PREPARING FOR THE BEST

Tiger lilies growing wild. (All photos by Marylin Warner)

Tiger lilies growing wild.
(All photos by Marylin Warner)

Taking a fresh air break with Mom.

Taking a fresh air break with Mom.

Dear Mom,

Remember how much time I used to spend getting ready for camp or packing for a family trip to visit Dad’s family in California? You paired off socks, matched outfits, and ID-ed everything with my initials. I packed and repacked books, games, art projects, camera and film, notebooks and pens, and packages of red licorice rope candy.

Now when I drive from Colorado to Kansas to visit you, it’s simpler. I make sure my Kindle and digital camera are charged, pack only the things I know I’ll need, and start driving. I have several favorite places along the way where I can pick up meals and tempting desserts that are much, much better than licorice ropes.

There are also other things I do to prepare before I arrive at your door. Maybe some of these will help other caregivers and frequent visitors of parents with Alzheimer’s or dementia, and maybe they’ll share ideas to add to my list.

Here are my five basic preparations for a successful visit:

Decide in advance that laughter will be the go-to response in tense situations.  Not laughter at the person, but at the situation. Things happen, messes need to be cleaned up–sometimes again and again–stress can be high. But if my response is to laugh and say, “Oh, this reminds me of when I was a kid. Remember the time when I…?” it’s surprising how the mood lifts and we enjoy each other’s company.

Chew gum.  I once read an article about hundreds of gum chewers and non-gum chewers who were studied for stress.  Those who chewed gum while doing repetitive jobs–without choking or dropping gum on the assembly line, of course–showed significantly less stress.  You no longer chew gum, Mom, but I do when I’m with you…sugarless bubble gum.  It’s harder to blow bubbles, but I remember once when I blew a huge bubble. You looked over, smiled and reached out. I leaned forward and you had great fun popping the bubble with your finger. In that moment you were involved and entertained, and we shared the added bonus of laughter.

Improve the environment.  We have several green plants growing by your front window, Mom, but nothing perks up the feeling of your living room like fresh flowers. You were once an avid vegetable gardener, but you also grew lilies, lilacs, roses, daisies and many varieties of flowering bushes. Now, whenever I bring a bouquet of garden flowers or a blooming plant from the grocery store, you brighten up and respond to the colors and scents. Once I brought a gingerbread mix that could be baked in the microwave, and you enjoyed the smell of warm gingerbread as much as the taste. Microwave popcorn’s popping sound and buttery scent make you smile every time.

Be prepared TO DO something.  Since I spend the night each time I visit you, we have extra time, so I arrive with several things we can do.  We paint your fingernails, sometimes alternating colors; I wrap up a pair of brightly patterned socks for you to enjoy twice… once when you unwrap the package, and then again when I put the socks on your feet; I bring several colorful postcards, and you can decide who will receive them and what you want me to write on each card.  The activities aren’t costly or complicated, just a fun diversion.

Walk…several times.  Caregivers who are able to take frequent walks do better and have less stress.  When I’m with you, Mom, I am your caregiver, so you and I take our walks together. You have a walker, but I’m glad we kept Dad’s old wheelchair. On nice days I take you outside to see the flowers or feed the ducks. On not-so-nice days we stay inside and make an adventure of rolling along the hallways, greeting people we see, stopping at the bookshelves loaded with books to borrow, or enjoying the framed pictures throughout the facility.  We keep moving for as long as we can, and that helps.

______________________________________________

Louis Pasteur wrote: “Chance favours the prepared mind.”

Shakespeare wrote: “All things are ready, if our minds be so.”

And the motto of the Boys Scouts of America is “BE PREPARED.”

In dealing with loved ones who have Alzheimer’s or dementia, we can do only the best we can do at any given moment. Some of my best plans fail miserably, while others succeed amazingly, but only for one visit.  If any of these suggestions help you, I’m glad. If you’ll share your ideas with me, I’d be ever so grateful.

ducks in pond IMG_2021

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56 Comments

Filed under Dementia/Alzheimer's, experiments, lessons about life, making a difference, memories for great-grandchildren

56 responses to “PREPARING FOR THE BEST

  1. juliabarrett

    Oh Marylin Marylin Marylin – feel out of control lately. Really needed this post. Yes, you’re right. I sort of hope for the best, prepare for the worst.

    • I can relate to that, Julia. Too often I expect the worst but sort of hope for the best. Then I saw a bumper sticker that said “Hope is not a strategy,” and a light went on. The more difficult and confusing my mother’s dementia becomes, the more important it is for me to have a strategy or two planned before I go to visit her.

  2. You’re blog is so fantastic. My grandmother has dementia and when I visit her I prepare with a smile on my face and laughter as the go-to response and always bring flowers to improve her environment. These tips of yours really help, thank you.

    • Thank you, Letizia, but it sounds like you were already using these basic ideas successfully with your grandmother. The flowers really do make a difference, don’t they? And I find they make a difference for me, too.

  3. Your preparation list is great both the practical ideas, of recharging the kindle and camera, and the psychological, especially to be prepared for laughter.
    Much appreciated for the reminder to remain in a positive frame of mind as much as we can.

    • It really does make a difference. It’s surprising that even though my mother sometimes is uncertain who I am–or even who she is–she still has the ability to sense when someone is glad to see her and has a few fun activities planned that we can do together.

  4. Thank you so much for this, Marylin! I’m printing this and will refer to it often, I’m sure. This is wonderful!

    • Thanks, Jill. You know, after I posted this blog, I remembered some of my mom’s responses, and that reminded me of other things that had worked, too. I think you might be surprised at all your memories that come flooding back.

  5. maybe looking through old photos. Sometimes the old memories are the ones that surface

    • You know, I used to do that, but in the last year her vision has become so weak that it just frustrates her. Now I have to use 5×7 or 8×10 framed pictures from around her apartment and hold them close so she can see. But when I find one she does respond to, we’ll spend a long time with it. I’ll tell her the stories I remember from that time period, and she’ll sometimes respond. Other times she’ll just listen and smile and say, “Do I know these people?” even though she’s in the picture.
      We do the best we can. It’s all good.

  6. I think be prepared for the unexpected is worth considering. I know that when my dear Dad was suffering with dementia we’d go for weeks without him really knowing who we were and then suddenly, he’d greet one of us by an old nickname and there would be a fleeting glimpse of the old Dad. I always found this unsettling because although we knew very well what the diagnosis was it was at times like this that we could believe that there had been a mistake. It’s as if we are each made up like a complete jigsaw and when this terrible illness strikes, the jigsaw gets thrown into the air, the pieces scattering randomly. Sometimes, but not very often, two or three pieces may fit together. Marylin, I wish you and your dear Mom well: you are doing all the right things.

    • Hi Marilyn, i’ve never experienced dementia personally (yet), but your post and the responses have given a really strong insight. Thank you.

    • Thank you, Jenny.
      What you described with your dad, I’ve also experienced with my mom, and on occasion with my dad’s Alzheimer’s. There were moments when I felt the “curtain fall” for just a moment. Dad’s eyes would light up when he looked at me and he’d smile and say, “Marylin?” And then the curtain went up. Occasionally my mother will turn and look at me–usually it’s at night when I’m checking on her–her eyes will widen, she’ll smile and maybe laugh, and she’ll say, “I know you! You’re my girl!” Those are rare, precious moments.
      You’re right, Jenny, it’s like pieces of a puzzle that don’t fit together.

  7. ‘ We do the best we can’ is a lovely attitude and practice. I suspect your mother does the same in her own way. Recently I read in our local newspaper about art appreciation talks at one of our libraries.The talks are specifically developed for dementia sufferers. It is based on a programme at the MOMA in New York. I thought it was a wonderful idea though perhaps not at this stage for your mother. http://www.stuff.co.nz/the-press/news/8739661/The-art-of-urging-those-with-dementia-to-think

  8. Wow, such great tips Marylin and right on….xo

    • Thank you. A friend once told me it’s like working with very young children who still have a limited vocabulary and a short attention span. You have to create a way for the two of you to communicate, and you have to be very patient and careful to try new activities that will get their attention. She was very right.

  9. Some very good advice given in such an intimate way.
    I have heard that music is one of the longest lasting memories.
    I wonder if taking a cd with favorite old songs or hymns or tunes, would give an enjoyable activity.
    When I have worked in facilities with patients with cognitive impairment it is amazing to hear some start to sing- along to an old hymn.

    • You’re very right, Rod. I just returned from a visit with Mom, and the music she focused on was the first song she taught to me as a child:
      “Jesus Loves Me.” We sang it again and again together. As I was packing to leave, I thought she was napping. Then I heard her say the words of the first line. She paused, opened one eye and looked at me and waited. I took up where she left off and started singing, and she closed her eye and smiled and listened. It was a very special time. She was still unclear about exactly who I was and where she was, but she held tight to the song and its message.

  10. zachandclem

    She looks happy. This coming from a psychiatric nurse who’s got a sixth sense when it comes to scanning a face and knowing what’s going on. Good luck, and what a great blog! – Clem

    • Thank you, Clem, I like to think she’s happy. The difference between my mother’s advanced dementia and my father’s Alzheimer’s is significant. For his entire 7 years, Dad held on to the rage stage, and in every moment of even partial clarity, he was furious, which was not a normal part of his disposition. My mother has maintained her calm, serene disposition, and fortunately, so far she’s not had any discomfort.

      • zachandclem

        That’s most definitely a very important thing for the family left to take care of her. Remember though; your dad’s fury had nothing to do with actual angry emotions, but with the dementia reaching his frontal lobe. All the inhibition and control centers were most likely damaged, and he would be angry without any means of keeping it down. It’s nobody’s fault, it’s the disease talking at that point. I’m very happy to read that your mom remains in a very serene state, because even for her that makes life easier. People tend to think “they don’t remember”, but some parts of them do, and even demented people can experience depression. Obviously your mother is going through happy and calm days, which is totally fantastic! Remember to smile a lot -they’re incredibly sensitive to subconscious cues like frowns or worrisome looks! It’s wonderful that you’re taking such good care of her, that’s a true testament to her parenting 🙂 Good luck!! xxx

      • Thanks for this reminder. You obviously are much more knowledgable about Alzheimer’s and how it affects the brain and the person’s reactions. With my dad, it was a long, hard-fought battle. I’m so glad that with my mother’s dementia the symptoms and reactions are very different.

      • zachandclem

        I can’t imagine going through that, let alone twice… I hope you somehow found a way to make peace with your father’s final years, they can be incredibly burdening for the family caregivers. Best of luck spending time with your wonderful mother, and pampering her 😉

  11. Pat McFarland

    Your words always calm my heart, Marylin.

  12. Great suggestions, Marylin. Thanks for sharing. I know you already look at photos together but I suppose that would be a good activity any time! Thanks again.

    • We do use pictures, Nancy, but they have to be large photos or she can’t see them well enough. 5×7 is about the smallest she can handle. But children’s picture books with the big color pictures really make her smile! I can never predict what will work, so I try a lot of different things.

  13. Marylin, your five tips are great. I really like the gum chewing. 🙂

  14. Excellent tips, Marilyn. If everyone treasured their family members as you do your Mom, we’d all be in a happier place.

    • Oh, Judy, except for the very long drive, I have an easy situation. It would be much more difficult to do–and to smile while spending time with my mother–if she acted angry and upset. I have a college friend whose mother pinches or hits her when she tries to help her. She knows her mother isn’t aware of what she’s doing, but it’s still very hard.

  15. Dear Marylin, Good to read your post. The photos of your mother are so beautiful. I remember the “last” photo of my mom, by a good caregiver. I could see her age and health needs, objectively, and she was smiling. Yet with me, she was my mother, in all her years. Blessings, Ellen

    • Thank you so much Ellen. We do count on the kindness of caregivers when we’re absent, and my mother is fortunate to have some wonderful helpers. During this visit I took a new picture of my mother holding the flowering plant I brought her. She has a sweet smile and has just touched the leaves, commenting how green they are. It’s moments like these that I want to remember.

  16. Reading your posts always helps me to put aside my silly cares for the day. Though I don’t share your exact experience, I am always helped by the way you handle your heartbreak and discouragement. And what a great help you are to this community that does share it with you. You are a blessing from God.

  17. Thank you, Darla, truly. But there are times when I have to chew a lot of gum to get through my visits, and it’s not the dementia as much as all the frustrations when a visitor or family member makes a snide comment under the guise of helping. Every family has its good moments and its not-so-good moments, and mine is no exception. Can you tell I just came from such a visit? Anyway, I am so grateful for your comments and support, Darla. I really am.

  18. dianabletter

    Hi Marylin, These are great suggestions for preparing for a visit. I find I do better if I also close my eyes and envision how the scene will go, imagining my responses and my smiles. And then, during the visit, it’s as if I already know my part, like an actress, and I just follow through. What we prepare for is often what we get.
    I also would add something you have taught me, to bring a book to read out loud to break things up. Thanks for sharing your experiences, strength and enormous hope!
    We are only responsible for our output, not the outcome!

  19. this was so heartening ..you value your mother so much ❤
    do pay my regards to her
    stay blessed you both

  20. Marylin, I can’t believe anything you do ‘fails miserably’. This is a great post and the rules can be so easily be applied to life in general, a little thought and preparation (like making a will at aged 8 and here’s …. oh never mind ) before we carry out any undertaking and we might all be a little better off in our lives. If I had thought that being a fat lazy git after the kids left home to start their own lives, could have contributed to my current situation, well who knows I might not have been so prone to becoming Mr Fat and or lazy …….

    Live and learn,eh! Well I’m hoping for that anyway xxxxxxx

    Oh btw. I copied this down to the Alzheimers Society office on the first floor of my building

    • Live and learn, absolutely! Oh, yes, I am such a great “will maker,” writing my first will at age 8. As I remember it, Tom, I wrote it in pencil and signed my name in green crayon. I tucked in my piggy bank along with my great accumulation of quarters, nickels, dimes, and lots of pennies. It was probably a bit compulsive on my part, but we do the best we can do, right? And I have to remind myself that those with Alzheimer’s and dementia are also doing the best they can, too. As you and I both know, Tom, life is just hard sometimes.

  21. Reblogged this on By the Mighty Mumford and commented:
    I’M GLAD SHE STILL HAS THE OPPORTUNITY…!!!!

  22. Great memories from the days when your Mom took care of you. Also, wonderful suggestions to other caregivers, family members who need to help their parents or siblings or… Best post I have read in awhile! I like your style and sensitivity plus smiles thrown in!

    • Thank you so much. I visited your blog and smiled at the “3 Dans”…and cried at the post about miscarriages. It’s always amazing to me when I read a new blog and connect immediately and deeply with the writer.

  23. Oh my. This post brought tears to my eyes. So beautifully written. My grandmother had Alzheimer’s and lived in another state. My mom visited her every day. Whenever I’d visit, I also had to make the best of it, since her personality changed from warm and boisterous to mean. Thanks for this beautiful portrait.

    • It’s very difficult to watch the damage Alzheimer’s and dementia can do to those we love. I’ve found that it’s helpful and encouraging to meet others who understand the trials we experience. Thanks for your comment, and please join us again.

  24. Your mother has a lovely face and I’m sure she enjoyed the fresh air outside.

    • Thanks, Mary. Even when it’s warm outside, she wants to be covered with an afghan and wear a scarf on her head. But she loves going outside and feeding the ducks and smelling the flowers.

  25. jalal michael sabbagh.http://gravatar.com/jmsabbagh86@gmail.com

    Remarkable post and very inspiring.l appreciate your time to share the post with us.Thank you Marylin for liking my post (chasing a Phantom) have blessed day .jalal Michael

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