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 anti-psychotic 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…


Fall risk (part 2)

Following that night I spent with Dad after my first unsuccessful shower weekend another week went by. That Friday I came to dad’s house and he, again, was very weak…too weak to shower. Again, I spent the night. Mike stayed with me. Early that morning Mike went home to feed our dogs. I stayed and made breakfast for myself, Allison and Dad. I made eggs, cinnamon toast and sliced strawberries. Dad enjoyed the homemade breakfast while I observed. He was having trouble locating his mouth with his fork. It crossed my mind that he was still just tired but I messaged Paula letting her know what I was seeing. We agreed to keep a close eye on him for the next couple days. After breakfast, Allison and I hugged Dad and promised to come back that night.

We returned, as usual, at six o’clock, Saturday. Dad was standing when Mike and I entered and it was apparent that he had lost control of his bladder. We would have to insist on a shower no matter how difficult it would be. Dad fought us as best he could, arguing, promising to shower later, getting angry and demanding that we leave. We finally caught him off guard and got him to sit down in the rolling walker. Tipping it backward we rolled him into the bedroom. He continued to protest, even going so far as grabbing the door frame. It was at that point I decided, “This is getting unsafe. After tonight I will need to say something to Paula. We have to get help with hygiene.” Dad finally gave in and showered. It took a while but he definitely felt better when he was clean. We followed up with dinner and a movie as usual. It would be the last “normal” evening for a while…possibly ever. I had a gut feeling that we were about to be hit with another big wave of change. The next day would prove me right.

Our family always celebrates birthdays on Sunday. Since my niece, Tom’s daughter, turned sixteen in October, it was time for a party. Text messages flew back and forth through out the day. “What does Casey need/want?”  “Is Ann making the cake?” “I can’t make it to the store, can you pick up _____?”

I had made it home at three o’clock after choosing gifts to bring and getting fruit to make a fruit salad. We began putting together our packages when I noticed I had missed a series of texts from Paula and responses from Bradley.
Paula: Dad fell in the bathroom. I have been trying to help him and am drenched with sweat. Need help.
Bradley: I am an hour away. I’m sorry. Wish I could help. Call Dad?
Paula: He’s at work. I guess I will call 911.
Bradley: On my way back. Did you call?
Paula: Called. On way to emergency room.

We knew which hospital so I responded: Just saw this. Meet you there.

I quickly told Mike what was happening and we jumped in my car and raced to the ER.

As we walked through the sliding doors, Paula exited the automatic doors of the patient rooms. She walked straight to us.

“Dad isn’t able to talk other then the occasional whisper and he isn’t making much sense. I haven’t been able to reach Hillary yet”, she informed us.

“Okay, should I come back with you?” I asked. Bradley entered the ER just as I said this.

“You can. They will only let two of us in at a time.”

I gave Mike a quick hug and kiss and followed Paula, glad that Mike had Bradley to wait with him.

Dad was in the room immediately after the automatic doors. They had really just arrived. We helped keep him calm as his IV was administered. He was also given an automatic blood pressure cuff. During that first hour he said a total of three words. When Dad’s blood pressure cuff squeezed his arm uncomfortably he belted out a breathy “JESUS CHRIST!”  A little while later when a tech came to take him for a CT scan I told him I would go with him and he managed an “Okay”. That was pretty much all I heard from him that first night.

I stood in the doorway as he was positioned for his CT scan by two talkative techs. He was very agitated and kept moving and making noises trying to voice his confusion. I continuously called out, “It’s okay, Dad. Stay still. They aren’t going to hurt you.”  Then they closed the doors and I listened. I could hear the techs chatting and laughing as they did their job. Could they not see how confused and frightened Dad must be? I sat in the hallway, helpless as I waited for them to finish their scan. A woman in a wheelchair was in the hall with me. She was next for a scan. The waiting was awkward. Should I talk to her? Ask her how she was? Mind my own damn business? She broke the silence.

“Your Dad doesn’t like hospitals much, does he?” she asked with a knowing smile.

“No, ma’am…no he doesn’t. Ironically, he’s a doctor”, I replied.

“They’re the worse patients”, she smiled.

“They certainly are”, I nodded, smiling back.

The doors opened and the techs wheeled Dad out and back to his room. He held my hand tightly as we made our way back. He was frightened and disoriented.That first night was a series of tests, scans, blood draws, poking, prodding and, above all, no clear answers.

Over the next several days it appeared Dad had a break with reality. The few intelligible words that he spoke indicated that he thought he lived with his parents in Ohio. Other interesting things he said were that he had three sons, five daughters, five cats and five dogs. Dad usually knew Paula and Hillary and for some reason also knew Mike by name. He was still comfortable with me but not sure who I was. After an ultrasound it was determined that he had had a TIA (Transient Ischemic Attack) or mini-stroke. Whatever had brought it on, it appeared to have accelerated his dementia. The second night he was there he ripped out his IV three times and continuously pulled off his leads. Because of the swelling in his legs, relocating the IV to a nonstandard entry was not an option. Hillary texted me and Paula, so frustrated and out of ideas to control him. We had no helpful suggestions.

From time to time Dad would become aggressive with the staff, demanding to leave, lashing out verbally and physically at the nurses trying to help him with toileting, changing, sitting or standing. We did our best to calm him but even we, his family, were not entirely safe. Each of us had to deal with his combative temperament. Once he managed to hit Paula in the face. He wrestled with me and Hillary. I remember after three days marveling as two tiny nurses came in to help with toileting and thinking, “Really? You couldn’t find ANYONE bigger than me?” (Recall, I’m 4’11”. Yes, they were that small!)  The few times that he would remain calm we would try to explain to him that he had had a stroke. This explanation never stuck for more than a few minutes and eventually he would demand to know what was going on and try to get up to leave. Ultimately, we had no choice but to allow the nurses to sedate him for the safety of everyone including Dad.

Hillary covered many of the day shifts while Paula and I covered afternoons and evenings. The stroke ward was understaffed and it was important that we tag team it until either Dad remained cooperative or the staff was able to cope with his bouts of frustration.  Doctors took me and my sisters aside individually and counseled each of us that it was no longer safe for Dad to live alone. Clearly arrangements would have to be made. By day five, the neurologist decided Dad should be released to a rehab facility for seven to ten days. I took the afternoon off to relieve Hillary and she went home, half delirious with exhaustion, to sleep it off. I stayed and awaited transfer orders. Around three o’clock we were told a transport to the rehab facility had been arranged and Dad could get dressed. Bradley stopped by with shoes for Dad and helped me dress him for transport. Still unable to stand for more than a few seconds Dad wanted to leave immediately once he was dressed. Bradley and I helped him to sit in a recliner in his room for the remainder of the time as we awaited his ride. It was clear he still was not in reality. He was sure that on the other side of the bathroom was a living room and wanted to go lay down on the couch. Dad also was convinced his house was only two blocks away rather than across town, and that he could easily walk there on his own.

Finally the nurse came in to tell us the transport was there and asked if he was ready. We would have preferred she had worded that differently. Of course he was ready.
“Okay, let’s go!”  Dad said, trying to stand.
“No, Dad, they’re going to come up and get you”, I said trying to keep him in his chair.
“Why? I’m just going home”, he said.
“No, Grampa”, Bradley explained, “They are taking you to get physical therapy.”
“But I can walk just fine”, Dad insisted angrily.
“Dad, you can barely stand”, I said firmly, still trying to restrain him as he attempted to push us out of the way.
“Grampa, everyone leaves on wheels”, Bradley said, “Even you.”
Dad calmed down.
I knew the transport people were a few minutes late so I went out into the hall to see if they were on their way, There they were. Instead of a couple orderlies with a wheel chair, two huge guys were rolling an ambulance gurney down the hall. I went back into the room and quickly whispered to Bradley what was coming.
“This is going to be bad”, he said with a look of fear.
“I think we should get out in the hall and let the transport team do their job”, I suggested. Bradley agreed and we cleared out, waited and listened.
From inside the room we heard a few profanities from Dad followed by a loud, “Why do I have to go on there?”
“Sorry, sir. That’s just what the orders say”, one of the orderlies replied. A few seconds later they wheeled him out. Dad didn’t see us in the hall. I grabbed his things and Bradley helped me to my car.
“Wow”, he said in the elevator, “I’m surprised that went so calmly and quickly!”
“Really?” I smiled, “I’m more surprised the nurses weren’t cheering and calling out ‘Bon Voyage’!”
We both giggled. A rare moment of humor before the next storm.

To be continued….

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…

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 a 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…

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…

Time for a Summit meeting (part 2)

When a date was decided upon for the family caregiver meeting it was set for two weeks out, giving all of us time to prepare and, in some cases, argue. Tom and I had particular concerns given our work schedules and having spouses and children who depend on us. He and I, having similar interests, leaned on each other for support during those two weeks. Both taking three shifts a week each and knowing that Hillary had four to five shifts Tom and I both felt it was important to propose bringing in a professional caregiver to reduce the number of shifts specifically required of us and of Hillary. We knew presenting this idea could likely cause discord but, given the strain the schedule had imposed on our children and spouses, we knew change was imperative…so we braced ourselves and pressed forward.

The day came. We had agreed to meet on a Sunday afternoon at Paula’s house. Mike and I arrived a few minutes early. No one was home. I think we were both nervous. We chatted as we waited.
“This could be really short”, I said.
“Yup. I think that’s most likely what will happen. Short and loud”, Mike replied.
“That’s what I’m afraid of”.

Bradly and his wife were the first to arrive. They, too, were worried about the situation turning volatile.
Then Tom arrived, alone. He also was concerned there would be a blow out, and refused to expose his wife, Ann, to unnecessary tension. He was resolved to lighten the load that day.

Finally, Hillary and Paula arrived. They came in with drinks for everyone (the brutal Texas summer seemed to have started early). Paula began by giving us a brief review of the medical appointments we had prior to the meeting.  Several medical concerns including edema and diminished mobility were covered. Then Tom opened the subject of reducing shifts. (I will not be using caregiver names other then mine and Tom’s during this segment. They will be CG1, CG2 and CG3 so as not to disclose who is who.)

“I just want to say, and I know Erin agrees, this schedule can’t continue the way it is”, he interjected, “we all have people who depend on us and it is not fair for me and Erin to give up forty percent of our evenings when we have kids in school.”
“It is way too soon to talk about a home, Dad is not that far gone”, CG1 insisted.
Simultaneously Tom and I said firmly, “NO ONE is talking about putting Dad in a home!”
Stunned and surprised, CG1 replied, “Well then what ARE we talking about?”
Tom pushed forward, “We all need our afternoons available for work and Erin and I would both like to cut one shift a week. I think we need to start looking for an in home caregiver. Erin and I have both called some places to price what a day nurse would run. It is looking like $17 to $20 per hour.”
CG1 and CG2 both had concerns about bringing in an outsider…actually, we all did but none of us were in a position to quit working and take care of Dad full time.
CG2 suggested, “Why don’t we ask Dad’s former scrub nurses if either of them would be willing to pick up some extra money? I personally would feel better if the daytime caregiver was someone Dad already knew and trusted”. We all agreed after some discussion that would be a good idea. The backup plan would be to start interviewing caregivers within the month and to have someone in place by the end of the month.

It was agreed that a professional caregiver would be hired for four afternoons a week in order to pare everyone down to a more tolerable and balanced two shifts a week for everyone except Bradley who would remain at one shift on Saturday afternoons. We briefly touched upon the sore subject of when it WOULD be time to consider a home. It was agreed that as long as Dad could still recognize where he was, it would be best to keep him in his own house. Beyond that we would have to play it by ear.

Regarding Dad’s mobility, having had a stroke two years ago, the doctors found that one of his legs was “a peg”, basically just used for balance and scooting along.   We discussed his diminishing mobility and his tendency to dig and tear at his legs. It was agreed by all that Dad needed physical therapy to prolong his mobility and, with that, his illusion of independence. We also discussed installing a rail on the back porch and a “daddy cam” so we could log in and check on him during the day.

As the meeting drew to a close Paula stated outright that she knew the sacrifices that everyone was making and how unfair it was to our families. In no uncertain terms she made it clear her belief that Dad was no longer capable of getting better. Our job as his family is to provide him with humane and loving care as his disease progresses. She then thanked me saying, “Erin, this meeting was a very good idea. We really needed it”.

So we proceeded with the plan: Tom and I were assigned to locate an appropriate caregiver if neither of Dad’s scrub nurses were able to take the job, Hillary would see if Dad’s regular doctor could recommend physical therapy to improve Dad’s mobility and Paula would look into the necessary household repairs to make the home safer for Dad and marketable should we at some point need to sell it in order to fund Dad’s care.

Hillary did get a recommendation for Dad to receive physical therapy. The twice weekly sessions started within a week.

In the two weeks that followed I asked Paula in a group message if she had contacted Dad’s scrub nurses to see if either would be willing to help.
“Yes”, she replied, “but they have not responded. I think if it was going to be a ‘yes’ I would have heard back fairly quickly”.
“Okay, so would it be okay if Tom and I start interviewing caregivers?”
“Yeah, that would be great”, she replied.
Privately, Tom sent me a message. “Thank you for that”.
“No problem”, I said, “I don’t want this to be forgotten or swept under the rug.”
“It needs to happen”, Tom said, “Solidarity, sis”.
“Got your back, Jack”. We had formed a partnership through this common goal.
Over the next few days I called several services to set up interviews. The one thing that I kept hearing was, “We normally just place a caregiver we think is appropriate in home but if you feel you must interview them we can arrange that.”
I set up the first interview for after work the following Monday. Because I had to rush home to drive Kelly to the airport for her summer trip to France I could not stay for the entire interview. Tom and I agreed to tag team the interview, with me conducting the first half, overlapping for about fifteen minutes and Tom finishing.

As I entered the office I received a call from Tom assuring me he was on his way. The director was a lovely woman named Lana. She greeted me right away and we sat and got to know each other. It’s fair to say I was impressed with Lana right away and felt comfortable that she would be a fairly good judge of the type of caregiver that would be a good fit for Dad. Within a few minutes the candidate arrived. Her name was Opal.
Opal was a very chatty young woman in her early thirties with ten years of experience in hospitals. She had over a year of experience in private home health care and was eager to help.
Tom arrived and quickly introduced himself. I gave him a quick hug and we got down to business. We reviewed some of Opal’s experience again. We spent a few minutes covering the required responsibilities: meals, meds, pet feeding, eye drops, engaging conversation. We made sure she was aware that Dad had a tendency to say inappropriate, sometimes even offensive things occasionally but that he truly did not intend to be hurtful. He is really a very sweet person. We also encouraged Opal to show Dad photo albums and ask questions about his life.
“Whatever he tells you he has done, no matter how outrageous, he probably did it. He is a very interesting person”, I told her in parting. I said goodbye and left to take Kelly to the airport.

After seeing Kelly off I drove home and received a call from Tom on my car phone.

“So, what did you think?” he asked.
I had already formed an opinion but wanted to hear his side first.
“I thought she seemed nice. Very chatty. I have never interviewed someone before so how did you feel about her?” I probed.

“She was very chatty, that might be really great for Dad. She kinda reminded me of Peggy, Dad’s scrub nurse. I think it would be a mistake not to give her a chance”, he said.

I agreed and we started messaging our opinions to our sisters and nephew. Opal was in. She would start the next day.

A week passed with Opal being trained by each of us. The following Monday she would start taking shifts on her own. She seemed to slip into the role quite well.

Thank goodness we had her in place because no one could prepare us for the events of the next week. I walked in for my Friday visit and proceeded with shower night as usual. After Dad was safely in the shower, I took all the dirty clothes to the laundry room and…*sploosh*…stepped in a growing puddle. Water was dripping from the ceiling. “Not again!” I thought. We were all really getting tired of household repairs. I immediately alerted Paula who told me to use the long wrench and turn off the water at the street to determine if it was a leaking pipe or the air conditioner. After Dad finished his shower I grabbed the wrench, went out and shut off the water to the house, went back in, turned on the faucets until the water stopped and waited to see if the ceiling water stopped dripping. It didn’t. It was the air conditioner.

We called the service that we normally use but were told they would not be able to make it out until Tuesday. It was recommended since there were two air conditioners to turn off the one that was dripping and close off that part of the house until someone could come out and service it. Unfortunately, Tuesday was not going to work for Hillary and neither would Wednesday because she had to take Dad to physical therapy. To accommodate us the repair service agreed to come to the house at 5:30, technically after hours but still workable for them and for us. Since it was Tom’s night for a visit I told him I would get there by 5:30 since he wouldn’t be off until after 6:00 and he could take over when he got there. The service man arrived as scheduled and began working. Tom then arrived shortly after 6:00 to take over. I briefed him on what we knew so far and picked up my things to leave.

“So…how’d you like having Tuesday night to yourself for a change?” I asked in reference to the fact that he had just had his first non-Dad Tuesday in over a year.
“Oh my God, that was so nice!” he said smiling. “I’m so glad we did this!”
“Yeah, it’s going to be such a relief”, I said. “You look like you have lost some weight.”
“Been boxing a lot”, he replied.
We said goodbye and I headed home. I never did hear anything else about it so I assumed that the AC was fixed.
Opal did well for the remainder of the week and I enjoyed my first Thursday off in over a year. That Saturday we would have to juggle Dad night with picking up Kelly from the airport. We opted to visit Dad earlier than usual, leave to pick her up around 6:00, and come back and finish our visit.

Early dinner with Dad was uneventful. He protested as we left but we promised to come back and watch a movie with him. Dad waved goodbye as we headed to the airport.

Mike, Allison and I were chatting about how nice it would be to see Kelly again, musing about what stories she would have about France, sure that most of them would be about all of the wonderful new food she tried. Then the car phone rang. It was Paula sobbing uncontrollably but we could barely understand her because the connection was terrible. All we could understand was “airport”, “crash” and “dead”. Our hearts stopped as we called her back hoping for a better connection. Please, God, not our Kelly.

“Erin, I’m so sorry to tell you this way”, she apologized through tears.
“Wait! We couldn’t understand you. Who’s dead, Paula?” Mike and I asked frantically, talking over each other.
“Tom! He crashed his plane! Casey saw the whole thing.”

To be continued…

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:  “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,

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 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…

FYI, readers and friends

I know it has been a while since I have written and tonight’s post, “Tom’s Crash Course in Shower 101”, follows about three weeks of not much. Part of the reason is that I don’t wish to cover the same stuff over and over and prefer to only post when I have something fresh and inspiring. Unfortunately, there is more to it than that.

Life has been extremely busy outside of the caregiving schedule. Kelly is graduating high school in two months and all of the events that go with graduation are going on: shopping for prom dresses and accessories, checking out colleges, trading in my old car to get Kelly a more reliable car to take with her, ceremonies, planning, etc. Additionally, Allison is having trouble focusing at school and once again has to pass a standardized test in order to be promoted to the next grade. Mike works long hours and often is not home until after 7:30 PM. On nights when I have to watch Dad and Mike works late there is additional pressure for me to pick up Allison from our house and have her do her work at Dad’s while I am on duty. The problem with that arrangement is Allison’s ADHD. Putting her in a new environment when her meds are wearing off is counter productive. Add to that my Dad’s need to question her about who she is, how old, what grade and what she want’s to be when she grows up is an unavoidable distraction.  This part of the situation is unfair to Allison and needs to stop.

Finally, like it or not, Dad’s condition is worsening. Where before he was having a hard time speaking without repeating himself, he is now having a hard time completing whole sentences. I fear there is a storm ahead and the time to bring in professional help is near.

I understood when I began this blog that the only positive result would be to inspire and comfort other caregivers going through the same struggles my family is enduring. I would be a hypocrite if I did not admit to becoming depressed lately. Overwhelmed by the pressures and expectations of every aspect of my life and the feeling of not being able to accomplish anything to my own satisfaction, my melancholy must have become obvious. Mike has noticed the change in my disposition.
“You’ve gone to a very dark place, baby”, he told me. His concern played across his face. It must be true.
“I know”, I said, “Something’s gotta give”.

To be continued….

Tom’s Crash Course in Shower 101

Up until now I have been the only one who has consistently been able to get Dad to take a shower on a weekly basis. I know all his tricks and have committed to one shower a week but sometimes it’s still a struggle. He is still gleefully defiant when I tell him he needs to take a shower, smiling and saying “NO!!” to my face, thinking he can get me to back down.
A couple of weeks ago Hillary was still there when I arrived for my shower night visit. There have been problems with the toilet in one of the bathrooms backing up and, with it being a bathroom Dad tends to use frequently, it needed to be dealt with right away. Dad was standing in the door of the bathroom talking to Hillary as I walked in.
“Oh good! You’re already up”, I said. “Guess what day it is! Shower day!”
“I’ll do it later”, he replied.
“No you won’t”, I said, “You’ll take one now”.
We both made our way from the door through the kitchen and started to cross the living room when I realized he was making a B-line for his recliner. I jumped in front of him and spun his chair around backward to cut him off from his goal.
“Dad, you’re not sitting down now, you’re taking a shower”
“NO!” he said with a smile, daring me to contradict him.
“Yes, Dad, you are taking a shower”, I insisted.
“NO!”  he said with a smile of delighted resistance.
I knew this argument could continue indefinitely if I didn’t change my approach.
“Dad, you have to take a shower”, I said lowering my voice and holding him by the shoulders. “You haven’t showered in a week.”
“I beg your pardon, yes, I have!” he replied, clearly insulted.
“No, you have not”, I shot back, “Do you know how I know?” I poked him in the chest with one finger, “I picked out that shirt and that t-shirt for you last week.”
He finally gave in.  I have noticed that he is particularly resistant when other people are around. That is why I prefer to have Mike and the kids hide if they accompany me on shower night.

Dad is having a harder and harder time getting around. On shower nights I usually will observe any cuts, scratches or edema in is legs, feet and ankles and if anything looks worrisome I will take pictures and send them to my siblings. His ankles and feet have been swelling a lot lately and since I am the only one up until now who sees him mostly undressed on a weekly basis, I am most likely to notice a problem and alert the others.

That said, Dad has been picking at the same series of scabs on his shin for months now and they are not going away. Actually, they appear to be getting worse. On the last two shower nights I have noticed, aside from the usual edema, purple feet and worsening scratches on his legs he also had large white patches on the soles of his feet. I sent pictures to my siblings and asked their opinions. We unanimously agreed that we needed to step up his hygiene quite a bit. I suggested that each of us commit to one shower a week effective immediately. Everyone agreed and my brother, Tom, committed to Monday nights specifically.
I knew that he would need a lot of information to be successful so Monday morning I sent him several long texts with instructions and additional tips to increase his odds of success:

  • Make sure he is standing and away from his chair before announcing it’s shower night.
  • Have his “uniform” on the bed before he undresses so he knows you know what he needs. The uniform includes clean briefs, undershirt, socks, hanky, overshirt and jeans.
  • Check the pockets of his dirty clothes for wallet, pens, hankies, glasses and toothpicks.
  • Have the small standing towel rack positioned by the shower with two large towels. 
  • Put a hand towel on the floor of the shower to prevent slipping. 
  • Make sure soap-on-a-rope, wash cloth and scrub brush are sitting on his shower chair and shampoo is beside it.
  • Pre-warm the water for him once he has undressed.
  • Don’t leave him to do his thing until he has given you everything but his briefs (he may keep his briefs and his dignity but everything else is going in the wash). Put them in the washer but do not start the wash until he finishes showering.
  • Leave the room for a moment when he is walking in to the bathroom but come back after a few seconds and check that he is really getting in. He has tried to fake us out before by just wetting his hair.
  • Once he is in, check on him every so often to make sure he is really washing. 
  • After he is out, you can start in the washer. 
  • Wash briefs and towels separately with plenty of bleach.  (Truthfully, I did not expect Tom to do the wash at all. I figured his hands would be too full just trying to get Dad to cooperate.)

 I sent these instructions over a series of several texts and was concerned that I was annoying Tom because his answers were so short: “okay” and “thanks”. To my surprise my cell phone rang early that evening. It was Tom.
“Are you stuck?” I asked, thinking Dad had already managed to stonewall him. 
“No, I’m goin’ in!” he said jokingly like a man entering a warzone. “Any last things I should know?”
Pleasantly surprised I said, “Take the dirties out of the room as soon as they are off. If you don’t, he might try to put them back on when leave the room.”
“Okay. Where should his uniform be?”
“On the bed so he can see it but far enough away that he can’t reach it”, I instructed. 
“Okay, good”, he said. 
I was glad to hear him so enthusiastic and wondered if Dad would give him a hard time or if it would be easier for Tom, being a guy.  I waited for word…and it wasn’t long before I got a text.
“He’s in the shower!” it read. 
“Wow! That’s great, Tom!” I responded, genuinely impressed. His response was priceless.
“I feel like I just negotiated a major peace treaty! Thank you times a thousand!!”
“It does feel good, doesn’t it? :)”, I responded. 
“How about the clothes?”, he asked, “What should I do with them?”
“Throw them in the shower with him!” I joked.
“Just wash the briefs and towels separately from the rest”, I said, impressed that he would take on the laundry as well. “Thanks for following through!”
“Thank you! Love you, li’l sis.”
“Love you, too, bro!”

To be continued….