Trust the Process

Perhaps you are at the point where you have had to take interventions. Too much has happened that can no longer be ignored or dismissed. It is no longer safe to provide excuses for their lapses in memory and unsafe actions, and now the next steps need to be taken.

The first step is to talk with the primary care physician. They need to know what is going on. They will also refer you to the next steps, which is to be evaluated and talk with a designated social worker. If you are lucky, this can happen all in the same day. Sometimes, social workers are in the same office as the primary physicians, and you can meet with one as soon as you are finished with your primary care physician visit.

Be prepared for anger and denial. No one likes to be called out for their actions, especially when they feel as though you are making them up. It is crazy how they are thankful for your presence during the their times of crisis; but as soon as you start openly talking about it with their doctors, in front of them, they become angry, dismissive, and attempt to deflect the topic of conversation. They literally do not want to talk about what they have done because, in their mind, they did not do that.

They completely deny it happened, stating that they did not get lost or that happened when they first moved to the area; yet, they were grateful that you were there to guide them home when they forgot how to drive home just a few months ago, when you followed that gut instinct to stay with them. They are grateful when you go over the same paperwork multiple times, since they forget what is written as soon as they put it down, only to pick it up two minutes later. They are grateful that you have the patience to sit with them for hours to help them understand because the capacity for reading comprehension is gone; and they have no idea what the words mean anymore, but they will vehemently deny any of this occurred when you bring this up with their doctors and state that they are completely independent and do this all by themselves, alone.

Do not get angry. Repeat: Do. Not. Get. Angry.

Try to see it through the lens of humor. They are literally behaving like a petulant child. They are regressing. They will literally say anything to get out of this situation. Why? Because, in their minds, there is no problem. They literally do not remember it.

I know that it feels like you are treading water. If you make them upset, they still have enough capacity to cut you out and off from them, which makes it impossible to help them. Even with the best of intentions, you have to be careful, remain calm, and try your best to navigate this phase because they will anger very easily.

You honestly will have no idea what will make them angry. You also have no idea what they will take too seriously or not remember. I have learned that joking that used to be normal routine will suddenly no longer be acceptable. One wrong word makes them anxious. One casual statement will make them paranoid to the point of extreme measures and irrational actions. And through all of this, nothing makes sense to you or the rest of your family.

And attempting to reconcile and understand why they did something due to something you light-heartedly stated will only lead to circles.

As an example, I stated that I had said something that triggered an overreaction. More specifically, in a casual conversation in front of them, I said that our neighborhood was safe and that we passed their house every day in our coming and going from our own home. This apparently triggered paranoia and irrational thoughts, completely unbeknownst to us. Suddenly, we are cut out and deemed unwanted. After months of letting this behavior go, not without observation that fit within their new parameters of interaction, action was needed when it was clear that nothing was improving. This was brought up to their doctors.

Every time they were asked about this behavior and their thought process, a different answer was given every time. They do not want to be a bother. They do not feel as though extra assistance is necessary. They were told they should make these changes; they do not remember who told them or why, so they say a name that makes sense to them but no one else. At some point, you will get the truth, even if it is just a small nugget. For me, it was that they thought I was IN their house every day when I had stated that we pass by on a daily basis. Not only that, they thought I was moving things around behind their back and taking things.

When asked why it is not okay for us to drive and walk around the neighborhood that we both live in, suddenly they are upset that we do not stop and check in on them every day. How confusing it must be to be inside their mind! They do not want us in their house due to a random comment made in the middle of a casual conversation that resulted in a paramount behaviors of paranoia, anxiety, and irrational thoughts, yet they are upset that we do not stop over every day to visit with them inside their house?

At the same time, they believe that we are living in a similar way to them. I cannot tell you how many times I get asked if I need to go take a nap, just because they are exhausted from doing one thing and need a nap. This is usually why I try to delegate their needs, since I know they only have energy for one thing a day. It does bother me when they expend all their energy on cleaning or a task, rather on something they would actually enjoy. However, they were raised to clean, so cleaning is usually what they choose to do, rather than anything that would assist or slow down their memory loss. The idea that a clean home that looks unlived in as more important than enjoying life will always boggle my mind. So the one thing they do a day is cleaning, and the rest of the day is used for resting on the couch and watching television.

I usually do the shopping because they are usually too tired. Now, starting this summer, they no longer remember how to shop, find what they were shopping for using the store's organization, or how to go through the payment process at check out. Whenever I have taken my loved one shopping, they did not know how to pay. The cashiers usually have to walk my loved one through the process, step-by-step, and help them find acceptable payment out of their own wallet. Talk about a face palm when my loved one has to ask if the insurance card is "what I need?"!

Bring these topics up with their doctors. They need to know that your loved one can only accomplish one task a day before their energy is depleted for the day. They need to know that your loved one is displaying paranoia, anxiety, and major lapses in memory and ability. They need to know if your loved one is a danger to society and themselves if allowed to drive. They need to know that you need additional support, resources, and help with making sure your loved one is living safely.

Once their doctors know what is going on in your and your loved one's daily lives, you can begin the process of receiving more help.

This starts with evaluations. Sometimes, scans will be necessary. They are attempting to rule out other cognitive conditions and diseases that mimic Alzheimer's, because the diagnosis of Alzheimer's and dementia is life-changing.

You will make an appointment to see a panel of doctors and psychiatrists who specialize in geriatrics. This will be a half day of interviews and discussions. At the end of this appointment, you will make two more appointments: for the final meeting for results and for another specialist to visit your loved one's home to determine how safe the home is to determine if it is safe to allow your loved one to remain living at home. They will also talk to you throughout the home evaluation to give a list of updates to allow your loved one to live at home, if they believe that is the best case. Be sure to write those details down as they are spoken to you and do your best to make sure they are completed. I understand that not everyone lives in a safe way or is in a position to stay living at home; this will be determined during this evaluation.

It is wise to note that the home evaluation will cause stress and anxiety for your loved one. Please do your best to remain calm, upbeat, and positive about it. Answer their questions and try to ease that paranoia. My loved one was especially worried about cleanliness, so they spent the week cleaning and putting items away that are usually in piles all over. Trust the home evaluator because they will catch on to the focus of your loved one and how they typically live through your loved one's words.

An additional important note: This process can take months. We have been patiently going through this process all summer. They typically try to make the three main appointments occur each week, notably in the medical system in our area, so that you can have results within three weeks. Also, they will put in a referral for additional help and support for you, the caregiver, at the initial meeting with the social worker or even before, if they know what you are going through. We are still waiting to hear from the case management team that assists in our area.

For Northeast Ohio, Family Pride is a nonprofit that assists families with case management. For cases involving the elderly with mental health conditions, they work with the family to mediate and come to agreeable situations that create communication and involve their active mediation. They also would be able to bring in additional services for your loved one, such as day-time caregivers and house cleaners. The main point of all of this is to protect your loved one and allow them to live at home safely.

If you feel as though your loved one is making decisions that are not healthy or a complete deviation from their normal thought processes, behaviors, and actions, then please speak to their primary care physician about what you have been experiencing and get this process of evaluation rolling.

As much as no one wants a diagnosis, we need the resources that exist on the other side of these evaluations to help our loved ones.