Recap Of Darling Ellie’s Life!

Last week I presented to you the life story of my mother-in-law, a strong woman who spent the end of her life with dementia. When her husband died in 1998, Darling Ellie was already completely blind, but functioning exceptionally well in her own home, or the homes of her daughters. Darling Ellie was extremely fortunate to have three retired children living here in Las Vegas with you, in addition to my family. 

Her three kids did an amazing job of living up to their promise that she would remain at home as she aged. It was very important to them as a family, which was quite obvious as Prince Louie declined due to recurring lung cancer. For Prince Louie, he remained home all the way up to his last hospital visit. 

Darling Ellie, however, had a multitude of problems in addition to the failed eyesight. The worst symptom of her severe end of life dementia, in my opinion, were the vicious and negative visions and delusions that haunted her. They made it impossible for her to relax enough to sleep, and caused her tremendous distress throughout the day and night. 

Working overtime, Sweet Husband and his three siblings did their absolute best to keep her comfortable and happy as the severe dementia tore through her mind. 

Eleanor’s Quick End

Then she fell. And fell again.

This is a common end to the battle of a lifetime. Something small happens, and everything you’ve worked so hard to construct falls apart like a house of cards. Even if you aren’t susceptible to dementia near the end of life, anything could happen.

Between the falls, the severe dementia, the inability to walk unassisted, the bad joints, the lack of eyesight, and the lack of sleep, the doctor in the hospital wouldn’t let her return home.

At that discussion in the hospital, all six surviving kids were in attendance. With four here and two still in their childhood town in California, it was pretty rare for all of them to be in the same place. It was a very difficult day for all of them standing around her hospital bed. Sweet Husband was the one to bring up memory care. Nobody liked the idea—certainly not Sweet Husband—but it was the only option at that point. She simply wasn’t safe without around the clock medical surveillance. 

We are fortunate that there is a great end-of-life facility very near all of our homes. It is quite small and home-y, with a busy and active common room, and private rooms where she could be comfortable. It was also in her budget. And they were very experienced with end of life dementia (even for the blind). That’s where she went.

It was a short and steep decline. The facility tried to engage her, but with all of her problems it simply didn’t work. She was there for about a month.

Then she was gone. Christmas Day, 2018.

Since She’s Been Gone

When Pop died (2016), I was in charge, but it was a fairly easy transition, because everything was in a Living Trust, with Mom as the other owner, so things moved seamlessly and we just moved on. This was my first personal encounter with closing an estate without a surviving spouse, so I was very interested in the process. Perhaps some of the things we went through, as the non-Executor sibling, will help you when you find yourself in this situation. As the primary caregiver, Sweet Husband’s oldest sister had all of the responsibility with helping the family move forward without it’s matriarch.

Not an enviable position. 

The struggle of closing an estate

We have talked on multiple occasions about getting everything situated as far in advance as possible, and my dear sister-in-law had the benefit of having access to everything decades in advance. While the bank accounts and investment accounts were relatively easy to close, the biggest hurdle was closing up and selling the house she hadn’t lived in for several years. Not having had the time or ability to do any of this in advance due to the constraints of caregiving for a blind dementia patient at the end of her life, nothing was done in advance. This caused the closing of the estate to be delayed by an additional year, but that pales in comparison to the volume of work it put on the three retired siblings at a time when they should have been mourning her loss. 

Keeping The Siblings Together

Big Brother Bob and I were just talking last night about what will happen when Mom dies. How do you keep the family together when the patriarch and the matriarch are both gone? How do you convince people who have their own lives that maintaining these sibling relationships is extremely important? That is a huge struggle for those of us doing The Job once The Job is over. It is important to maintain very clear channels of communication while you are closing the estate, and equally important to maintain some traditions that were common in your family as you grew up. Nobody has those memories except your siblings, and it’s sad when the death of a parent causes a rift or separation between the kids. 

How to celebrate holidays

This is probably when the loss of a parent is the most obvious—the empty chair at Thanksgiving. Add to that the fact that Darling Ellie died at 9 am on Christmas morning, and it makes for very bleak holidays to be sure! The first set of everything after your last parent dies is extremely difficult and very important. You need to make sure that you are honoring their memory by maintaining some of the traditions and habits that you had with them, while also creating new and fun traditions. This is especially true when you are still raising your own family—you can’t let the death of someone important steal all of the joy for the living.

That isn’t what they would want. 

Keeping The Memory Alive

As you are trying to close the estate, deal with your grief, and keep your family together, there is another thing you need to take into consideration: How do I keep their memory alive in a way that will be meaningful for years to come? 

My three kids were robbed of having a long relationship with Prince Louie—he died the year I was pregnant with RobberBaron, and LeeLee was only 4, and Sweet Stevie was not yet 2. We worked hard to create a place for him in their minds and hearts by sharing pictures, stories and memories of his interactions with them. It isn’t what we would have hoped for, but all my kids do feel close to him in their own way. By the time Pop died in 2016 and Darling Ellie in 2018, my kids had built strong and powerful relationships with them both, so they had their own stories and memories. 

What about the actual logistics of the situation? Let’s talk… 

Spending The Money

Yes, we got a check from Darling Ellie’s estate. It wasn’t a life-changing amount, but it was quite welcomed. We just stared at the check for long weeks, because it was the last gift from her we would ever receive, and we wanted to be good stewards of that gift.

If you inherit some money when The Job is through, that’s great! Use it wisely…but what does wisely mean to you? For us, we decided to break it into pieces, and use the pieces for things that we thought both of my in-laws would approve of. We wanted to design it so that we would be receiving this gift for years to come, and would know exactly how Prince Louie and Darling Ellie continued to touch our lives even in their absence.

We took a chunk of that money and invested it in a new account, so we can continue to watch it grow and mature until we need it in retirement. The rest of the money went into a separate fund for travel. It has, so far, funded two family vacations, and we make sure all of the kids know that the trips are from their Buono grandparents. This is how we honor them through our own needs and desires. 

The kids remember her

It’s pretty rare for any holiday to go by without our kids bringing up their grandparents. We have worked through the years to weave all four of the grandparents into our conversations and celebrations, so much that it is second nature for the kids. The best way they can remember their loved one is through shared stories and photos, so we have tried to be vigilant about that.

Our kids, in particular, have been extremely conscious of keeping relationships alive with their aunts and uncles now that both Buono grandparents are gone. They seem to have listened and taken to heart our feelings that nobody is truly gone as long as there is somebody who remembers them. They love spending time with the remaining family, and often bring up stories they’ve heard and want to hear again and again.  

What about the stuff?

Big Brother Bob came out of the bathroom the other morning during his visit, to show me a set of small turtles. “Were these Mom’s?” was followed closely by “Can I take them?” and I’m thrilled to give them to him as a remembrance.

It turned out that all three of my kids had very different memories of the retirement house in Boulder City, NV, and they wanted some small things from the house to remember their grandparents. Sounds great to me! I’ve got a small collection of Bingo daubers from my favorite Bingo players who have passed on that never fail to bring a smile to my face!

So I strongly recommend that before you close up that family home, you let absolutely everybody in to take one or two things that have significance to them. Even if they just take the things they think are worth the most money, it will be worth it to you in the long run to make sure everybody has something tangible to remember the loved one.  

What Did I Learn From All This?

As my sisters-in-law and I did The Job in our parallel lives, I had a front seat to their struggles, and tried to learn from them what to do and what to avoid with my own Mom. Here, in a simple list, are a few of the takeaways that have made The Job easier because of them:

• Continue to laugh and enjoy your loved one every second you can.
• Do The Job your own way. Don’t look for permission or validation.
• Build yourself a strong team, because doing The Job alone is the suckiest thing in the world.
• Remind yourself daily of your “Why”. Keep it close to your heart and in your mind.
• When it’s over, take a nice, long vacation. I’m thinking a cruise…

THANK YOU FOR READING THIS FAR

Wow! You made it! Thank you for reading about the end of life with dementia!

Hey, since you’re here! You may as well check out fall prevention, here, or read about Black Friday for the elderly, here! Or, check out our other topics here! Either way, I appreciate you!

Please leave a COMMENT about any tips you may have!! Or comment with YOUR story! Any dementia stories? Let me know!

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