Archives

Where Have You Been?

Oct17

This is an incredibly poignant post about the history behind the song, “Where Have You Been?,” recorded by Kathy Mattea. This song was written by Jon Vezner about his grandparents. His grandmother suffered from some form of dementia.

What makes this personally poignant to me is that this was the exact question that Mom joyfully and buoyantly asked my twin sister and me upon waking on her “last rally” day (she went into her death sleep the next day, then died two days after that).

It was the first time in about a week and a half that she knew who I was, although we were living together and I was her primary caregiver throughout her suffering with vascular dementia, Lewy Body dementia, and Alzheimer’s Disease, and that she knew I was there with her.

I am very thankful for that day.

Dying Wishes – The Discussion Everyone Needs to Have with Their Loved Ones Long Before They Need to Be Honored

Sep29

Ellen Goodman is one of my favorite essayists and authors. My first exposure to her writing was an essay entitled “The Company Man.” Even though I was just 16 years old when I read it in my AP English class, it had a profound impact on me. I still often think of it when the days and nights of life get long, hectic, and overwhelming and it helps me to step back and do, if nothing else, a little reset to get my priorities realigned.

Therefore, when I read her post on the living-or-dying decision-making (and second-guessing) she had to do for her mom when Alzheimer’s Disease had forced Ellen to be the decision-maker, I found it very interesting.

And familiar. Because even if you’ve had “the conversation” many, many times, I think second-guessing, especially toward the end of life when push comes to shove, is inevitable.

Mama and I had talked in-depth about her dying wishes for years and we had the documents and the paperwork done well in advance of her dementias, Alzheimer’s Disease, and congestive heart failure diagnoses.

Living will - dying wishesShe had a living will with no extraordinary measures, as I do. And she decided on a DNR after Daddy died without one and she saw first-hand the effects of futile life support that he had to go through in that last hour of his life because he didn’t have a DNR.

Even though Mama was a medical professional, as was Daddy, I believe the impact of seeing her soul mate and best friend go through being kept artificially alive even for that short period of time was profound and life-altering for her.

We talked about it a lot right after Daddy died, and I told her I had a DNR and had gotten itDNR (Do Not Resuscitate) in my early 20’s and I told her why I had (and still have) it. It made sense to her and we had her doctor draw it up and certify it.

As Mama’s heart health declined, we continued to have conversations about what she wanted and didn’t want as far as quality of life versus quantity of life.

We were so much alike in our very strong views that quality of life was what was important and not quantity (and this really is the core issue that must be addressed and resolved as part of the dying wishes conversation) that we never disagreed on care, treatment, and outcomes.

But it was because we had these heart-to-heart talks a lot in the last years of Mama’s life and we openly and frankly discussed death as the inevitable outcome and how Mama wanted that to be, as much as was within her control. 

When Mama told me she didn’t want to go to the hospital anymore for treatment for her congestive heart failure, I honored that wish, despite the frantic response about liability from the nurse on the phone when I called to have Mama’s doctor give us a prescription for the medicine (Lasix and potassium) and a schedule so that I could treat Mama for it at home.

The doctor ended up calling me himself and he got Mama in the next day to the office and gave me the prescriptions and schedule to do at home with a follow-up visit within the week with him. And we continued to do this at home until Mama’s death. That’s what she wanted and I was determined to make sure that her dying wishes were honored.

The issue came up again three months later when, on her birthday, Mama started throwing up in the afternoon and had chills and sweating. I wasn’t sure whether the symptoms were heart-related or not, so I took Mama to the ER. She had a gall bladder infection and after we were transferred to a bigger hospital early the next morning, a gastrointestinal surgeon came in and tried to talk us into putting Mama under general anesthesia to remove her gall bladder.

I refused that because I knew with Mama’s weakened heart, she wouldn’t survive it and told him we needed a Plan B. He reluctantly said they could put a drain in with local anesthesia to drain the infection out, but that reinfection was likely within a year. I realized even then that Mama’s health was such that it was unlikely that she would live long enough for a reinfection to occur, so after she and I discussed it, we agreed to the drain, which was successful in removing the infection.

It wasn’t until the very end of Mama’s life that I did any second-guessing. I knew logically and intellectually what she wanted and I was committed to honoring that. And I did.

But most of my second-guessing came in the form of wanting to be sure that I wasn’t overreacting as death approached and that once it was clear that Mama was in the dying process, I wanted to be sure she wasn’t suffering and I didn’t know how to gauge that (she wasn’t and I know that now, but it was paramount on my mind then).

The reality is that, with appropriate comfort care during the dying process, it’s harder to watch someone die than it is for them to actually die. Because we watch our loved ones die with all our senses intact, all our systemic functions intact, and all our alertness intact and it’s almost impossible to not project our intact selves into the process.

And that is why having the dying wishes conversation with our loved ones long before we have to honor it is so important. Most people seem to be very uncomfortable with this conversation – and the subsequent similar conversations that will and should follow it.

But let me ask you a question that shows why we need to get comfortable with it.

What if something with a life-ending outcome looming happened to you today and you’d never discussed and formalized your dying wishes with your loved ones and they were suddenly thrust into the position of having to decide whether to postpone the inevitable or let you go with no intervention in God’s timing?

Would you want your loved ones to be in that position? Would you want to be in that position? Think about it. And have the conversation. As soon as possible. 

Jigsaw Puzzles – Activities We Can Do With Our Loved Ones With Alzheimer’s Disease and Dementias

Sep13

I will be posting from time to time on activities that we can do with our loved ones with Alzheimer’s Disease and dementias, so today I decided to start with jigsaw puzzles.

I remember as we were growing up that Mom would start a 1000-piece jigsaw puzzle, putting it on the end of our incredibly long kitchen table, two or three times a year, and we, as a family, would work on it, sometimes together and sometimes one at a time, for several days until it was finished.

Those puzzles became the focal point of concentrated time together, no matter what else what happening in our lives. Even if – as was often the case as the three of us kids crashed at the same time into adolescence – we were all out of sorts in one way or another with each other, those puzzles would bring us together. And even if we weren’t talking or we were sulking or stewing or whatever else the teenage years brings with it, we’d all sit down and work together for a little while.

I have often marveled at Mom’s wisdom in doing this. She could be the hardest of us, at times, to get “unmad,” but somewhere along the way, she realized doing jigsaw puzzles was a way to rebuild bridges among us and reestablish lines of communication.

Once we kids left home, I don’t remember Mom ever doing a jigsaw puzzle again. It wasn’t something that Dad ever did with us, so when the time came that it was just the two of them again, they found other things they enjoyed doing together.

But after Dad died and Mom moved into a senior living community she chose, Mom started working on jigsaw puzzles again. The “ladies” had a table in the community living room where they’d work on a puzzle. Because I was there every day, Mom would often ask me to come down and work on the current puzzle with her and we’d spend an hour or two working on it together.

As Mom’s vascular dementia and Alzheimer’s Disease became evident and were progressing, I looked for things we could do together that would keep her mind active and not frustrate her. I discovered that jigsaw puzzles were one of the activities that we could do.

But not just any jigsaw puzzles. Because Mom’s eyesight was getting worse as well and because her ability to identify shapes was declining, I found that large-format, 300-piece jigsaw puzzles were the best fit for our need. 

Buffalo Games and Ravensburger make the best-quality large-format 300-piece jigsaw puzzles. It’s best to stick with their jigsaw puzzles that don’t have a ton of detail (like the city jigsaw puzzles) to put these together with our loved ones with Alzheimer’s Disease and dementia. Too much detail is too confusing and frustrating.

There are several online stores that offer large-format, 300-piece jigsaw puzzles. The two that I used most often were Bits and Pieces and Puzzle Warehouse.

Jigsaw puzzles, interestingly, can give us a lot of insights about how the brains of our loved ones are functioning and the progression of dementias and Alzheimer’s Disease.

I always had Mom pick out the border pieces. As her dementias and Alzheimer’s Disease progressed, this was more problematic for her. The day we started our last jigsaw puzzle together in May 2012, she picked out some border pieces, but most of the pieces were just random.

The last jigsaw puzzle we completed together, a month or so before, I noticed how frustrating it was for her to do, even though she wanted to do it,  and knew somewhere in the back of my mind that was probably the last one we would do together.

The strangest thing I noticed all along, though, was that she would always go for the interior parts that were a solid color. Like the sky. Rationally, I knew that would be the hardest part to do because it was all one color and, yet, that’s what she would start on. I would try to get her to help me find pieces for more doable parts of the jigsaw puzzle and most of the time that worked. But inevitably, Mom would always go back to the solid colors. I’m not sure why, but it always fascinated me.

I’m thankful we had the opportunities to do jigsaw puzzles together. It gave us quality time together away from the day-to-day medical stuff and “have-to-do” stuff that can get in the way, if we allow it to, of our relationships as family, as friends, as parent and child. When we were working on jigsaw puzzles, we were able to capture the essence of who we were to each and other and together before all of that and who we were to each other and together in spite of all of that. 

We created good memories that I’ll carry with me the rest of my life. I’m including some of the jigsaw puzzles that Mama and I did together.

The Power of Music: Soothing, Calming and Connecting with Our Loved Ones with Alzheimer’s Disease and Dementias

Aug30

“And so it was, whenever the spirit from God was upon Saul, that David would take a harp and play it with his hand. Then Saul would become refreshed and well, and the distressing spirit would depart from him.”
I Samuel 16:23 (NKJV)

Music universally touches the soul. There is abundant evidence of how effectively music calms, soothes, and relieves the frustration and anxiety of those loved ones among us who, because of neurology and/or biology, are unable to always fully verbalize their needs and responses to our desire to meet them.

We grew up in home filled with music. Although neither of my parents was a musician – and they had only a 33% success rate of their children becoming musicians – they loved music. They had an eclectic and surprising, at times, range of tastes and genres. So from our earliest memories, music became the a mainstay of our lives.

My mom was the musical adventurer in our family, embracing and exposing us kids to a rich landscape that remains for us even though Mom and Dad are gone. I think I was the inheritor of Mom’s legacy, though, because my musical journey has always looked and looks much like hers in its breadth and diversity.

I will never forget a little road trip that Mom and I took just after U2’s The Joshua Tree was released. I loved U2’s 1983 album, War, but had been disappointed with everything before and after that until the release of The Joshua Tree. I was playing it and Mom asked me to turn it up.

I turned it up loudly enough so that she could hear the music and the words – and handed her the liner notes so she could read the lyrics – and as she listened and read, she smiled and said “I like this. It reminds me of the music I heard growing up.”

As I thought about it, I realized she was right about the striking similarity in tone and content between The Joshua Tree and the Depression-era music she’d grown up with that juxtaposed the discouragement with the harsh reality of life then with the hope and optimism of faith and belief in God and I understood that we both appreciated the album for the same reasons in different time periods.

One of her favorite tracks was “In God’s Country:”

As Mom’s vascular dementia, Lewy Body dementia and Alzheimer’s Disease progressed, I turned back to music for her to calm her, to comfort her, and to bring back happier times and memories of her life. And, as Mom took her last journey out of this life, I also turned to the same music for the same reasons.

(Ironically, so far, it is really hard for me to listen to all of Mom’s music yet without a lot of sorrow except in small bits and pieces here and there where I don’t have the opportunity to linger over it and have the flood of memories of our life through the years come over me like a tsunami wave.)

With technology, building a customized musical library for our loved ones suffering from Alzheimer’s Disease and dementias have never been easier. I will list a few low-cost and free options for building these databases for playback at any time.

spotify music application for PC and tabletsSpotify has one of the largest musical databases around and is an excellent choice. An unlimited subscription is only $4.99 a month and provides unlimited play time with no commercials (the free version gives you 10 hours of playback a month with a lot of commercials). The “shuffle” feature works well with mixing the music up and making each playback unique.

While Mom was alive, I had the unlimited subscription. I created several playlists for her that we listened to a quite a bit during the last year of her life. A lot of times I’d play them softly during her naps, which became more frequent and lengthy during the year.

But when she was awake, we’d talk about the music and occasionally, we’d sing along if we both knew the words or I would sing to her and she’d smile watching and listening to me.

If you’d rather build your own musical database, the easiest way is to convert YouTube videos to MP3 files and download them to your computer (I’d suggest storing them in your Music folder in the respective folders you’ll need to create for different types of music or artists to keep them organized and easily accessible), where they can be played back with Windows Media Player.

The steps to do this are fairly simple:

  1. Copy the YouTube video link you want to convert to an MP3 file
  2. Go to listentoyoutube.com and paste the link
    listentoyoutube-graphic
  3. Follow the directions for downloading the converted file
  4. Double-click on the file to play it in Windows Media Player

Once you’ve got Windows Media Player open, you can create playlists there and drag the MP3 files from your Music folders into each playlist. Then the next time you want to listen to a playlist, simply open Windows Media Player and click on the playlist. Windows Media Player also has a shuffle feature, which I would suggest using just to keep the order fresh and different each time a playlist is played.

So, if we haven’t already tried music as a comforting and soothing part of caring for our loved ones with Alzheimer’s Disease and dementias, then we need to implement it today. The benefits are not just to those we love because this is a wonderful way to connect and spend time together and intersperse some happy memories for us to carry with us when our loved ones are gone.

Steps On The Path – From “Momma and Me Our Journey Through Lewy Body Dementia” blog

Aug20

As I read this post tonight on Momma and Me Our Journey through Lewy Body Dementia, tears filled my eyes as I remembered a similar moment with my mom a week before she died.

Mom didn’t know who I was most of that last week, but she knew I was someone she could trust. At least after she cried out to God as I put her into bed the Monday of the week before she died and said the words that cut me to the very inner recesses of my heart: “Oh, God, she’s trying to kill me!”

Mom’s mobility was so limited after the major heart attack she suffered on August 2, 2012, that it took all my strength and effort for everything that required movement for her and with her. I was as gentle as I could be with her, and, in some ways, sacrificed my own body, to ensure that Mom was okay, safe, and not taxed any more physically than was necessary. Mom was worth it.

Azheimer's Disease Dementia Steps and Stairs Toward The EndEarly in the morning the Tuesday a week before Mom died, she was in the hospital bed I’d had delivered on Monday and I was in the recliner where she’d slept since we’d come home from visiting my twin sister in May (sleeping in a reclining position eased what I now realized were chest pains from her congestive heart failure).

I was in my usual half-awake/half-asleep nightly ritual when a severe leg cramp forced me out of the chair and onto my feet. As I stood up, I saw that Mom was awake, but the leg cramp was so bad, I knew I had to deal with it first before I could deal with her.

I have an old ankle injury (from a serious car accident when I was in college in which my foot got wrapped around the brake) in the leg that was cramping – which is also the leg that I’ve had three reconstructive, repair, and replacement surgeries on my knee – so I’ve learned over the years that I have to be careful not to pop the ankle when I’m trying to walk out leg cramps in that leg.

Walking wasn’t helping, so I sat in a chair and tried to massage the cramp out. It took about 15 minutes, but I was finally able to stop the cramping enough to go to Mom.

I walked over to Mom and took her into my arms and leaned down to talk into her good ear and ask if she was okay. She took me in her arms and held me close to her, returning my embrace fully, and said “I know I’m not going to get out of here, but you can, so as soon as you get well, promise me you’ll leave.”

I promised Mom that I would and we held each other, for me, as mother and daughter, tightly for several minutes. I kissed Mom and told her I loved her always and unconditionally, and she pulled me closer and squeezed me tighter to her chest and then fell asleep.

Other than Mom’s rally the following Saturday, this is one of the most precious memories I have of my last days with Mom. Even if she didn’t know who I was in a conscious way, somewhere deep inside she knew. She remembered. She loved me. She was looking out for me.

In Alzheimer’s Disease and dementia, there’s not a lot left for us to take away as the diseases destroy our connections to our loved ones. I’m thankful for each one that I have, no matter how thin, how temporary, how distant. Because I know behind each of those is my mom and our bond.

It promises me that some things can’t be broken. Ever. For that I’m grateful and thankful.

Guide to In-Home Medical Care Options for Our Loved Ones Suffering from Alzheimer’s Disease and Dementias

Aug20

This post discusses home health care, palliative care, and hospice care options. Included in the video below are descriptions of each of these options and recommendations and advice, from my personal experience as a loving caregiver for my mom, about each one.

To begin the video, simply click on the “Play” arrow and the video will play (there is no sound).

Please continue to give me feedback on topics you’d like to see discussed here. This is our blog and, while I’ve got content that I’ve prepared and am preparing, I would also like to address any topics, concerns, and questions you have about providing loving caregiving to our loved ones with Alzheimer’s Disease and dementias. 

Same Day-Different Name

Aug16

Excellent post on the benefits of being a caregiver. I know I’m thankful for the opportunity I had to be Mama’s primary caregiver and I’m grateful for the time we had together. I learned a lot of valuable lessons and I learned a lot about myself in ways that would have been impossible in any other situation.

It was a gift from her to me, although neither of us realized it at the time. The day is coming when we’ll both be able to look back and I’ll be able to thank her. Soon I hope.

Ray Burow's avatarNavigating Alzheimer's Disease

“For everything there is a season.” From the book of Ecclesiastes, there is “…a time for every activity under heaven“. This is true, but for caregivers, time seems to stand still. Day after day, month after month, season after season nothing much changes. Our lives seem to drift slowly away, dissipating with the time we spend caring for those we love. The tasks are heavy and each twenty-four hours is, the same day with a different name. Our experience is similar to those of actor Bill Murray’s character in the movie, “Groundhog Day”?  Murray was doomed to live the same predictable day, over and over again until he got it right. He was stuck for days in the same town, doing the same thing day after, livelong day. It made for a humorous movie, but for caregivers of Alzheimer’s patients, perpetual, predictable days are the norm…

View original post 456 more words

Mama: March 2, 1929 – August 14, 2012

Aug14

“Don’t Stop Asking About My Mom” – Poignant Dementia/Alzheimer’s Disease Post

Jul30

Poignant post from a daughter who’s mom is suffering from dementia/Azheimer’s Disease: http://mydementedmom.com/2013/07/30/dont-stop-asking-about-my-mom/

I identified with this post in a way that I can’t really put into words, but I know two things specifically echoed my own experiences.

One was how our loved ones seem to become invisible as they lose their ability to recognize, communicate, and respond in tangible ways with most people. Touch, as the author points out, is huge. Hugs, kisses, putting my arms around her shoulders, and holding her hands a lot were how my mom and I stayed connected, more so after the dementias and Alzheimer’s Disease, than before.

And the other is one that has long been a principle for me. Quantity (of life) doesn’t matter if there is no quality. It’s why I’ve had a no-extraordinatry-measures living will and DNR since I was in my early 20’s and why Mama did the same for herself after Daddy died.

Medicine can give us time, but it will never be able to give you the intangibles of “good,” “healthy,” “sound,” or “well.”

And, without those, time is useless.

“Fields of Gold: A Love Story” Published and Available for Purchase

Jul4

My memoir about my parents – who were both orphaned at very young ages – and their life together, which included adopting my sisters and me, and then Mama’s journey to the end last August, Fields of Gold: A Love Story, has been published and is now available for purchase.

Watch the publication announcement video to put some faces with the posts I write here, including that of my beautiful Mama.

I wrote this memoir in about six weeks just after Mama died, first to preserve our family stories for my sisters and me and her grandchildren, but then it evolved into a full-length book that chronicled our lives from beginning to end – at least for my parents – and I hope will live on as a tribute to their legacy and a reminder to each of us of the legacy we are now responsible for carrying on and passing on to the next generations.