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About as good as life gets.
Jim Broede
Posted: Saturday, September 15, 2012 8:29 AM
Joined: 12/22/2011
Posts: 5462


Maybe it's my imagination. But I see people over-reacting. All over the world. To criticism. To snubs. Seems to me it's all so unnecessary. Personally, I've learned to take insults in stride. To not over-react. To get on with life. Without becoming angry. Oh, I get annoyed. But I stop short of over-reacting. Of becoming hostile. Or violent. Maybe it's that my skin has become as thick and solid as shining armor. I put it all in perspective. And I'm able to withdraw to my cocoon. Where I'm allowed to be in love. With my Italian true love. And with life, in general. I can do that. Even when I don't like everything going on in the world. But I recognize that I ain't god. That I have no control over many, many events. Therefore, I have to accept the world as it is. And try to make the best of it. Ain't always easy. But I believe in the impossible. That one can even walk on water. If one puts his mind to it. But better yet, one can fall in love. That's about as good as life gets. --Jim
Mercy Grace
Posted: Saturday, September 15, 2012 7:07 PM

Hello Jim,

 

How happy I am every time I discover a new post from you. This one is so timely...for the world...for myself.

 

Blessings,

MG


sweet Swede
Posted: Sunday, September 16, 2012 10:06 PM
Joined: 8/14/2012
Posts: 52


Well said, Jim

If only more people had your attitude, the world would be more peaceful. You even have a sense of romance. What a sweetheart you are.


bystander
Posted: Monday, September 17, 2012 12:41 AM
Joined: 9/16/2012
Posts: 3


Hi, I'm new.  I missed the beginning thread that gave the post "As good as it gets".

 

I'm reminded of the movie As Good As it Gets with Jack Nicholson, when he goes out the wrong door and sees all the other psych patients and asks "Is this a good as it gets?!"  I've been pondering that one for quite some time, and to date, have not found anything that tells me that it's going to get better, so I'm sad for my family.

 

I'm not much good with radical acceptance.  It is what it is.  Why?  Why is that typical response to bad things?  If you think about it, no one ever utters that phrase when something good happens in life, unless they are the ones who are on the receiving end of good and are just trying to shrug it off and not appear to be smug to someone who has been less fortunate.  Never.

 

That said, we are in crisis, divided over what the right thing to do is and all I can say is I hope this is as bad as it gets.  I don't know what is worse, over reacting or apathy and inertia.  I guess there is no greater evil of those three things and I guess it's a pretty common reaction, like child-proofing your home before you've even conceived and inconveniencing everyone before the great event by making it nearly impossible to open a cabinet or the toilet lid.  Or the I'm going to bury my head in the sand and it will go away, or I'm just so numb from the thought of all the doctors appointments, meds and all the things that are part and parcel of this awful theiving disease that I can't even deal.  Scarlett O'Hara, I'll think of it tomorrow.  Tomorrow's another day and it is here.  Right now.  You have to live in the now.  This is it.  "No, Miss Scarlett, I don't know nuthing bout parenting my parent!"

 

In case you couldn't tell, I'm in real need of some words of wisdom and the one thing that all of us are hoping for, the magic wand that makes it all better.  Or pixie dust or an Ovaltine decoder for all the medical gibberish, a band aid that doesn't hurt too much when you pull it off.  If I can't have those things, then I think I'd like to buy a valium for $250, Pat".  Ohh, I'm sorry, that's not in the word.  Better luck next spin.

 

I can't make my family see through her eyes.  I can't make them understand that while she looks like their mom, sounds like their mom, she's not any more.  That ship is sailing, one way ticket to God only knows where and all we can do is say bon voyage.  No streamers, no honking horns or confetti, just good bye.  They don't understand that SHE understands that she's going somewhere and is fighting to hold onto all her luggage (or baggage).  She KNOWS and she's just as scared as they are, more so.  She lost her husband of 50+ years, home of 40+ years, 2 daughters in her life time, so why can't she have her car, or live in her home or take care of her own medications?  You can explain until you are blue in the face but it does no good.  It is what it is.

 

So, I hope my brother-in-law never sees that picture she scribbled his face out and wrote DEVIL on, that the antipsychotic drugs begin to help with the anger, the delusions, the paranoia that has taken her hostage, along with the rest of us with her ugly voice mails and phone calls.

 

Sorry to be so maudlin, it's late and it's just been another day in paradise.  Can anyone offer some words of comfort besides, Lord, give me the strength...?

 

Blessings to all who have been here and done this.  If your advise is to pull up my big girl panties and deal, then I won't take offense.  I don't have a shining armor, just a hardened shell.  It may have a few cracks, so don't poke too hard.

 

 


Jim Broede
Posted: Monday, September 17, 2012 10:56 AM
Joined: 12/22/2011
Posts: 5462


Hi, Bystander. I'm old. Turned 77. On 9/11. I suspect you are young. Relatively speaking. Can't do much more than speak for myself. Nicest thing. I've been given time. Enough time to fall in love. Truly in love. Twice. Time to experience my dear wife's 13-year sojourn with Alzheimer's. Time to experience the gawdawfulness of care-giving. But time, too, to learn acceptance. And love. And time to end up as a darn good care-giver. Because I learned the benefits of respite. Of taking care of myself. Not a selfish act. Because I became a much better care-giver. Some how, I learned to fall in love with life, too. Despite myself. Found something to salvage. From each day. Even in the worst of times. Makes me believe in the impossible. I am what I am. A romantic idealist. A spiritual free-thinker. A political liberal. A lover. A dreamer. I design and create myself. Don't let others do it for me. I suspect we all have that ability. Have to set our mind and soul to it. And hope that the bottom doesn't fall out. But the key is to fall in love. With someone. With something. Preferably life. Overall, it ain't been bad. And, oh, so many, many moments to savor. Even during the bad times. It's because of Alzheimer's that I met my Italian true love. The bad things in life brought us together. I live half of the year in Italy. The other half in Minnesota. Believe me, it ain't a bad life. Especially if you give it time. --Jim
Sea Field
Posted: Monday, September 17, 2012 5:41 PM
Joined: 8/5/2012
Posts: 1872


Jim,

 

Maybe you are old and maybe you are not.  It could go either way at 77. But you sound like an old soul.  One who has learned to let life transform him, rather than defeat him.  Thanks for your thoughts.  They are very encouraging.  Especially to one who vascillates between exhaustion/despair and being agle to see the beauty and perfection of life - just as it is.


Jim Broede
Posted: Tuesday, September 18, 2012 11:39 AM
Joined: 12/22/2011
Posts: 5462


I don't wanna be defeated by life. No matter what happens, I wanna turn it into a victory. Sort of like the mythical Sisyphus. The guy required to push a huge boulder up a steep hill, only to see it topple back down again after nearly reaching the peak. So close. Yet so far. Sisyphus had to trek back down, fetch his boulder, and start all over again. But hey, I'm assuming Sisyphus was able to find enjoyment. Especially on the walk back down. Especially if it was a nice weather day. He had a break. Time for respite. Rejuvenation. He could forget about the rock for a while. And savor the moment. For that matter, even hard labor can be comforting. Keeps one in tip-top physical condition. --Jim
Sea Field
Posted: Tuesday, September 18, 2012 12:46 PM
Joined: 8/5/2012
Posts: 1872


Jim,

 

Love it!  Did Sisyphus ever get the rock all the way to the top?  Not that it matters, just curious. 

 

I always related to Persephone.  Dragged against her will into an experience she wanted nothing to do with - into the underworld - where she eventually learned to rule, as Queen.  But it looks like she too had respite, the times she would spend in the topworld with her mother Demeter.  The cycle of life perhaps.  Struggle, respite, struggle, respite.

 

Someone recently told me that I had graduated from Persephone and was now onto Innana.

 

Again, thanks for your perspective.  I truly enjoy your comments.  Cynthia   


Jim Broede
Posted: Wednesday, September 19, 2012 9:46 AM
Joined: 12/22/2011
Posts: 5462


Sisyphus must define his own goals, his own successes. And not allow others to do it for him. Sisyphus must learn to think of himself as a free man. Capable of falling in love. With life. Despite the obstacles. Only then does he outmaneuver the vengeful god/gods. His god/gods must be the true god/gods of love. --Jim
Mimi S.
Posted: Wednesday, September 19, 2012 3:05 PM
Joined: 11/29/2011
Posts: 7028


HI BYSTANDER,,

WELCOME TO OUR WORLD.

YOUR POST ESCAPED MT NOTICE UNTIL JUST NOW.

 ”

I can't make my family see through her eyes.  I can't make them understand that while she looks like their mom, sounds like their mom, she's not any more.  That ship is sailing, one way ticket to God only knows where and all we can do is say bon voyage.  No streamers, no honking horns or confetti, just good bye.  They don't understand that SHE understands that she's going somewhere and is fighting to hold onto all her luggage (or baggage).  She KNOWS and she's just as scared as they are, more so.  She lost her husband of 50+ years, home of 40+ years, 2 daughters in her life time, so why can't she have her car, or live in her home or take care of her own medications?  You can explain until you are blue in the face but it does no good.  It is what it is.

 

So, I hope my brother-in-law never sees that picture she scribbled his face out and wrote DEVIL on, that the antipsychotic drugs begin to help with the anger, the delusions, the paranoia that has taken her hostage, along with the rest of us with her ugly voice mails and phone calls.”

YOU WRITE BEAUTIFULLY. MAYBE YOU COULD JUST COPY THE FIRST PARAGRAPH ABOVE AND SEND IT TO ALL YOUR RELATIVES THAT DON’T GET IT. 

AND I LOVE THE PART WHERE YOUR MOM SCRATCHED OUT THE BAD BROTHER IN LAW. AND WE THINK THEY CAN NO LONGER THINK!

I THINK THAT GIVING HER AS MUCH PHYSICAL EXPRESSION OF LOVE AS YOU CAN, WILL HELP. 

I ALSO STRONGLY BELIEVE THAT APPLYING NAOMI FEIL’S VALIDATION METHOD WILL HELP. THE BOOK CAN USUALLY BE OBTAINED THROUGH YOUR LOCAL LIBRARY. IT TOOK ME SOME EFFORT TO READ IT, BUT IT WAS WORTH IT.

AN EASY READ IS: CREATING MOMENTS OF JOY BY JOLENE BRACKEY.

HOPEFULLY THE RELATIVES WILL EVENTUALLY COME TO YOUR WAY OF UNDERSTANDING. YOU ARE RIGHT ON.

WE HOPE TO SEE MORE OF YOU!


Jim Broede
Posted: Thursday, September 20, 2012 7:28 AM
Joined: 12/22/2011
Posts: 5462


I find that working on my attitude toward life is far more effective than working on other people's attitudes. I have the ability to make me reasonably happy. With a shift in attitude. So much easier to control me than others,..--Jim
Johanna C.
Posted: Thursday, September 20, 2012 10:15 AM
Joined: 12/9/2011
Posts: 11597


Dear Bystander:   A warm hello and welcome! 

 

If you have not already done so, I invite and strongly encourage you to go to the Caregiver's Forum and post there.

 

This is the Forum most well attended and where you will get much more input from others who are or have walked similar paths to yours who can offer understanding support and often, creative solutions to our most worrisome or frustrating situations. 

 

I am an RN whose mother had FrontoTemporal Dementia and whose step-dad received the diagnosis of Alzheimer's Disease.  The challenges, especially with my mother's dread behaviors were profound.  It was on the Caregiver's Forum that I received so much support and valuable input that helped me weather the storms.

 

I so hope to see you on Caregivers, but no matter what; I am glad you have found the Message Board.

 

If ever you find the need, there is a 24 Hour Helpline at (800) 272-3900; if your need is complex or particulary difficult, ask the volunteer answering the phone to put you in touch with a Care Consultant.  Consultants are highly educated Social Workers that specialize in dementia and family dynamics.  The Alzheimer's Assn. provides this service at no cost.

 

Best wishes,

 

Johanna C.


Jim Broede
Posted: Thursday, September 20, 2012 11:34 AM
Joined: 12/22/2011
Posts: 5462


You've made a wise choice in coming to musings, dear Bystander. You can obtain benefits by going elsewhere on the message boards, too. But you'll find musings an especially calming place. You'll like musings, I'm sure.. Make a comparison. And keep going to wherever you feel most comfortable. Maybe both places. Sometimes, quality is better than quantity. Depends.on your needs.  --Jim.
King Boo
Posted: Friday, September 21, 2012 9:14 AM
Joined: 1/9/2012
Posts: 3444


I 'm loving musings. . .it calmed my agitated soul this a.m.
bystander
Posted: Thursday, September 27, 2012 5:17 PM
Joined: 9/16/2012
Posts: 3


Jim, you're right - I'm relatively young, 47 09/20.  In my 20's I thought that 47 was ancient, one foot in the grave and another on a banana peel.  I've come to realize that any day above ground is a good day.

 

You wrote about your 13 year sorjourn with your wife without rancor or bitterness at what you had been deprived of by way of your spouse and for the loss of the 13 years in watching and caring for her.  Time you can never get back for yourself.  I love that.

 

I can tell from your writings that you are probably the last of the true romantics.  I think I gave up romance the day I put my last Danielle Steele novel.  I was not the damsel in distress, beautiful, down on her luck, finding wonderful rich man and sailing into the sunset on a yacht happily ever after to live in bliss, peace and prosperity.  It ain't gonna happen to me.  I then switched to the grittier Rosemary Rogers who had a more or less realistic view of life.  Even that lost it's appeal.  I think I now live more in the Valley of the Dolls, hence the lame joke at Wheel of Fortune and the play on the word vowel - valium.  I once cracked that joke in group therapy for my own issues and while some laughed, the leader of that particular session aparently lived under a rock and had no idea of the play on words.  She told all of us that if there was any hint of buying, selling or trading of meds that she would dismiss us from group.  My guess is she went into the office where the other therapists were and told them of my quip and how she thought I was drug seeking when they explained the pun.

 

Anyway, I digress.  My mother-in-law is in what they call "Serenity Care" for probably another 5 days at which time the assisted living facility will make a determination after consulting with the medical staff there if she can go back to just assisted living or needs to go to the Alzheimer's unit.  Either way I'm prepared.  I found a bed spread that has an angel on it, very pretty blue background, but I thought the symbolic gesture of angels watching over you while you sleep would be a comfort, if such thoughts or connections are still within her grasp.  Anyway, makes me feel better to give her something that is pretty even if she doesn't make the connection.  At Christmas I found a a cuff bracelet and on the front was engraved The Prayer of Serenity on it and I added the engraving on the back for her to not forget we love her and added our names. 

 

Seems like nothing compared to what I should be doing, but I can't beat myself up for the offered help and the thanks but no thanks from my husband and his 2 brothers.  I understand their rationale, but still think that the notion should not be dismissed out of hand.  If 1 year out of assistesd living or Alzheimer's care could stretch her rather sizable nest egg even further, why not?

 

We have enough room to accomodate  her until she is really ready to go to an Alzheimer's unit.  Their reasons for nay saying are primarily my health, my husbands and how it will impact my 18 year old.  I guess they've never heard of adult day care or respite care for caregivers, so if I have a day when I'm a mass of blubbering humanity, I can take her to day care.  When my husband (who is very much like her) needs a break, we send her to respite care which has a very spa-like setting.  But no, I need to think of my health concerns before hers.

 

My husband doesn't understand why I would do that.  I told him that it's like trickle-down economics - she came from him, therefore my love for him trickles down to her and other members of his family (there are a few exceptions!).  If the shoe were on the other foot, I hope that he would at least make the token offer to do the same.

 

Situations like these tend to tell the tale of love between married people, I think.  When you say the words "for richer or poorer, in sickness and health, in good times and bad" you should mean them.  It's not for "richer, in health and good times".  You can't choose and pick, it's all or none.  This is a bad time for him.  I accept it, help with what I can and provide the ear for the anger and a shoulder for the tears he seldom sheds.  Why shouldn't I offer our home and provide her some care, company and comfort?  Today it's my mother-in-law, tomorrow it might be my parents, or even God forbid, him.

 

It seems to me as a society that we have gotten away from the multi-generational home values.  You take care of your elderly.  No thoughts or qualms about it, you just do it because it's the right thing to do.  Memory care has come a long way, but it's still just shy of a warehouse for the dying.  Since we  will no longer have to stop in to drop off meds or drop off the occasional groceries, how often will we get there to see her?  Out of sight out of mind.

 

Anyway, today's just a day for reflection.  I'm taking a page from the suicide awareness from the troops.  We may not be in the trenches, but we are very much in a war for more time, more smiles of recognition, more peaceful existence or co-existence from those slipping away from us and more importantly, better medications to stave off the inevitable, less restriction on research with stem cells.  Why you may ask.  How many of you have heard from your loved one "If you put me in there I'll just find a way to kill myself!" or "If you put me there you might as well just go ahead and plant me". 

 

I'm sorry to say that my husband thinks that would be God's greatest kindness.  He keeps remarking that she's terminal.  I remind him that we all are.  Each day we live is one less we have and that carpe diem should be everyone's motto.  He's a workaholic and I keep telling him that no person ever died wishing he'd spent more time at the office...life does not wait and we should not take for granted that we will have the time to do all things we've put off until tomorrow.  There are only so many days and fewer tomorrows but I'll never convince him of that.

 

Well, I only meant to add to the "musings" section, not write War and Peace again.  If I type this much, can you imagine how verbose I could be?!  I also had an email to accept a Mercy Grace as a friend.  Accepted, but can't figure out how to make contact.  Miss Grace, if you're still out there and you want an eail pal, I'd love it.

 

Laurie


bystander
Posted: Thursday, September 27, 2012 5:45 PM
Joined: 9/16/2012
Posts: 3


Thank you for admiring my prose.  I can get on a soap box every once in awhile.

 

Sadly, I've written and spoken those words to them.  They are of German-French descent, so I'm not sure if they know if they should invade or surrender.  Honestly, I think they've surrendered.  I'm of German-English-Chac Taw lineage.  I'm stubborn, pragmatic and I always ask "How".  Sometimes my emails or conversations are peppered with bad words to punctuate my feelings about things.  What can I say?  I'm married to a sailor and daughter of former Army and a truck driver?  So it's nature v nurture.  How did I get a potty mouth?  Doesn't matter.

 

So far, my reading as been from John Hopkins, while the information is good and technical, it's a better sleep aid than anything I've ever tried.  I'll have to do a little more searching for more inspirational or insightful things since my last 2 posts have made me seem like a Debbie Downer or Negative Nellie.

 

I'll also be checking into some other forums to see if I can get more useful information and less Greek tragedy, although I should check back in a few days to see if there is mention of Antigone or Medea.

 

Blessings,

Laurie


Mercy Grace
Posted: Friday, September 28, 2012 7:42 PM

Hello to bystander (Laurie)...

 

Unfortunately, although you were able to accept my invitation, the ability to email each other is not working at the moment. Please rest assured, the issue is being worked on by the techies, and I will make contact with you as soon as it is fixed.

In the meantime, I love your posts and am in awe of your gift for writing. Many blessings to you as you travel a difficult road.

 

Love and Hugs,

MG


RuthieMV
Posted: Thursday, October 4, 2012 12:45 AM
Joined: 10/3/2012
Posts: 5


Dear Bystander:

 

I wish I could find my big girl panties! 

 

I honestly think I lost them somewhere between when my Mom took the two beta fish in the one fish tank and one ate the other, and then she dumped the half a box of fish food into the small jar, or could have been when she yelled at the DMV man in California that asked how she liked her move from Florida to California that she would NEVER live to an awful state like California (when he was issuing her Senior ID card in California), or perhaps during the 100 degree humidity when I was shoveling the 17 truckloads out of her 2 bedroom house replete with thousands of magazines and old newspapers with roaches and mice crawling out of them while she screamed that she was saving them to give to the migrant workers, or hey, wha about right after she had 13 teeth removed that had rotted into her mouth and 20 minutes later asked me why her mouth hurt?  ...Yep, I think it was right after that and just BEFORE we charged $10,000 of dental work, money to move her across the country, and are trying to charge her assisted living to our charge cards and when she started telling everyone we were stealing all of her millions (her VA and Social Security can't even pay her rent) and telling Social Security we shouldn't be handling her income....

 

Of course, it could have been when my 85 year old mother that used to laugh so hard and smile so much, give lots of hugs and be so touchy feely and be full of life, who refuses any meds, now never looks me, her baby (of 4), in the eye, and never smiles and doesn't even look up when I come to see her.  She tells me she's busy playing something with someone else (and she can't even remember the game after her turn each time...) 

 

Yep..That's probably where I lost them, I think - or when she tries to wash out her disposable diapers and they fall apart and she puts them on anyway.... 

 

Then again, could have been the hatred in her voice anytime I'm around, but the kindness she has for everyone else after we were so close for so many years! 

 

Stuff dreams were made of! 

 

Anyway, I loved your writing and laughed so hard.  I needed that.  After the V.A. care and attendance just gave us a WHOPPING $600 a month for full time care!  Whoo hooo!  That'll sure pay for a Southern Calfiornia Memory Care center...Oh yeah....That and about another $4,000 per month!  For my Dad's 20 years and life and my Mom's service, that's a slap in her face.

 

I'm new at this game, and without the grace of Jesus, I'd be pulling the trigger for ME NOW - before it happens with all we see...and taking my Mom with me! 

 

But hey, like Jim, I have learned to love all the sweet (and mean) ladies and men at the center and all the amazing staff who love them so much - and don't get paid NEARLY ENOUGH...  That's love happening through it all...  God is good - even when life is hard and love is amazing.  Hang in there everyone, this is my first post and my first night where I'm exhausted and trying to sleep before I get up, go to work, and do it all over again!

 

Blessings!  From RB in California

 ..  


RuthieMV
Posted: Thursday, October 4, 2012 12:48 AM
Joined: 10/3/2012
Posts: 5


What does the PEER thing mean?

 


Debee
Posted: Tuesday, October 9, 2012 11:06 PM
Joined: 10/8/2012
Posts: 1


I have been a  caregiver to both my parents which was difficult, but they both had their minds. Now I am taking care of my Aunt with dementia and this is a whole new world to me. I hope through alz connected I will get a insight to what to expect before it happens or beware of what may happen. I know I can't fix it, or stop it but at least I maybe able to make it a little easier for her and myself. I have notice other people in stores and other public place who have dementia or alz since I have taken my Aunt home. Which before I looked at other people and wondered what was wrong with them, now I feel I know. Now I just need to learn how to deal without feeling trapped, or tired from explaining or telling white lies, to keep her from being so angry.

My current problem is that we took her two dogs, home with us and had one put down because of cancer, I have a small dog so we still have two dogs. She get very upset if Ce Ce her dog wants my attention, reason is I feed her, take her out. etc. Ce Ce sleeps with her still but I think she maybe hitting her at night. I don't want to take the dog away She has lost so much in the last six months, her boyfriend of 20 years, her dog, her home and many friends since she lived on the West coast. Yet if she is hitting the dog. I don't want the dog to suffer because of it. What are your thoughts any ideas.