Miss Her As Was, Love Her As Is

MrToad

Its been awhile since I was last here, and I offer apologies to the many Connected Companions who’ve offered support over the years. This posting is just a (fairly positive) musing.

My wife and I got through the pandemic safely enough. After 400 days of lockdown in her Memory Support Center, it took awhile to re-connect but we’ve done it, more or less. Kathleen has now forgotten how to walk, how to use a fork, and pretty much how to talk. But she hasn’t forgotten how to smile. I have now learned to be present when I am with her. Not just sitting in the room, but really trying to be mindful of being with her, rather than thinking about the meeting I just came from or the class I am teaching later on.  Ok, I know that like other persons with late stage dementia, Kathleen is pretty much living in an alternate world with far more fluid space and time, a world where she turns away from me and carries on a nonsense conversation with long deceased relatives on the other side of the room. So I can’t ever really be where she is, I can only be as present as possible and get the best connection I can.

As I sit with her, but more often when I am alone at home, I find myself thinking about better times past. What I wouldn’t give, for example, to have her back as she was about 4 years ago, before the Memory Center, when we could hop in the car and drive someplace in the countryside that neither of us have ever been to before (and she’d happily exclaim “Oh, there’s my Aunt Patty’s house where we used to spend every summer”, as she pointed out one farmstead after another).

And what I wouldn’t give to go back about 8 years when she needed some help with a few things, but clearly enjoyed plays, concerts, museums (even though she’d occasionally look at an artwork and say out loud, “What the f_ _ _ is that supposed to be?”)

And oh, what I wouldn’t give to go back about 16 years, when we would ride bikes for about 20-30 miles along a rail trail or a canal towpath, and she’d stop and carefully take a beautiful picture of a view that thousands of other people had blown right by. (Some of you might recall a few years ago I put together a calendar of the photos she took, and sent them free to anyone who asked. I just made a new one. Connect with me if you’d like one.)

Yes, those were the days—4 years, 8 years, 16 years ago. But that’s it—those days WERE. I  regret I did not savor some of those days more, celebrating the person I was sharing life with. Everyone, wherever they are, however they are, should savor what is good at every opportunity. Celebrate every moment you can be with your LO. For many persons on the journey, today is the best day of the rest of their lives.

Now more than ever, I try to celebrate every day.

I so miss Kathleen as she was. I so love her as is, and always will, no matter what.  

Mr Toad

Rick4407

Mr Toad it has indeed been a while since I saw a post from you.   A week or so ago I was reflecting on the members that were regulars that have now left.   You were one that immediately came to my mind.   I am glad to hear that have settled into the routine that awaits many of us.  Good luck, Rick

Ed1937

Hello Toad. It's good to see you're still active. I'm sorry Kathleen has lost so much more, but glad you can still find something positive to get you through the day.

Are you still teaching about dementia? If so, do you think the general population is becoming more educated on it? 

You've been missed around here. I still have the image of you in your 70s garb rolling around in my head.

DJnAZ

I miss her as she was. I so love her as she is, and always will, no matter what.

That says it all. Thank you!

Cherjer

Hi Mr Toad...i have been on this site for a few years but have not met you! What a beautiful reflection you have posted. Thank you for sharing!

I, too, think of the things my DH could do with me and then as you said...today is the best day. 

Your wife was so young to have to deal with AD. My husband was diagnosed in 2015 at age 71. But we had so many good years after that...now in 2022 I have "lost" my DH at age 79...however, some of the issues I had a few months ago have disappeared...outbursts etc. Everything changes but just am blessed to have him say to me..."I love you."  I know the next step will possibly MC but hope that will be a ways off. 

Just so enjoyed your post!

Joydean

Thank you Mr Toad, and I’m sorry your wife is progressing. 

“That’s it—those days were “. I have caught myself wishing and have to stop and stay in today, you have a lot of wisdom so thank you for sharing. 

Jo C.

Well; for heaven's sake, there you are!   No kidding, I had been thinking of you and Kathleen and wondering how you have been; it has indeed been a very long time.   Your dear love of  your life, I am so sorry for the ongoing losses this disease has wrought, but the one thing she has that never flags is her beloved Mr. T. who ever faithful ensures she is well cared for and who most of all, continues to see the person inside and who loves her not only as was but as is.   

I have reached a state in life where I miss so much the many loved ones who are now gone; I also miss the things I used to do with nary a blip - huge holiday gatherings at our house for every holiday year round with me happily cooking all from scratch and decorating for whatever holiday; the long travels my DH and I did, flying by the seat of our pants up and down highways and byways and over oceans; the wonderful, wonderful stuff we have experienced and achieved together, large and small; even many of my long ago simple childhood joys; etc.; including of course having our family with sweet small children and family growth and the satisfying challenges of my profession.

Echoes of the past, but the one really big thing I have been gifted with was to learn and be aware that I am actively filled with an abundance of gratitude for the wonderful, wonderful, beloved memories I have of so much. That gratitude is a gift unto itself and is really and truly a blessing beyond measure; my life has been  deeply rich.   While I have sustained many losses, and miss so many of my LOs and cannot do all of  the things I used to, I have escaped bemoaning and gnashing my teeth at what has gone by -  instead, I realize the absolute gift across life happens to be all of those treasured memories; isn't it just amazing and wonderful to have had those times, that love of so much - poignant in some ways, but I do remember daily to actively say, "thank you" and to do so out loud.  Gratitude.

You and your Kathleen have done so much and have had a rich life together; you do not discount her because of her losses, but continue to "see" her and your love has not been one of selfishness with personal bemoaning,, but has been a love that is given to her unconditionally and freely.  You really see her; truly a gift beyond measure.  You teach us a lot.

Are you, by the way, still teaching classes re dementia?  How are you doing yourself?  I so hope you have been well, (I recall a health blip or two).  Please do drop in and say hello to your old friends and new friends more often, you are thought of and it is always a delight to hear your voice.

J.

RobertsBrown

Mr. Toad!

Just what I needed.  Right on target.  Thank you.

storycrafter

Good to see you, Mr. Toad. I remember the pictures and posts. Thank you for posting. (I don't post much any more; am in a weird place for now and feeling subdued; just trying to cope with the challenges; appreciate everyone here.) Wishing you well....

MrToad

Hello old friends and new, and thanks for all your kind words and sentiments. Again, sorry for absence.

I am back to being allowed to spend a big chunk of almost every day with Kathleen. In nice weather I wheel her all around our retirement community campus. She enjoys the flower gardens, the ponds and their wildlife, and meeting neighbors. Although she does not respond verbally, I know that she approeciates it when I introduce her to my friends and include her in the conversation, stimulating my neighbors by example to talk with her, not just about her.  

When I am not with her, I serve as an Alz Assoc volunteer, teaching two or three classes a week on various dementia and caregiving topics. One of the few good things to come out of the pandemic was the use of Zoom and other platforms, so that sometimes I give a class to 7 people in a public library meeting room, and sometimes to 120 people in three or four states. I’m in Michigan, but wherever you are, your local chapter has some combination of in person and virtual classes that cover many aspects throughout the journey, from Know The Ten Warning Signs and Understanding Alzheimers through to Managing Money and  Living With Alzheimers Late Stage. I’ve taught them all, and they are all good, with reliable, useful information.

My non-profit, Dementia Friendly Saline (dfsaline.org) also keeps me busy, running workshops for businesses, churches and other organizations to show them how they can make it less difficult for persons dealing with dementia to interact with them. We have a growing list of shops, banks, agencies, churches around here displaying our We Are Dementia Friendly window cling.

We also run Memory Cafes—social/ educational/ entertainment events for all persons dealing with dementia, in themselves or a loved one. It’s an opportunity for people to come together with no concern about embarrassment—everyone at the Café is on the journey. We have a varied program with things like live music, chair yoga, food demonstrations and tasting, projects such as building floral arrangements, and storytelling. And we do it in hybrid form—some folks in the room, and others by zoom. We engage our Zooming friends by using a huge TV screen so that they can be well seen by folks in the room, and with four video cameras and as many microphones, we make sure that folks joining us from all over the country can see and hear and engage with what we are doing (e.g. when we craft something, we can send out kits of materials ahead of time to folks who will join by zoom). For more info, see the Dementia Friendly Saline website dfsaline.org.

As my Kathleen would have asked in Better Days “Is that all, toad?”

Not quite.  UK publisher Pen and Sword has published two of my books, both dedicated to the person who has inspired me to do all of the above, and with my proceeds going to the Alz Association.

Ed1937

Congrats on the books, and a big thank you for all of your teachings. You have done an excellent service for mankind. Thank you again.

David J

Thank you, Mr. Toad, for all you do! You’re an inspiration, and I agree whole heartedly with your sentiment of missing who she was but loving her as she is now.

Jo C.

All that plus your recipe for the best lasagna ever!   And then I lost the recipe.   Sigh.

Mr. Toad, (aka Jim who is not green and does not leap about croaking and scaring the bejeebers out of unsuspecting people, nor does he cause warts!)  I feel insulting to call someone I admire, a "toad," despite Kathleen starting it all and doing so with her loving, twinkling sense of humor toward her beloved husband.

All kidding aside, Mr. Jim; you have had and continue to have a life that is so very well lived.  The people who have benefitted from your care and your amazing talents and intellect are beyond counting.  Just think of that and the true difference you have made where the rubber actually hits the road so to speak for so many, many people.  Thank you are words that seem not sufficient, but Thank You.

And on top of it all, a well published author of two well received books (not at all about dementia) - and they are even in Barnes and Noble!  Will you never cease to surprise and astound?  Don't think so; your energy and intelligence seem to have their own reactor.

Saline, Michigan is a beautiful little town and the spirit of Saline warms my heart. I ask your permission, Jim, to send your Saline website to our City Manager and other departments in our small city.  The program could easily be put into place here too and our census has an aging population with dementia being a significant issue but no accommodation for needs.  Not out of not caring; simply a lack of awareness. So; if it is okay with you, I would like to send your link on to those in a position to be of assistance.

By the way, did you really grow a beard? 

One of your many Forum friends who are SO proud of you and all you do,

J.

MrToad

Jo C:

Yes, I grew a beard, but I made a rash decision to shave it off---it gave me a rash, so I had to get rid of it.

Yes, please feel free to put any interested city, business or organization in touch with Dementia Friendly Saline (dfsaline.org) through which you can also get my own contact info. I have been happy to talk to several other cities about how easy it is to become Dementia Friendly as a community---its more awareness, information and common sense tools rather than any extensive or expensive training or refitting of anything. We're talking about sharing with business people, govt folks, church leaders the simple things we caregivers know how to do--like KISSS: Keep It Short Simple & Slow. And show the person where the chicken soup is, don't tell them its "back there on aisle 179".  And don't overreact if they have trouble with the latest payment gizmo, or if they forget to pay. Simple but important stuff that can make life less stressful for a PWD and caregiver. 

Happy to help any way I can.

Jo C.

Thank you for your permission; I will be sending the information on.

J.

abc123

Dear Mr Toad!

I am delighted to see your post!!! Just two days ago I saw a gentleman who looked very much like your picture and I’ve been thinking of you and Kathleen ever since. 

KathyF1

Mr Toad, thank you for that post. I’m new here and struggling with the challenges of caring for my husband with mid stage Alz. After reading your wise advice, I’ll start trying to find the joy in the “now”.

MrToad

abc:

Well, in Better Days, Kathleen would tell you, "If you saw a gentleman, it sure wasn't Mr Toad."

Kathy:  The challenges all of us caregivers face are very real, very serious. So it is all the more important to look for the good, the sweet, the peace, whenever and wherever we can find it. We never celebrate the disease, but we celebrate the ever-persisting humanity of our loved ones even as they lose one or another particular ability. If someday the disease prevents your husband from clearly expressing himself, please know that the person he still is still loves and appreciates you. 

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MrToad

Victoria--

I think you have successfully channeled my wife. Made me chuckle. Thanks. I will give her an extra hug when I see her next. We can't prevent dementia damaging our LO's brains, but we can prevent it from damaging our relationships.

As Nat King Cole sang "The greatest thing you'll ever learn is just to love, and be loved in return"