RSS Feed Print
On The Road Again
MrToad
Posted: Friday, October 6, 2017 10:51 PM
Joined: 7/13/2017
Posts: 444


Made a road trip from Michigan to North Carolina for my uncle’s funeral ( Sad as always, but he was happy and healthy for all of 98 years of a good and righteous life, and he died in his sleep after watching his favorite team win a playoff game. We should all be so lucky.) DW instantly agreed to come on the road trip with me, though she had barely known my Uncle Bud. Nonetheless, she decided that he had always been ever so nice to her even when she was a little kid, and she had many great memories of him. I never contradict her good memories, as she excitedly and happily tells me about wonderful things that she fondly recalls, which are, to her, quite real. (These days, much of what she tells me never happened in Our World, but that is irrelevant. If it makes her happy, it is as true as it needs to be.) So we drove through Ohio, DW occasionally telling me about (imagined) kindnesses my Uncle Bud did for her when she was a little kid. Because she was happy, so was I.

 We stopped at a hotel halfway there. As I checked in, I asked if we could get a ground floor room (DW no longer likes elevators). “No, sorry”, the clerk said. Ok. I then brought DW in from the car. By the time the clerk had watched me walk her in, shuffling her shaky way along, and got her seated in the lobby, miraculously, the clerk discovered that the handicapped suite was available, on the ground floor. More “kindness of strangers” (cf my earlier post).

The room was nice, except for the mirrors, which these days cause her to see an old lady she doesn’t care for. I carry a roll of white plastic Write-on/Cling-on sheets from Staples. They static-cling right onto smooth surfaces like mirrors, so in a few minutes I’d banished those “other people” from the room.  (These mylar-like sheets are easily re-usable, if I remember to take them when I leave.)

Next morning, she was seated at the desk in her PJs with some fruit I’d brought from the breakfast buffet in the lobby. I was in the bathroom when I heard a “Klong!”as in the sound of a hotel room door shutting.

“Sweetheart?”  No answer.  Oh shucks. Quickly buckling my pants, I dashed out into the room and then into the hallway to find her halfway across the lobby, looking for me. 

“Sweetheart, here I am. I’m so sorry you couldn’t find me. How about coming on back here, love.” 

Perhaps no one else noticed her. It doesn’t matter. She was just looking for me and I had not used the security device. Y’know, that prong-and-tuning fork thingie on the door that you thought was meant to keep people out of the room. When engaged as I should have used it, it also keeps sweet confused folk from accidentally wandering away.

Once all dressed, we proceeded to the complimentary breakfast buffet. DW was just so impressed with all the pastries and eggs and bacon et al. She couldn’t stop thanking the young lady who tended the buffet and kept all the trays full. Young lady understood DW right away (she told me aside that she’d had a Gran like her). They hugged more than once. DW couldn’t get away from the buffet without also taking a bag of pastries and juices for the road.  The kindness of strangers just keeps coming.

We’d arrived at the hotel, halfway to NC, in the dark. Thus we were in West By God Virginia.  Our  Michigan homeland is flat as is the Ohio we’d driven through. But as we got into the car in the AM to resume our trip, DW was a bit startled by the high steep mountains now surrounding us. As we drove on the narrow river road at the bottom of the steep valley, she was visibly agitated. She has seen mountains before, but this was a sudden and unexpected change of setting. So I quickly switched from NPR Morning Edition to my emergency backup —a CD of Motown hits. With the help of Aretha Franklin, Martha and the Vandellas and the Temptations, I changed her mood and we sang our way out of the Kanawha River Valley. Let’s hear it for a little R-E-S-P-E-C-T.

We got to NC. I’d reminded her several times that we were on the way to my Uncle Bud’s funeral. We went to the wake. To her great credit, she could see that I was upset and she comforted me. We went to the funeral mass next morning. To my pleasant surprise, she insisted on receiving Holy Communion, which she has not wanted to do for years. Then, as we left the church, I asked her if she was ok to go to the cemetery for the burial.

“Oh” she said, “did someone die?”

She did come along for the interment, and then back to the family house for a reception. Very informal, plenty of nice food, lots of new friends for DW (my cousins of various degrees, etc.) It was one of those times when she was enjoying  new people and new experiences (I just go along with the flow).

Later, we headed home, (suitably fortified with Motown Classics for West By God Virginia). I was pleased that I’d been able to say my goodbye to my uncle; I really appreciated that he’d prayed for my DW for years. DW seemed happy too, and that is always a major plus.

  “I had a nice time” she commented at one point during the drive, “but y’know, I didn’t get to talk to Uncle Bud much. He did serve great barbeque though.” 

I was confident that Uncle Bud was looking down and smiling.

 

 


chrisp1653
Posted: Saturday, October 7, 2017 12:09 AM
Joined: 1/23/2017
Posts: 1286


MrToad, It's always a pleasure to read whatever you have taken the time to write. I really wonder if you might have some duck somewhere in your DNA strand. That could explain how so many things seem to roll off your back. I seem to remember a Star Trek episode that might shed some light on that possibility.
Jo C.
Posted: Saturday, October 7, 2017 12:16 AM
Joined: 12/9/2011
Posts: 11602


Oh Mr. T.; you are a gentleman and a wise man.  I am sorry to hear of the loss of your dear uncle; my sympathy goes out to you.

What a journey.  I would take a trip with you any day if I could also have the Motown music played.   Thank you for telling us about the mirror cling on/write on sheets; what a great idea.  I will share that with my neighbor whose husband with dementia has just begun having arguments with the man in the mirror.   Especially problematic are the sliding closet doors in the master bedroom that are mirrored wall to wall, ceiling to floor.  If it comes in a roll at Staples, she should be able to work with it.

If you have a brand name and a little information about it, I could add the information on the other Forums for caregivers whose LOs are also having the mirror issue. 

So glad that your beloved DW had a good time and enjoyed the "memories" that she formed for herself; that in itself was a little gift for her and made her feel good.  So glad you just let her have at it.

J.


MrToad
Posted: Saturday, October 7, 2017 7:07 PM
Joined: 7/13/2017
Posts: 444


Jo C:

Here's what I found at Amazon:

 NATIONAL Brand Write On - Cling On Static Easel Pad, Plain Poly Sheets, 27 x 34", 35 Sheets (24391). Yes, it is a roll.

Staples at least also carries the same product.

This kind of stuff also comes in even larger sheets, maybe worth considering for larger, permanent installations.

What I didn't mention is that an additional feature is that one can use dry-erase markers to decorate, and re-decorate these sheets in any way one is inclined.

For myself, I only had this idea after I had used another approach: a huge floral poster/tapestry from ALLPOSTERS.com to cover DW's huge bathroom mirror. 

 

 

                                                                                                                        


annie789
Posted: Sunday, October 8, 2017 6:14 PM
Joined: 11/19/2015
Posts: 1004


Mr Toad,  what a wonderful inspiring story of love and kindness -- from  strangers but also from you to your Dear Wife.  Thank you so much!
Jo C.
Posted: Tuesday, October 10, 2017 8:36 AM
Joined: 12/9/2011
Posts: 11602


Thank you very much, Mr. T.    I have taken the liberty of sharing your information on the Caregiver and Spousal/Partner Forums as well as with my neighbor.  This is an issue experienced by many and your solution is truly an inspired one.  

Great information for a significant problem issue and I thank you for sharing it with us.   By the way; I really do enjoy reading your Posts.   You have so much to share and if you ever are so moved; it would also be great to hear from you on the Spousal/Partner Forum; I have a feeling many can benefit from what you share.

J.


jfkoc
Posted: Tuesday, October 10, 2017 9:16 AM
Joined: 12/4/2011
Posts: 19642


Oh, I agree. It would be wonderful if you would post your comments on S/P forum.
MrToad
Posted: Tuesday, October 10, 2017 10:48 PM
Joined: 7/13/2017
Posts: 444


Jo C., jfkoc:

So glad you find my thoughts and ideas of interest.

As y'all can tell I am new at this forum thingie (still not sure this whole Internet stuff will ever catch on). I will indeed pay more attention to the S/P forum. Thank you for the suggestion. Is there a way to cross-reference a post on one forum onto another?

......

Today DW reminded me that she will not leave me without a smile:

We were bantering back and forth as we have done for years.  I said, “If you think I am being too toady today,  perhaps you don’t want to be seen with me. Maybe I should take you to Home Depot and get you some “Toad-Be-Gone?”

I expected an automatic “Oh no, honey”

Instead I got a prompt  “How much does it cost?”

She was just kidding, I'm pretty sure.  

 


Jo C.
Posted: Wednesday, October 11, 2017 12:03 AM
Joined: 12/9/2011
Posts: 11602


Well; have to say, you are asking the wrong person about technical things; I am SO not technically adept and at times I am sure the only way to fix my computer's electronic hiccups is to sacrifice a goat or wear sack cloth and ashes while muttering incantations.   Still, nothing seems to help.

What I do when I want to copy a Post from one Forum to another, is to write my Post and then process it on the first Forum.   Once it  completely processed and in place, I then use my mouse to copy the entire post.  It will highlight in blue as you scroll across your message.  (You must have the Post processed and in place because it cannot be copied until that is complete.)

When I get to the next Forum, I place my cursor on the message are and click it there.  Then I go up to the tool bar at the very top of the blank message place.  Go to the third icon from the far left, it is a clipboard I think.

If you click on that, it will ask you, "allow access" or not to allow accesss.   Click on the "allow access," TWICE.  Voila!   Your message is then automatically printed on the new Forum message space.

That is how I do it, someone else may have a sleeker way of going about it.   I think you will enjoy the caregiving sharing on the Spousal/Partner Forum and the other fellows will be delighted to have you join in too; it is a great group of people who are caring for spouses and there is so much discussed and so much support.  You have much to offer, it will be a great fit.  As it is, quite a few Members Post on more than one Forum.

J.

J.


MPSunshine
Posted: Wednesday, October 11, 2017 4:53 AM
Joined: 5/21/2016
Posts: 2007


Hi, Mr. Toad, Another great little story-gem in a line of stories you have told. Thank you. Should you want to cut and paste and go to more than one thread, then it is as simple as going to your passage that you want to replicate, click on "edit," than click on command or control c (depends on whether you are using a mac or the other kind of computer). Then post your original post -- you don't want to delete it -- and go to where you want to post the copied material, then click command or control v to paste the material on the different forum. May I make the suggestion --- as I have done to some of the other posters -- that you collect some of your writing and publish it?
MrToad
Posted: Wednesday, October 11, 2017 10:42 AM
Joined: 7/13/2017
Posts: 444


How big a goat does it have to be?

 

Ok, thanks, will try all these suggestions.


Jim Broede
Posted: Wednesday, October 11, 2017 10:59 AM
Joined: 12/22/2011
Posts: 5462


A wonderful thread. Keep it going. Forever. --Jim
Jo C.
Posted: Thursday, October 12, 2017 1:48 PM
Joined: 12/9/2011
Posts: 11602


Mr. T; that is a very good question regarding goats.   Since my technical efforts were a wash, I too had been ruminating, mulling and pondering about the size or other required criteria for the goat necessary to bring positive results.

Then it struck me . . . . maybe I missed something; was it supposed to be an, "old goat?"   Gasp!   If that was true, where does one get an "old goat," I asked myself.  Suddenly, out of the corner of my eye, I glimpsed my white-haired husband lying back in his recliner munching malted milkballs while watching re-runs on TV  . . . hm-m-m . . . however, no luck there; I found him far too hard to catch.  How did he ever get out of that chair so quickly?  Have you ever tried to corral a large, rather full-figured fellow with a butterfly net who was earnestly fleeing and flailing about through the kitchen and laundry room?   Never thought he could move that fast . . . perhaps it was the cleaver in my other hand?    Haven't seen him for awhile; I think he may still be somewhere in the garage.  The kids are beginning to ask if I've seen him lately.

I shall have to think of something else since goats and incantations are not working.

Sigh,

J.

 


Jo C.
Posted: Thursday, October 12, 2017 2:03 PM
Joined: 12/9/2011
Posts: 11602


You're in Michigan?   What part?  I am a U.P. native having been raised there.  Though across country on the west coast, I still call the U.P. "home." 

J.


obrien4j
Posted: Thursday, October 12, 2017 2:52 PM
Joined: 11/18/2016
Posts: 451


Mr. Toad,

I want to direct my reply to you in 2 parts, if you don't mind. For one, it's been a few days since I read your post, days with several events guiding me to see life in yet another perspective. I believe, gentle signs from God, of things we have yet to learn. I also wanted to direct this in 2 parts- one for you and another for me. I didn't want to take the importance of your writing and squeeze it all in one post with all my stuff-your story deserves my utmost attention.

I don't think there's ever been a story that has touched my heart as much as yours. Your perspective as caregiver and adoringly loving husband, brings tears to my eyes. You can tell how much you love your wife. It takes my breath away how you care for her, foresee triggers that can upset her and then gently guide her down a more peaceful path. The love you have for her is so beautifully written and felt by a true gentleman. She is blessed to have you as I'm sure you feel you are blessed as well, to have her. May God give you many more happy years ahead. 


obrien4j
Posted: Thursday, October 12, 2017 3:47 PM
Joined: 11/18/2016
Posts: 451


Mr. Toad (Reply #2- my reply- it's all about me, reply)

Mr. Toad, I feel your delight when you speak about your wife being happy, because I have seen it for myself. Your genuine concern and love for your wife has no limit, all you want is for her to be happy. As soon as I read your story, I ran to show my wife. For the record, I have dementia, she does not. Just so I don't get you really, really confused, throughout my story, we are both women.  Ok, having said that, we can move on. I read my wife your post, choking thru the words, knowing very well, that she could totally relate. For she is you and your wife is me. Everything you said that you do for your wife in order for her anxiety to not escalate is something my wife would do for me. She would be making sure everything were perfect for me, researching and double checking. Now, that didn't always happen, she stumbled many a time, but I see life so differently now and can only be grateful for everything, big and small, that she's ever done for me. I have taken her for granted, I have been embarrassed of our relationship at times, of who I am, I feel so bad for that. Her love has been so genuine and kind, her world revolves totally around me. She adores me and I think I was so hung up with my own issues to truly appreciate and love her for who she is. This is someone who truly wants to be with me, fels blessed to be with me- eventhough i have dementia. She's not just being nice or because she "has to"- I am truly, truly blessed to have her.

But why are we even talking about this? That's where my mind leads me- I can do pretty well all day long, skipping thru life, planning all these activities. Today, I was like Florence Nightingale, delivering meds across the city to my wife and daughter. Yesterday, it was to the ungrateful son. I figure God is giving me this time and ability (still) to help my family when they're in need. It's a true blessing to be available and to be needed- and appreciated. He can be a jerk sometimes, but he does appreciate me. So that's one purpose- to help them while I they need me and I can-that's a blessing. The search however, is for another purpose- and why are we even talking about this? 

I am in the "why" stage- why is this happening to me, to us, at such a young age? What do i have, maybe 10 years. That gets me to 65- really? That's it?? Why? And yes- what did I do?? Today, that's not fair, it's not enough. I want more, I need more and dammit- I deserve more. I deserve to live a fulfilling life until at least, 90 years old- gosh, my wife's mother is probably 90 something by now and still going strong! I figure 90 is a good one- maybe I begin to lose my mind around 80- that'll still give me some 35 years of sanity! I begin to have these "aha" moments- a term I loathed with passion, used by the brown talking head running my school district. I realize that I am not on hiatus or a sabbatical. I am not volunteering at the local food back and going to exercise class like the other retirees because I can, but rather because I need to do this in order to stay sane longer. My motor continuously runs, as sane as possible, doing, helping, moving, planning, repeat. Or like a bracelet I just ordered says, "Wake up, kick ass, repeat" I think the more I do, the more active I am, the better I eat, etc., etc. etc. I can prolong this thing a little longer. I don't think relaxing more at home will do me any good right now. My mind is not a nice place to visit, I need to stay active as long as possible. 

And then i think of the next phase- that road that I try not to travel. It doesn't matter what mood I'm in, thinking about this always makes me cry. To think, Mr. Toad, that I will be your wife, in a number of years. Respectfully, in my lucid, demented mind, my heart breaks for you and I. This shouldn't be happening.And as much as I kick and I scream, it's not going to go away. And I'm mad, really mad I got it- I was the one who was going to outlive the other two, not follow in their damn path- I hate them for that. I now become the third- the statistic- not because of my own well-deserved suffering and decision to end my life or not- I'm just the "oh well, what did you expect?" Are you kidding me?? I have fought to be happy my entire life. I have made giant steps to find love, real, true love and I have it and I want it, forever. What is wrong with that? If anything, I want to live- really, really live like never before- but a life like I have now, that'll be ok. So I need it to stop, like now. This can't be as good as it's gonna get- today....

 I need to go off for a while and figure this out. I know how I'd like it to end, what I want and I think because of that, I'm frozen moving forward.  I don't know how to move ahead. I'm at a crossroads where I never thought I would be. My heart breaks when I think about the end, very difficult to express  on such an open forum. It is what it is....best of love and life and laughter to you and your loving wife, Mr. Toad-


MrToad
Posted: Thursday, October 12, 2017 9:28 PM
Joined: 7/13/2017
Posts: 444


Jo C:

How about goat cheese instead?

Yes, we  live in the southeast corner of Michigan, but as you may have noticed, I don’t have a Michigander accent. After living in half a dozen states across the country, I have finally lost my edgy, loud, fast-talking NYC accent. It wasn’t the 6 years in Alabama or the 28 in Virginia as much as the last 4 in my caregiver gig. I have learned to speak so softly, so slowly, so gently that I’d probably never be allowed back in my native Brooklyn (the one in NY). That’s OK, DW appreciates it when I sit on the floor and talk up to her and KISS (Keep It Short and Simple).

 

 


MrToad
Posted: Thursday, October 12, 2017 10:41 PM
Joined: 7/13/2017
Posts: 444


Obrien4j:

Thank you for your nice words. I am so glad you found them of value.

Oh my, I weep for you and I cheer for you, and your wife. I celebrate the beauty of your love for one another, and your spirit.

I understand that you get annoyed at your situation and you want to know why. Why? Brings to mind  the profound answer to a related question I got from Father James Joyce, S.J., my Theology professor at a Jesuit university: “It’s a mystery son, you can’t understand it”.  

Not immediately helpful in a sense, but my own nondenominational firm belief is that while there is no earthly rational answer as to why there are afflictions like this, we will get an answer, later. That “answer”, I imagine, would be no more comprehensible to us now than a lecture on quantum dynamics would be to a fruit fly. Nevertheless, I too find it hard to wait; I too am frustrated that I was my DW’s full time caregiver before either of us qualified for Medicare. The cross-country jaunts we’d contemplated, for example, are not happening, but we are going to try for a single overnite to the Lucille Ball Museum in western NY. She still loves Lucy.

 

 


obrien4j
Posted: Friday, October 13, 2017 8:25 AM
Joined: 11/18/2016
Posts: 451


I love Lucy, a true gem, never gets old for some of us.I took my wife to a vineyard one year on her birthday and stomped grapes just like Lucy and Ethel. A beautiful memory that no doubt, I will forget, but my wife will remember for the both of us.  That is a blessing.
MrToad
Posted: Friday, October 13, 2017 11:01 PM
Joined: 7/13/2017
Posts: 444


Lots of I Love Lucy episodes are available to stream for free on Amazon Prime.
Jo C.
Posted: Saturday, October 14, 2017 7:44 AM
Joined: 12/9/2011
Posts: 11602


Dear obrian4j, what I want to do is to work on that chocolate assembly line with Lucy and Ethel . . . . all the chocolate I can eat!   I always laugh at Lucy's wine stomping; in fact, one of the supporting actresses in the vat with Lucy was also very good; that episode never fails to bring laughter.  Can you imagine the interaction while filming that scene?  I sure would love to see outtakes; it must have been hilarious despite the hard work to get it done.

obrien4j, I have followed you on Young Onset as well as reading you here; my heart goes out to you and I so wish there was a way I could bring you ease. 

I am not much for empty words, but sometimes a quote will hit me just right for what is being experienced.  One of those:

"Take each day at a time, cling onto the faith of your own worth and build on it no matter how slowly or how little each step . . . at the end of each day, praise yourself for that and then let go . . . rest and hope."  Anne Perry

Then there is the more bombastic Leonard Cohen and some words from a song he wrote that really appeals to me;

"Ring the bells that still can ring; forget your perfect offering, there's a crack in everything, that's how the light gets in . . . ."

You have faced so much and have  come far on your journey through life; you have won many battles . . . you have been awesome in all you have overcome and you have the love of your life in your beloved wife; these are no small things.  I send you a soft hug and warm thoughts.

Mr. Toad.  Goat cheese?  Really?  I have to explain that my husband does not have dementia; I never would have joked to that degree if he did.   My MIL and GMIL both had dementia and I coordinated their care.  My mother had FTD at the same time her husband developed Alzheimer's Disease and I was the primary care person on that front.  It has been a long, long, very complex journey and I still feel reverberations from time to time.

I too had some Jesuit education experience.  I attended Grad School at the University of San Francisco.  Have to say one works extremely hard in that education order.  It was a real corker to say the least.   What we used to chuckle at was that USF's telephone contact numbers at that time began with, 666.  Oh my.   I think they have since changed.

Well; I hope you did not completely lose your NY Brooklyn boy accent; that is a wonderful, wonderful sound.  He must still be in there somewhere.   I am trying to visualize how you managed to combine that with the southern boy cadence and rhythms of Alabama along with those of a Virginia gentleman.  Boggles the mind; no wonder you speak softly.

Whenever I visit the U.P. of Michigan, something happens and I slip right back into those longer "o's" and that bit of Scandinavian sound.  It takes me a week or so to lose it after returning home.   Same sort of thing hits me when in Great Britian and I was especially astonished to find my speech changing in Scotland.  Then there was Italy . . . . my ears hear the music in languages and want to sing too.

So, Mr. T., what did you do prior to retirement?   I am an RN.  After time as supervisor on medical and surgical units, I became Administrator of Patient Case Management with multiple departments in acute medical centers as well as having my own consulting business.   We took early retirement, but I find myself missing the patients and doctors.  Caregiving requires a lot and that was the most challenging job of my life; love certainly counts in that arena.

Despite my education and professional experience, when dementia became part of our lives I flew by the seat of my pants like everyone else.  I look back and cringe at some things I wish I had done better; but there is a definite learning curve and there are no shortcuts to that.  Every person's journey is different, but there are similiarities for most of us..

Well, off I go, may this be one of those better days for everyone.

J.


MrToad
Posted: Saturday, October 14, 2017 4:13 PM
Joined: 7/13/2017
Posts: 444


 

Before I sold my consulting firm in order to take care of DW, I was an environmental scientist focused on doing objective, evidence-based research on things like invasive species, water pollution, techniques for removing carbon dioxide, and stuff like that, for Federal government agencies. Over 40 years I dealt with lot of bureaucrats, many overworked and underpaid, others unjustifiably arrogant and outrageously unqualified. I built up my company with a lot of very long weeks, and a commitment to getting things done exactly right, in a logical, legally defensible manner. Everything we did had to be technically  thoroughly explained, and to stay in business and thrive in a competitive industry, we had to work at all times with the utmost efficiency.

In other words, nothing in my 40 year career of being an uptight fussbudget workaholic prepared me for my second career as full time caregiver for DW. Then again, none of us asked for this gig, did we?