(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...
An ongoing journal of a caregiver relating the impact of caring for a parent with Alzheimer's on herself, family, friends, emotions and life.
Showing posts with label healing. Show all posts
Showing posts with label healing. Show all posts
Wednesday, November 19, 2014
my real name...
Monday, September 8, 2014
Half...(part two)
Q: How do you tell an Alzheimer's patient his only son has died?
A: Again...and again...and again...and again...until after the funeral. After that you never mention it again ever, ever, ever.
The morning after the crash I was up early. I had not quite wrapped my mind around what had happened. Tom was gone...I hadn't dreamed it. I sent a text to Paula asking what time she was going to Dad's so we could be together to tell him. She had spent most of the evening before with Ann and Casey. Given Ann's illness it would be best not to leave her alone for very long. She would need a lot of support to get through this terrible turn of events. Fortunately her brothers had arrived to relieve Paula and spend the night with her. Tom's life and exuberance had given life to that house. It must feel so empty without him. Paula said if we didn't hear from Hillary by 9:00 AM we should probably head over to Dad's. I agreed.
I dressed as if it were any other Sunday visit, Jeans and a t-shirt. I wondered how Dad would handle the news. Dad has always been so stoic. I had never actually seen him cry...not when Mom died or when Jenny died. How would he take Tom's death and would the Alzheimer's end up compounding his grief or actually relieving it? My fear for him was that it could trigger a downward spiral. Time would tell.
I kissed Mike goodbye and told him where I was going.
"Do you need me to go with you?" he offered.
"No, you stay here and look after the girls", I said after some consideration. "I may call you and ask you to come over later."
"Okay, Just let me know", he said hugging me tightly, "Narboza".
"Narboza", I replied and left.
I got there and Paula was already there. We hugged each other and quietly discussed how we should approach Dad. Should we all be there or have one of us tell him privately and then the others could come in for support? We agreed all of us should be with him when we broke the news.
We went in and greeted Dad with hugs and kisses. He was happy to see us both. I put on a movie to distract him while we busied ourselves with cleaning. Dad would probably have visitors all week and perhaps even overnight guests from out of town, best to get the house in order. Soon we were joined by Bradley, his wife and daughter.
An hour went by and Hillary had not yet left her house. Still overwhelmed, she was not up to coming over. It would fall on me and Paula to tell Dad. We both sat down on chairs in front of him.
"Dad, something has happened that we need to tell you about." Paula began, "Tom was flying his plane yesterday....." she paused, "There was an accident....his plane crashed...and Tom died in the crash." As she said this I reached over and held his arm gently.
I could see the comprehension slowly drain his face. "Wait", he said, not sure if he heard correctly, "Say that again, who died?"
"Tom. He crashed his plane." Dad appeared to deflate in front of us.
"This is my fault", he said regretfully.
"NO, it wasn't your fault at all, Dad!" I said, "Tom was a sportsman, he was an experienced pilot and nothing could have kept him from flying".
"It's my fault", he muttered again. "Do they know what went wrong?"
"No, Dad, it's under investigation. Not sure if it was a mechanical failure or if something else went wrong. He was a good pilot...kind of doubting it was pilot error", Paula explained, "They won't release the body until tomorrow."
"Was there a fire", Dad asked.
"No fire. He just pancaked the plane", she said, "I'm so sorry, Dad."
"I just want to be alone", he told us.
He looked completely desolate. It was his "block out the world" look that I had seen a handful of times in my life. Dad looked so much older in that moment.
"Dad, we're going to be here all day", I told him, "We have to get the house ready".
Paula and I both hugged him and got up. We went to the kitchen. "Why don't I make him some lunch and see if he'll eat?" I asked her.
"That sounds like a good idea. I'm going to call and see if someone is still with Ann and Casey. We also need to go through photo albums for a memorial slideshow", she added.
I made dad a sandwich and a plate of sliced fruit and brought it to him. He didn't see terribly interested. Then Mike and Allison arrived and Dad brightened up.
"Hey! How's it going?" Dad asked.
"We're fine...you doing okay?" Mike asked.
"I'm wonderful!" Dad said smiling. He was not being sarcastic. His smile betrayed what had happened. Alzheimer's had wiped away the past hour already.
After chatting with Mike a bit and asking who Allison was, where she went to school, etc., they joined the rest preparing the house. Dad called me over and asked, "Why is everyone here?" thinking, I imagine, that it must be a party.
I called Paula over and we explained about the crash again.
"Why didn't anyone tell me?" Dad asked angrily.
"We did tell you", Paula said, "but for some reason the Alzheimer's isn't allowing your brain to file it properly".
It was news that would be broken to him over and over with the same questions, the same guilt, the same dejection. This was going to be a very long week. We would not be able to keep from talking about it around him until after the funeral.
Shortly after that second revelation everyone left to run errands: Mike went to the hardware store for a gardening tool, Bradley went to gather more pictures from his home, Paula went the the grocery store for sandwiches and food to feed the army of family that would be in and out for the next few days. I stayed with Dad.
After about a half hour the phone rang. Likely we would start getting calls now that all immediate family had been informed and Tom's name was finally released to the public.
I answered the phone. It was my Uncle Henry. He was the oldest of Dad's three younger brothers.
"Hi, who am I speaking to?" he began.
"I am Erin, who is this?" I asked.
"It's Uncle Henry, your Dad's brother", he responded. I thought it was funny at the time that he felt the need to clarify but we hadn't seen him since Mom died so I guess that wasn't inappropriate to say.
"Erin...how are you and everyone? We just heard", he said sympathetically.
"It really hasn't sunk in yet", I answered as honestly as I could.
We chatted for a minute or two and then he asked, "How's your father? Can I speak to him?"
"Dad is fine but the Alzheimer's is making it difficult for him to process. I think this last time stuck though...hold on." I set the phone down (it's one of the few phones left in the world that isn't cordless) and went to get Dad from the other room.
Dad looked up from his chair and asked, "Who is that?"
"It's your brother Henry. He just heard about Tom's plane crash. You're probably going to get a lot of these condolence calls. Do you want to talk?"
"Yeah, I guess so", he said. He didn't question what I was talking about so perhaps our last retelling managed to sink in after all.
I walked back to the phone and Dad shuffled a few feet behind me.
I picked up the phone again, "Uncle Henry? Here's Dad..." and handed it to Dad.
"Hello?.....Who?....Oh, Henry, hi!" Dad didn't look at all sure who Henry was but he continued, "I'm fine....What? Wait, say that again....who was in a crash?" and looking at me in shock and anger asked, "Do you have any idea what he's talking about?" holding the phone out to me.
Suddenly I realized in horror that from the chair to the phone Dad had again forgotten what had happened and thought that he was hearing all of this for the first time from Uncle Henry. I took the phone and quickly said, "Uncle Henry, I'm so sorry to do this but we need to get off the phone now. I'll have Paula call you later. Thanks so much for calling!" and hung up on my poor, bewildered uncle. You see, none of Dad's brothers had seen him since Mom's death ten years ago. They had no idea the day to day reality of Dad's condition.
Dad slumped in the chair by the phone and again demanded to know what had happened. Again, I explained as gently as possible about the crash. Again, "Why didn't you tell me?" and, again, my explanation of what his illness was not doing with the information. It was like the most agonizing loop ever.
Eventually everyone came back and I related to Paula what had happened. By then Hillary had joined us. So much work to do. Paula received a call from one of Ann's brothers. Ann and Casey were alone at their house. Paula was going to go over, but she had so many other things to do I offered to go instead and try to get Ann and Casey to join us for dinner.
As I drove I wondered what I would find. Would Ann be calm or distraught? Knowing Casey and how close she and Tom were I could not even imagine her pain at losing her dad to the pastime he loved most.
As I pulled up to the house I noticed news van pull up behind me. I hung back to see what would happen. A tall, well dressed young woman got out and began walking to Tom's front door. "Wow! That's bold!" I thought and quickly caught up to her.
"Excuse me! Can I help you? " I called after her.
She turned around, surprised. "Oh, we were just hoping to talk to the family. Do you know them?"
"I am the family. I doubt they are ready for interviews", I stated.
"Well, we saw some of the posts made on Facebook, how respected he was. We were hoping to do a story on how he loved flying", she pushed.
"Here's the story: he loved flying", I replied tensely.
"Well, we don't have any pictures other than the one ran previously", she pressed, "Do you think you could persuade anyone to give us a more personal picture, maybe with his family? "
I thought about it for a moment...If they had access to the posts on Facebook then they should have plenty of pictures. They were just trying to get in.
"I will make a deal with you", I bargained. I will go in and speak to the widow. If she says no then you will respect her wishes and leave. Fair enough?"
"Okay, we can do that", she agreed.
I motioned her to step away from the porch and with my hand on the doorknob to control how much it opened I rang the bell. The faint sounds of movement drifted through the door. Casey answered.
I pushed in quickly through the small opening and shut the door behind me.
"There is a reporter outside who planned on walking right up and knocking. Where's your mom?" I asked.
"Oh my God!" Casey said covering her mouth in disbelief. "She's on the couch. "
We strode into the living room. "Are you up for an invasion of privacy? " I asked wryly. "There is a reporter outside requesting an interview. She said they would leave if you declined. "
"Whoa, that took a lot of nerve!" Ann exclaimed, "No, I don't think so. Geez, I can't believe they thought they could just come right over unannounced! "
"That's what I thought you would say", I agreed, "I'll go take care of it."
I went out through the narrowly opened door.
"His wife respectfully requests that you leave them alone", I said politely...then closed the door. I watched through the curtain as the disappointed reporter made her way back to the van. It was a lucky coincidence that I arrived when I did. Ann and Casey didn't need that. None of us did, but especially not them.
To be continued...
A: Again...and again...and again...and again...until after the funeral. After that you never mention it again ever, ever, ever.
The morning after the crash I was up early. I had not quite wrapped my mind around what had happened. Tom was gone...I hadn't dreamed it. I sent a text to Paula asking what time she was going to Dad's so we could be together to tell him. She had spent most of the evening before with Ann and Casey. Given Ann's illness it would be best not to leave her alone for very long. She would need a lot of support to get through this terrible turn of events. Fortunately her brothers had arrived to relieve Paula and spend the night with her. Tom's life and exuberance had given life to that house. It must feel so empty without him. Paula said if we didn't hear from Hillary by 9:00 AM we should probably head over to Dad's. I agreed.
I dressed as if it were any other Sunday visit, Jeans and a t-shirt. I wondered how Dad would handle the news. Dad has always been so stoic. I had never actually seen him cry...not when Mom died or when Jenny died. How would he take Tom's death and would the Alzheimer's end up compounding his grief or actually relieving it? My fear for him was that it could trigger a downward spiral. Time would tell.
I kissed Mike goodbye and told him where I was going.
"Do you need me to go with you?" he offered.
"No, you stay here and look after the girls", I said after some consideration. "I may call you and ask you to come over later."
"Okay, Just let me know", he said hugging me tightly, "Narboza".
"Narboza", I replied and left.
I got there and Paula was already there. We hugged each other and quietly discussed how we should approach Dad. Should we all be there or have one of us tell him privately and then the others could come in for support? We agreed all of us should be with him when we broke the news.
We went in and greeted Dad with hugs and kisses. He was happy to see us both. I put on a movie to distract him while we busied ourselves with cleaning. Dad would probably have visitors all week and perhaps even overnight guests from out of town, best to get the house in order. Soon we were joined by Bradley, his wife and daughter.
An hour went by and Hillary had not yet left her house. Still overwhelmed, she was not up to coming over. It would fall on me and Paula to tell Dad. We both sat down on chairs in front of him.
"Dad, something has happened that we need to tell you about." Paula began, "Tom was flying his plane yesterday....." she paused, "There was an accident....his plane crashed...and Tom died in the crash." As she said this I reached over and held his arm gently.
I could see the comprehension slowly drain his face. "Wait", he said, not sure if he heard correctly, "Say that again, who died?"
"Tom. He crashed his plane." Dad appeared to deflate in front of us.
"This is my fault", he said regretfully.
"NO, it wasn't your fault at all, Dad!" I said, "Tom was a sportsman, he was an experienced pilot and nothing could have kept him from flying".
"It's my fault", he muttered again. "Do they know what went wrong?"
"No, Dad, it's under investigation. Not sure if it was a mechanical failure or if something else went wrong. He was a good pilot...kind of doubting it was pilot error", Paula explained, "They won't release the body until tomorrow."
"Was there a fire", Dad asked.
"No fire. He just pancaked the plane", she said, "I'm so sorry, Dad."
"I just want to be alone", he told us.
He looked completely desolate. It was his "block out the world" look that I had seen a handful of times in my life. Dad looked so much older in that moment.
"Dad, we're going to be here all day", I told him, "We have to get the house ready".
Paula and I both hugged him and got up. We went to the kitchen. "Why don't I make him some lunch and see if he'll eat?" I asked her.
"That sounds like a good idea. I'm going to call and see if someone is still with Ann and Casey. We also need to go through photo albums for a memorial slideshow", she added.
I made dad a sandwich and a plate of sliced fruit and brought it to him. He didn't see terribly interested. Then Mike and Allison arrived and Dad brightened up.
"Hey! How's it going?" Dad asked.
"We're fine...you doing okay?" Mike asked.
"I'm wonderful!" Dad said smiling. He was not being sarcastic. His smile betrayed what had happened. Alzheimer's had wiped away the past hour already.
After chatting with Mike a bit and asking who Allison was, where she went to school, etc., they joined the rest preparing the house. Dad called me over and asked, "Why is everyone here?" thinking, I imagine, that it must be a party.
I called Paula over and we explained about the crash again.
"Why didn't anyone tell me?" Dad asked angrily.
"We did tell you", Paula said, "but for some reason the Alzheimer's isn't allowing your brain to file it properly".
It was news that would be broken to him over and over with the same questions, the same guilt, the same dejection. This was going to be a very long week. We would not be able to keep from talking about it around him until after the funeral.
Shortly after that second revelation everyone left to run errands: Mike went to the hardware store for a gardening tool, Bradley went to gather more pictures from his home, Paula went the the grocery store for sandwiches and food to feed the army of family that would be in and out for the next few days. I stayed with Dad.
After about a half hour the phone rang. Likely we would start getting calls now that all immediate family had been informed and Tom's name was finally released to the public.
I answered the phone. It was my Uncle Henry. He was the oldest of Dad's three younger brothers.
"Hi, who am I speaking to?" he began.
"I am Erin, who is this?" I asked.
"It's Uncle Henry, your Dad's brother", he responded. I thought it was funny at the time that he felt the need to clarify but we hadn't seen him since Mom died so I guess that wasn't inappropriate to say.
"Erin...how are you and everyone? We just heard", he said sympathetically.
"It really hasn't sunk in yet", I answered as honestly as I could.
We chatted for a minute or two and then he asked, "How's your father? Can I speak to him?"
"Dad is fine but the Alzheimer's is making it difficult for him to process. I think this last time stuck though...hold on." I set the phone down (it's one of the few phones left in the world that isn't cordless) and went to get Dad from the other room.
Dad looked up from his chair and asked, "Who is that?"
"It's your brother Henry. He just heard about Tom's plane crash. You're probably going to get a lot of these condolence calls. Do you want to talk?"
"Yeah, I guess so", he said. He didn't question what I was talking about so perhaps our last retelling managed to sink in after all.
I walked back to the phone and Dad shuffled a few feet behind me.
I picked up the phone again, "Uncle Henry? Here's Dad..." and handed it to Dad.
"Hello?.....Who?....Oh, Henry, hi!" Dad didn't look at all sure who Henry was but he continued, "I'm fine....What? Wait, say that again....who was in a crash?" and looking at me in shock and anger asked, "Do you have any idea what he's talking about?" holding the phone out to me.
Suddenly I realized in horror that from the chair to the phone Dad had again forgotten what had happened and thought that he was hearing all of this for the first time from Uncle Henry. I took the phone and quickly said, "Uncle Henry, I'm so sorry to do this but we need to get off the phone now. I'll have Paula call you later. Thanks so much for calling!" and hung up on my poor, bewildered uncle. You see, none of Dad's brothers had seen him since Mom's death ten years ago. They had no idea the day to day reality of Dad's condition.
Dad slumped in the chair by the phone and again demanded to know what had happened. Again, I explained as gently as possible about the crash. Again, "Why didn't you tell me?" and, again, my explanation of what his illness was not doing with the information. It was like the most agonizing loop ever.
Eventually everyone came back and I related to Paula what had happened. By then Hillary had joined us. So much work to do. Paula received a call from one of Ann's brothers. Ann and Casey were alone at their house. Paula was going to go over, but she had so many other things to do I offered to go instead and try to get Ann and Casey to join us for dinner.
As I drove I wondered what I would find. Would Ann be calm or distraught? Knowing Casey and how close she and Tom were I could not even imagine her pain at losing her dad to the pastime he loved most.
As I pulled up to the house I noticed news van pull up behind me. I hung back to see what would happen. A tall, well dressed young woman got out and began walking to Tom's front door. "Wow! That's bold!" I thought and quickly caught up to her.
"Excuse me! Can I help you? " I called after her.
She turned around, surprised. "Oh, we were just hoping to talk to the family. Do you know them?"
"I am the family. I doubt they are ready for interviews", I stated.
"Well, we saw some of the posts made on Facebook, how respected he was. We were hoping to do a story on how he loved flying", she pushed.
"Here's the story: he loved flying", I replied tensely.
"Well, we don't have any pictures other than the one ran previously", she pressed, "Do you think you could persuade anyone to give us a more personal picture, maybe with his family? "
I thought about it for a moment...If they had access to the posts on Facebook then they should have plenty of pictures. They were just trying to get in.
"I will make a deal with you", I bargained. I will go in and speak to the widow. If she says no then you will respect her wishes and leave. Fair enough?"
"Okay, we can do that", she agreed.
I motioned her to step away from the porch and with my hand on the doorknob to control how much it opened I rang the bell. The faint sounds of movement drifted through the door. Casey answered.
I pushed in quickly through the small opening and shut the door behind me.
"There is a reporter outside who planned on walking right up and knocking. Where's your mom?" I asked.
"Oh my God!" Casey said covering her mouth in disbelief. "She's on the couch. "
We strode into the living room. "Are you up for an invasion of privacy? " I asked wryly. "There is a reporter outside requesting an interview. She said they would leave if you declined. "
"Whoa, that took a lot of nerve!" Ann exclaimed, "No, I don't think so. Geez, I can't believe they thought they could just come right over unannounced! "
"That's what I thought you would say", I agreed, "I'll go take care of it."
I went out through the narrowly opened door.
"His wife respectfully requests that you leave them alone", I said politely...then closed the door. I watched through the curtain as the disappointed reporter made her way back to the van. It was a lucky coincidence that I arrived when I did. Ann and Casey didn't need that. None of us did, but especially not them.
To be continued...
Tuesday, July 8, 2014
Time for a summit meeting (part 1)
Having a family full of stubborn people, myself included, makes it particularly difficult to draw the line where family care transitions to professional care. My personal belief is that when the patient exhibits behavior or concerns that threaten the patient's health or survival, it is time to discuss easing into, at the very least, a daycare or assisted living solution. Such indications appeared to be surfacing recently. Dad's ability to communicate effectively is becoming more compromised as weeks pass. He is sitting in his chair far too long and, as a result, losing muscle tone and causing a noticeable amount of edema (swelling/fluid retention due to lack of circulation) in his ankles and feet. These are all bad signs but the worst indication happened two month ago.
Hillary had sent out several texts regarding one of the gates to Dad's backyard being left open. She speculated that either the gardener had been leaving it open or possibly an intruder was getting into the backyard. Either possibility was unacceptable and the gate needed a lock immediately. Tom offered to acquire one and handle installation.
Being very stressed about Allison's school work, Kelly's graduation schedule and other pressing matters, I have been trying to bring Mike along with me when caring for Dad to help alleviate some of the stress. My Thursday and Friday visits came and went as usual. Saturday came and Mike accompanied me with the intention of clearing some of the dead trees and shrubs from around the house. As we pulled into the driveway we saw Dad walking around in front of the carport with Buddy running loose in the yard. This was very unusual. We walked back in and sat him down for dinner, keeping this change of behavior in the back of our minds. On the positive side, he did seem to know who we were, for the most part, but why was he out in the driveway? Had one of his other caregivers just left?
After dinner, I sat down and watched a movie with him for a bit. When it was time to leave, we said goodbye as usual.
"Don't forget to go inside and put your feet up after we leave", I called behind me, but as we got in my car we realized he wasn't standing up on the porch as usual. He had followed us down the brick stairs to the carport and into the driveway. I waved again and told him to go inside but we were not convinced he would follow instructions.
Beside my Dad's property is a little neighborhood. After exiting the driveway we pulled into the neighborhood and parked the car. Mike got out and walked over to the edge of Dad's property and called me on his cell phone. I could hear the wind blowing through the phone as he watched and reported back to me.
"He's still outside....now he's walking toward the front of the house.....looks like he's trying to open the front door..."
"He won't be able to", I said, "It's locked".
The wind continued to whistle through the phone line.
"....okay, he looks like he's bending over to get something. Is there a key under the mat?"
"I'm not even sure there is a mat. No, there wouldn't be a key there. Come on back, we have to go back and help him".
Mike came back and got in the car and we drove back down the driveway. I got out and walked over.
Taking Dad's arm I said, "Did you forget? It's okay, Dad, you just forgot..."
"No", Dad said, trying to cover for himself, "I was just checking to see if there was a card to get in the side door".
Puzzling, his use of the word card instead of key.
"The side door is unlocked, Dad. That's the way you came out."
He looked at me in disbelief.
"It's okay, Dad. We understand", I said.
"Understand what", he replied, almost offended that we didn't buy his explanation.
"You just forgot, it's okay."
"I didn't forget", he mumbled indignantly.
He climbed the stairs shakily and crossed the back porch. We waived and honked as usual and drove around the corner into the neighborhood street. Again, Mike walked back to see if Dad had gone inside.
"Okay", he reported, wind still blowing through the connection, "He's not outside and the light is off. You can't turn out the lights from the outside, right? He must be inside."
Satisfied Dad was safely in the house we went home...but the incident continued to haunt me. I decided to write an email blast to all the caregivers relating what had happened and asking who was the last person there and what time they had left. I was really hoping that when we had arrived and he was in the driveway perhaps we had just missed someone and he had not been out there long. Responses were immediate.
Paula: "Well , damn! Maybe exercising him by walking around the driveway isn't such a good idea after all."
Hillary had sent out several texts regarding one of the gates to Dad's backyard being left open. She speculated that either the gardener had been leaving it open or possibly an intruder was getting into the backyard. Either possibility was unacceptable and the gate needed a lock immediately. Tom offered to acquire one and handle installation.
Being very stressed about Allison's school work, Kelly's graduation schedule and other pressing matters, I have been trying to bring Mike along with me when caring for Dad to help alleviate some of the stress. My Thursday and Friday visits came and went as usual. Saturday came and Mike accompanied me with the intention of clearing some of the dead trees and shrubs from around the house. As we pulled into the driveway we saw Dad walking around in front of the carport with Buddy running loose in the yard. This was very unusual. We walked back in and sat him down for dinner, keeping this change of behavior in the back of our minds. On the positive side, he did seem to know who we were, for the most part, but why was he out in the driveway? Had one of his other caregivers just left?
After dinner, I sat down and watched a movie with him for a bit. When it was time to leave, we said goodbye as usual.
"Don't forget to go inside and put your feet up after we leave", I called behind me, but as we got in my car we realized he wasn't standing up on the porch as usual. He had followed us down the brick stairs to the carport and into the driveway. I waved again and told him to go inside but we were not convinced he would follow instructions.
Beside my Dad's property is a little neighborhood. After exiting the driveway we pulled into the neighborhood and parked the car. Mike got out and walked over to the edge of Dad's property and called me on his cell phone. I could hear the wind blowing through the phone as he watched and reported back to me.
"He's still outside....now he's walking toward the front of the house.....looks like he's trying to open the front door..."
"He won't be able to", I said, "It's locked".
The wind continued to whistle through the phone line.
"....okay, he looks like he's bending over to get something. Is there a key under the mat?"
"I'm not even sure there is a mat. No, there wouldn't be a key there. Come on back, we have to go back and help him".
Mike came back and got in the car and we drove back down the driveway. I got out and walked over.
Taking Dad's arm I said, "Did you forget? It's okay, Dad, you just forgot..."
"No", Dad said, trying to cover for himself, "I was just checking to see if there was a card to get in the side door".
Puzzling, his use of the word card instead of key.
"The side door is unlocked, Dad. That's the way you came out."
He looked at me in disbelief.
"It's okay, Dad. We understand", I said.
"Understand what", he replied, almost offended that we didn't buy his explanation.
"You just forgot, it's okay."
"I didn't forget", he mumbled indignantly.
He climbed the stairs shakily and crossed the back porch. We waived and honked as usual and drove around the corner into the neighborhood street. Again, Mike walked back to see if Dad had gone inside.
"Okay", he reported, wind still blowing through the connection, "He's not outside and the light is off. You can't turn out the lights from the outside, right? He must be inside."
Satisfied Dad was safely in the house we went home...but the incident continued to haunt me. I decided to write an email blast to all the caregivers relating what had happened and asking who was the last person there and what time they had left. I was really hoping that when we had arrived and he was in the driveway perhaps we had just missed someone and he had not been out there long. Responses were immediate.
Paula: "Well , damn! Maybe exercising him by walking around the driveway isn't such a good idea after all."
Hillary: "I'm no longer walking him out
front around the circle, in fact, backyard only from this point forward!
Thanks for the warning, very concerning, indeed.."
Bradley: "We left Grampa's house around 2:30 this afternoon. I put the kiddo in the
truck, then turned around and Grampa was standing right behind me. I
thought it was odd but I was glad to see that he made it all the way out
there no problem (he used to be right there when I would leave). Buddy
was not outside when we left so he must have gone back inside and then
come back out with Buddy at some point. That is concerning. Thanks for
the heads-up."
Then it struck me and I responded to all, "Maybe there is no intruder and the gardener isn't leaving the gate open. Maybe Dad is the one leaving it open".
There was no response. I expect that the possibility might have been pretty scary and no one knew quite what to say. This would take some thought.
Mike and I again discussed something that we had talked about before: calling a family meeting to discuss dad's condition, it's effect on our daily lives and the need to bring in outside help.
I composed an email:
Hi guys,
I am requesting a "state of our Dad" meeting to make sure we are all in the know about what is going on, his prognosis and the care plan going forward. It is important that we all be in the loop and have a say in decisions that effect our daily lives.
Let's come up with a time and place to discuss.
Thanks. Love you all,
Erin
I bounced it off of Tom first to see what he thought. I knew Tom also believed, like me, that it was time to explore home care options. Tom agreed with the message and I sent it to both sisters, my nephew and his wife. At first the message was not well received by one caregiver who thought the ulterior motive was to discuss putting Dad in a home (no names here, everyone is entitled to a certain amount of natural reaction to proposed changes). After much discussion and reassurance that this was not on the agenda at all, a place and time was set for a family "summit meeting". There would be two weeks to prepare. We all had topics we wanted covered so that time was spent doing our homework.
To be continued...
Mike and I again discussed something that we had talked about before: calling a family meeting to discuss dad's condition, it's effect on our daily lives and the need to bring in outside help.
I composed an email:
Hi guys,
I am requesting a "state of our Dad" meeting to make sure we are all in the know about what is going on, his prognosis and the care plan going forward. It is important that we all be in the loop and have a say in decisions that effect our daily lives.
Let's come up with a time and place to discuss.
Thanks. Love you all,
Erin
I bounced it off of Tom first to see what he thought. I knew Tom also believed, like me, that it was time to explore home care options. Tom agreed with the message and I sent it to both sisters, my nephew and his wife. At first the message was not well received by one caregiver who thought the ulterior motive was to discuss putting Dad in a home (no names here, everyone is entitled to a certain amount of natural reaction to proposed changes). After much discussion and reassurance that this was not on the agenda at all, a place and time was set for a family "summit meeting". There would be two weeks to prepare. We all had topics we wanted covered so that time was spent doing our homework.
To be continued...
Labels:
Alzheimer's,
bathing,
caregiver,
coping,
death,
dementia,
elderly,
family,
healing,
health,
hygiene,
illness,
maintenance,
organization,
protection,
support,
therapy
Sunday, April 13, 2014
Mike vs The Freezer
We have all been taking turns caring for Dad in his own home for a few years now and part of the job is to take care of the home as well. We have had so many household issues to deal with...too many to count. Most of the time, with the exception of laundry and dishes, the larger issues don't get any attention until they become minor catastrophes. So far we have had to deal with crashing computers, a broken water pipe in Dad's workshop, two faulty toilets, broken hot water heater, broken air conditioner (this is a very big deal in Texas), a broken water pipe in the back yard that caused a flood and leaky faucets. Hillary and Paula can always be counted on to make time for maintenance appointments and other emergencies that crop up. Occasionally someone will step in before something breaks to fix a problem before it becomes a major issue. For me, that someone is Mike.
Mike is very proactive when it comes to keeping Dad's house in reasonably good condition. He regularly checks for issues and when something is getting out of hand he will step in and take care of the problem. For example, two years ago we had one of the driest Texas summers in years. Many trees did not survive the harsh conditions. The next year when Spring came around Mike and I would often count the dead trees on route to wherever we were traveling. It was a little spooky seeing how many dead trees lined the roads. Dad's property was no exception. Many of the trees and bushes didn't make it and just stood there rotting on the inside. Mike took it upon himself to trim away much of the dead branches and shrubbery threatening the integrity of the house. One such tree (I have referred to it as "Treezilla" because of its sheer size and it's threat to the electrical line running to the house just under its branches) proved to be an all day task. Mike spent the better part of the day just removing its branches. After that he gradually cut it down until it was just a hollow stump. It had rotted straight through the middle. We have never ground down the stump. Mike is so proud of it that he wants to remove some of the bark and carve "The Lorax" into it.
Most recently when we were visiting Dad, Mike noticed how crammed with food the freezer in the kitchen was becoming and decided to relocate some of it's contents to the second freezer in the pantry. To his dismay he found that that was not possible. The pantry freezer was so iced over there was no room for additional items. I stood beside him as we observed, awe struck, the growing iceberg that had engulfed it's contents.
"My favorite part", I said, breaking the silence, "Is the bag of ice frozen into the ice.....'cause you never know when you might need some, ya know, ice to go with your...um...ice".
"Yeah...", he responded, still staring. I could hear the gears in his head turning and knew he was coming up with a plan of action. Clearly a simple defrost was out of the question as that would cause a flood and create a problem with the wood floor that would be considerably harder to fix.
The next time we came over he brought his cordless drill and a few tools to start chipping away at the freezer. He knew this would be more than a single night task. He began by drilling holes in the ice to loosen large areas. I stood by with mixing bowls, filling them with the chips and chunks, occasionally taking them into the kitchen and dumping them in the sink. By the time we needed to call it quits Mike's drill had died and he had begun using a screw driver and a hammer to carve sections of the ice. This approach turned out to be more effective then the power drill. Mike's hands were red and sore and both sides of the sink were full of ice. As hard as he had worked and as much progress as he had made, he wasn't even halfway through.
The next time Mike came with me to tackle the task again, Hillary was still there, once again addressing the daunting issue with Dad's favorite bathroom. I tried to keep Dad distracted while Mike and Hillary worked, checking occasionally to see if Mike needed me to empty any buckets of ice. Hillary could hear him chipping away at the ice in the feezer and said, "It sounds like you are sculpting a statue in there".
"It really does!" I agreed.
"I am", Mike called out. "I'm sculpting a freezer...might take me a while..."
It took three visits for him to finish. During that time we unloaded several expired food items. The oldest thing we encountered was a pack of ham from 2008. It was so far gone that it was unrecognizable as ham. Before we read the label we thought it was a package of tortillas. It's safe to say this was a job long overdue. Knowing the time and effort Mike had put into his freezer sculpture, I sent before and after pictures to my siblings. They were all very impressed and grateful.
"Wow! Great job Mike!" Tom said.
"I noticed all the room last time I was there", Paula responded, "I didn't know who had done it. Thanks, Mike!"
"Yea!! What a monstrous task! What should we fill it with? How about ice cream and popsicles?" Hillary asked brightly. She had already thanked Mike several times while he was working.
"Frozen pies!" I suggested.
Later Paula and Hillary texted Mike directly, "We really appreciate what you did with the freezer. Thank you so much!"
"You all do so much, I felt I should contribute", he responded, not wanting to toot his own horn.
"You do a lot, too!" Paula pointed out, "You cut down that tree and stacked all that wood!"
"It was my pleasure", he replied.
"Thank you so much for going the extra mile", Hillary said.
Mike appreciated their acknowledgment. "Family", he answered.
"<3", each of my sisters responded.
To be continued...
Mike is very proactive when it comes to keeping Dad's house in reasonably good condition. He regularly checks for issues and when something is getting out of hand he will step in and take care of the problem. For example, two years ago we had one of the driest Texas summers in years. Many trees did not survive the harsh conditions. The next year when Spring came around Mike and I would often count the dead trees on route to wherever we were traveling. It was a little spooky seeing how many dead trees lined the roads. Dad's property was no exception. Many of the trees and bushes didn't make it and just stood there rotting on the inside. Mike took it upon himself to trim away much of the dead branches and shrubbery threatening the integrity of the house. One such tree (I have referred to it as "Treezilla" because of its sheer size and it's threat to the electrical line running to the house just under its branches) proved to be an all day task. Mike spent the better part of the day just removing its branches. After that he gradually cut it down until it was just a hollow stump. It had rotted straight through the middle. We have never ground down the stump. Mike is so proud of it that he wants to remove some of the bark and carve "The Lorax" into it.
Most recently when we were visiting Dad, Mike noticed how crammed with food the freezer in the kitchen was becoming and decided to relocate some of it's contents to the second freezer in the pantry. To his dismay he found that that was not possible. The pantry freezer was so iced over there was no room for additional items. I stood beside him as we observed, awe struck, the growing iceberg that had engulfed it's contents.
"Yeah...", he responded, still staring. I could hear the gears in his head turning and knew he was coming up with a plan of action. Clearly a simple defrost was out of the question as that would cause a flood and create a problem with the wood floor that would be considerably harder to fix.
The next time we came over he brought his cordless drill and a few tools to start chipping away at the freezer. He knew this would be more than a single night task. He began by drilling holes in the ice to loosen large areas. I stood by with mixing bowls, filling them with the chips and chunks, occasionally taking them into the kitchen and dumping them in the sink. By the time we needed to call it quits Mike's drill had died and he had begun using a screw driver and a hammer to carve sections of the ice. This approach turned out to be more effective then the power drill. Mike's hands were red and sore and both sides of the sink were full of ice. As hard as he had worked and as much progress as he had made, he wasn't even halfway through.
The next time Mike came with me to tackle the task again, Hillary was still there, once again addressing the daunting issue with Dad's favorite bathroom. I tried to keep Dad distracted while Mike and Hillary worked, checking occasionally to see if Mike needed me to empty any buckets of ice. Hillary could hear him chipping away at the ice in the feezer and said, "It sounds like you are sculpting a statue in there".
"It really does!" I agreed.
"I am", Mike called out. "I'm sculpting a freezer...might take me a while..."
It took three visits for him to finish. During that time we unloaded several expired food items. The oldest thing we encountered was a pack of ham from 2008. It was so far gone that it was unrecognizable as ham. Before we read the label we thought it was a package of tortillas. It's safe to say this was a job long overdue. Knowing the time and effort Mike had put into his freezer sculpture, I sent before and after pictures to my siblings. They were all very impressed and grateful.
"I noticed all the room last time I was there", Paula responded, "I didn't know who had done it. Thanks, Mike!"
"Yea!! What a monstrous task! What should we fill it with? How about ice cream and popsicles?" Hillary asked brightly. She had already thanked Mike several times while he was working.
"Frozen pies!" I suggested.
Later Paula and Hillary texted Mike directly, "We really appreciate what you did with the freezer. Thank you so much!"
"You all do so much, I felt I should contribute", he responded, not wanting to toot his own horn.
"You do a lot, too!" Paula pointed out, "You cut down that tree and stacked all that wood!"
"It was my pleasure", he replied.
"Thank you so much for going the extra mile", Hillary said.
Mike appreciated their acknowledgment. "Family", he answered.
"<3", each of my sisters responded.
To be continued...
Labels:
Alzheimer's,
caregiver,
change,
coping,
dementia,
family,
healing,
hygiene,
love,
maintenance,
organization,
protection,
relief,
support
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