For Better Or For Worse

The old anniversary odometer just clicked off another whole number, we made it!  Today Peg and I celebrate our twelfth wedding anniversary. I can’t say the ride has been smooth because we have had our differences, but we learned to deal with them, and always made up. My God father once gave me this advice: never go to bed angry at each other , always kiss and tell each other “I  you love.”  God father’s advice works because Peg and I have made that ritual a standard practice. In twelve years I can say that we missed it once. I should say I missed it once because she was already asleep when I got home from a late meeting. Even though she slept, I followed through but she was so fast asleep she didn’t know I did.

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The first nine years I have to admit we enjoyed the “for better” aspect of our marriage vows We partied, we traveled, we went to the theater, we enjoyed the country club dinners with friends, all the things healthy people in love do. In the ninth year there was a dramatic slowdown in the better and an increase in the “for worse.” There were signs of memory deterioration. Peg suddenly needed help operating a washing machine. At first, I thought she was playing me, but she couldn’t remember which knobs to turn and buttons to push. When we traveled she always insisted I wait for her right outside the ladies room, she was afraid of getting lost. When in a restaurant she told me to order for her because she couldn’t see the items on the menu. This was a lady whose practice it was to read the entire menu, even the fine print, so she could decide upon a meal. During the last two years it has been mostly “for worse”  with an occasional better.

Joe & Peggy Wedding Party-November 5, 2005

Peggy’s Family

Before we agreed to marry, we discussed the inevitability of one of us dying or getting sick and how we expected the other to act. We agreed that even if we only had one year together it was worth the try at happiness. Both of us had long marriages before, and we both lost our spouses to a disease. Her husband died of heart related issues in combination with lung cancer at age sixty-nine. My wife beat breast cancer only to die at age sixty-five from issues related to a debilitating heart attack at age sixty-three.

Between the two of us we had ninety-one years of marriage under our belts, how hard could a second marriage be? It should be a snap, after all we have seen almost everything couples experience during our first marriages. How wrong I was. It was hard, but not so hard that we weren’t able to figure things out and smooth the conflicts over.

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Right now, Peg is in some state of deterioration resulting from Alzheimer’s disease. I tell people she is relatively stable but declining very slowly.  This is why we are in the “for worse” period of our vows. Her communication skill is gone. Imagine a typical woman not being able to talk, she must be in hell. Imagine a woman who was a fashionista suddenly not giving a crap about clothes, make-up, or hair. Imagine a woman who was so fastidiously clean that she changed every piece of clothing every day because it was dirty from having worn it once, not wanting to bathe. Imagine a lady who could out walk me on a shopping trip not being able to walk again because she can’t remember how. I could go on and on, but I think you get the drift. Our lives have changed from that of newly weds to that of care-taker and patient. Luckily we had discussed these possibilities early on and put things in writing to be very clear about how we would treat each other.

It has been a good run but it is not over yet. It may last another day, or another ten years but it won’t matter because we still love each other now, and will continue to love each other to the very end which is the “till death do us part” of our vows. I write that like I expect to outlive her, but the fact is I can drop dead before her. In that case her life gets a little bit more complicated, but again, we have left instructions for our children on how to deal with that situation.

Happy anniversary my darling!

PSA-170205-Philosophy 101

Philosophy 101

As we grow older, and hence wiser, we slowly realize that:

Whether we wear a $300 or $30 watch – – – they both tell the same time.

Whether we carry a $300 or $30 wallet/handbag – – – the amount of money inside is the same.

Whether we drink a bottle of $300 or $30 or $3 wine – – – the hangover is the same.

Whether the house we live in is 300 or 3,000 or 30,000 sq. ft. – – – the loneliness is the same.

And we realize our true inner happiness does not come from the material things of this world.

Whether we fly first or economy class, if the plane goes down – – – we go down with it.

Whether we fly first or economy class, if the plane reaches its destination – – – everyone arrives at the same time.

We should realize that when we have mates, buddies and old friends, brothers and sisters, with whom we can chat, laugh, talk, sing, talk about north- south-east-west or heaven
and earth — that is true happiness.

Six Undeniable Facts of Life

1. Don’t educate your children to be rich. Educate them to be happy, so when they grow up they will know the value of things, not the price.

2. Best wise words: “Eat your food as your medicines. Otherwise you have to eat medicines as your food.”

3. The one who loves you will never leave you because, even if there are 100 reasons to give up, he or she will find one reason to hold on.

4. There is a big difference between a human being and being human. Only a few folks really understand that.

5. You are loved when you are born. You will be loved when you die. In between, you have to manage.

6. If you just want to walk fast, walk alone; but, if you want to walk far, walk together.

Six Best Doctors in the World

1. Sunlight
2. Rest
3. Exercise
4. Diet
5. Self Confidence
6. Friends

And, finally: The nicest place to be is in someone’s thoughts, the safest place to be is in someone’s prayers, and the very best place to be is….in the hands of God.

God’s Gift

Early this past week my thoughts and emotions were morose. Peg moved to another low. She began sleeping twenty hours each day. She was not responsive, nor in a mood to eat or drink. Then, on Thursday morning she awoke before me and I received a good morning smile. She even spoke a few words. Her mood remained happy throughout the day. She even had a few moments of laughter. I was overjoyed. At three-thirty, her caretaker and I lifted her from bed and placed her into a wheelchair. As usual, I wheeled her around the house and showed her what a beautiful day it was. The sun shone brightly, it was warm, and there were billowy white clouds rising to heaven in an azure sky. The views of the 2016 Monet Vision-Patriots Dream held her attention as she gazed at the pond in what seemed like a stupor.

Finally, I parked her chair at the table and we had supper together. By seven-thirty she crashed while watching TV, and we promptly put her back to bed.

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Friday morning was the same and we enjoyed another glorious day. I played an Elvis album of gospel music while we held hands, and napped.

Today promises to be a similar day, however, her smile is missing and a frown on her face signals a bit of unhappiness, perhaps it is pain. I can’t tell for sure, and she can’t tell me, nor would she if she could. Before she began this journey, and I suspected she was in pain and commented she responded with “it is nothing I can’t take.”

I’ll take these good days and I thank God for them. I know there are dark days still ahead and there will be plenty of them to brood over, but now I bask in the sunshine of her smile.

 

Not Recommended Unless . . .

My system for picking movies at the library is much the same as picking books. Go in look at the DVD cover art, and titles and pick something that looks interesting based on the actors. This time Julie Christie , and Olympia Dukakis attracted me to pick up a film titled Away From Her. I promised Peg that this was a chick flick and that we would watch it together. I had the disc in the player and was fumbling with a remote to change from cable to the DVD when a town hall meeting with Donald Trump and Sean Hannity appeared. Peg fixated on Trump and that is what we watched.

After we put her to bed I watched the movie alone. I am so glad we didn’t see it together. I hated it. By far the most depressing film I have ever seen. Even the music was depressing. I should have known better because the film is about a husband and wife facing Alzheimer’s.  At age seventy-six Ms Christie is still a very attractive woman. Of course that is coming from a man who is older. Most guys my age view any  woman who is younger as ‘HOT,’ but she is still quite hot.Julie-Christie-011.jpg

Maybe the story depressed me because it is about the life Peg and I are living, and it was a look into the future. Although, Peg is much further along in the progression than the character Fiona was in this film. Some of the Alzheimer’s traits depicted Peg has never experienced yet. One scene in which Fiona wanders off and gets lost is not one of  Peg’s traits. Peg has never wandered, and is now so progressed that she is unable to walk by herself much less wander. Fiona had issues with her husband, and she seemed to use her disease against him, like quickly attaching herself to a man in the nursing home, and ignoring her faithful husband who visited  daily. I like to think it was her disease working against him and not her deviousness.

The film has a surprise ending which caught me off guard when one day Fiona has a brief instance of total recall when her husband visits, and they hug again as would a man and wife married for forty-two years. I’m still waiting  for that moment, but I cherish the times when I get a smile or a few words.

I recommend this film for anyone who wants to get a short glimpse of life with a dying brain. If you are already experiencing someone with the disease it will only make you more depressed.

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Dealing With Immigrants

Yesterday, Peg and I experienced the joy of being dumped by our caretaker. Dolly is a good woman, but has no patience whatsoever. Caring for a person in late stage dementia requires unlimited brain power, creativity, psychology, and kindness. Dolly had good brain power, but not what it takes to deal with an Alzheimer’s client. Dolly showed signs of kindness, but lacked compassion. To Dolly the job of caring for Peg was a process. She knew the steps, but failed in her ability to deal with a person who decides she wants no part of her process. I’m reading a book titled Learning to Speak Alzheimer’s by Joanne Koenig Coste. When I reached the chapter on dealing with personal hygiene and toileting Dolly failed miserably. Costa reports that this is a universal difficulty for all Alzheimer’s people. These two functions cause the patient to become combative, angry, and hateful. In Peg’s case, I witnessed her coming apart on Dolly with aggressive shoving, wild swinging, and foul language delivered in a vicious tone I never heard come from her before.  For the past week I have been seriously deliberating firing Dolly in favor of someone who might be more compassionate and who knows how to redirect Peg when she digs in her heels.

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Dolly came to us through an agency  that deals exclusively with Eastern European immigrants. Dolly has been in the USA for 25 years, and has been caring for old people ever since.  She speaks English, is a permanent resident, but not a citizen. She never wanted a formal day off, but insisted on being able to cut out for several hours when she needed to run errands. She kept an apartment in Chicago even though she received room and board as part of her compensation. She  never wanted to be paid by check, only cash. My guess is that she is one of the many employed in the USA that enjoy the benefits but do not support the system.

As we began to get acquainted with her,  I learned a little about her back ground. She has a daughter, one grand daughter, and a husband still living in her homeland. With some quick math and a guess at her age she first came to America when she was thirty-five or forty. I wondered and still do about what kind of woman leaves her husband and her only child to come to America to make money? She professed to have a degree in Economics. That sounds great doesn’t it, but she now makes in a single day, what a person with a degree in economics makes in a month in her homeland.

Dolly went to her apartment three times in three weeks. Each time she returned with several bags of groceries from a homeland deli near where she lived. It didn’t matter if Peg and I didn’t like the foods she brought into the house, she needed these things to live, and American food is less nourishing than food from her homeland. On the very first day she spent with us the soup pot was on the stove loaded with beef bones. She simmered the bones for six hours. What happens when you do that is the broth becomes very thick and when it cools it becomes a gelatin loaded with collagen protein.

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I had to look this up, because Dolly also tried to convert me to her diet the whole time she was here. Collagen protein has numerous health benefits one of which is lubrication of the joints. The gel stuff is typical of East European countries. My parents made the same stuff. I remember watching Mom do it, except she used pigs feet and pigs knuckles as the bone source. My dad loved it. As healthy as collagen protein might have been for joints, Dad’s biggest problem in later years was worn out knees and hips. So much for the benefits of collagen protein on joint health. Dolly’s breakfast every morning consisted go six egg yolks and one egg white scrambled. Alongside was a generous slice of the gelatin concoction and a slab of unsalted butter, weird. She kept telling me to throw out all mine and Peg’s pills, and use her diet instead.

Her last shopping excursion happened last Friday. She came home with over a hundred dollars worth of exotic European food. One of them was about five pounds of a special blood sausage the Polish call kishka. As she unloaded her foods and hurriedly put them into the fridge she kept jabbering away about how American food is so lousy. I finally reached a reaction point, and calmly said, “you know Dolly, I often wonder why you came to America.” She was stunned. She looked at me and was speechless. Later that evening she declared she had to return to her apartment for something. Peg was in bed by then and I said fine. She returned a couple of hours later.

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The following morning I had a Lions Club function. I was prepping to leave at 9:20 to make it by ten. I had told this to both Peg and Dolly several times during the week. She came out of her room and declared she needed to go to Walgreen’s for something. I reminded her of my meeting, and asked if she could put it off until I returned at three. She looked at me with a dumb look. Peg needed my attention so I spent the next fifteen minutes with her. It was now time to leave. I searched the house for Dolly and could not find her. Her car was gone, I checked her closet and most of her clothing was gone too. She returned at 10:30 very apologetic telling me she got lost in Frankfort. By now, I was ready to let her go, but knew better than to make it happen before my day was finished.

The Lions had a booth at the Annual Frankfort Community Showcase. I was there to perform free vision screenings on kids. It was good day, we screened seventeen kids, our blood drive netted 22 pints of blood, and our Peace Poster display grabbed a lot of attention. I even recruited a potential member. Whenever I am at such an event, I look at my phone often to see if Peg has called. This day I had a call from the agency I hired Dolly through. Oh no, she beat me to it, I thought. I got home at two-thirty and the first words from her mouth was a story about having to leave immediately to return to the homeland to take care of her husband who needed heart surgery.

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Thankfully, the agency had a new lady lined up to fill Dolly’s void. The new lady is from yet another East European country. Today we went grocery shopping. I told her we shop at Jewel. She told me never shop at Jewel their produce is never fresh and their prices are too high. I facetiously said what about Mariano’s. She said, “oh yes they are the best.” They are also the most expensive, I thought to myself. She pushed Peg around in a transport chair as we shopped for her ethnic palate. Near the end she asked “are there any European deli’s around Frankfort?” Oh shit,” I said to myself, “here I go again.”

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After returning from Mariano’s I put all the groceries away and it occurred to me that I did not see the blood sausage. I triple checked all the fridge spaces and the freezers. Gone, the blood sausage was gone. The light went on, that’s why she went to her apartment on Friday. I got even though, because her final pay was a check.

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Who’s Got the Kishka?

 

One On One Time

For the past three weeks I spent a lot of time visiting Peg at the nursing home. On the day she was admitted, I met with the home’s doctor. He told me that the average recovery time for someone who has been bed ridden is four days of rehab for every day spent in bed. Peg spent four days in bed so my rapid fire brain calculated sixteen days of rehab. Yet, to be very honest, Peg looked like she was just a few hours away from a casket. I went home and prayed. Then, I dialed an agency that provides full time help.

After twenty days in rehab Peg is smiling again, and attempts to walk at every chance she gets. She presents a fall hazard to the home. She began complaining about the CNA who takes care of her, and she has been refusing to take medications. She is ready to come home.

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I had a different theme for this post when I began, but the phone rang a moment ago, and quickly changed my train of thought. The nurse at the home called to report that Peggy refused to eat anything including her favorite, ice cream. I spoke to Peg on the phone to coax her into eating something. She promised me she would. I remained on the phone and over heard the nurse urging her to try a spoonful; she broke her promise. I know if I were there, I would get her to eat something, but it would take forever to make it happen.

This afternoon, at lunch, I was coaxing Peg to open her mouth to take food when it occurred to me that every woman at her table was exhibiting the same tendency. They all needed someone to coax them to eat, and to shovel the food into their mouths. They wouldn’t eat by themselves, but they would eat a bit if they were fed. The light went on, and I realized it was the need for personal attention that probably caused them to respond. When you are alone in a home filled with strangers, strange furniture, strange food, and upset about being there, the only thing on your mind is going home, or dying.

Time is all one has while living in rehab. The rehab part takes twenty minutes of your day, the rest of your time is spent sitting, watching, napping, waiting for the next meal, or the next pill. Taking an hour to take five bites of food doesn’t seem long, except to the caretaker. To the resident it is precious one on one time with a care giver.

Who Is In There?

Common-Symptoms-of-Dementia

A few weeks ago I contemplated starting a new blog which I would have called “Who’s in There?” It is a question I ask Peg frequently, usually in the mornings just after she wakes up. I press my forehead against hers, look directly into her eyes and ask, who’s in there? Her responses vary, sometimes it is “me” others times it is “I don’t know”, and sometimes it is “you”. There are days when she stares off into space and looks totally absorbed in her thoughts. I ask her “where are you?” It breaks her stare, and she’ll tell me she was watching a bird or a squirrel in the yard.
My new blog would be specific to living with someone who has dementia. I believe that writing about a personal problem is cathartic. I posted a piece once on Grumpa Joe’s Place, and received some caustic feedback from close family members who believed I was demeaning my wife. Let’s face it folks, some of the stuff that happens is funny. Most times it is not funny but sad.
The new blog was intended to be more private. I would have opened it on another blog platform and my name would have been totally anonymous.
One objective I have when I write posts is to teach something by using my personal experience. In my career, I was told many times that I was a good teacher. I retired early to give myself time to be able to find a real teaching job. Unfortunately, my wife Barbara had the heart attack, and my teaching goal turned into that of caretaker. Instead, I began Grumpa Joe’s Place with the objective of teaching by using my personal experience to write about issues and problems. To keep the blog interesting I spice it up with my personal pursuits like gardening, flower photography, travel, and woodworking. Lately, I have resorted to using posts from other bloggers whose posts I like.
My final decision is to not begin a separate blog to write about dementia but to teach about dementia on Grumpa Joe’s Place with occasional posts.

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