My Mother-In-Law – A Brief History

There was definitely a decline…

When Prince Louie—my beloved father-in-law, died of cancer in 1998, Darling Ellie had been married to him for about 48 years. They met near Westport, Connecticut when they were young teenagers, and fell in love fast and hard. Darling Ellie was one of twelve kids, pretty much all of whom stayed in the Westport area their entire lives. In addition to a few homemakers, one brother was a policeman and one was a fireman—they were all very active in the community. 

After the birth of their second child, Prince Louie made the tough decision to uproot the family and move. Far, far away. It wasn’t a very popular move, to say the least. They migrated to a small, peaceful beach town in California, and there they stayed. They raised their seven kids in San Pedro, California with Darling Ellie staying home caring for the kids, Prince Louie, and her own mother-in-law, who lived in the front portion of the duplex they bought. Prince Louie worked many side jobs throughout the year—seven kids is expensive—with his primary position in a large, famous bakery in the area. Through the years, more people moved to the area, so Sweet Husband ended up having a very large family contingent in California. Trips back to Connecticut happened yearly in the beginning, and Connecticut relatives often came west to visit, too.

Her eyesight started to decline…

I don’t know when her eyesight really started failing. I’m guessing that even if one of her kids has a date in their heads, it was probably long before that when Darling Ellie started to notice changes in her ability to see. She suffered from Retinitis Pigmentosa, which is a degenerative, genetic disease with a slow decline. She wasn’t the first member of her family to suffer from RP, but hopefully will be the last. My first real exposure to Darling Ellie’s condition was my wedding. Before that I hadn’t spent much time in California, and she was so good at adapting to her surroundings that her condition wasn’t ever an issue in my presence. Someone asked her how Sweet Husband and I looked, and she responded that she knew it was me because all she saw was a big, white puffball. That was 1990. She died in 2018.  

Eleanor’s Health Battles

Similar to my own mom, Darling Ellie basically put all of her own health battles on the sidelines when she was caring for Prince Louie. Prince Louie had a lung removed several years before the cancer came back and ultimately took his life. Throughout that time, Darling Ellie nursed him at home, with the help of her children—primarily her two daughters. They managed to keep Prince Louie home until the bitter end, so he was comfortable and calm in a location he adored. They had retired to Las Vegas in 1988, so they were able to enjoy a few effortless years in retirement before the decline of cancer became a life-threatening issue. 

It wasn’t until after Prince Louie died that Sweet Husband and I realized just how bad Darling Ellie’s eyesight had become. While she seemed otherwise quite healthy, the degenerative nature of Retinitis Pigmentosa made it increasingly difficult for her to manage independently in their retirement house in Boulder City, NV. 

First the eyesight goes

Darling Ellie was fiercely independent, and demanded to stay in her dream home as long as she possibly could. Sweet Husband’s two sisters would take turns coming from San Pedro to stay with her to ensure her safety.

In the house, Darling Ellie was fearless, and incredibly comfortable moving around—even in the kitchen! She continued to do her own housework, and made simple meals for herself long after the eyesight had all but left her. As time passed, Darling Ellie spent more and more time staying with her daughters—both of whom had retired and moved to Las Vegas to be closer to her as the decline became more sudden.

Ultimately, she moved in at both of her daughter’s homes—they each kept a bedroom and bathroom specifically for her to stay there—so she was quite comfortable in all three locations. Moving around outside the homes became increasingly difficult, which is unfortunate because it definitely limited her errands and outside exposures as time passed. 

Then the joints

Like many people—old and young!—Darling Ellie had knee trouble that required a knee replacement. This was a scheduling nightmare, because of the lack of eyesight was hampering her recovery. She worked very hard at it, however, and was able to walk short distances after the surgeries. While every so often she would mention the pain or achiness in her joints, overall she was very positive and didn’t complain nearly as much as she could have. 

Then the mind

Then, you guessed it: She moved into my territory with the dementia. This was the absolute worst thing that could have happened, particularly combined with her loss of sight. It was shocking and startling how fast she went from some cognitive decline to severe dementia. The progression was so much faster than anything I have read about anywhere, and it made it incredibly difficult for the now three children who she lived with. 

Eleanor’s Care In Decline

My in-laws were adamant that Darling Ellie would be cared for at home. So, if you are struggling with your care options for your loved one, this story will give you a very different perspective from mine. In my situation, I knew that Mom would be transitioned to memory care when it became too much for me, but that was never an option they considered for their mom. 

Darling Ellie was extremely fortunate in her situation for several reasons: 

1. She had no debt, and a house worth a pretty penny, so she was solvent. 
2. She had three retired children living in the area, in addition to us.
3. Her three retired kids were willing to care for her full-time indefinitely

That last one is the most important, because they were fully prepared to put their lives on hold to care for their mother as long as necessary. While I have siblings, I’ve done The Job alone, which is the same situation all of my friends are in. To have such support and back-up is absolutely unthinkable to me, and something to envy for those of us doing it on our own.

And, man oh man did she decline. Fast. And it wasn’t pretty.

Unfortunately, Darling Ellie suffered terribly from visions and delusions with her dementia, which were made even worse because she had no sight. So when she was someone breaking into the house, for example, there was absolutely no way to “show” her that it wasn’t really happening. Same thing with the cliff she thought she was standing on, or the kids running in front of the car. It was horrific. I haven’t had to deal with this symptom too much, but according to my in-laws, all you can do is ride it out. She wouldn’t allow herself to be distracted or convinced, so they literally had to let it play out.

If you’ve found a better way, please comment to help others doing The Job, watching the decline.

She also didn’t sleep. At all. I started having the problem of Mom getting up in the night and wandering around the house, which was its own danger, but she would eventually go back to sleep. I mean Darling Ellie would catnap like a flipping giraffe—ten minutes at a time. So her caregivers couldn’t sleep, either. If this is your situation, please find a way to hire help overnight so you can sleep. You absolutely can’t do The Job effectively from a position of exhaustion—you need to get your sleep at any cost. 

 So you can see that my in-laws had their hands full caring for their loved one. They worked very hard at The Job, and did it with as much integrity and love that they possibly could.

Different And The Same

Our care styles, that is. So the three of my in-laws worked very hard, and very well together. There was, as there always is, one person in charge, and that is Sweet Husband’s oldest sister. She was the one whose name appeared on all of the legal papers, which is all that matters to the professionals. As I’ve said many times, “Heavy is the head that wears the crown” but in her case, she had two willing and loving partners to do The Job. Most of us struggle to do The Job alone—making all of the decisions, good and bad, without having the ability to ask someone else’s opinion.

The positive thing about that is that things can move quickly in an emergency. The committee approach my in-laws had worked beautifully for her day-to-day care, but made it more cumbersome to have fast decisions ready when needed.

The two daughters kept Darling Ellie as active and involved in life as much as they possibly could. They cooked her favorite meals, and changed her into her favorite outfits. They took her for drives and walks in the wheelchair, and tried their best to keep the delusions at bay. Every time we were there, everyone was laughing and joking and telling stories to try to keep those neurons firing in her brain as best they could. She would keep her seat at the head of the table, slowly and methodically eating the wonderful food her daughters would cook for her (they are absolutely amazing cooks, too), and compare their meals to how she used to prepare them! 

It was a happy home, even as she declined. 

We should all be so lucky…

THANK YOU FOR READING THIS FAR

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