Tag Archives: dementia

May 13, 2012 · 1:34 pm

Dad ruins Mom’s first Mother’s Day

With it being Mother’s Day, I was thinking about how my mom told me her first Mother’s Day turned out. It didn’t involve flowers or a nice brunch.

Dad was in the hospital.

Mom spent her first Mother’s Day lugging a cranky baby down the street to Kaiser Permanente hospital, where my dad was recovering from foot surgery. I’ve written before about my dad’s flat feet. At some point, he ended up with a very painful infection and had to have surgery to remedy the problem. He ended up with some post-surgery complications and was in a lot of pain. So Mom spent her first Mother’s Day visiting a loopy Dad, who was on some strong pain meds by then.

Despite the many hospital visits over the last couple of years of Dad’s life, he stayed in pretty good health after he recovered from the foot surgery. There were those occasional ER trips because of his stomach issues, but no inpatient stays until the dementia had taken its toll on his body.

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May 11, 2012 · 2:37 pm

Dad giving Mom her quiet time

My mom and dad spent a great deal of time together, especially after my dad retired. As with most people, they could end up wearing on each other’s nerves from time to time. As I’ve mentioned previously, Mom always babied Dad a bit. The man was barely allowed in the kitchen, unless it was time to eat. I don’t think Dad (in his right mind) could have made himself a cup of coffee if his life had depended upon it. Mom made all the meals, all the snacks and every cup of coffee that passed Dad’s lips at home. The home was her domain (befitting her Cancer astrology sign) and Dad knew his place in the home.

And I don’t think Dad minded this arrangement one bit. After all, he came from a generation where the woman was the homemaker and stayed at home to raise the children and support the family’s needs.

My mom told me recently that before Dad had dementia, sometimes she would just need some alone time, and gasp, didn’t feel like making dinner. So she would send Dad off and would tell him he was on his own for dinner. He never once complained about being shooed out of the house. He usually ended up at McDonald’s. One time he brought her home a cookie from whatever restaurant he dined at. I’m guessing Dad needed his alone time just as much as Mom did. Of course, once the dementia set in, Mom would have given anything to have another non-eventful meal with that former version of her husband, the easy-going man who she was married to for 40 years.

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May 9, 2012 · 1:48 pm

Dad’s prayer to me

Dad and I had very few one-on-one conversations with each other. My mom usually led the family discussions, and my dad would just kind of hang out in the background. Over the years, he learned to tune out my mom quite effectively! (Mom loves to talk and doesn’t necessarily seek feedback, so that’s why their relationship worked.)

Years ago, before Dad had dementia, I told my parents that I had tested as gluten intolerant and had to go on a gluten-free diet permanently. My mom had a ton of questions, but my dad didn’t have much of a reaction either way. Not a big deal, Mom was the cook of the family.

Years later, when Dad was at the moderate level of dementia, my mom gave me the following prayer request. It had been an extremely difficult day (which I will explain in another post) and my mom pulled this card out of her purse and quietly said, “I thought you would want this.”


It was one of those Catholic prayer request cards. Dad had filled it out, but never mailed it. I’m glad he didn’t. It’s a bit difficult to read, so here’s what it says:

“My daughter Joy who has an eating problem for several years now. She is restricted to a diet where she has to avoid wheat in her food. Under no circumstances can she eat food with wheat in it. Your prayers will be appreciated.”

Wow. I was blown away that Dad had been paying attention all those years ago. My mom and I shared a sad smile across the table as Dad sat next to us, oblivious to the emotions filling the room.

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May 8, 2012 · 1:02 pm

Dad’s love affair with Costa Rica

Dad threatened many times when I was a kid to move the family to Costa Rica. His love for the Central American country was based upon secondhand knowledge and photos and stories from books and magazines. One of his co-workers had traveled to Costa Rica and enthralled Dad with tales of a cheap cost of living and the locals’ love of Americans (and their American dollars I’m sure, this was when the dollar was still pretty strong.) He told Dad that most of the locals spoke English and you could get a huge house on the beach for cheaper than renting in California.

Most are all of this may have been true. But Mom and I were not too worried about having to pack up and leave the country. My dad’s dreams of Costa Rica were more a way for him to battle his frustration at the high cost of living and unemployment woes facing him in California in the mid-1980’s. I also think part of him cherished a romantic ideal of living the life of some bohemian writer or artist in a tropical paradise. Maybe his Costa Rica dreams helped him survive all of those years living in boring suburbia!

Many kids would have thought a move to a foreign land would be exciting, but I was not the type of kid with an adventurous spirit. I always backed my mom up when she would shoot down Dad’s occasional “let’s move to Costa Rica” campaigns.

How different our lives would have been if we had made a move like that!

I hope he was able to escape to the sunny beaches of Costa Rica at least in his mind as his mental and physical health declined.

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May 7, 2012 · 1:16 pm

Trying to see past the Alzheimer’s

I was reading a fascinating article today about a program at Harvard that connects college students with those suffering from Alzheimer’s in nursing homes. The students visit their “buddy” each week, and the unique part of the program is that it tries to connect resident and student by interest. So one student spends time talking about science with a resident who loves the same subject. It sounds like a neat program. The student that founded the program said, “When you have a family member with dementia, you know who they were, so you really see the decline and what’s not there. That’s one of the cool things about this program. We get to see what is still there.”

This is one image of my father I like to envision when I think of him now, instead of how he looked when he was dying.

This is so true. It’s so difficult as a family caregiver to ignore the pieces of your loved one that become lost to Alzheimer’s, instead of focusing on the core of the person who still remains. I remember different nurses at different hospitals commenting on my dad, “I’d love to see photos of your dad when he was younger. You can tell he was a handsome guy.” When I first heard this, I was shocked. All I could see was the pitiful, emaciated, confused man curled up in the hospital bed. But the nurses had the wisdom to see beyond the present, and imagine the past of a stranger they were not familiar with. They could peel off that layer of dementia and sickness and see who was really underneath. It’s a gift that often eludes those of us that are family members.

Of course, it’s unlikely that a family member can ever be as objective as a stranger can be in this situation. We should not feel guilty for acknowledging the loss and the damage that this disease causes. But it is worth taking a moment to step back and try to see our afflicted loved ones through the eyes of a kind stranger, instead of through the warped lens of dementia.

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May 6, 2012 · 1:51 pm

Currency that can’t be cashed

I’ve been all over Atlanta trying to cash in these pieces of foreign currency that Dad had stashed away in one of his many wallets. The bills came in holiday cards from his family in Ireland, who always told him to “have a wee drink on them.” It was a family tradition. When I was a girl, they would include money in my birthday cards. (No, they didn’t tell me to have a wee drink, ha.) Before Dad had dementia, he was prompt about getting the foreign currency cashed.

But once the dementia took over, he would forget to even open the cards his family sent him. His sisters revealed how concerned they had been when my mom called his family to tell them he was in the hospital. They had not been receiving responses back from Dad. In addition to writing, Dad had lost interest in calling them on the phone as the dementia progressed.

My mom asked for me to help out with these last few bills that her local bank could not convert for her. So I went to the branch of my bank in my neighborhood, and they told me I needed to go to another location. I went to a branch in what is known as the “financial center” of town where I work, and they directed me to an American Express office that handled currency conversions. So on my lunch break, I walked down there with this envelope that I’ve been carrying around for months.

The clerk only had to take a momentary glance. “Sorry, those are too old to cash here. If you ever go to Europe, you might be able to get them converted there.”

Well, that’s not happening any time soon, so back the envelope comes with me. I don’t care whether I ever get them cashed or not, it’s just another sad reminder of how dementia robs one of completing simple tasks and simple pleasures, like enjoying a token of love from your family. It’s especially ironic since Dad, like many Alzheimer’s patients, became obsessed with money, always asking about his $20, yet he had a stack of foreign currency long forgotten in his nightstand drawer.

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May 4, 2012 · 1:19 pm

Having a case of the caregiver’s guilt

I’m reading a great book right now, a collection of essays about the dying process called, “At the End of Life: True Stories About How We Die.” Yes, it’s depressing but there’s also so much in there I can relate to. One particular essay that is haunting me is by a young resident who wrote about the night she lost three patients. One of them was an old man with dementia, who was listed as “full code” despite being in advanced renal failure and suffering from dementia. He had not had any family members visit him. He died with only the hospital staff around him, after they embarked upon an all-out assault on his body to save him in what they knew was a futile but legally necessary procedure.

It seems like there are many elderly patients that die in hospitals without family or friends by their bedside. Sadly, my dad joined this statistic when he passed away.

Certainly this is tragic, though just like when people judge families that put their loved one in a nursing home, there’s more to it beneath the surface.

I remember the first time Dad was near death, and being insulted when the doctor asked if I knew my father was in the hospital. He had been there about 4-5 days by then. My mom had been calling daily, if not twice a day, to get his status, while she was preparing to make the long, difficult trek to the hospital. My mom doesn’t drive and my parents’ car was taken to the junkyard when Dad stopped driving. Mom doesn’t have any nearby relatives or close friends and transportation options are very limited. It would have taken my mom almost 12 hours to get to Albuquerque on the Greyhound bus! So from Ruidoso, NM, she had to find a shuttle service that would take her to Albuquerque, which is over three hours away. My mom had to make sure the bills were paid and everything was in order before leaving home, because she had no idea how long she was going to be in Albuquerque. So understandably, it took a few days for her to get to the hospital.

Dad’s final home, but I have never stepped foot in it.

I had been calling daily, but I was all the way in Atlanta, and was knee-deep in a big work project. Obviously, my dad was much more important than work, but I also knew by then that there could be ups-and-downs in his health. I had been preparing myself for his death over the past year, but it was so hard to know if this was the moment that I needed to be by his bedside. There was also the $1000 last-minute flight price tag to contend with.

I ended up flying out there and it ended up being a false alarm. Still, it was the last time I had the opportunity to see my Dad alive, so I’m glad I made the trip.

But it’s the last month of my dad’s life that’s been gnawing away at me. For all of December 2011, he had not a single visitor at the skilled nursing facility that became his final home. My mom was preparing to visit him over Christmas when he passed away. His dementia was advanced at this point, and he didn’t speak much, but still, I wonder if some part of him yearned for company. By that point, I had already filed for FMLA (though eventually my application was denied.) But I wish now I had taken that time off to go visit Dad. What did I miss out on by not being by my father’s side during the last days of his life? I let finances and work responsibilities rule my decision-making instead of my heart. For once, I should have gone with my heart.

It is a deep regret, knowing that Dad died around strangers, though by that point, I was a stranger to him as well. These are moments and decisions you can never alter. You try to do your best, but ultimately, you have to live with the consequences.

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May 2, 2012 · 1:03 pm

Getting lost at the fast food restaurant

I was thinking about my dad’s wandering escapades recently, and remembering the one that took place at McDonald’s. Poor Mom couldn’t even go to the restroom in peace without Dad taking off. The worst thing about that incident was that Mom went looking for him inside and outside the restaurant, and couldn’t find him. So she called the police, which she hated to do but was the right thing in that situation. The police responded and found Dad. He was standing by the drive-thru.

This made me think about an incident that took place when I was a kid, probably when I was in junior high. It was our traditional weekend trek to a fast food restaurant. This time it was Arby’s. I loved the curly fries and the Jamocha shake, but could take or leave the sandwich. Well, I liked the Horsey sauce, or maybe it was the name that I liked saying more than anything. Anyways, we were done with our meal and Mom and I headed to the restroom while Dad headed out to smoke. We had done this same scenario a hundred times before.

The scene of Dad's "lost and found" experience when he had dementia.

By the time Mom and I would be finished, Dad would be done with his smoke and in the car waiting for us. But not this time.

Dad was definitely not in the car and it was still locked. I walked around the building and looked for him, but no signs of Dad. Maybe the bathroom? Dad was known for his stomach troubles, which could come on suddenly, so we decided to give him a bit of time. The minutes ticked by slowly as we waited by the car. (Long before the days of smartphones, where you could kill time by playing a round or two of Angry Birds!) At least 10-15 minutes passed, and no sign of Dad. Mom started to get worried so we went back inside the restaurant and asked a male employee if they could check the men’s bathroom for us. They did, but no sign of Dad.

Dad wasn’t a likely kidnapping target, but we were starting to run out of ideas. Finally, as if by magic, Dad appeared, walking over from the tire store next door. Why in the world he had a sudden, urgent desire to look at tires I’ll never know. Mom scolded him for making us worry but he just shrugged it off.

I don’t remember this happening again until Dad started showing signs of dementia. It was just a strange, momentary glimpse of what was to come.

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April 25, 2012 · 11:23 am

Missing my chance to connect with Dad through music

I was viewing this poignant photo gallery of people with Alzheimer’s around the world. I was struck by the photos of those finding joy in music, with one woman playing the xylophone even in the final days of her life. Then there was the video that I saw posted on the Hot Dogs and Marmalade blog about the magic of music.

One big regret I have about my dad’s care during the last month of his life, other than not being there in person for those final weeks was that I didn’t bring music back into his life. The palliative care doctor asked what kind of music Dad liked, which caught Mom and I by surprise a bit, as we had spent most of the time answering routine questions as the doctor filled out a long form. She asked us if he liked Irish music, as she had some CD’s at home that she could bring in and play for him. I don’t know if she ever did, because I left for home and Dad was transferred out of the hospital a few days later.

The last photograph of dad and I together, July 2011.

I’ve written many posts about how my dad loved to sing, especially the classics by Frank Sinatra and Bing Crosby. There is a cassette tape recording of my dad singing to me when I was a baby, and the recording is in remarkably good shape. Before my father passed, I remembered the tape and was eager to get my hands on it. Luckily, it was in a very convenient spot, in a shoebox on the top shelf of the closet in the guest bedroom of my parent’s home. Being the modern gadget gal that I am, I no longer owned a cassette recorder so I ordered one from Amazon which could create an mp3 file on my computer.

I couldn’t wait to get home and start the process. I had to fiddle with the program a bit and only got a fuzzy but listenable file the first time around. Then Dad took another turn for the worse and I had to rush back to New Mexico and abandon the project for awhile. But I did have the first recording on my tablet and I thought about playing it for him, especially when he had the private room on the CCU floor at Presbyterian Hospital in Albuquerque. Of course, most of the time there he was sedated, but some experts believe there is some level of consciousness that remains in that state. I felt awkward playing it with so many staff members coming in and out, and of course my mom, who bless her soul, probably would have talked over the entire thing. By the time he was becoming a bit more aware, he was moved to a semi-private room where the TV was blaring.

There’s no guarantee that music would have made a difference, but it’s an opportunity forever lost. One last chance to connect, to bring back a happy memory, to maybe even make a smile appear on his haggard face. A moment that was never to be, because I was worried about things that didn’t matter.

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April 19, 2012 · 11:42 am

Dementia a robber

The news that coach Pat Summitt was stepping down as head coach of the Lady Volunteers was not surprising news, but it is a sobering reminder of how dementia can rob the most vital people of their precious gifts.

My dad was not a high-profile college basketball coach, but the impact of Alzheimer’s was still devastating. I can’t imagine what would have happened if Dad had still been working when his dementia symptoms started. Fortunately, he was retired. He often mused on getting a part-time job in Ruidoso, but he never did. Then it became too late.

Tennessee Lady Volunteers coach Pat Summitt. File photo.

But even for those that are retired, there are chores, those daily jobs that we execute with barely a thought. But once my dad’s dementia progressed, completing the smallest jobs, like going to the post office to mail letters, or paying for an item at a store became difficult, then impossible. It was painful to watch my dad be robbed of performing the simplest of adult tasks. He was being forced back into childhood, with no hope of growing up again.

Summitt is such a strong woman and she already is a great advocate in the fight against Alzheimer’s. Maybe when people see vibrant, ultra-successful people like Pat Summitt battle this disease, they will take notice that this is an epidemic that we must focus on as a nation and world. The disease is claiming too many minds, too many lives, both known and unknown, but all loved by someone.

Learn more about the Pat Summitt Foundation.

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