4 Tips For Alzheimer’s Caregivers

Throughout our struggles, wins, and sometimes going back to the drawing board, I decided once my journey was over, I would share my experiences to help someone along the way.  While sharing my ideas with a friend, she asked why I was waiting until my journey ended.  Community is essential, and these tips could prove valuable to someone now!  Also, I might miss out on helpful advice from someone who shares in this journey.

So, I’m starting with the 4 tips I wish I had known about Alzheimer’s before I became a caregiver:

1. I wish I understood the stages of this disease:

Alzheimer’s disease has distinct stages, each with its own set of challenges. Here is an excellent visual from RUSH University showing the three stages of Alzheimer’s.

My mother-in-love was in the Middle to early Late Stage by the Doctor’s diagnosis.  I am in no position to argue, but I experienced that my mother-in-love was a very strong-willed, independent woman who wanted to go, go, go.  So she really didn’t fit into any of the above boxes, but it provided valuable tips for Alzheimer’s caregivers.  Instead of claiming defeat, my mother-in-love became my subject of study.  While navigating her getting used to me being around “all the time,” I studied her and tried to figure out how we could care for her best and keep her dignity intact while allowing her independence to flourish.  Which brings me to my next point!

2. Communication changes and….It’s okay to lie:

Communication becomes increasingly challenging as Alzheimer’s progresses.  I’ve had to adapt over time to use simple language.  In the beginning, when we would go to town, my mother-in-love would give me directions.  At first, it was spot on, and she did teach this old dog a few new tricks and shortcuts around town.  After some time, the directions slowed, and instead, she began asking me where we were going.  Instead of giving her a list, I had to break down our errands into bite-sized pieces.  I’ve learned to slow my speech, maintain eye contact, and give her time to respond.

One of my biggest personal obstacles to overcome was to be okay with lying.  I am not talking about lies that could be detrimental or endanger anyone.  But little white lies to help overcome the fears and agitation.  For example, when my mother-in-love stopped driving, she still believed and would tell me stories about all of her errands.  When we would leave for town, it would always spark the conversation about where her keys were and where her car was.  We always told her that her car was in the shop.  The why and how long it would be in the shop were lies, too, but it was easier than telling her she could no longer drive.  Today, I consider lying a way to create safety in her emotional environment.

3. Creating a Safe Environment:

Alzheimer’s patients often face difficulties in navigating their surroundings due to memory loss and disorientation. I had read so much about Alzheimer’s patients wandering off, so I had mentally prepared a checklist and had an action plan should my mother-in-love get to that point.  I guess I assumed that would be the next hurtle, but boy was I shocked to realize that I had other things in her environment that I needed to consider. For instance, one day I noticed she had cut her shin bone shaving. This came on the heels of noticing that she was cutting her clothes with scissors. That’s when I realized that her physical environment held more dangers than I had considered. We needed to simplify the house. This presented some bigger challenges, because as I had mentioned, my mother-in-love was aware of many things and could get agitated quickly with “her stuff.” I started with removing potential hazards, ensuring good lighting, and labeling essential areas. For us, doing things slowly seemed to help keep her comfortable so we prioritized what seemed the most dangerous first and then kept adding to the list as things came up. This sort of simplifying is a bit different and more involved as these are adults whom are used to carrying out most tasks independently.

In addition to my mother-in-love’s physical environment, we wanted to protect her mental environment the best we could. In considering this, we noticed that keeping daily routines helped with her sense of security and helped her feel more in control. I started with a printed paper on a clipboard with a simple schedule for the day on it. At first, she would go look at the clipboard throughout the day. This progressed to her carrying around the clipboard and her checking the schedule and reminding me of the time. After some months with this routine, I noticed that she would lay down the clipboard somewhere and when she could not find it immediately, it caused a bit of stress. As mentioned previously, it’s about adapting and overcoming challenges. Because I could see the stress, we attached a dry erase board to the wall located in a visible place close to an area that we frequently passed during the day.

4. Behaviors can change, and every day is different:

Alzheimer’s can lead to various behavioral changes, including aggression, agitation, crying, and sadness.  Adapt and overcome became my new motto as I navigated the changes we saw in my mother-in-love.  One day would be great, and the next would leave me in tears.  Nothing is worse than not being able to comfort someone.  Some days, I learned that sitting there holding hands all day and not doing much was a win for her.  Understanding why something was going on was frustrating, but I did document everything.  I learned this trick with my first daughter when her pediatrician wanted me to keep a journal that kept track of her food, sleep, water, etc.  I didn’t understand, but I started noticing patterns and triggers with time.  By identifying triggers and addressing them, we can help manage challenging situations.  

My mother-in-love has lived in this area her whole life, so it seems that she knows the whole town. In fact, I could not take her anywhere without someone calling out her name. One Monday after lunch I noticed that she was a little more upset than usual. Nothing had stuck out to me as when the shift occurred. I wrote down all I could remember about our day up to that point. The following Monday, the same thing. The shift in her mood was almost at the exact same time. Again, I wrote down everything about our day up to that point down to the people we interacted with. Lol and behold it happened again the next Monday. At this point, I started looking for patterns. This is where the journal came in so handy. Just like us, another group of people were creatures of habit and ate at the same establishment every Monday. One gentlemen in the group was my mother-in-love’s old boss/friend from many years ago, so naturally she wanted to talk to him. It was shortly after our interactions that I pinpointed her mood would change. It wasn’t necessarily a bad thing but something of note. The next week, I paid even closer attention and realized that there was another person at the table that she would talk to and they were awfully nice, but when we left she would ask me who it was. The next week I made it a point to introduce myself to this person so I could get their name. Again, when we left my mother-in-love asked me who it was. I said oh that was so and so. No mood change that day. It seems so simple and I am not sure why, but I suspect knowing but not knowing frustrated her and that caused the mood shift. Because I now their name, I could let her know and she seemed okay with that.

Bonus Tip

As I’ve mentioned previously, my mother-in-love had spent her whole life in our area and knew everybody it seemed. When I started caring for her, the majority of everyone close knew that she had Alzheimer’s. But occasionally, we would run into someone that did not know or just have a moment in public that I wish I could let people know, while keeping her dignity in tact.

We would frequent a restaurant that was owned by one of my mother-in-love’s best friends. She would always ask if her friend was there when we ordered food. Then, we would go down the buffet line to get our side and she would ask again if her friend was there. The young employees did not understand and where kind were confused. That’s when I decided to create a little card that I could discretely hand someone to let them know what was going on.

I gave this card to the employee checking us out the following week. She was always kind before, but understanding seemed to make her even more kind and tolerable to the repeated questions. I keep the cards handy and have handed out a few a week. Because we are pretty consistent with our routine, it was not long before most were aware and now understood what was going on.

Here’s a link to the card I created. I just printed it on Avery business card templates. You could even change the wording should you have something specific that you are dealing with.

That wraps up the top four tips I wish I would have known before I started this journey. How about you? What do you wish you would have known? I would love to hear about you and your experiences with Alzheimer’s. I firmly believe that we need a strong community in our journey; as sometimes, our journey becomes someone else’s survival guide.