So, Pat, What’s Your Plan?

If I tell you I don’t have one, you’d probably be surprised.

If I tell you I’ve got it set in stone, you’d think I was crazy.

If I tell you I’ve got some ideas, that you would believe.

My answer is “D” – All of the above.

I’m absolutely no different from anyone else of my age—hoping for the best, guardedly planning for the worst, and expecting things to fall somewhere in between. You might think because of The Job that I would have things all figured out, but being the Mayor of Crazytown is a title I only carry in my lifelong career as caregiver. It doesn’t really translate to my own future in the boundaries of Crazytown. 

But, in The Job, I have seen quite a bit. Actually, what I’ve seen with my eyes is only a fraction of my knowledge, since I’ve been privileged to be the friend and confidante of a number of caregivers, so I’ve witnessed first hand their struggles and successes. 

The Four Examples My Kids Have Seen

My kids are extremely lucky in so many ways, including having all four grandparents in their lives. Both of our sets of parents were married well over 50 years, having seven and five kids each, our parents got to see the adults their children became. They were also privileged to decline and die in ways that suited their desires. Yeah…my kids have seen a lot.

Grandpa

Robber Baron never got to meet Sweet Husband’s dad, who died while I was pregnant with him. With LeeLee and Sweet Steve four and two years old respectively, they have no memory of this spectacular man. Since we lived two towns away, we were able to see him often through his decline from lung cancer. He deteriorated in his own home, with his loving wife and daughters catering to his every whim. He died after a long decline, and a brief stay in the hospital. This was my first experience with caregiving, and we have shared many stories with the kids about how comfortable and relaxed his final days were, thanks to the women in his life tending to him during this difficult ending.

Pop Pop

You know very intimately the stories about Pop’s illnesses and ultimate death in our home. Looking at it from our kids’ perspective, they were witness to every twist and turn of his care, and the toll it took on me and their Granma. I don’t know what would have happened if Pop hadn’t declined so quickly near the end—I can’t imagine a long period of time with him as debilitated as he was. The kids were able to see firsthand how I managed everything from doctor’s appointments to financial matters. They walked in and out of the room as Pop and I discussed sensitive medical and financial matters, and were able to participate in his care to whatever extent they wanted. When he died, the kids were 22, 20, and 18, and Pop had lived here for almost a decade before his death.

Grandma

Passing just a few years ago, the kids had the opportunity to watch the decline of Sweet Husband’s mother from a further distance away, despite the fact that she lived near our house. The kids had very little contact with their Grandma as she declined, but knew the decisions her daughters were making in her care. Keeping her home until the very end, when she went to a Memory Care facility for mere weeks, they worked very hard to care for her in their home. The stresses and pressures of caring for a terminal, end-stage dementia patient with no home health or hospice care was a model my kids were able to view from afar. It was a model I do not want our kids to copy.

Granma

Now my kids are living through the severe stage of dementia with Granma living in a Memory Care facility. It was Sweet Steve, the only kid who lived home at the time, who bore the brunt of Granma’s personality shift as things started to decline. She accused him of made-up crimes, and made him the focus of some of her anger and frustration. All three kids watched this decline with horror, as their beloved Granma, who had lived with them, cared for them, cooked and cleaned for them, became someone they didn’t recognize. They watched me and Sweet Husband work tirelessly to make a safe home for her, foregoing our own comfort and conveniences in our efforts to keep her home and satisfied. They watched me teeter on the edge for quite some time, and watched my tears when I finally recognized it was time for her to have full-time professional care. 

Care Until A Difficult End

Through these four models, my kids have gotten to see several of their grandparents until their death at home. Both of the grandfathers were extremely smart and clever men, who maintained their sharp wit and cool logic until the very end. My last conversation with Grandpa was him telling me not to change for anybody—words I’ve lived with in the 25 years since. The last days with my father are among my favorite, when we shared final instructions and professions of love. Keeping people home near the end allows for these types of interactions in the relaxed environment of home, surrounded by beloved people and objects. It’s a lovely way to pass.

If the person passes quickly and quietly.

My children have also seen the ravages of caring for someone with a mentally debilitating disease. There aren’t any deep conversations and proclamations of love from Granma anymore. Some days, she doesn’t even recognize me when I first walk in. When you compare that to the calm, bedside discussions I had with Pop near the end, you can see that caring for someone through this type of ending is nothing short of torture. 

Do I really want my kids to have to change the locks and put video cameras all over the house so I don’t walk out? Do I want them to have to sleep in a chair next to me so I don’t fall when I get up in the middle of the night?

Do I want them on the receiving end of my anger and frustration when nothing makes sense? 

Do you?

Care Until A Logical Change

Granma is the only model the kids have for moving someone into a facility for an extended period of time. Mom has been in The Facility for about 18 months now, and there certainly doesn’t seem to be any end in sight—she is the most incredibly healthy 93 year old on earth. She will, undoubtedly, see dementia through to it’s natural, ugly, devastating end.

But it won’t be in my house.

My kids visit Granma on their own terms, at their own time, for as long as they see fit. They are not bound by guilt or obligation or anything else with regards to seeing her. When they visit, they can make an almost immediate decision about what type of day she is having, which Granma she happens to be on that day, and can adjust their visit to suit her personality. 

They watched me agonize over moving her to The Facility. But we included them in some of the discussions about what our “rules” were, and the “line in the sand” we wouldn’t cross with regards to her health and safety. We told them when she crossed that line once, then a second time. And they helped us move her in. 

They were as much a part of the logical shift to memory care as we could make them, without them having to feel the heavy weight of the final responsibility that I had. It was my name on those admissions documents. I own that. 

What do I tell them?

So, what now? We have involved them as much as possible in the plans and decisions for the two grandparents who lived in their house. We made sure that while they enjoyed the benefits of live-in grandparents, they had as little of the responsibility as possible. I don’t kid myself that my children didn’t feel any responsibility. I know they did. But we tried to minimize it as much as possible, and let them focus on building that strong relationship that has carried them through their lives and some sticky situations through the years. 

Robber Baron just quoted Pop the other day, and Pop has been dead for seven years. So, yeah, you will never convince me it was wrong to have my parents here as long as I possibly could.

But, the question remains: What do I tell my own kids?

I tell them exactly, verbatim, what my parents told me: “Live your life! Build your own family!” And we mean it. 

We don’t want our kids to feel burdened with our care in their adult years. It isn’t a requirement, or their responsibility, or their obligation. At all.

Is it something one, or more, of them may feel called to do? Yeah, I think so. They have said different things through the years, and made different comments from time to time, that indicate that they do have these thoughts, and might have an idea of what they will do if the situation presents itself.

But, everyone who does The Job knows how easy it is for people to say things, and how hard it is for people to follow through when the shit hits the fan. 

It’s not their responsibility.   

What do they actually hear?

I wish I knew. 

I wasn’t raised with guilt, and I don’t respond to guilt. That is one quality I sincerely hope all three of them have inherited. Whatever they hear, it should never be tinged with guilt. 

What’s our plan?

We have the exact same plan as every other late-50’s person you will ever meet: We plan to stay as healthy as possible for as long as possible, and never become a burden to our loved ones. 

Beyond that, our master plan is to have enough money so that our kids have choices. The incredible costs of care for the elderly are absolutely criminal, and frankly I can’t imagine how people are affording The Facility mom lives in. That is our only goal: To have enough money set aside so that we have choices. 

Is everything in order?

Sure it is. Maybe. Kind of. Well, we’re thinking about it.

How can everything be in order when we can’t predict the future? Will Sweet Husband die too young like his dad, or will I have the longevity in Mom’s side of the family? Will dementia hit either one of us—it’s on both sides—or will we get hit by a truck tomorrow. 

So, like you, we will continue to eat our greens and walk 30 minutes a day. We will shake that Magic 8 Ball every day to see if we get “All signs point to yes” or “Better luck next time”.

In the meantime…for my kids who are diligent readers of my musings…

“Live your life!” 

THANK YOU FOR READING THIS FAR!!!

Wow! You made it! Thank you for reading about the next generation of eldercare!

Hey, since you’re here! You may as well check out traveling sick, here, or if you’ve read that, check out how to talk to your siblings, here! Or maybe you want to hear more about Pop, 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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