I get questions…

I’m very humbled by the people who email me from this blog. Not only do I get some very interesting comments and suggestions for future topics, but I get very heartfelt questions from readers about how I have handled some situations.

Here are some of the more recent email questions I have fielded, and my responses. Hopefully something on this list will help each of you individually!

Who Do You Rely On?

Well, I’m going to answer this email in two ways. The real answer to this question is that I rely solely on myself, my common sense, and my understanding of the disease I am dealing with. I have to be able to trust my instincts, and my instincts need to be sharp. There can be situations where I need to respond instantly that will change the course of Mom’s life, and there are other times when I can spend time assessing a situation before rendering a decision. I rely on my experience as a leader, and I always lean on my unconditional love for my parents.

But, I have an amazing support team. I’ve written about them over various blogs, and you might even know some of them by name…or nickname. If you do not have the incredible fortune I have to be married to an absolutely fantastic spouse, I don’t know what to advise you. Sweet Husband is the first contact for everything in my life, and you need somebody who is your “number one” go-to 24/7. Now that my “kids” are all independent adults, I am forging a new relationship with them in which we support each other as humans, and that has been hugely helpful.

I couldn’t get through the days, though, without Bestie Boo and my other close friends. When I need a funny text or a break from the daily grind, I’ve got my small, close circle who are available at all times. I wouldn’t want to overburden these people with doing the mundane—and often downright gross—things that I have to take care of, but when I need a mental, emotional or physical break, it’s my friends I go to.

Why Do You Do It?

This email is such an easy answer for me: I do it because they did it for me. 

In retrospect, there are things in my upbringing that I do not agree with, and there are definitely things Sweet Husband and I swore we wouldn’t do with our children, but overall, I was loved and cared for as a child. My parents worked hard to provide for me the best life they could, supporting me in things as best they could. They didn’t understand me a lot of the time, because they had no frame of reference for college or some decisions I faced, but I know they were doing the best they could.

I am, quite simply, giving back. Maybe it isn’t always easy, but I freely admit that, growing up, I was RARELY easy!

What If Your Mom Won’t Get Dressed?

This question could very easily be open ended, because on any given day, or any given hour, she can refuse to do just about anything. I’ve addressed this in a previous blog, too, because it is an extremely common—almost guaranteed—symptom of dementia to become belligerent and noncompliant. So buckle up, Boo Boo, this one is coming for you.

In those instances, I go back to the idea of what is really “required” at this stage of Mom’s life, and in reality, that list is quite small. The other day when I entered the facility, she had on a long sleeved shirt, with a polo over that, a fleece vest over that, wrapped in a sheet for a blanket. It wasn’t hurting anybody, so when she refused to let me get her a more appropriate outfit, I just let it go. Any refusal is always weighed against her health and safety, so most things I can let slide at this point. One thing I am quite vigilant about—and will press the issue with her—is footwear. She hasn’t had a second fall in four years now, and I intend to keep it that way, so I always make sure she has on socks and footwear with a good sole. 

How Can I Make My Mom Remember?

The medical answer to this email is that you just can’t. That brain is dying slowly, and taking with it memory after memory until your loved one will be an empty shell of what they once were.

But…I’ve got my tricks that work with Mom so that we can still walk down memory lane together and remember different things that we share. Here are some tips to keep some memories alive:

• Bring props – showing Mom pictures or souvenirs has been fantastic for helping her remember different people and places
• Go really far back – because for whatever reason the older memories are still intact longer than the current ones. We’ve gone over her childhood apartments multiple times, believe me!
• Talk about the same things repeatedly – I will review the same story or trip with her every day for a week, and that seems to help it stay in her short-term memory
• Have reasonable expectations – I am happy with whatever memories I can dredge out of her, so I don’t get mad if she doesn’t remember things exactly as they happened
• Don’t give up – just because she didn’t remember yesterday doesn’t mean I can’t coax it out of her today, so keep trying!

Were You Ready To Say Goodbye To Pop?

Yup.

Is that a surprising answer for you? Does that sound heartless or cold? 

Pop was in physical decline for years that became more and more painful and debilitating to him, robbing him of his independence and his dignity. He and I had countless conversations over the years about what I should do, and what he would want, if that should happen to him, so I felt well-equipped to handle what was happening.

Don’t get me wrong: It sucked. I miss him every day. I’d give anything for another afternoon with him on the couch going over the family finances. 

But we had the time to close our book. We had time to review everything that was important to him, and he answered every question I could think of. 

Then, in peace and without pain, he left.

Now, ask me if I’m ready to say goodbye to Mom!

That one is much harder, because we have so many unfinished conversations. Dementia has robbed us of the peaceful and loving ending that I had with Pop. Losing little pieces of herself over time has made her completely dependent on me in a way Pop never was, and I have had to become the parent of a toddler, whereas with Pop I was a partner in his healthcare. 

So now I stalk the lucid days. Whenever Mom has a glimmer of her former self, a hint of her previous personality or humor, I pounce on it with both feet and try to have the important conversations very quickly. I shower her with love and words of affirmation when she can understand me. Until the cloud comes back over her eyes.

Pop was ready to go, so it was different. Mom is being stolen from me, so it is a loss.

Isn’t Sweet Husband Sick Of You Being The Mayor?

I recently had a conversation with a good friend about the difference between my parents being a “burden” or a “blessing”. Having done this job for many years, I firmly believe The Job is equal parts of both. I raised a family while doing The Job, kept my marriage strong and healthy, and maintained a career. It was never easy, but it was always worth it. 

Over the many years, I am absolutely positive that there were times when Sweet Husband, and my three kids, were resentful or angry of the time and energy The Job took from me. There were assemblies I missed, vacations we canceled, dinners out that never happened and sleepless nights I spent in hospitals. 

Sweet Husband has never complained. Nor have my children. They all have embraced the “blessing” of the situation—being thankful for having grandparents around, and appreciating the long dinners around the table when we laughed and laughed. To the very best of my ability, I have absorbed the “burdens” of the situation, keeping them as far from the discomfort and inconvenience that I could. 

Being The Mayor has been a part of my personality and DNA all of my life. It’s the only “me” they know. So, no, they’ve never been sick of me. 

Thank You

Thanks for sticking with me this far in my email responses! Hopefully, something I’ve covered will be useful to you. If you think of anything else, please email me at ppilatbuono@gmail.com, or leave a comment and I’ll try to answer you.

In the meantime, keep being awesome! It’s a tough job, but you (and I) are doing great!

THANK YOU FOR READING THIS FAR!!!

Wow! You made it! Thank you for reading about when you email me!

Hey, since you’re here! You may as well check out Part 1, here, or if you’ve read that, check out more dementia problems, 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!

Please, feel free to contact me or leave a COMMENT with anything you would like to hear more about! Or reach out with any unrelated questions, comments, concerns, or random outbursts of excitement by clicking here.

Oh! And don’t forget to check out my video series by CLICKING HERE!!!