Remembering Alzheimer’s Patients and their Caregivers

IT MAKES SENSE TO ME

By Larry Peterson

Alzheimer's patient--Wikimedia Commons


Remembering Alzheimer's Patients
&
their Caregivers
 
Image may contain: text
                        
     

Visiting Homebound Elder-Catholics—A Privilege and sometimes, an Unexpected Challenge

IT MAKES SENSE TO ME

By Larry Peterson

I have been an EMHC (Extraordinary Minister of Holy Communion) for over 20 years. I have had the honor and privilege of bringing Holy Communion to many people in many places: hospitals, nursing homes, hospice centers, assisted living facilities,and, of course, to the homebound. I love being part of this ministry and it has brought me in touch with some amazing people who have lived their Catholic lives quietly, faithfully and without fanfare or notoriety.

Most of those I visit are Elder-Catholics.These are the Catholic faithful who have, throughout their lives, supported their church, been active in various ministries and carried on the faith that was and still is, part of their very being. Some were born into the faith and it was nurtured in them by their parents and oftentimes by nuns, brothers, priests and Catholic laypersons.  They in turn have passed it on to their own children. Some found the faith as adults and converted. (I so admire those people.) And so, as is the way of things, the Church continues.

 I would like to share a story about one of these  people. His name is John. I have been bringing  Holy Communion to John every Sunday for a little more than a year. He is 90 years old, an Army veteran, spent almost 30 years in the Far-East and was married for 60 years. His wife, Mary, passed away several years ago. He loved her dearly and misses her greatly. John is not delusional, or suffering from dementia or anything like that. His mind is sharp and clear. Physically, John is  deaf (hearing aids help a tiny bit) and wheelchair bound.

 When I arrive at his front door, I push the doorbell. I hear a chime, he does not.  Inside, several strobe lights begin to flash notifying him someone is at the door. He is expecting me and the front door is unlocked. I walk in and he gives out a big, "Hey, hey, good morning." I more or less holler back, "Hey John, how you doing today?"  He is always wearing  a smile. He says, "Well, I'm still here."  We both laugh.

John is facing a dilemma.  He picks up the newspaper from a few days before and points to a story. "Have you gotten any feedback on this?" I look at the paper and he has it opened to an article dealing with the church's newly revised guidelines on cremation. I shrug and tell him I have not. He says, "I have a problem and maybe you can help me out. I need some guidance."

I am not "Father Larry" or "Deacon Larry"..I'm just Larry. I immediately feel a bit insecure because I do not like telling folks what they should or should not do when it comes to their personal faith issues. I quietly ask the Holy Spirit to quickly help me out. Then I say, "I'll try, John.  But I may not be able to. I will go to Father Anthony and ask him if necessary."

Being part of this ministry can have unexpected rewards. God was about to bless me with a glimpse into the hearts of two Catholics, a man and a woman,  people of faith who married in the faith and lived it and who shared a love that did not die upon the death of one--rather, it simply continued and still existed. John says to me, You know, I am upset about this article. It says we Catholics must bury the ashes of loved ones in sacred ground."

I said, "That isn't anything new. Some folks are scattering ashes over the Gulf of Mexico or off mountaintops or sharing them among family members. Those kinds of things are not approved of."

Look", he says. "I have Mary's ashes here with me. I talk to her everyday. I'm all alone and I feel she never really left and I get such comfort from that. Do I have to get her over to the cemetery?"

I'm looking at him and tears are filling his eyes. He wants to be a GOOD Catholic man and he loves his wife and wants to be loyal to her.  He will give her up if the Church requires it even though the pain he will feel is unimaginable. It did not matter. He would be true to his faith no matter what. I was looking at  a man who would have gladly embraced a martyr's crown if he had been called upon to do so.

 I knew that cremated remains are supposed to be kept intact and placed in a proper vessel. Nervously I began to answer but he continued. "I have a spot down at the VA for both of us. I made arrangements with the funeral home and when I pass they are going to take us together down to the VA and bury us next to each other."

I breathed a sigh of great relief.  Casting doubt to the wind I told him, "John, that is great. She can stay here with you. She is encased in a vessel and is scheduled for burial. You will make the trip to the VA together. Don't worry about a thing."

I will never forget the smile that broke out across his face. I'm not sure if I gave him  proper 'guidance'. No matter, in this case I am sure the Holy Spirit helped me out. I will check with the priest when I see him.

                                             ©Copyright Larry Peterson 2016 All Rights Reserved

     

For Alzheimer’s & Dementia Patients, November is National Family Caregiver Month*

IT MAKES SENSE TO ME

By Larry Peterson

My wife, Marty (Martha) has Alzheimer's Disease and I am her primary caregiver. Since November, 2016, is National Family Caregiver's Month sponsored by the Alzheimer's Association, I thought I would share a slice of an average day she and I experience together. At the same time I can also leave some links to information about dementia (there are many kinds--Alzheimer's is just one) and give a "shout-out" to all the millions of Americans across the country who are caregivers.
Until Marty actually became an unpredictable, uncertain and sometimes obsessive Alzheimer's victim, I did not understand Alzheimer’s Disease. I thought I did but I did not. Meeting folks at the Alzheimer’s Caregiver meetings allowed me to learn that what I write here is not unique to me. It is more or less part of the norm within an Alzheimer home and I am just one of a vast multitude of caregivers living alongside this illness.
Alzheimer Patient--Wikipedia commons
I never imagined the confusion and fear that slowly and relentlessly fills the vanishing mind of the person under attack by the Alzheimer demon. I never knew until I shared her physical world. I wish I did not have to know. What follows is a brief conversation that Marty and I had last evening. She was sitting on the sofa and it was about 6:30. I had just walked in from the other room. The conversation went like this:
"Oh, I'm so glad your back home. Are you going to stay here?"
Not having been anywhere, I was caught a bit off guard. I answered, "Uh--um--Of course I'm staying."
"Do you have any of your things here?"
I reply, "Why don’t you walk back to the bedroom and check the closet."
She sighs and smiles. She is faking because, even though she has lived in the same house for many years, she has no idea where the bedroom is located.  She tries to “play it off’ because she doesn't want me to know that she doesn’t know. But I do know and she knows I do.
So I nonchalantly point and say, "Back that way, where the big bed is."
She shakes her head and says, "Oh, of course, sometimes I don't know where my head is."
I simply say, "That's okay. No problem."
"Well, are you going to sleep here tonight or go to the other place?"
There is no other place and I have no clue where her mind has taken her. I just go along.
And then it is temporarily over and the evening continues. More is on the way such as telling me she really wished she did not have to work tomorrow even though she has not worked for almost ten years. You get the idea.
For the caregiver it is a two-edged sword. You are watching someone you love, mentally evaporate while at the same time trying your best to be as patient and as kind as you can be to that person. As the caregiver it can sometimes be a bit overwhelming. Redundancy can push your patience levels to extreme borders. As Marty's caregiver I can say, unequivocally, that my greatest strength comes via my Catholic faith. I lean on it like a man with two broken legs needing crutches. Without them--well, I would fall hard and often.
There are many types of dementia but Alzheimer' is the primary cause.  Vascular dementia, Parkinson's Disease, Huntington's Disease, Mixed Dementia and others are a few conditions on a long list of illnesses that cause dementia. Alzheimer's is a progressive disease and it continues to worsen as time goes by. There is no remission or leveling off. Eventually the patient will lose the ability to even carry on a simple conversation, or even remember to use the toilet. The end result is always death. It is truly a dreadful illness.
I could go on and on but I have provided several links within this article that will take you to more detailed information about Alzheimer's Disease and dementia. As people live longer the illness is seen more and more. More resources have been allocated for Alzheimer's research. Prayerfully we will find a cure. 
Here is a sidebar to the above: The patron saint of Alzheimer's patients is St. Dymphna. Ironically, St. Dymphna has had a profound involvement in my family's life. My daughter's middle name is Dymphna. (See  Aleteia for more). When I discovered that St. Dymphna, the patron saint of nervous and emotional disorders, was also the patron saint of Alzheimer's and dementia patients, I could only smile. I love St. Dymphna.
Please remember to keep all Alzheimer's and dementia patients and their caregivers in your thoughts and prayers, not just during the month of November, but all year long. 
St. Dymphna, please pray for them and for all of us.

*This article also appeared in Aleteia on Nov 8, 2016

                                 ©Copyright Larry Peterson  2016

     

Celebrating Our First Alzheimer’s Christmas Together; Laughter Allowed

IT  MAKES SENSE TO ME

by Larry Peterson

I guess the first time I realized that something was really wrong was about a year and a half ago. I have a bedroom I turned into an office and I was sitting at the keyboard clicking away. I sensed someone behind me and turned to see my wife, Marty, standing there. She had a strange look on her face. I remember the moment because fear was etched across her face. "Hey," I said. "What's the matter?"

Then I noticed she was trembling. I stood up and went over to her and put my hands on her shoulders.  She stammered and sort of whispered, "I don't know. I think I need your help."

"Okay, what is it?"

Marty turned and headed down the hall past the living room and into the kitchen. I followed and noticed that she had her "cookie" stuff out. As she had done so many times in the past,  she was about to  make the best, old fashioned, home-made, chocolate-chip cookies I have ever had. Like a child, I said, "Oh, awesome, you're making cookies. So, how can I help?"

"She sighed and shook her head, She began to cry and, looking at me, said, " What is all this? I don't know what it is for?"

The woman who had made thousands upon thousands of these cookies over the years had no memory of previously doing what she had done so many times before. She had placed the needed supplies on the counter and went to use the bathroom. When she returned a few minutes later what had been virtually second nature to her had been erased from her mind. It was all gone. She had come back to me for help because she KNEW something was terribly wrong inside her head and this time the sudden, specific memory loss was scaring the hell out of her. She sobbed, "What is happening to me?"

She had been sick with Lymphoma since 2011. She had endured numerous cycles of chemotherapy to fight the disease. Anesthesia required because of surgery in August (needed to repair a broken ankle) and an attack of A-Fib (Atrial Fibrillation) in September exacerbated the cognitive dysfunction. She was officially diagnosed as having Alzheimer's Disease *on September 28. And now we are approaching our first Christmas together with  Alzheimer's as our unwanted Christmas guest. Guess what---it is OK. He will not ruin our Christmas. He is welcome to join us. That is because we have started to laugh again, more and more. And we are laughing at the insanity of living in Alzheimerville. And trust me, it can get quite wacky.

I have always had a bit of a "flip attitude". It probably has helped me get through some tough times. So when Marty goes to the cardiologist and goes to sign in and cannot remember her name she looks at me for help. I smile and say, "Who cares Lucy, they know who you are. Just put down Lucille Ball."  She starts to laugh and I laugh and I write her name down for her. Not an issue.

The past ten years of her life seem to have literally vanished from her brain. She does not remember us getting married. (We were both widowed and married eight years ago. She has no clue.) So she asks me if we are really married. I show her our marriage license and pictures from our wedding. She is shocked. "I can't believe it, " she says. We really ARE married." Now, every night I say to her, "Okay, we can sleep together tonight. Its not a sin."  She always laughs at that.

There are so many little, extraordinary things that happen every day. Being asked the same question over and over can become unnerving. I have turned it around where I start by giving her the answer.  For example, she asks me ten times a day, "How do you feel today?"  After  a few times I answer, "Today I feel like seeing you and that makes my day shiny."  It is a ridiculous answer but she likes it  and I like it too.

I cannot count the things that have been moved to the strangest places. I have found the Parmesan cheese in the towel closet,  unwashed clothes in the dryer. She makes coffee and tells me it is the worst coffee she ever had and I should let her make it. She has hair curlers that keep vanishing. I have found them in the garage, in the refrigerator and under the kitchen sink. We had been searching for them and when I found them in the refrigerator I said loudly, "Here they are."

She was standing nearby and turned to see me lifting the bag from next to the milk. I quickly asked, "Can  I use these for curly fries?"  I began to laugh and she shook her head and smiled. I gave her a hug opened the freezer door and tossed the curlers in. "They are not frozen enough," I said.  She began to laugh and so did I and, although shrouded in a dark moment, we laughed our way into the brightness of a new moment.

 Marty has been captured and imprisoned by the most insidious of diseases. It is like a computer virus slowly deleting what is in memory. So far the last ten years are gone. That cursor is still clicking, delete, delete, delete.. The day will come when she will not even know who I am. I will do my best to keep her laughing and smiling as long as I can and as long as she understands why we laugh.

As for me, I must admit, this entire situation has been wearing me down. There is a lot to do as a caregiver. I traveled a similar road with my first wife, Loretta, who died 12 years ago from cancer. She was sick a longtime but she never lost brain function. That is a very difficult thing to deal with 24/7. But you do what you have to do.  If a man and a woman love each other that is the way it should be, HAPPY to be there for each other, "no matter what". We both took vows before God and man to that effect and, for me, they remain in full force until death.

Our biggest friend in all of this is our Catholic faith. It is there for us through the Holy Mass, through Our Lord Jesus, through Our Blessed Mother and through the examples and intercessions of so many great saints and reinforced every day by prayers from our family and friends.  In fact, I did attend Mass this morning and I had a bit of an 'epiphany'. I was feeling a bit sorry for myself when I realized I had been given a Christmas gift from God Himself. (If you think I am crazy, I don't care).

This gift is my ill wife afflicted with a disease that is unstoppable and incurable. She is foremost, God's child, and now she needs someone to take care of her just as she did years ago when she was a child.  We met at church and were married in church. An unlikely couple, I know that God brought us together. Maybe this is why. Because during the Christmas season of 2014 I realized that besides a wife, HE has given me one of HIS children to care for. I will do my best to make Him proud. I will also do my best to keep us laughing. It is all GOOD.

MERRY CHRISTMAS
________________________________________________________________________

* In case you do not know this, Alzheimer's Disease and Dementia are NOT the same thing. Alzheimer's is the number one cause of Dementia but there are over 150 different causes.                                                                       copyright Larry Peterson 2014