped and sometimes incomplete, but the message is loud and clear.)
"No you do not! You know how I know? I chose that outfit you are wearing last Saturday!"
These exchanges are repeated almost verbatim every week. When Dad realizes he can't talk his way out of it he turns his head, impatiently tapping the arm of his recliner, pondering his next argument. The past two attempts have ended with a grudging, "Okay, I'll do it but when I'm done you're gone."
"That's fine with me," I agree just as stubbornly, "As long as you shower I will be happy to leave once you are out".
He is never happy to hear that his terms are acceptable.
More and more I started finding him so weak on my nights that I would spend the night just to make sure his legs stayed elevated while he slept so he might have enough energy to move the next day. Mike, my constant supporter, will offer to take care of the Allison solo or even come over and spend the night as well. He keeps Dad company while I do laundry or dishes and helps me remind Dad to keep his feet up, even putting pillows under his calves for extra height. With Mike in the spare bedroom I take my place dosing on the couch. Occasionally, DAD wakes up in the middle of the night disoriented. I will hear him stir and then let out a startled "Uuuah!" as he wakes.
"You okay, Dad?" I ask in the dark.
"Paula?" he says sleepily.
"I'm Erin", I remind him gently.
"I gotta let buddy out", he says, struggling to get out of his recliner. I bring the rolling walker over to him for leverage but he rejects it at first. "I don't need that..." then after a few straining attempts to stand he has no choice but to take the offered help. Depending on how tired he is he may or may not use the walker to make his way to the back door to let out the dog and then go use the bathroom. I follow closely behind, acutely aware that even with me there if he begins to fall the odds of me being able to save him are slim.
On the nights that I chose to sleep there I informed Paula of my intentions. We both knew Dad's days with the illusion of independence were running out.
Two weeks ago I arrived for Friday shower night. Dad was more argumentative than usual and I was alarmed how weak he seemed. Nevertheless, I chose to continue to attempt hygiene since he had clearly not showered since the previous week. I put my cell phone in my pocket, ready to call for help if I should need it. Mike stayed with Allison in the kitchen preparing dinner and entertaining Buddy.
Dad began the ritual of preparing removing his socks, commenting on his swollen feet, pulling his pant leg over his knee so he could dig at his shin and then complain about what a mess it is, removing his watches (he wears one on each wrist. I remind him about them saying, "Ya wanna give me 'East Coast' and 'West Coast'?"), removing his outer shirt, pants, and finally hemming and hawing before giving me his t-shirt. As always I let out a playful "Aaaargh!" as he removed this last item because it still makes him laugh. I turned on the water and made sure it was appropriately warm before watching him make his way to the shower and allowing him to "do his thing in privacy".
I left the room and sat on the couch in the living area. Not thirty seconds had passed when I heard a noise like he had dropped his razor or a brush. Suspicious, I ran back into the bathroom and found him braced in the doorway of the toilet area, his legs shaking as he fought to remain standing. The shower door was open and the water still running. He had really tried to make it. I grabbed my phone and sent a one word text to Mike: "HELP".
Mike bolted into the room and positioned himself in front of Dad to keep him from falling forward while I remained behind him with trying to keep him from leaning too far to either side as we made our way back to the bed. His legs faultered beneath him a couple times. No way I could have helped him back to the bed by myself. Dad collapsed onto the bed and we positioned his feet up on the foam bed wedge. Next we helped him dress in clean scrubs. Shower would have to wait for another night.
Dad laid still while I searched for something on his bedroom TV to entertain him. I sent a text to Paula explaining what had happened. Mike brought dinner into the bedroom and we all camped out watching a boring movie that none of us were interested in.
"What are we doing in here", Dad asked from time to time.
"You almost fell", we explained. "We are staying in here while we keep your legs elevated".
Dad would sigh and roll his eyes. "We don't need to stay in here. Lets go out to the living room", he protested.
"No, this is good, Dad", I insisted. "Your legs need to stay up for now". It was frustrating for all of us.
Paula called after a while. "What happened?" she asked.
"We tried to get Dad to shower but he almost fell while he was in the bathroom", I explained and then detailed for her the events leading up to our positioning on the bed.
Paula, being the medical professional of my siblings, speculated what might have caused Dad's sudden weakness. She felt it could be heart failure related to the DVT that was causing the swelling in his legs and that we should keep both his legs and chest elevated in the "recliner" position. This new development could put him at risk for an embolism. Keeping him in the correct position should be easy enough as long as someone stayed with him. We agreed I would need to spend the night. Paula was grateful I was staying.
We positioned Dad on the recliner and, fortunately for me, Dad did not argue that he needed to use his walker during the night. He made two trips to the bathroom and to let Buddy out. If I had not been there to remind him he would have returned to the sitting position without reclining. I wondered how many nights I would have to spend like this.
Morning came and Dad was resting peacefully, still reclined with his legs elevated. I decided it was time to go. Bradley would be here soon and it didn't look like Dad was going anywhere. I softly told him, "Dad, I'm gonna go. You keep your feet up, okay?" He smiled and nodded. I gave him a kiss on the forehead and started to walk away.
"Hey...come here." he said weakly with a smile.
"What?" I asked and walked back. Dad held out his arms for a hug. I hugged him and told him I would be back later. I guess he was glad I stayed.
To be continued...
Monday, September 1, 2014
Half....(part one)
Tom was gone...in an instant...now I have two living sisters and half my Dad. In just over ten years I have lost half my birth family: the two youngest of my four older siblings, my mother, and slowly, painfully, my father. It has been two months since that terrible accident that took our Tom so I will do my best to recall for my readers the weeks that followed, how our roles have changed, how our views of care giving have morphed, and how our sense of responsibility has become more acute.
We continued our drive to the airport to pick up Kelly. No one said a word for several minutes. Mike held my left hand and Allison held my right. I broke the silence. "How will we ever tell Kelly? She is expecting a happy home coming. This is not okay."
"Let's get her bags and act normal", Mike suggested, "We'll find somewhere to sit and then we will tell her".
More deafening silence followed for several minutes. I wondered why I couldn't cry. My only brother was dead! What was wrong with me?
We arrived at the airport and waited for her at the international arrival gate. It seemed like forever. There was a food court right next to the gate so we found a table, sat and watched as one by one the passengers exited. Finally, we saw Kelly, tan and smiling, rolling out. She waved and made her way toward us. Kelly saw my eyes tearing up and exclaimed, "Aaw, Mom!" and hugged me. Truthfully, I think they really were tears of happiness to see her safely home.
"Sweetie", I began, "We have something to tell you...." and explained what had happened.
"Why didn't anyone tell me before?" Kelly asked, still stunned.
"It just happened. You were already in the air when his plane crashed", I explained, "We were on our way here when we found out". It was a heavy thing to come home to. So unfair. We rolled off to the car and headed home.
While Mike drove I began messaging Paula. Did Hillary know yet? Paula said she was still trying to reach her. Hillary's cell phone was going straight to voicemail. The message box on her home phone was full. No one had her boyfriend's phone number. Paula racked her brain to remember his full name.
Next I called Sara. We talked for over an hour. Sara asked if I needed her to come. She and her family lived in Colorado and had just moved into a new home a day earlier. I knew she was exhausted. On top of that, apparently I was not that upset. I had known for hours and no tears, no lashing out, nothing.
"Nah, it's okay. I know you have a lot going on. It's sweet of you to offer but I'll be okay", I reassured her.
"Okay, well if you need me, you know I'll drop everything and hop in the car", she replied. I knew she meant it.
Then I called Ann.
"Oh, Erin, I'm so sorry. Are you okay?" she asked. I couldn't believe she was thinking of other people's pain at a time like this. It was her husband that was killed. What a rare and good person.
"I'm fine, honey. How are you and Casey?" I asked.
"I don't know what we're going to do. Tom was my rock. He was Casey's best friend. I can't imagine life without him", she lamented. There really was no comfort I could offer her other than a sympathetic ear and reassurance that we would all help her through this.
After we hung up my phone rang again. It was Candace, my walking buddy and the mother of Allison's best friend, Heather. Candace was crying uncontrollably.
"Heather just told me what happened! That's so horrible! I'm so sorry!" she sobbed.
Now I was getting unnerved. Candace had never met my brother but she was taking this much harder than me.
"It's okay, really! I'm fine!" I told her.
"Aren't you upset?" she asked, surprised at how composed I seemed.
"Well, yeah, I'm upset", I responded (God, I hope I'm upset! What the hell is wrong with me?) "I just don't grieve like that. Actually, I'm kind of surprised myself by how level I am right now."
I finished talking to Candace and called Paula. "Have you been able to reach Hillary yet?" I asked.
"No, I have left a few messages. I hope we can reach her tonight. I don't want her to find out on the news", she said.
"Oh, God, I hadn't even thought about that!" I replied, "Even broken, his plane is pretty easy to recognize. If they show the plane and she sees it, she will freak."
"Do you think we should go over and tell Dad tonight?" she asked.
"Only if we find Hillary. I think the three of us should tell him together", I said after some thought. "I really don't see any point in telling him tonight. If he doesn't retain it we will have to do it all over again tomorrow. Better to do it when he doesn't have to be alone." She agreed, so that was the plan.
I only had one more thing I wanted to do before calling it a night. I kept asking Mike the time trying to determine whether his parents in Europe would be awake. Mike's parents are wonderfully supportive. They have been like parents to me as well. I wanted to reach them as soon as possible to assure them that Kelly made it home safely and to tell them what had happened. We definitely didn't want them hearing from a third party. After all, they had know Tom since he was twelve. Better to hear it from us. Starting at 11:00 PM I began trying to Skype them. I must have tried ten times. No answer. Mike kept asking me why it was so important to me to reach them that night. I wasn't sure, I just knew I really wanted to talk to them. It didn't matter anyway. They weren't answering. It would have to wait until tomorrow.
I went to bed. Sometime around 2:00 AM Paula finally was able to reach Hillary to break the news. Hillary was inconsolable. (Seriously...what was wrong with me???)
To be continued...
We continued our drive to the airport to pick up Kelly. No one said a word for several minutes. Mike held my left hand and Allison held my right. I broke the silence. "How will we ever tell Kelly? She is expecting a happy home coming. This is not okay."
"Let's get her bags and act normal", Mike suggested, "We'll find somewhere to sit and then we will tell her".
More deafening silence followed for several minutes. I wondered why I couldn't cry. My only brother was dead! What was wrong with me?
We arrived at the airport and waited for her at the international arrival gate. It seemed like forever. There was a food court right next to the gate so we found a table, sat and watched as one by one the passengers exited. Finally, we saw Kelly, tan and smiling, rolling out. She waved and made her way toward us. Kelly saw my eyes tearing up and exclaimed, "Aaw, Mom!" and hugged me. Truthfully, I think they really were tears of happiness to see her safely home.
"Sweetie", I began, "We have something to tell you...." and explained what had happened.
"Why didn't anyone tell me before?" Kelly asked, still stunned.
"It just happened. You were already in the air when his plane crashed", I explained, "We were on our way here when we found out". It was a heavy thing to come home to. So unfair. We rolled off to the car and headed home.
While Mike drove I began messaging Paula. Did Hillary know yet? Paula said she was still trying to reach her. Hillary's cell phone was going straight to voicemail. The message box on her home phone was full. No one had her boyfriend's phone number. Paula racked her brain to remember his full name.
Next I called Sara. We talked for over an hour. Sara asked if I needed her to come. She and her family lived in Colorado and had just moved into a new home a day earlier. I knew she was exhausted. On top of that, apparently I was not that upset. I had known for hours and no tears, no lashing out, nothing.
"Nah, it's okay. I know you have a lot going on. It's sweet of you to offer but I'll be okay", I reassured her.
"Okay, well if you need me, you know I'll drop everything and hop in the car", she replied. I knew she meant it.
Then I called Ann.
"Oh, Erin, I'm so sorry. Are you okay?" she asked. I couldn't believe she was thinking of other people's pain at a time like this. It was her husband that was killed. What a rare and good person.
"I'm fine, honey. How are you and Casey?" I asked.
"I don't know what we're going to do. Tom was my rock. He was Casey's best friend. I can't imagine life without him", she lamented. There really was no comfort I could offer her other than a sympathetic ear and reassurance that we would all help her through this.
After we hung up my phone rang again. It was Candace, my walking buddy and the mother of Allison's best friend, Heather. Candace was crying uncontrollably.
"Heather just told me what happened! That's so horrible! I'm so sorry!" she sobbed.
Now I was getting unnerved. Candace had never met my brother but she was taking this much harder than me.
"It's okay, really! I'm fine!" I told her.
"Aren't you upset?" she asked, surprised at how composed I seemed.
"Well, yeah, I'm upset", I responded (God, I hope I'm upset! What the hell is wrong with me?) "I just don't grieve like that. Actually, I'm kind of surprised myself by how level I am right now."
I finished talking to Candace and called Paula. "Have you been able to reach Hillary yet?" I asked.
"No, I have left a few messages. I hope we can reach her tonight. I don't want her to find out on the news", she said.
"Oh, God, I hadn't even thought about that!" I replied, "Even broken, his plane is pretty easy to recognize. If they show the plane and she sees it, she will freak."
"Do you think we should go over and tell Dad tonight?" she asked.
"Only if we find Hillary. I think the three of us should tell him together", I said after some thought. "I really don't see any point in telling him tonight. If he doesn't retain it we will have to do it all over again tomorrow. Better to do it when he doesn't have to be alone." She agreed, so that was the plan.
I only had one more thing I wanted to do before calling it a night. I kept asking Mike the time trying to determine whether his parents in Europe would be awake. Mike's parents are wonderfully supportive. They have been like parents to me as well. I wanted to reach them as soon as possible to assure them that Kelly made it home safely and to tell them what had happened. We definitely didn't want them hearing from a third party. After all, they had know Tom since he was twelve. Better to hear it from us. Starting at 11:00 PM I began trying to Skype them. I must have tried ten times. No answer. Mike kept asking me why it was so important to me to reach them that night. I wasn't sure, I just knew I really wanted to talk to them. It didn't matter anyway. They weren't answering. It would have to wait until tomorrow.
I went to bed. Sometime around 2:00 AM Paula finally was able to reach Hillary to break the news. Hillary was inconsolable. (Seriously...what was wrong with me???)
To be continued...
Monday, February 17, 2014
Mike, my Valentine: a detour through the relationship that keeps me sane
In honor of Valentine's day it is important to recognize and appreciate the relationships that help us endure the burden of caregiving. For this reason I am going to stray from the topic of Alzheimer's and talk about my husband Mike, the love of my life and the man who has stayed by my side through the hardest of times and will drop everything at a moment's notice to offer his assistance and support.
I don't know how many other people do this but I buy cards for special occasions way in advance so I always have something appropriate on hand in case I don't have time to go to the store or in the event the right moment just comes up. This has been a habit for decades, really since my early twenties. I have birthday, romance, get well soon, hang-in-there, anniversary, and even various comical holiday cards stashed away and ready for anything. There is only one card I can remember giving unexpectedly that really sticks in my mind as a life story. It was a card I gave my husband when we were first dating. In fact I gave it so unexpectedly, I didn't even fill it out.
Mike and I figured out within weeks after we began dating that we were a great match. Both of us had been burned in the past and, although I think we both knew we were falling in love early on, neither of us wanted to be the first to say it so we danced around it for a while. We had been dating about three months when he gave me a card. Before I opened it he prefaced it by saying, "I think you are going to understand this...most people wouldn't, but I think you will".
I opened the card. On the front were two little Play-doh aliens and one of them was saying, "Zeelple florb eep kligoo!" I opened the card and on the inside was a single question, "Narboza?"
I looked up at his hopeful face and could hardly contain my excitement when I said, "Wait right here....", got up, left the room and a bewildered Mike to go get something.
I came back and handed him a card and told him, "I bought this for you three weeks ago but wasn't sure if you would get it".
He opened the envelope, obviously puzzled until he pulled out the card.
"Oh my god!" he exclaimed.
On the front of the card were two little Play-Doh aliens and one was saying "Zeeple florb eep kligoo!"....the only difference between his card and mine was that mine had a boarder. I guess they made two versions but used same picture and same message.
If there was any doubt before then, it disappeared at that moment. This was it. As the years have gone by we have discovered all kinds of things about each other completely by accident that have just underlined this initial discovery. Most of the time it was just little things such as discovering that our views on religion, politics and family, while not always identical are completely compatible.
We dated for a year and in 2000 on Thanksgiving he proposed to me in front of both of our families with my daughter on his knee holding a ring and saying, "Mike wants to know if he can be my Daddy". I couldn't imagine a better proposal. We married five months later. I remember walking down the isle beside my dad and seeing Mike standing at the front waiting for me. "There's my friend!" I thought. That is what he has always been first and foremost...my best friend.
Mike and I have known each other since childhood. We grew up in the same neighborhood and knew many of the same people. Both of our fathers are doctors so we had a wide variety of medical contacts making health care very convenient. When Allison was born, Mike sat at my head talking me through the c-section while our mothers stood in the doorway right outside the delivery room. I will never forget how surreal it was after knowing him most of my life to hear his voice saying, "Okay, there she is", and looking at me, "Do you here that? That's our baby...and our moms are hugging each other in the hall".
Once, still fairly early in our marriage I had been stuck home one day with a virus and I noticed on the cable guide channel that later in the day an awesome movie marathon would be playing. Anticipating the marathon I popped in a tape of another great movie, Midnight in the Garden of Good and Evil, to pass the time until it began. The marathon started, I switched to cable and the tape automatically ejected. I fell asleep on the couch when the marathon was over and woke up to a kiss from Mike, having just arrived home from a long day at work. He saw the cover of the tape on the coffee table and said, "You watched Midnight in the Garden of Good and Evil today? What a great movie...." then he saw the tape jutting out of the VCR, pulled it out and changed his tone, "This tape is only half played?! What made you stop the movie?" Mike asked in feigned horror.
"I was just waiting for another movie to start", I began, but he interrupted.
"You stopped Midnight in the Garden of Good and Evil, a Clint Eastwood directed movie to watch something else??? What could possibly have trumped THIS movie??" he demanded.
"Godfather marathon", I said frankly.
"....oh....good...you know the rules", he replied with a sigh of relief. This was one of those "I knew there was a reason I married you" moments, and we had a good laugh.
Neither of us are particularly closed minded on world issues and when we do disagree we are willing to hear each other out. We are both adventurous eaters enjoying a wide variety of flavors and experiences. I introduced Mike to sushi and he quickly became a connoisseur, seeking out new sushi places to sample. Mike introduced me and our girls to Pho, something I had never tried before but now I can't get enough. The little surprises continue.
I love when we find little ways to relate to each other that just come to us out of the clear blue and seem so obvious once discovered that we wonder why it took us so long to see the correlation.
Mike worked retail for the first ten years of our marriage and during holidays his hours could be oppressive. Our first Christmas season together I told him if they didn't let him off work I would have to picket his store. He thought I was joking. Kelly and I made posters, went to the mall and stood outside his store. The posters read "All work and no play makes Mike a tired boy!" and "Daddy come home!" his co-workers and customers notice before he did along with other people in the mall. When Mike finally saw us he came out and hugged us. "You guys are crazy!" he laughed, enjoying our little joke. He told us later that his regional manager heard about it, called him and said "I wish someone loved me that much". It became our annual joke. We always made sure to show up when he least expected it. It was a tradition that we loved to plan and have really missed now that he has better hours and works wholesale.
We have so much fun together...but marriage is not all fun and romance. The tough times are what tempered our relationship, making it stronger with each hurdle and closer with each heartbreak.
Some of our toughest times were caused by the recession. I would be hired for a job only to get laid off within a few months. I remember after my third job loss coming home, completely dejected. Mike hugged me and asked if I needed anything. Yes, a relaxing bath would be good. He drew the bath for me, put a towel in the drier so it would be warm when I was ready to get out, and let me soak for a few minutes...then he came in and sat down. I finally broke down and started to cry. Mike held my hand for a minute but decided that wasn't quite enough...he climbed into the tub fully clothed and held me while I laughed and sobbed at the same time. With one unexpected gesture the disappointment turned into a wonderful evening I will never forget. He has a way of taking me by surprise at just the right time.
Mike is a born comedian, constantly making people laugh and causing people to ask me, "Is he like this at home?" In fact, people asked it so often when he was working retail that he frequently called me in the middle of the day and said, "Honey, you're on speaker, answer the question.." which was my cue to say, "Yes! He's like that at home!" (I would hear his customer's laughing in the background.) "Thank you, baby!" he would say giggling at our little on running joke.
We have so many memories: our honeymoon in Jamaica, trips to Florida, stay-cations when we needed a break but were too poor to travel, holidays, children, buying our house, fixing our credit, school projects, achievement awards, employment rejections, cars, household repairs, losing my mom, losing Jenny, his mother's illness and, of course, my father's illness. Through it all we have had so many moments when we connect and know everything will be alright. We are a team. Mike calls these moments "Narbozas"...the ultimate answer to everything, our private term for our connection.
Recently he asked me, "How many Narbozas do you think we've had?"
"Oh, I don't know", I replied, "Too many to count. Narboza has become our 'I love you'"
"It has", he agreed. "Narboza."
"Narboza", I replied.
Happy Valentine's Day (a little belated)!
To be continued...
I don't know how many other people do this but I buy cards for special occasions way in advance so I always have something appropriate on hand in case I don't have time to go to the store or in the event the right moment just comes up. This has been a habit for decades, really since my early twenties. I have birthday, romance, get well soon, hang-in-there, anniversary, and even various comical holiday cards stashed away and ready for anything. There is only one card I can remember giving unexpectedly that really sticks in my mind as a life story. It was a card I gave my husband when we were first dating. In fact I gave it so unexpectedly, I didn't even fill it out.
Mike and I figured out within weeks after we began dating that we were a great match. Both of us had been burned in the past and, although I think we both knew we were falling in love early on, neither of us wanted to be the first to say it so we danced around it for a while. We had been dating about three months when he gave me a card. Before I opened it he prefaced it by saying, "I think you are going to understand this...most people wouldn't, but I think you will".
I opened the card. On the front were two little Play-doh aliens and one of them was saying, "Zeelple florb eep kligoo!" I opened the card and on the inside was a single question, "Narboza?"
I looked up at his hopeful face and could hardly contain my excitement when I said, "Wait right here....", got up, left the room and a bewildered Mike to go get something.
I came back and handed him a card and told him, "I bought this for you three weeks ago but wasn't sure if you would get it".
He opened the envelope, obviously puzzled until he pulled out the card.
"Oh my god!" he exclaimed.
If there was any doubt before then, it disappeared at that moment. This was it. As the years have gone by we have discovered all kinds of things about each other completely by accident that have just underlined this initial discovery. Most of the time it was just little things such as discovering that our views on religion, politics and family, while not always identical are completely compatible.
We dated for a year and in 2000 on Thanksgiving he proposed to me in front of both of our families with my daughter on his knee holding a ring and saying, "Mike wants to know if he can be my Daddy". I couldn't imagine a better proposal. We married five months later. I remember walking down the isle beside my dad and seeing Mike standing at the front waiting for me. "There's my friend!" I thought. That is what he has always been first and foremost...my best friend.
Mike and I have known each other since childhood. We grew up in the same neighborhood and knew many of the same people. Both of our fathers are doctors so we had a wide variety of medical contacts making health care very convenient. When Allison was born, Mike sat at my head talking me through the c-section while our mothers stood in the doorway right outside the delivery room. I will never forget how surreal it was after knowing him most of my life to hear his voice saying, "Okay, there she is", and looking at me, "Do you here that? That's our baby...and our moms are hugging each other in the hall".
Once, still fairly early in our marriage I had been stuck home one day with a virus and I noticed on the cable guide channel that later in the day an awesome movie marathon would be playing. Anticipating the marathon I popped in a tape of another great movie, Midnight in the Garden of Good and Evil, to pass the time until it began. The marathon started, I switched to cable and the tape automatically ejected. I fell asleep on the couch when the marathon was over and woke up to a kiss from Mike, having just arrived home from a long day at work. He saw the cover of the tape on the coffee table and said, "You watched Midnight in the Garden of Good and Evil today? What a great movie...." then he saw the tape jutting out of the VCR, pulled it out and changed his tone, "This tape is only half played?! What made you stop the movie?" Mike asked in feigned horror.
"I was just waiting for another movie to start", I began, but he interrupted.
"You stopped Midnight in the Garden of Good and Evil, a Clint Eastwood directed movie to watch something else??? What could possibly have trumped THIS movie??" he demanded.
"Godfather marathon", I said frankly.
"....oh....good...you know the rules", he replied with a sigh of relief. This was one of those "I knew there was a reason I married you" moments, and we had a good laugh.
Neither of us are particularly closed minded on world issues and when we do disagree we are willing to hear each other out. We are both adventurous eaters enjoying a wide variety of flavors and experiences. I introduced Mike to sushi and he quickly became a connoisseur, seeking out new sushi places to sample. Mike introduced me and our girls to Pho, something I had never tried before but now I can't get enough. The little surprises continue.
I love when we find little ways to relate to each other that just come to us out of the clear blue and seem so obvious once discovered that we wonder why it took us so long to see the correlation.
Mike worked retail for the first ten years of our marriage and during holidays his hours could be oppressive. Our first Christmas season together I told him if they didn't let him off work I would have to picket his store. He thought I was joking. Kelly and I made posters, went to the mall and stood outside his store. The posters read "All work and no play makes Mike a tired boy!" and "Daddy come home!" his co-workers and customers notice before he did along with other people in the mall. When Mike finally saw us he came out and hugged us. "You guys are crazy!" he laughed, enjoying our little joke. He told us later that his regional manager heard about it, called him and said "I wish someone loved me that much". It became our annual joke. We always made sure to show up when he least expected it. It was a tradition that we loved to plan and have really missed now that he has better hours and works wholesale.
We have so much fun together...but marriage is not all fun and romance. The tough times are what tempered our relationship, making it stronger with each hurdle and closer with each heartbreak.
Some of our toughest times were caused by the recession. I would be hired for a job only to get laid off within a few months. I remember after my third job loss coming home, completely dejected. Mike hugged me and asked if I needed anything. Yes, a relaxing bath would be good. He drew the bath for me, put a towel in the drier so it would be warm when I was ready to get out, and let me soak for a few minutes...then he came in and sat down. I finally broke down and started to cry. Mike held my hand for a minute but decided that wasn't quite enough...he climbed into the tub fully clothed and held me while I laughed and sobbed at the same time. With one unexpected gesture the disappointment turned into a wonderful evening I will never forget. He has a way of taking me by surprise at just the right time.
Mike is a born comedian, constantly making people laugh and causing people to ask me, "Is he like this at home?" In fact, people asked it so often when he was working retail that he frequently called me in the middle of the day and said, "Honey, you're on speaker, answer the question.." which was my cue to say, "Yes! He's like that at home!" (I would hear his customer's laughing in the background.) "Thank you, baby!" he would say giggling at our little on running joke.
We have so many memories: our honeymoon in Jamaica, trips to Florida, stay-cations when we needed a break but were too poor to travel, holidays, children, buying our house, fixing our credit, school projects, achievement awards, employment rejections, cars, household repairs, losing my mom, losing Jenny, his mother's illness and, of course, my father's illness. Through it all we have had so many moments when we connect and know everything will be alright. We are a team. Mike calls these moments "Narbozas"...the ultimate answer to everything, our private term for our connection.
Recently he asked me, "How many Narbozas do you think we've had?"
"Oh, I don't know", I replied, "Too many to count. Narboza has become our 'I love you'"
"It has", he agreed. "Narboza."
"Narboza", I replied.
Happy Valentine's Day (a little belated)!
To be continued...
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