A Grain of Salt - our family's fight with the long goodbye of Dementia

When a person with Dementia starts telling non-truths, how do you tell the difference between a straight lie and a skewed memory or perception?

It's been one of the harder things for me to swallow, the twisted and misdirected perception that can be a daily chore to sift through. Most parents teach their children that lying is wrong. So when an adult starts making untrue statements on a regular basis, trying to pass the information off as true or real, it can get frustrating as the listener/caregiver to constantly have sift though the comments to stay on top of what is real and what is not. (While I know there are other cases of this behavior out there, I am only looking at this from the perspective of dealing with this disease.)

The struggle can also become more stressful when your efforts are misread and the person with dementia starts laying accusation against you for treating them like a child or lying yourself, believing that they are still the independent functioning adult they remember themselves to be.

Reasoning does not always work. Redirecting is a common tactic used. Directly addressing it is never encouraged by any of the "professionals". Ignoring it may brush it aside for a time, but can eventually create other problems and feeling of resentment.

Sadly there is no one single fix for this, and every case can be a little different. But I have to applaud those warriors that wake up everyday and do it again, never giving up. After all, time is running out.

THE FRUIT AND VEGETABLE FIGHT: I’ve noticed that over time, “Susan” has been eating fewer and fewer fruits and vegetables. Unless they are fried or drowning in butter and sugar, she refuses them and says she doesn’t like them. This has been causing increasing health issues of course, starting with her gut health and bowel movements - or lack thereof. This has also triggered a vitamin and mineral deficiency in her system. While the doctors continue to add more supplements to her med routine, I’ve been looking for ways to sneak in more produce and less starches, carbs, sugars and processed foods.

Sometimes I try to prepare meals with just meat (grilled, baked, or pan cooked) and fresh/cooked fruits and veggies as sides, but I find she typically will take a serving of the produce, spread it across her plate to make it look like she ate it, then throws it in the trash claiming she full. “Susan” ends up wasting more food than all of the rest of us combined, which can be a little frustrating when your living on a tight budget. Other times I’ve set up meals with a roll or a pasta as one of the side dishes. For those meal, I’ve watched her completely bypass the produce and take as much of the higher carb foods as she can. And it does not matter how much or how little she eats, she will jump if anyone mentions desserts like cookies or ice cream, taking or requesting amounts enough for 2 or more people. And when she doesn’t like what we have planned for dinner, she offers to buy fast food, which is pretty often (but we have to go get it as she can no longer drive). Every time we turn down her offers of fast food, she becomes especially agitated and complains more about the food we prepare, refusing to eat anything but the “junk”, then sneaks out to the kitchen later for a stack of cookies.

*** Oh! The cookies! SIDENOTE: When she first moved in, she offered to pay some monies to help with bills due to her own usage. (ok…) I told “Susan” to talk to her son as I have nothing to do with anything financial with her. They worked out a fair deal, (less than any rent amount I myself have ever paid) and all of her bills and food are covered as well. (Ok…) She demands to have cookies on hand at all times. As of late, she is going through a whole package of cookies every week, and this is on top of any desserts that we are already serving. ***

So we have tried smoothies, various dishes, incorporating vegetable powders (dried and ground up veggies), fresh and cooked fruit and veggies, salads of all kinds… I am still looking for more ideas to get her to eat more produce to hopefully reduce the strain on her bowels and her deficiencies as well. So if you have any thoughts or ideas, I’d love the hear them, because we are still working on this.

Someone once said if you take care of someone with dementia you lose them more and more everyday. When they get the diagnosis, when they go through different stages, when they need treatment and when they pass away. This is called "ambigua loss".
There will be people who will scroll past this post because Dementia has not touched them. They may not know what it's like to have a loved one who has battled or is still battling dementia.
To raise awareness of this cruel disease, I would like my friends to put this on their page today.
Hold your finger on the post to copy and paste to your timeline.
A special thank you to anyone willing to put this on their timeline for Alzheimer Awareness! 💜

One day in April 2024, I received some texts from family members in regards to my own grandfather. At 88 yrs old, he had just come home from a stay in the ICU due to several infections, which had left him in a drastically declined state. Everyone immediately made arrangements to drive up to see him one last time. I told my husband, who called off of work to stay home so the kids and I could go say goodbye the next day. I set out “Susan’s” meds so my husband could give them to her in case we were not home in time and we left.

Our visit was good, though saddened by the reason behind it. My grandfather - an original engineer for Good Year’s electrical systems and for several of the earlier military tech that is the foundation of what is being used today - struggled for 3 hours to “teach me” the “legal way to write your birthdate.” He was so happy to see us, yet for some reason felt a driving need to “debate”, as he put it, birthdate formats. After an hour or so of him trying to recognize, understand and communicate where or if to use a “0” when indicating a single digit month, I was kinda grateful that “Susan” wasn’t progressed quite this far yet. but I had to wonder if she would be quite this mild tempered by that point, or would she continue to regress into her own “personality”?

When we arrived home later that evening, my husband informed me that his mom had notice that we girls were gone and commented that he shouldn’t have stayed home because she didn’t need anyone there. Although, for their lunch, she had needed him to open the lunch meat packaging that she wasn’t able to manage. LOL

Just an introduction: We are a small family of four. My husband is an only child who has never had a great relationship with his mother for many reasons. While I used to think his personal portrayal of her was skewed and biased - maybe exaggerated even - I have seen and experienced many of his claims myself. One of her strongest traits is that she needs to control everything and everyone around her and complain about it all in the process. (Keep this little detail in mind…!)

Several years ago, we and many others started noticing changes in her actions and conversations. For the purposes of these stories, we will call her "Susan". She stopped going out with friends, or would remove herself from her own friends while they were out together. She would do something that everyone, including herself, would recognize as not quite right or normal - then laughing tell everyone not to tell the kids (her son and myself). At first people laughed with her, but when they noticed this repeatedly trending behavior, they became concerned and started calling us.

It would start out as little things, like forgetting names of key family members, or not knowing where she was at, or neatly dividing up her order at a restaurant upon receiving it and then asking for a take home box immediately. She would wear two different shoes, lose a credit card somewhere then claim that it was just membership card and not a credit card (and not do anything about a lost credit card), or seemingly blow off doctor appointments with a variety of excuses from not feeling well to oversleeping to just being too busy. But when she started missing work appointments, mixing up her medications, moving funds and accusing others of stealing from her, and was so overwhelmed by the complexities of bills and taxes that she missed several big key tasks… we all knew that living alone was not going to be an option for her much longer. These did fall in line with her normal need to keep a tight control on everything. But according to her, she was fine, nothing was wrong and the rest of us were making things up.

Growing up, I watched as older family members slipped away into various stages of dementia before their passing. I experienced, from a family perspective, what may occur during those stages and what may be needed from family to help.

As both of my grandfathers also began demonstrating different aspects of dementia in their final years, I knew this could likely be something my children would have to attend to with myself one day. But I did not expect my mother-in-law to be an era that we would have to address.

Just for a little background: my only-child-husband and I had chosen to put ample space between our family and his mother. This decision was not made lightly, but was necessary to protect our young children and ourselves from abuses and her "personality".

Then 8 years ago we began to note changes in her behavior. At first we just assumed she was slowing down as she aged. But some things did not seem quite right, and when her friends, neighbors and extended family started calling us regularly to report on their own observations and concerns, we knew it wasn't just age.

We recognized certain patterns early on, but we also knew that she was still "too sound of mind" to require or even admit that she needed any intervention or any real help. So we made the decision to let her live on, as long as she could, on her own terms, until she reached a failing point that she could not come back from. That point of no return happened late one April night in 2021.

Purpose: We hope that in sharing our family's struggles and small successes, others can find comfort in knowing that they are not alone. We also hope to help showcase that there is no one single “sign” or checklist for dementia, and that it can present itself in a variety of ways that others (including doctors) may or may not be able to recognize. In sharing our real life experience of the day-to-day episodes and events that occur, we pray that one day this helps to encourage someone else who is fighting their own fight, feeling like they are alone in their battle, that no one else fully understands the strain that this has caused in theirs and their family’s lives. We are not here to judge or point fingers, just to help illustrate that this disease does not show itself in only one way - but it can be as unique as the people it affects. It’s not always the big things that can wear us out the most… often it’s the day in and day out little battles and the constant state of heightened awareness to maintain the vigilance that we now recognize as a necessity for the safety of everyone involved. It doesn’t always have to be hard, but sometimes it just is.
Some of these scenarios made us laugh, while others were frustrating, concerning or exhausting. I will keep posting as long as this person is still in our lives. Because each day is a new challenge… or adventure… depending. But we know that whether it’s a good day or a bad one, every instance may not be their true self and should be taken with a grain of salt.