Archives

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.

Precious Story About the Circle of Life of Caregiving for Our Loved Ones With Dementias and Alzheimer’s Disease

Sep12

Momma and Me had a wonderful story today about bedtime kisses. And how the circle of life has the daughter kissing her mama goodnight, then comforting her with further kisses throughout the night to allay her fears, to calm her back to sleep, awakening at all hours to make sure her mama feels safe enough to go back to sleep. She draws the parallel between this and her own childhood when her mama did the same for her.

It’s a poignant post as I imagine the many nights Mama got up with us, especially as babies and small children, to make sure we were calm, unfearful, and safe enough to go back to sleep. And I did the same for her as her days came to an end.

I’ve always been a light and up-and-down sleeper. I suspect Mama spent more time trying to get me back to sleep in my early years (as I grew older, I just stayed in bed awake, only getting up if I heard her up with one of her migraines pacing the halls, and then – now – as an adult, just getting up and often doing the same pacing she did) than I spent in her later years doing the same with her.

I wasn’t afraid of anything. I simply have never had a good sleep rhythm or pattern and that continues to this day. But, as I became Mama’s sleep comfort over the years, I realize that was a blessing that I was able to give her when she needed it.

As Mama did with me when I was small, I was able to return a lot of kisses to Mama as our roles reversed. I never put her to bed or back to bed without a kiss, a hug, and an “I love you.” When the nights were filled with the symptoms of Lewy Body Disease, I’d lie beside her and with one arm around her, hold her hand with my other free hand. It never failed to help, even if it didn’t completely stop it.

It’s the little things that make the difference. With babies and small children. With loved ones suffering from dementia and Alzheimer’s Disease. They don’t cost anything but time and patience. This taught me about love in action. 

I’m thankful I had Mama and Daddy to model this for me as a child so it came naturally to me as an adult.

Remember the gifts your parents gave you, the sacrifices they made for you, the love they surrounded you with as they grow old and need the very same things from you. Life is a circle and those of us who are younger – well, everything in the universe in counting on us to complete it.

Medical Advocacy and Support and Dementias and Alzheimer’s Disease

Sep4

Author’s note: I originally posted this in June 2013, but I will now be reposting this every month, because it is one of the most important ways in which we can help and support our loved ones with dementias, Alzheimer’s Disease, and other age-related illnesses (“Going Gentle Into That Good Night: A Practical and Informative Guide For Fulfilling the Circle of Life For Our Loved Ones with Dementias and Alzheimer’s Disease” offers a more comprehensive list of the areas in which we can offer help and support to our loved ones).

*****

Today’s post will discuss our role as medical advocates and medical support for our loved ones suffering from dementias and Alzheimer’s disease. Here I will provide practical advice and suggestions, from my own experience, in managing the medical aspect as easy, as straightforward, and as  un-disruptive for our loved ones as possible.

The very first thing we need to do as caregivers is to make sure medical wishes and medical legal authority – medical power of attorney – are documented and authorized (primary care physicians can do this; I suggest getting them notarized as well). Hopefully, these have been discussed enough so that either our loved ones have already taken care of them or we know what they want and are able to execute them ourselves.

For anyone reading this who is not a caregiver or suffering from dementias and Alzheimer’s Disease, now is the time to think about these because time and chance happen to us all. For those of us who are caregivers, these are documents we need to locate and keep in one place.

A medical power of attorney document designates who will make decisions when the person drawing up the document is unable to.

Living willA living will essentially specifies whether a person wants everything done possible to keep them alive, no matter how long, how futile, and how expensive or whether only comfort care is given when it’s clear that the end of life is at hand.

DNR (Do Not Resuscitate)A DNR (Do Not Resuscitate) document states that the person does not want to be resuscitated if he or she stops breathing.

I suggest getting a briefcase or backpack to keep all the documents related to the medical care for our loved ones in. The briefcase or backpack should be accessible at all times, so it goes everywhere we and our loved ones go.

The medical power of attorney, living will, and DNR should be kept together in a folder in the briefcase or backpack. The other items in this backpack should include medical history documents and an up-to-date list of of medications (I’ve attached a sample Excel spreadsheet you can download and for this). Get an inexpensive wallet to put a photo id and Medicare Part A and Part B cards in and keep that in the briefcase or backpack as well. Always have something (electronic or pen and paper) to take notes with.

It is important to remember that we caretakers have a responsibility to advocate for our loved ones with dementias and Alzheimer’s Disease with all medical professionals (primary care physicians, psychiatrists, nurses, dentists, hospital staff, home health staff, and hospice staff). However, it is equally important to remember that, unless our loved ones are in the dying process and, therefore, unresponsive, that we need to include them in all conversations, explain to them what is being discussed and why, and make sure the medical personnel include them as well.

While our loved ones may not understand everything, we must not treat nor let anyone else treat them as if they are invisible. This is probably one of the greatest gifts of love and respect we can show them.

We have to usually initiate this by stopping the conversation the medical professional is having with us, turn to our loved ones and hold their hands, make eye contact, and explain. Eventually, the medical professional will make eye contact with both us and our loved ones.

The reality is that we don’t really know how much our loved ones comprehend or understand. It’s my personal belief that they understand more than the diseases allow them to respond to. I also know that touch and inclusion are two basic needs we all share as humans, so it’s essential that our loved ones never feel excluded or unloved.

Hospitalizations are hard on elderly people. I don’t know all the reasons why, so I wouldn’t begin to speculate (although I have some opinions about it) as to why. For our loved ones with dementias and Alzheimer’s Disease, hospitalizations are not just hard, but extremely traumatic because of unfamiliarity of everything: people, place, and routine. Going into a hospitalization, we as caregivers must be aware that it will be a setback for our loved ones when they come home.

hospitalizationBecause of the traumatic effect of hospitalizations on our loved ones, it is critical that we as caregivers stay with them as much as we’re able during the hospitalizations. We are, even if some of the time they don’t know who we are, familiar. And our presence can help neutralize some of the fear and anxiety that often occurs during hospitalizations. 

Always have a “hospital bag” with clothes, toiletries, and other things our loved ones need packed. That bag goes every time we take our loved ones to the ER or with us as we follow an EMS transport. (It is imperative to be sure to wash the clothes from the hospital stay immediately and separately from any other laundry when we get home.)

Spend the night for as long as our loved ones are hospitalized. I know, because I’ve spent way more nights than I could ever count with my mom – even before her dementias and Alzheimer’s Disease diagnoses because I didn’t want her to be all alone – in the hospital, that there’s iffy sleep, awful coffee, and not-so-great food. But our loved ones are worth it. 

But spending the night has an additional, and equally-important, benefit. Most doctors make rounds between 7 pm and 8 pm in the evening and between 6 am and 8 am in the morning, so by spending the night we’re always there when the doctors are there so we can be current on what’s going on with our loved ones. I’ve found that, in general, hospital nurses either don’t know much or are too busy to take the time to give you real updates, so the only in-depth information you’re going to get will be from the doctors.

The other benefit of staying with our loved ones is that we can make sure they get the quality care and attention they need. It’s been my experience that most hospitals simply to don’t have enough staff to provide much personalized care, so if there is no one there with the patient, the patient just has to wait until someone gets around to him or her. By us being there, we can ensure that our loved ones are clean, taken care of, and not uncomfortable in any way physically. That’s one of the best ways we can serve them.

As I mentioned, expect a setback after hospitalization. It can last anywhere from a few days to a couple of weeks. Recovery will eventually occur, but it’s important to know that it will never return to the pre-hospitalization state. That’s just the nature of these diseases.

It’s important to be patient, loving, kind, gentle, and tender no matter what. It’s my opinion that most of the behavior is a way of expressing fear, so it’s important that we allay those fears and help our loved ones feel safe again. It takes time and a lot of deep breaths sometimes, but this is another way we show them how much we love them.

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

Facebook Page for Going Gentle Into That Good Night and Caregiver’s Support Group

Aug13

I wanted to post a reminder that I’ve created this blog to give more extensive details on practical and “in-the-moment” information that we caregivers can use to ensure the best and most loving care of our loved ones suffering with Alzheimer’s Disease and dementias.

I am working on several posts that you’ll be able to read shortly, but I would like to encourage and invite everyone to like the Going Gentle Into That Good Night Facebook page and join the Facebook Caregivers – Alzheimer’s Disease, Dementia, and Other Age-Related Illnesses group where I am continually posting links and short comments about research and relevant blog posts that we can all use as we go through the caregiving journey.

If you have not yet read my book, Going Gentle Into That Good Night, please be sure to get your copy. It is an overview – and the genesis of this blog – of my own caregiving journey with my mom and I offer lessons I learned in the form of resources and advice you won’t find anywhere else in the Alzheimer’s Disease and dementia literature.

And, as always, if you find any of the information that I provide here or on Facebook useful and helpful, and are so inclined, a small donation (click on Donate on the left side of your screen) would be greatly appreciated. This mission to write, share, and provide helpful information, advice, and encouragement is, it seems, my life’s work now. It is a labor of love because I know firsthand what each of you is going through, but I still have to pay the bills. 

Thank you in advance for reading, for sharing, and for allowing me to share my journey with you.

Making Sure We Have the Personal Information We Need to Help Our Loved Ones with Alzheimer’s Disease and Dementia

Aug7

This post by Kay Bransford, on her Dealing With Dementia blog, is important enough that I want to share it here for all of us who are – or may be in the future – caregivers for loved ones with Alzheimer’s Disease and Dementias.

We live in a digital age and we work very hard to protect ourselves online from things like identity theft and access to our financial and personal data. However, it is important to make sure that we give access to our POA’s in case something happens to us and it is important that we have this information for our loved ones with Alzheimer’s Disease and dementia whom we are caring for and, if not already, will be entrusted to handle their legal, medical, and financial affairs for them.

So, Kay’s advice struck me today as being very timely for all of us.