Category: My Dementia Caregiver Story

The Long Gray Line Visited My Dad in Hospice

kayanddad
One of my favorite pictures with my Dad at Fort Belvoir prepping for a parade.

Today The Washington Post included a story from a son who watched as his mom started to talk to her dead relatives when she was in hospice care. It freaked him out, as one would expect. To me, it brought a smile as I recalled the final night of my dad’s life.

Let me explain …

My dad was moved into a hospice facility when we couldn’t arrange the right care for him in his retirement community. He was living with my mom who had vascular dementia and didn’t want any help in the apartment, but dad needed constant support to keep him comfortable.

I end up in the hospice facility with dad in what turned out to be the final night of his life. He was medicated for comfort, but would have periods of wakefulness. During this time, I watched as my dad was looking right to left and saluting. I had seen him do this many times before–he was saluting soldiers marching past his bed that I could not see.

What I recognize now, but apparently instinctively felt, was that my dad was very close to death. My siblings will recall my angry phone call which was very much out of character asking them why they weren’t bedside.  To be fair, my siblings had been with dad all day and helped move him into the hospice facility. None of us expected his stay to be so short.

I look back on that experience and agree with the author of the Post article. I believe my dad got comfort from seeing as West Point describes as The Long Gray Line of soldiers marching by as he was preparing to join them. Remembered. 

 

Alcohol Consumption and Brain Health

redwineApparently, even one glass of red-wine now is out. For those of us who are caring for or who have cared for someone with dementia, brain health is more than a casual interest. At least, it is for me.

A story in the Health Section of The Washington Post shared the results of a study from BMJ reporting that Even moderate drinking is linked to pathological changes in the brain.  The words they used were atrophy. Now that doesn’t sound good at all. The report tracked 550 adults for 30 years and found that testing showed that people who drank the most during the three decades had a faster and greater decline in cognitive functioning than those who consumed less alcohol.

The only caveat I saw that made me hopeful was that the study only included men (however that still impacts many people I love). The outcome was that the study basically drew the line between someone who drinks and someone that doesn’t. One 12-ounce beer, one five-ounce glass of wine, or one 1.5-ounce drink of 80-proof liquor. One.

This is a topic that interests me as well as many older adults. What are you doing to have better brain health?

I focus on the biggies: Physical exercise, nutrition, sleep, as well as challenging my brain with new activities. I am also now very afraid to ever “retire” and tell myself that I will work in some form until I can no longer contribute. This is a question I repeatedly am asked and will spend a few blogs over the summer sharing the research behind what you can do.

Please reach out if you have found some data to suggest something that has a positive impact on our brain health. Asked. 

My Journey As a Caregiver … in 3 Parts

KaywParents2013I was asked to share my caregiving journey on Healthline. It turned into a three-part series, and might have some information that you find beneficial.

1) The Fight to Become My Parents’ Caregiver

2) What It Means to Be a Caregiver

3) The Painful Choices End-of-Life Brings for the Caregiver

I’m happy to be on the other side of the journey, and can now treasure all the skills I learned, and the moments I shared with mom and dad. Traveled.

3, 2, 1, … Enjoy Your Loved Ones When You Can

momxmas2014CHRISTMAS 2013: Just three years ago, mom was opening up a basket of breakfast treats. I remember feeling a bit lost about how to manage through the holidays. It was only a few months after Dad died. With no short-term memory, Mom, with Vascular Dementia, was having a hard time remembering, absorbing, and even grieving her partner of 60+ years. I wanted her to have a nice Christmas and worked to find a cute little Christmas tree (shown behind her) in hopes she wouldn’t feel so alone in this world.

I remember at this time working with the staff in her Assisted Living community to help her manage. She was calling me repeatedly asking about Dad. She was also getting into physical disagreements with other residents and the community was having a hard time helping mom through this period. This was about the time I started to recognize that the community she was in really wasn’t the right fit for her needs. Mom needed a memory care community — not Assisted Living which addresses physical healthcare needs. She was always on the go and craved activities with meaning and purpose.

Thankfully, my sister came and spent several days with her and I had a nice reprieve from caregiving over the holidays.

kayandkittyxmas2014Christmas 2014:  I had found mom a new community, but one week before the move date, she had a terrible reaction to a pain medication that resulted in her being bed-bound for nearly a month. After being in bed for so long, she was weak and didn’t trust her own two feet. It was several months before mom was back on her feet and moving around. On this Christmas she was still using a wheelchair to get around.

I went to visit her on Christmas Day and after opening up presents and eating a little, she asks to lie back down in bed. I arrived with my ugly Christmas sweater in hopes of bringing some silly humor to the holiday. She was in good spirits and we had a nice afternoon together. Before I left, she thanked me for “making her feel human again.”

Christmas 2015: Ten days before Christmas I was in the Emergency Room with mom who was diagnosed with a broken hip. She had a mini-stroke somewhere in the midst of all the commotion. We learn she is too weak for surgery. Mom no longer recognizes me and is moved into the care of hospice. I visit mom daily and spent most days crying as she sleeps. On Christmas Day, her breathing is a little more jagged, and by early evening I get the call that mom died. As bitter as that moment felt, I also recognize that we just received a blessing. Mom no longer has to live with dementia and can now rest with Dad.

As I approach my first Christmas without having to balance life as a caregiver, or worry about how mom will spend her holiday, I recognize how quickly the journey can end. This year I will focus on the wonderful holidays I did get to spend with my parents. Reflected.

This will not be “Hanksgiving”

thanksgiving2Thanksgiving is my favorite holiday. It’s all about family spending time together around a meal. I was raised with family dinners and am sometimes fighting to maintain them in my own household. Now that we are usually down to three, we usually only set the dinner table on Sunday.

This is the first holiday without a parent for me. My husband and I talked through how this might be our smallest Thanksgiving with just the four of us around the table. Last year his parent’s were visiting. The year before I brought mom over to the house. We counted back through the years. For nearly two decades, we have hosted Thanksgiving at our house and my parent’s joined us.

It was just five years ago that we realized how unsafe it was that my parent’s were still driving. When mom and dad had not shown up when expected, we started to call their home and their mobile. Eventually, we get a call from a gentleman two neighborhoods over who said my parents were on their way. When they don’t show up, we wait another 45 minutes until I get a call from my dad from a pay phone. They are now about 15 miles away and have no idea where they are. I tell him to stay and I drive to them so they can find their way to my house.

Two-hours later than we were planning on eating, we finally sit down to enjoy the meal. However, I was so upset and worried, that I could barely eat. My parent’s are agitated after being so lost and are really unsure about what happened. Not a word about it is mentioned at the table. How I don’t miss those uncomfortable days one bit.

How I do miss having my parents join us for Thanksgiving. A time to relax with loved ones around a great meal to share our appreciation for each other.

Many have shared with me how the holidays the first year are the most difficult. I didn’t notice it as much with dad because I was so worried about mom dealing with those holidays. Now I clearly recognized the void.

I am most thankful that I had such wonderful parents and had the opportunity to help them lead a life with dignity until the end. I will spend my time with a hanky and mourn their loss. But I will work to count all the blessings we have and enjoy the time with my husband and kids. Thankful.


As I look at the room around me, I see my parents are here with us. The room is filled with furniture from their home, pictures my mom framed or painted, or things I bought with them at one of the many auctions we went to together. Blessed. 


 

 

How Much $$ Could a Flu Shot Save You?

needledollarAs a caregiver, I started to think about how my health (or poor health) would impact my parents. I didn’t want to be the one to bring the flu to them, so made sure I got annual flu shots.
In my role as a Daily Money Manager, I research varied ways to save my clients money—from simple things like reviewing phone and cable plans to bigger issues like refinancing and downsizing options.
At a recent training workshop, I learned that the lack of vaccinations is estimated to cost the American people $15.3 billion. It never really dawned on me how much money NOT getting a flu shot costs me either directly on medication and doctor visits, or indirectly through lost wages and discomfort.
In addition to the flu vaccine, three other vaccinations are recommended for adults over 65 years of age. Not only should you check with your doctor about these vaccines for those you are caring for, but they might also benefit you and I hope you will discuss them with your doctor.They include:
  • Shingles or herpes zoster vaccine — if you know anyone who has developed shingles, you know how debilitating it can be. The healthcare cost of treating shingles is estimated at $1 billion a year.
  • Tdap — while many of us with kids still in the household are familiar with this vaccination, only 16% of adults over 65 have gotten it. My son received the vaccination that includes vaccines for tetanus, diphtheria, and pertussis but did contract whooping cough. It was awful in a 13-year-old, but apparently, it’s even more devastating for adults. Next time you need a tetanus shot, ask if you can get Tdap instead.
  • Prevnar 13 and Pneumovax 23 for the prevention of pneumonia, which kills more annually than any of the others mentioned.
I still giggle when I think about my dad’s dedication to getting his flu shot every year. During the last month of his life (which we didn’t know at the time it would be), when he was just diagnosed with a tumor on his tongue and having a hard time managing, we took him to the Emergency Room. I left the room for a moment and while I was gone, apparently they asked him and he agreed to get his flu shot. Remembered. 

What would my parents say?

KaywParents2013I was surprised to wake up to the news that Donald Trump would be our next President. My husband and kids all agreed we weren’t so happy with our options. This year felt very different because the issues weren’t really around political beliefs, but around personality, behavior and ethics. We found little room to really discuss the political views of the candidates.

I know my mom would have cherished a woman President, but I’m not sure what she would have made of the run up to the election. As career Army, I always guessed Dad was a Republican, but it wasn’t something he was likely to discuss. I’m not sure what my dad would have made of Hillary Clinton as Commander-in-Chief, but I do know he was a quiet leader and Donald Trump’s style would have made him bristle.

On days like this I realize it’s the small moments when I sure do miss them. Recognized.

A Caregivers View of Estate Planning

Dr. Charles Parker interviewed me to learn more about my caregiving journey and why I was so passionate about other families avoid the roadblocks we faced. You can download this interview or listen on a variety of services here.

aging-parentsIn time, my parents turned to me for help. I developed a deeper relationship and helped guide their care as well as end-of-life wishes. What I learned I use to provide classes for caregivers to help them on their journey, as well as offer all adults an understanding of why going deeper than estate, financial, and insurance plans is a necessity for anyone who wants to lead the life they choose.
~ Kay Bransford

Aging Parents: Why Kay Became Organized For Her Family

My aging parents’ health started to fail, and they were simultaneously walking into different forms of dementia [Mom = vascular; Dad = Alzheimer’s].

They didn’t recognize they needed help and would not accept it from their children. We were all worried for their safety and the safety of others. I had to learn how and when to step in to offer help; how to respect the parent-child relationship but guide them toward safer living arrangements, hide the cars as they continued to drive with revoked licenses, and manage their financials while ensuring they still felt meaning and purpose.

Noteworthy

My parents had planned well (estate, insurance, financial plans and moved into a continuing care retirement community), however, when I needed to step in as a personal and healthcare advocate, I didn’t have the knowledge or authority that I needed to help them. I created a system for myself, then others asked me for it, and I realized there was a greater need and wrote up a business plan and won an award from AARP Foundation for this idea and plan.

I changed a great deal. I had to change because my parents could not.

Here are some of the key topics covered in the CoreBrainJournal interview: 

Kay’s professional mission – end of life planning [1:30]

Parent denial of deterioration [5:04]

Her transformation into family manager [9:50]

Broader applications for more effective family interventions [10:40]

She takes us beyond “estate planning” [16:30]

Get that Durable Power of Attorney [20:20]

Important differences with Powers of Attorney  [21:38]

Kay’s professional mission – end of life planning [1:30] aging parents, organization, end of life, family planning

Parent denial of deterioration [5:04]

Her transformation into family manager [9:50]

Broader applications for more effective family interventions [10:40]

She takes us beyond “estate planning” [16:30]

Get that Durable Power of Attorney [20:20]

Important differences with Powers of Attorney  [21:38]

Is our life the sum of our memories?

memoryfeatsIn a TedTalk, Joshua Foer shares a talk on “Feats of Memory Anyone Can Do”. It’s an interesting talk on the evolution of memorization, and points out to us how the state of our memory has declined, because we have outsourced so much of it to books, notes, our phone … the everyday tools we use.

If you think you are too old to learn new tricks, spend a few minutes watching his popular TEDTalk. We have a lot to gain if we spend a little time honing our memories and you and everyone around you benefits. Inspired. 

 

 

4. Don’t assume they can’t understand you because they are silent.

silenceThis is the fourth of my list of things to never say to a person diagnosed with dementia.

Early on, before we had a diagnosis but recognized something was wrong, I would try to over-explain things. This would only make my mom more talkative as she tried to ask questions but usually the conversation would get jumbled up and veer off in an unusual direction.

My dad on the other hand got silent. Whether it was because he didn’t want to talk, wasn’t sure what to say, or had no interest, I will never know. What I did find was that when my mom would start questioning him, he would just go silent. We initially thought our dad was depressed, and most likely he was, but he was also in the early stages of Alzheimer’s when we first noticed his silence.

Later, my dad got into the habit of saying “It’s a nothing-burger” when I raised something he didn’t want to deal with and to my mom would just reply “I don’t know” to defuse her rapidly escalating anxiety.

What I would realize after a few months of pure frustration on my part was that my dad did understand, did know the answer, but just didn’t want to discuss the matter.

I carried this knowledge with me through my mom’s move into a memory care community. There were quite a few silent residents who would respond with a smile at a simple “Hello” or would immediately come join you when invited to sit outside on a park bench. Even through my mom could talk, she started to talk less. It felt like she was feeling less sure of the words coming out of her mouth. Some days, she would be up for a lively conversation, and others, she would just wait until I shared another story.

Some much of what you learn is to see and respond to the person in front of you today. What my mom liked last year, or even yesterday, may not be something she cares for today. I was never one to find silence uncomfortable, so sitting outside with mom and just enjoying our surroundings became one of my treasured activities. Some days, I can still imagine she is right by my side when I close my eyes. Treasured.

 

 

Don’t Yuck Someone Else’s Yum

cherrypiecokeI’m not sure why I thought a bike ride on this 90 degree Washington, DC afternoon sounded like a good idea. I wanted to exercise and suggested to my daughter that we ride to one of our favorite lunch spots. I knew the route was hilly and after our successful ride a few days prior knew she could easily manage a 5 mile ride. What I didn’t realize is that she isn’t used to riding up hills. After the first hill where she so proudly raced past me and beat me to the top, she asked me to ride home and get the car. I talked her into making it to the lunch spot. Turns out she only had a piece of cake for breakfast and was running on fumes.

My mom is the one that originated the dessert is a fine breakfast idea. I grew up knowing my mom’s favorite breakfast was cherry pie and coke. While I had no interest in it growing up, my husband laughed when I told him the story because he said I have sanctioned cake for breakfast for years. However, I wouldn’t have only eaten cake before a bike ride!

After we eat, my daughter feels better and tells me after we complete the second big hill on the way back that she’s telling herself “Your mom didn’t raise a quitter, so don’t you quit!” I am a pleased to hear it at first, but then share with my daughter that it sounds like negative encouragement or as a sports psychologist once called it “stinking thinking”. I ask her if she might consider another more positive phrase that would encourage her?

That is when she tells me “Don’t yuck someone else’s yum.” I turn that over in my head a few times and realize what a great point she just made. I also realize that I give this courtesy to others, so why aren’t I giving it to my daughter?

I have learned so much on my journey as a caregiver. I learned to watch without judgement, to not let things that I could not control drive me nuts, and to let others find their way. Now I need to learn how to balance those lessons with being a mom. Challenged.