When to Push for Answers

This post title is pretty straight forward. It can be difficult to know when to start pushing the Primary Care Physician and the health team for a diagnosis, scans, and tests. Honestly, asking for tests and an official diagnosis is one of the hardest things to ask for, primarily because a diagnosis is a point of no return that no one really wants. No one wants their loved one to have a diagnosis of dementia or Alzheimer's, but it is necessary for care management.

If you are like me, you are giving grace whenever possible for your loved one, even when they are taking their anger out on you. You, like myself, understand that they are no longer themselves, regardless of how much they are attempting to 'prove' that they are "just fine." This understanding is a key in caregiving because of the grace that you are giving through your understanding. However, at some point, they are a danger to themselves, even with the best intentions. And sometimes their anger transfers through you onto your most treasured people and biggest supporters (other family members and close friends), and you do not want that, either.

When a diagnosis is on the table, a sense of relief can be felt. A weight is lifted off of your shoulders because you are no longer carrying the weight alone. Even if you were not completely alone, it is a relief to have your observations and concerns validated and verified. It is a weight off.

When is the right time to push for answers, though?

Each person is different, and everyone has different base lines. However, from experience, it is when they are no longer able to retain information and become increasingly impulsive. They take minor conversations that contain banter and light jokes far more extreme than they used to. They do not remember phone conversations from the night before, not even twelve hours later. They put down a document that you just discussed, pick it up two minutes later, and you are again going over the same information a second or third time within twenty minutes. They lose their house keys repeatedly or claim that their house keys suddenly no longer work in the lock.

My top number indicators, though, for two relatives now is their ability to remember how to break or cut and butter a dinner roll and how they no longer remember how to use their cell phones.

Those two are top indicators because the cell phone was the first major loss in cognitive ability. Ironically, the cell phone was also the one item used every single day by both of my family members for whom I cared and am caregiving, until they began claiming that "it does not work anymore." There was nothing wrong with the cell phones.

As for the dinner roll, that was unexpected. The person I am currently caring for taught me how to use proper table manners and was very strict with how to properly eat, especially when it came to the details that include how to break bread and butter a roll. It was remarkable and a huge indicator to a cognitive decline when they suddenly could no longer remember how to do that. We watched them take their fork and begin jabbing it into their dinner roll and trying to figure out how to get butter in the center while simultaneously smashing the roll in their hand. Watching this when you are not expecting it is devastating. For me, it was deja vu, since my dad had done the exact same thing. Both resorted to just eating a spoonful of butter with a mouthful of bread because they could not figure out how to put butter on the roll anymore. This, while minor, occurred three years ago now, and it was a sign of things to come. So I use the dinner roll as an indicator of minor cognitive decline at the very beginning. It is important to remember that this is subjective to my family and culture.

What will work for your personal indicators that something is no longer right will be subjective and personal to the lifestyle of your own family and culture.

Another issue is how to explain to the individual how to correct their behavior. To them, it is all normal, even though it is clearly not.

I am finding that attempting to explain what is happening just turns everything into arguments. I no longer attempt to help with meal planning or diet; I just buy the foods that are asked for. Their diet has reverted back to what it was previously, before their doctors had requested a change for a low cholesterol, low salt, and low sugar diet. It is irrelevant to continue to spend time trying to help them improve their diet when they no longer remember the health issues that they were addressing.

When I am called and asked about where an item is located in their house, which I do not know the answer to anyway because it is not my house, they are usually calling because they believe someone else (me) moved that particular item without their knowledge. They do not remember that they are the only person using it. When I ask where they last remember it, they bring up a situation from years prior! There is no short-term memory. Period.

When you find yourself in situations where their personality has completely changed to that of anger, confusion, defensiveness with simple and innocent questions, and more anger, bring this up with their doctor. Yes, it will make your loved one angry with you, but help is needed.

More importantly, you need support from their health care professionals because they cannot do this for themselves and will deflect everything possible.

Remind yourself that they are not themselves, this is not their fault, and you are doing the best thing for them by asking for testing and a diagnosis. A diagnosis can unlock additional help and support. While no one wants to be diagnosed with dementia, it is important when you are consistently and constantly seeing the signs of it and experiencing the effects of it.

Based off of the research, there should be a reliably effective blood test within the next two years. Alzheimer's has an associated rise of proteins in the blood, remarkedly beta-amyloid and tau, that cause damage. While I am not going to go into full scientific detail (which I get enthusiastic about and love to talk about, mind you!), I will say that it would be wise to ask for a radionuclide-tagged PET scan when discussing tests and scans for a diagnosis. The clumping of proteins in the brain is a major indicator of dementia because the clumping damages and shuts down the brain processes in the neocortex. Sorry, I did get a little enthusiastic about explaining the science, but I love neurobiology and, well, biology and our biological processes.

A great read was just published yesterday, July 29, 2024, in HEALTH by Mike McRae, titled This New Blood Test Identifies Alzheimer's Memory Loss with 90% Accuracy. Click the title to go to the link. It goes into more detail than the few sentences I just wrote after reading it. I thought this was worth sharing, especially since non-invasive and inexpensive ways to diagnose a person are possible, effective, and needed!

While on this caregiving journey, remember that you are not alone. Do not hold or transfer their anger to anyone you hold dearest. And remember to give yourself as much grace as you give your loved one!

Take care!