Can an Alzheimer’s Patient Choose When Their Time is Up…I Believe My Mother Did

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It’s mid July, with a very hot summer Sunday upon us. Can hardly believe that we are almost halfway through the summer already. We patiently wait for summer through the long winter months with its miserable weather, which seems to be a lifetime, only to see summer fleeting right under our nose.

For those of us who are working a Monday through Friday schedule, the weekends are especially important to us and I am no exception. Weekends are sacred, even though no major, monumental or earth shattering events take place in my life. I am happy with status quo as long as status quo is peaceful, happy and healthy. What else can I ask for? What is left really other than winning the lottery! First you should be happy and healthy, as being wealthy can’t do that for you. Lord knows, it could help, but it won’t fix everything. Since my mother Eleanor passed away last September, it’s been a year of unfolding, adjusting and finding a new normal. Since she was a very private person, I discover new things about her and the situation every time that I look into her papers and journals.

Having said all of that, I was home yesterday with a mostly cloudy day and a little time on my hands. I decided to go through the mountains of papers and things on my table so that I could organize and file papers away where they belong. I came across an over sized manilla mailing envelope that my mother had sent to me years earlier, which I had set aside to look at again when time allowed. Back then, my cousin Sam’s wife Charlotte was doing a family tree of my mother’s side of the family and also of Sam’s father’s side of the family. She had learned a lot in her research that I had also wondered about. In the illustration of the tree, Charlotte had written notes and questions for my mother to answer since she was the only one left from that generation in our family who could possibly shed light on her questions. Back then, she showed no signs of Alzheimer’s disease so she was able to fill in a lot of blanks.

Some of the questions that Charlotte asked were about names such as Jessie, was it a male or female in this instance, or marriage dates and deaths. She had no way of knowing our side of the family because Sam’s mother had died years ago of Leukemia and his father had eventually remarried, which forced our side of the family to a distance of cross-country. New wives are never comfortable with the previous, especially where children are concerned, right or wrong, it’s a fact. Needless to say all of us kids and cousins were cheated of a connected family relationship, which was probably more my loss than theirs, mainly because I was an only child in a broken household, in desperate need of a large family connection.

Mom-Van_1979 Mom_Van_xmasMom wrote notes on the side of the family tree that Charlotte sent and as I read through it, all seemed normal and interesting, until I came across something that still has me scratching my head, even today. Years ago, back in 1970, Mom married a man named Dwight Van Meter, an advertising executive and photographer, 20 years her senior, living in New York City, whom she met through one of her own prestigious jobs. She wasn’t one to fall in love easily, but she fell hopelessly in love with Van, as he was known, and in 1970, they married. Then, in 1985 when Van passed away after care-taking him at home, she went into mourning until her own death.

She was living in NYC at the time of her marriage and I was off living the hippie experience on Long Island. She was very private about her life and it wasn’t until afterwards, did I learn of her marriage to Van. It was okay, I didn’t mind at all, I was very happy for her and her new life, while I myself being wild and crazy in my own life, which probably wasn’t the smartest thing that I’ve ever done if the truth be told. But it was what it was, and today, in hindsight, it still was what it was and I accept that. What I am trying to say is that, I never really made a mental note of the date they got married. I was way too involved in living my own life at the time as most 21-year-old kids tend to do.

Photos: top: (1) Mom and her sister Lillian on a wedding day, (2) Mom and Lillian young and pretty with the rest of their lives ahead of them,
(3 + 4) Mom and Van, the love of her life, (5) Mom’s pin that she wore on her clothing everyday while living with me. She came to me with this pin. Even though she eventually didn’t remember, she always had to have to pin on. Love is deeper than Alzheimer’s disease.

Van buttonIt wasn’t until yesterday, when I was looking at the notes written in my mother’s handwriting, that I had a HUGE, COLOSSAL, GOOSE BUMP WOW MOMENT. My mother and Van got married on September 28th, 1970. My mother passed away with her diseases of Alzheimer’s/dementia and Leukemia on September 28th 2014…exactly to the date, 44 years. What are the odds of that happening…I mean, what’s the chance that she would have died on that exact day? I am a firm believer in the “there are no coincidences” mentality. She spent the last 29 years mourning Van’s death and writing powerful and emotionally written journals about her deep grief. Before her diseases set in, she made me promise that I would scatter her ashes in the exact place where she had spread Van’s ashes, and I have a lot of maps and instructions that she had sent to me through the years outlining her wishes on that subject. Of course, I promised and will honor her wishes when finances allow. But think about it…coincidence? I don’t think so…I believe in my heart of hearts, that even in her state of mind, that she chose the day she would die and that he came for her on new journey. I truly believe that they are together again, finally, without the indignity of the diseases and pain that they suffered in the end. A true love story.

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Mom’s Supplies Go on to Help Others with Dementia and Alzheimer’s

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After bouncing off of a great weekend, I’m still basking in the rays of the good feeling in knowing that I was able to help a few people. I didn’t realize that there were so many people out there that need a helping hand while taking care of a parent with Alzheimer’s and dementia. This weekend was very enlightening for me seeing Mom’s unused supplies go on to help others with dementia and Alzheimer’s.

While I was care taking my mother, also with dementia and Alzheimer’s, we found the need to use the adult pull-ups for her. It wasn’t easy at first to get her to agree to use them, but after awhile, she accepted them and put up no fuss, except of course, the effort it took to put them on. During the years, we seemed to get monthly deliveries, which filled my basement with cartons of pull-ups, leaving little room to walk around. Of course she didn’t use them all, as no person in the world could have used the quantity that was delivered to her. When she passed away last September, my basement housed 28 cartons of adult pull-ups containing 4 packages of 20 totaling 80 pull-ups per carton. Now, that’s a lot of pull-ups.

pullups3 From the get go, my intention was to bring the supplies to the local nursing homes to help some other elderly people. Apparently, after calling around to the homes, I learned that they are restricted and must buy from whichever source they normally order their supplies from and are not allowed to accept donations of that manner. Someone suggested that I call the local thrift stores, but I didn’t want anyone to make money from them…I wanted them to help other people like my mother, as a donation…free.

Finally, this past weekend, I decided to post them on Craigslist for Free. To my amazement, my phone started ringing immediately after posting. My phone didn’t stop ringing all day. I was stunned at how many people are in the very situation that I was in with my mother. They all seemed to have the same urgency in their voice. I knew that I couldn’t help everyone, so out of fairness, I took the first 2 callers, who had their own story to tell.

Photos: above, (1) Mom, during the first week of home hospice, still smiling. right, (2) the infamous pull-ups, below, (3) Mom in bathing suit looking pretty snazzy…happy as a lark.

The first caller, Ed, a truck driver told me that he just recently remarried and that his mother had moved in with them because she had Alzheimer’s. His new wife was care taking his mother, which in itself I thought was incredible, but also a huge stress on the new marriage. He told me that he was having the same toileting  issues that all of us caretakers have when taking care of anyone with Alzheimer’s or dementia. Incontinence is not a pretty or pleasant sight and it’s definitely intolerable when finding yourself in the middle of this situation with an elderly parent. Plus buying the adult pull-ups on a regular basis isn’t affordable for everyone either, so it’s a tough situation all around. Ed was so grateful to get half of my offerings which would hold him over for quite sometime, that he gave me a huge hug…he had no words.

The second caller Steve, lives about 40 minutes from my location, originally from Boston, as I could hear in his accent. He also sounded desperate to be able to benefit from the free pull-ups. His mother with Alzheimer’s also needed the pull-ups, who broke her hip and was getting out of rehab the next day. She lives with his sister, who is the caretaker for her. They live in Boston, so he would drive the cartons up to Boston right away for her to use. He was an older man on a fixed budget, who was trying to help his mother and sister in any way that he could. Steve told me how much he appreciated getting the cartons and that he would be going to deliver them to Boston the next day.

For the rest of the day, I spoke with many other people who all had the same urgency in their voice, all caretakers to a family member, all needing the help, all having their own stories and struggles. I was truly amazed and touched at how many caretakers there really are out there, all having the same issues when dealing with this disease. When care taking a parent at home, the people who aren’t lucky enough to get their parent onto a state program to help with aides and supplies, suffer the most. They have no break, no relief and many times must quit their jobs in order to care for the parent. I truly believe that there should be an outlet for some sort of help, physical and monetary, while they are able to go to work to support the household. What will become of the caretakers who don’t have a spouse or family member to help out? What happens if they must stay home without employment? It’s huge problem in this country, and it needs to be addressed. The baby boomers aren’t getting any younger and as we all age, there will be more cases of Alzheimer’s and dementia than ever before.

mom-carSomething to think about…but for today, I will bask in the wonderful feeling that I was left with in helping Ed and Steve with their struggles. Mom would be happy about helping others like herself.

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