Alzheimer’s Disease is Hard on Everyone in a Family, Not Just the Patient!

My father passed away from Alzheimer’s Disease in January 2013 after suffering the effects as early as the late 1990s. The effects were subtle and no one in my family really noticed but me, because I worked with him every day. Those of you who have relatives or friends that suffer from this insidious disease know that some people get very good at covering up their dementia, at least in the beginning.

James J. Culotta circa 1963

He was a tremendously vibrant man who was self-taught and self-made, not knowing how to slow down except on the weekends when he would suddenly become Jimmy the fisherman. I have some amazing, funny and slightly embarrassing stories about his fishing escapades. But one thing he didn’t do was tell tall tales about the one that got away!

My mother only a few months before her stroke in 2001.

Anyway, after suffering for two years from the effects of a devastating stroke that left her paralyzed on one side of her body and requiring care 24/7, my mother passed away in June 2003 and my dad went downhill really fast. Thank the Lord that my father had been able to build an amazing family business with income that allowed us to have nursing assistants to care for her in her own home where she felt as comfortable as she could be under the circumstances.

I think the hardest thing I ever had to do was to tell my dad that my mother had passed away. She had been in the hospital at the time and it was the first morning that he had not gone to visit her. I will write about that story another time because it is compelling.

He and my mother had been married for over 61 years and she had been his primary caregiver. As if that wasn’t bad enough, Hurricane Katrina hit and destroyed their home two years later in August 2005.

Before and after photo of my parents’ home on Treasure Isle on Lake Pontchartrain, Slidell, LA after Hurricane Katrina destroyed it in August 2005. This house was my Dad’s dream home. He was a builder and it was nearly 6,000 s.f. living area and 10,000 s.f. under roof.

At that point, my sister and I had no choice but to put my dad in assisted living because he was simply unable to care for himself, but the nearest facility that had an available room that was decent was over 200 miles away in Alexandria, LA, so we moved him there with nothing but the clothes he had been able to take with him before evacuating. 

Look at the before and after photos, and you can see why. The entire second floor, where my parents’ master bedroom was, collapsed from the storm surge and all the contents were emptied onto the slab. We were not able to recover any of my parents’ clothes, collectibles, jewelry, etc. All we were able to recover were some photos and very old family memorabilia that miraculously was not damaged. Believe it or not, we could walk up the stairs to the third floor, which you can’t see but is visible through the dormers.

When Katrina hit, my apartment was so damaged that I could no longer live there, so I was three months in Texas and then in November 2005, I moved to Parma, OH a suburb of Cleveland.

I wrote the following letter to my father. It is self-explanatory, and I have attached photos that explain some of the things I referenced.

Daddy,

I wish I could be with you on Christmas, but I cannot make the trip. You may not remember, but I moved to Cleveland, Ohio about a month ago. It takes two days to drive back to Louisiana (each way) and I just can’t take this much time off right now.

The weather here is very cold and windy, but I really do not mind. Since I got here, it has been in the twenties most of the time. It has been almost two weeks since it was above freezing. It is fun walking and driving in the snow and ice, but you have to be very careful or you will fall on your butt. Fresh snow is easy to walk on, although it can be deeper than it looks. I have to wear snow boots when it snows plenty because if you step in it and it is too deep, your shoes and socks get soaked because the snow melts quickly. It is amazing how it sticks to everything.

It has taken me a while to get settled and I still have a lot of boxes to unpack. My bed frame would not fit to go up the stairs, so I had to just put the mattress and box spring on the floor. I have a mattress that uses an air pump and I could not find it, so I had to buy an inflatable air mattress like you use for camping. Surprisingly, it was very comfortable and I used it for the first three weeks I was here until I found the pump for my real mattress.

I have taken a lot of pictures since I got here and I have printed some of them for you. I will be sending you pictures and letters on a regular basis since I have more time now.

I wanted my dad to know this was him in 2001. This was taken right around the time of the photo of my mother, above. You will notice he was standing to the right of the garage, watering his plants.

Up until a few days ago, I had been working 10 – 12 hour days, sometimes even more than that. My business partner and I travel within about an hour to 1-1/2 hours from here and sometimes it is 10 or 11 PM before we get back home.

I live in a city called Parma and our office is in Bedford. They are both suburbs of Cleveland.  I am really surprised that the cold does not bother me. It does get really windy though and then it seems colder, but a good coat and gloves help. The night I took the picture of my snow-covered car, I did not have my gloves on and I almost got frostbite because my hands got wet and cold while I was brushing the snow off the car.  I won’t do that again, as my hand hurt for hours!

This was the first time I had ever had snow accumulate on my car. I had grown up in the South!

They really do a good job of keeping the roads clear of snow and ice and I have been very fortunate to avoid accidents on the freeway, where there have been plenty accidents because of the ice. Sometimes you just don’t see it until it is too late and then the car starts skidding. I almost slid into my garage and a wall at the office because I hit an ice patch, but luckily God was taking care of me and I stopped before I hit anything.

The most snow we accumulated at one time has been about 6 inches. It snowed for a few days early last week and it is still on the ground because it has not been above freezing since. Two nights ago, it was 7° and with the wind chill factor, it was -7°.  I really love the snow. We have a lot of farms around here and when it snows heavily, it is just white everywhere. It is really beautiful.

This was the view to the right of the house I was renting in Parma, OH where I was displaced for nine months after Hurricane Katrina before moving back to Louisiana.

During snow, it seems like every fifth vehicle is a snow plow. I will send you a few pictures next week. I have plenty more to send.

I have been very busy since I got here. Right now I am doing mostly preparation work for Dave, my business partner. I am learning his system, which he does really well. We go into churches and present our seminars on Senior Money Matters or Biblical Stewardship and after the seminar, the attendees sign up for some free reports. We meet with them to explain the reports and after we point out some problems with their current financial investments, they decide if they want us to fix it or not. If they decide to use us as their financial advisors, we earn a commission on whatever investment products they want. It is very rewarding, helping people make sure they have enough money to live during retirement. Many people think they have plenty money, only to discover that it will not last as long as they think.

I am going to Dave’s house for Christmas, after church. He has a lovely family – three boys and four girls. His oldest son does not live at home anymore.

Daddy, I love you and miss you very much. I know it is hard for you not having family or friends around — I have the same problem being 1,300 miles from Louisiana.

I pray you have a blessed Christmas and I hope I will be able to see you soon,

Love,

Your Son, Jay

I moved back to Louisiana the following August but we still had to keep my dad in Alexandria because there still were no acceptable assisted living facilities in the Metairie area where my sister and her family lived. But about a year or so later they built a brand new facility only a few blocks from her home and we were able to move him there.

My sister had our father’s POA and she did a terrific job of taking care of him after our mother passed away and their home was destroyed. It was convenient in a sense that the first assisted living facility was in Alexandria because she and my brother-in-law have an autistic son who lives at St. Mary’s Residential Training School also in Alexandria. So they were able to combine their visits to see our dad and their son. They even bought a condominium there to make it easier to spend weekends and holidays and would take my dad out some time to spend some time with the family.

When we were able to move him back to Metairie that was even better because Sunrise was only a few blocks from my sister and her family’s home and I know that she visited frequently, at least once a week.

I lived in Mandeville, LA about 35 minutes away and wanted to visit him a lot more often than I did. But I must confess that it was SO HARD to see him just wasting away. I know it is no excuse, and I felt terribly guilty, but every time I left him after a visit, I nearly broke down in tears when I would get back into my car.

We had grown so close the last five or so years before my mother passed away because I had worked with and for him since 1976. But since 1997 I had really been around him more than ever and we talked about so many things we had never talked about before. He had semi-retired after moving to the Treasure Isle home and I was over there at least once or twice a week to visit with him or take him to a meeting that we needed to attend.

He had about six questions that he would ask every single time I would visit and he would repeat those questions over and over again. Over the years that we worked together, I was not always the most patient son and he most certainly was not a patient man either, but after God gripped me with His Saving Grace in October 2002, there were some negative aspects of my personality that changed overnight.

One of those traits that changed immediately was patience. I was able to listen to my dad and answer his questions each and every time as if it was the first time I had ever heard them without any hint of exasperation. And I knew that only a few minutes later (sometimes seconds) the same question would be asked.

James J. Culotta on his birthday at 97!

My memory is not good recalling the exact details, but eventually, my dad began to have other health problems and Sunrise could no longer adequately care for him, so we had to move him to a nursing home. That really KILLED me! He survived about another year there before passing away in January 2013.

I don’t know how other families who don’t have the financial resources deal with this insidious disease. We were fortunate to have the cash reserves to pay for his room because Medicare does not pay for this.

A long-term care policy is a good resource to have and I tried to get both my parents underwritten when I was a financial advisor, but I could not because my mother had some serious health conditions and my father was in the beginning stages of dementia.

I urge you if you have not already done so,  to look into a long-term care policy with a major insurance company because it could mean the difference between DIGNITY and disaster when you or your parents get old!

I miss him so much, but I am grateful that he is with Jesus. Just how I know that is a story for another time, so you will have to subscribe to my newsletter and/or bookmark my blog to make sure you read it. Trust me, you will NOT want to miss it.

Please note: I reserve the right to delete comments that are offensive or off-topic.

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