Mr Toad and the Chocolate

MrToad

It’s been a long time since I posted here. I am in the 16th year of the journey with my wife, now in hospice at the Memory Care Center. Her words are long gone, she’s on soft food, and her light-up-the-room smile flashes on much less often. But the person I have loved for half a century is still…the person I still and always will love.

When I am not at her side, I am often speaking to various groups all over southeast Michigan as part of the awareness program of Dementia Friendly Saline. So, you’d think I would know better than to do what I did the other day:

I had given my wife a big box of assorted chocolates. I chose one for her and was helping her eat it. Just then, a Memory Center staffer walked by and I said, “Hey, DeeJay, got some nice chocolates here. Help yourself.”

“Oh, thanks” he said as he picked one out. As he was popping it into his mouth, my wife turned her head toward him and energized her laser gaze. “What do YOU think you’re doing taking MY chocolate?” she said silently, but very clearly.

DeeJay almost choked. I think I saw a laser burn mark on his forehead.

I realized I had just broken the cardinal rule that I spend so much time telling others about: Always be aware that the person with dementia is still and always will be a person. They are there until the last breath. They deserve the respect that every other person deserves. And I had just given away some of my wife’s chocolate.

So I got right in front of her, on my knees, looked her in the eye and abjectly apologized. Her eyes powered up a little, and thereby said to me, “Ok, but don’t let it happen again, toad.”

I miss her as she was; I love her as she is.

Mr. Toad

Rocky2

Thank you for the post. I brought a smile to my face. I appreciate the reminder to nurture and guard the relationship with our beloved PWD until the very end of life. Treasure those moments of connection with the person you "still and always will love".

Tom

ButterflyWings

MrToad! It is so good to hear from you again. You have done so much for so many on this forum through the years as well as your own city and state. I believe the model you have helped develop is even influencing the "Dementia-friendly" town policies in my area. Thank you for all your impact.

When I joined this forum several years ago, your voice was one of those that affirmed my compassion for both our PWD LOs, and for we caregivers who are stretched to the limit to help keep things afloat with few lifelines, little backup, and even less understanding from the rest of the world about how difficult it is to live (and die) with this disease.

Your commitment to your DW is unwavering and your generosity in sharing your lessons learned, is priceless. Bless you for "seeing her", still! You are still inspiring here, even without posting daily. Thank you for being one of the many folks here through the years, who have made it possible to survive each day, see new ways to think about our plight, and encourage me to keep uplifting my DH's humanity despite the ravages of Alzheimer's, as I am determined to do. Much love to you and your fiesty DW. (That's right, never re-gift your sweetheart's chocolates!!!😅)

MrToad

Butterflywings:

My wordless wife is constantly reminding me that she is still the person she has always been, although she has lost many abilities. My custom is to spend all afternoon with her at the memory center. But I was slated to do work on the dementia friendly movie program at our local theatre one afternoon, so I unilaterally decided to change the schedule. I went to the Memory Center in the morning. I walked into wife's room just as the staff were getting her dressed.

She visibly tensed up, and looked at me with all the affection she would give a slime mold. I was not there at the regular time and who did I think I was? What's the idea of trying to change things around? Her eyes spun me around and pushed me out the door.

My imagination? Nope. One of the staff who was there told me next day that my wife relaxed as soon as Ieft.

She is still entitled to have things the way she wants.

And thank you friend for your kind words about the dementia friendly community work I do. I will post some dementia friendly news shortly.

jsps139_

Thanks for sharing the chocolate story. It made me think.

I’m sure I will repeat “I miss him as he was; I love him as he is” to myself many times in my own journey.

Thanks for posting.

jfkoc

You have been missed and wondered about. Please keep in touch and keep sharing about your wonderful wife.

-Judith

MrToad

Judith and all other friends, I apologize for being out of touch. This is a great community. My wife is in hospice and that has taken rather a lot of my attention.

But even that has brought beauty and joy:

The first time the music therapist visited my wife, I expected the old standards I had overheard them play for others. Y'know, "You are my sunshine" and stuff.

But no, bless her, the musician had done her homework and launched right into "My Girl", then "Respect" and lots more Motown. My wife's eyes opened wide and locked right onto the person singing directly for her, and her smile widened with every note. Perhaps my sweetheart thought she had already made the final transition and was in her new home. That will happen in the not too distant, but not yet.

My wife entranced by the music therapist was most beautiful sight I have seen in a long time.

And it got better: the next week, the music therapist had a massage therapist with her. As one sang "Waterloo" and "Rocky Mountain High", the other gently massaged my wife's hands, and feet and shoulders. The look of peace on my wife's face. Oh my. By the time Leaving On A Jet Plane got played, I was weeping joyously.

jfkoc

In case you have not seen this;

Gladys Wilson and Naomi Feil (youtube.com)

Ed1937

Hello Toad! It's really good to hear from you again. It sounds as though even as long as you've been dealing with this, and as much as you've taught others, you are still learning about chocolates and the art of being on a time slot. 🙂

I know your time is always spoken for, and we appreciate it when you can find the time to stop by, even if it's just to say "Hello".

ghphotog

What deep devotion. When.my DW is enamored in music or watching cute babies on a pampers commercial her continence is so beautiful and I just look at her in awe I love her more than I ever have. I only wish she could understand that.

MrToad

ghphotog:

My bet is that if you show her and tell her that you love her more than ever, she will indeed understand that. Your just sending her the message of love, through your words, your actions, your body language, that is enough. It does not matter whether she can say any words in response. Be confident that she will continue to love you, even if she no longer remembers your name.

ThisLife

MrToad, I'm so glad you have support and caring individuals especially with hospice. I was so touched by the music selections by the music therapist. My husband is 73 in MC. A bit on the younger side, and I hear the same tired selections that were "Oldies" when I was a kid. I relate to the therapist's song selection. I also wish there was the faster paced music I rocked out to. Thinking about making a artist list for if/when I'm in a care facility.

MrToad

This LIfe:

oh I think it is so important for folks to write down/record or in some way let other know in advance what their preferences are, from The Temptations vs Sinatra to PIstachio vs Vanilla, to I love LUcy vs Big Bang theory.

I have even advocated to memory centers and senior residential communities that they put that word out to families of potential residents--potentially long before a person is ready to move in. Make an event out of it, I suggest, maybe make a video recording of an intergenerational interview---kids or grandkids interviewing the person about likes and dislikes across a wide spectrum, and perhaps getting some sweet stories from the past thrown in. That recording can become a family treasure, and a copy of it can later help the professional caregivers do a better, more sensitive job in caring for the person.

At a senior residential facility, perhaps a "Good Old Days" Recording studio could be set up (with science project trifold foamboard, nothing elaborate) so that folks can be stimulated to capture the senior's preferences while they still easily can.

Just a thought.

ImMaggieMae

MrToad, so good to see you here again. “I miss her as she was; I love her as she is.” It’s like a breath of fresh air to read your comments of finding the positive aspects in a devastating situation. My DH who is in stage 6/7 has a large record and cd collection so that helps with music selections. And now with Alexa we can hear just about any song the moment we think of it. “Can I have this dance for the rest of my life” will almost always get him up to dance with me even though he’s not always steady on his feet anymore. Marches sometimes help with getting him to pick up his feet when he walks. I’ve made playlists of calming music or favorite songs of his.

You mention a music therapist. Is this a person with hospice? It seems like there are a lot of differences between hospice organizations.

MrToad

I love your use of his favorite music. How sweet.

Yes, the particular hospice we are using has a professional music therapist (there are degrees in that!) and she comes about once a week, and the interaction is beautiful. But things like music therapy, massage therapy, pet therapy are non-mandatory features of various hospice programs (which are funded by Medicare). We are lucky in my community to have several "competing" hospice organizations, so they offer some extra services. I realize that other communities may not have the same abundance of services.