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?

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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.

I Lost It

Peg MTH-IMG_1959

Last Friday Peg and I went shopping for groceries. We have done this together since we married ten years ago. I parked as close to the door as was possible and we walked six car widths out of parking into the store and picked up a shopping cart. We are the world’s least organized shoppers. I start with a plan but once we leave produce the plan is lost, and we shop like a cue ball bouncing off cushions. This is one way we get some walking into our sedate lives. Peg enjoys shopping even if it is just to get out and look at stuff.

Friday night we went to bed early because we planned to drive to Michigan to visit my son, and his family. During the middle of the night I awakened by the bed shaking. Peg vibrated as if a demon possessed her. I swung my arm across her and tried talking to her. She was as stiff as a board and shaking like crazy. Her eyes were closed and she did not respond to my words. It stopped within a couple of minutes, and she became completely relaxed. She slept the rest of the night. I had a hard time falling back to sleep.

The opportunity clock sounded off in the morning and I jumped from bed into the bathroom. Usually, Peg is out of bed by the time I re-enter the room. This morning she was still in bed. I talked to her and she did not respond verbally. She was awake but not moving very well. I called my son to tell him we wouldn’t make it.  Peg was still in bed.

I tried to coax her out but her response was muted. I called 911 and asked for assistance getting her out of bed so I could take her to the ER. Within minutes three men arrived and began asking questions and taking vitals. A few minutes later four more men walked in. I was busy answering their questions and watching what they did when four more guys walked in with a gurney. The first guys were cops, the second group was the fire department off the firetruck, The last group were the paramedics. I remember telling one of them that I asked for a couple of guys to help me lift her out of bed not the whole department.

Peg was transported to Silver Cross hospital and checked into the ER. I met them there because I drove separately. By the time I got in to see her she was hooked to fluids, and the ER physician began asking me questions. They sent her for a cat-scan to determine if she had a stroke. I told them about the seizure and immediately they called the neurologist. He quizzed me about the seizure and almost immediately ordered an anti-seizure drug for her. He wanted an EEG test which is best described as an EKG of the brain. We would have to wait until Monday to do the EEG. The results of the cat-scan came back inconclusive, so they wanted an MRI, also on Monday. They admitted her to  the hospital.

Peg spent Saturday and Sunday waiting for things to happen. Early Monday morning she had the EEG, and the MRI. We waited again for the results. Physical therapy was called in to assess her condition. PT determined she could walk with some assistance; they walked her to the end of the hallway and back. She did fine. At seven o’clock Monday evening the hospital assigned primary care doctor assigned to her case came in the review results and to give us a plan going forward. He asked if we wanted to go home then or wait until tomorrow. I said, we’ll wait until tomorrow.

Tuesday morning, I came with clothing, and shoes for Peg. A Certified  Nursing Assistant (CNA) helped her get dressed and we waited for the nurse to arrive with discharge instructions. He came and I tried helping Peg stand up from the edge of the bed. A nurse once trained me on how to help someone get up and I have practiced the procedure since. I stood in front of Peg straddling her legs with mine and bent down. She reached up and put her arms around my neck. I wrap my arms around her back near the waist and count one, two , three. I lift and she pushes up with her legs. It has worked hundreds of times. This time however, she got half way up and crumbled like a wet noodle. I said, ‘This isn’t going to work.”

Mark the nurse asked, “what isn’t going to work?”

“I can’t take her home this way, I won’t be able to handle her alone.”

I spent the remainder of the day with the social worker making arrangements to send Peg to a Skilled Nursing Rehab facility.  We left the hospital at seven and arrived at the rehab place by eight. They checked her in, and quickly reviewed her records to determine what level of care she required. Peg was in good spirits and talking. When I came I answered questions again. I arrived home at 10:30 p.m.

Wednesday morning I arrived at her place by ten-thirty. The elevator door opened and I looked out. There she was facing me. She sat in a wheel chair at the nurses station along with several other white hair ladies. Her head hanging down tilted to one side, her chin was in her chest. My beautiful wife Peg had transformed into a helpless aged person trapped in a worn body.  I cried.

 

 

 

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