If you are a caregiver to an Alzheimer patient then you know how stressful it can be. When you are with that person every day you see the constant changes in their personality and in their moods. Sometimes this happens not only daily, but hourly even minutes.
You can start off having a great day, but then any little thing; an off-handed comment or even a TV commercial can set off a whole host of different emotions or behaviors. It can be light and funny one minute and dark and ugly the next. This can quickly become frustrating for you and be extremely upsetting for them.
We try our very best to get through the day with as few of these emotional changes as possible.
How you handle it can make all of the difference in the world. A person who has Alzheimer’s disease can no longer express their feelings and opinions in the same way that you or I do. This often leaves them feeling more confused, scared, and frustrated. Imagine that you think of something very important and you want to get this idea across, but you have suddenly forgotten the words you want to say or even the point you were trying to get across. This happens for people who suffer from Alzheimer’s ALL OF THE TIME.
Alzheimer’s is like the kudzu that grows up the Appalachian mountainsides of eastern KY where momma was raised, (I’m sure it’s other places, but I just haven’t seen it). It spreads over everything in its path completely covering whole bushes or trees, even power lines are completely camouflaged by its dark green leaves and octopus-like vines. Those vines that slither into every crevice when you’re not looking and then before you know it the kudzu has changed the landscape that you are so familiar with into something unrecognizable to either of you.
The important thing to remember is that the patient is still the same person that you love. This disease is the new kid on the block or maybe even not so new. You have to find ways to deal with the disease, not the person. There are always meanings behind every word and every action and to them, it makes perfect sense.
I woke up one morning with all of the living tables stacked in front of the door. I was confused and later discovered that she had seen on the weather the night before that it was going to be windy. She was protecting the house from a storm even though I doubt it would have come through the front door, but to her, it might.
I’m used to being around momma 24 hours a day and I carefully weigh out every word or action as if each syllable were weighed by the pound. I find myself taking a deep breath every time someone speaks. I get nervous about what they will say, but even more, how she will take it. My jaw tenses up and my stomach starts boiling. I know it’s coming and it’s like a kick in the stomach every single time. They say the sign of insanity is to do the same thing over and over expecting a different outcome. I think all caregivers must be a little insane because we hope for a different outcome every single day.
My jaw tenses up and my stomach starts spinning faster than a brand new Dyson. I know it’s coming and it’s still like a kick in the stomach every single time. I’ve just become better at hiding it. They say the sign of insanity is to do the same thing over and over expecting a different outcome. I think all caregivers must be a little insane because we hope for a different outcome every single day.
I literally watch the words float across the room, become scattered, and then flop themselves down on her food-stained chest. I can tell right away if what she has heard (which is NEVER what was actually said) has been perceived. If she doesn’t understand what is being said or especially what is going on around her she gets this look that reminds me of my son the day he got lost in the shoe store.
I never want her to be scared. So I am always ready with an answer, sometimes any answer that quickly comes to mind. I’ve also come to love that look that says, “I love you. You take care of everything.” I know immediately when something is bothering her even though she will go to great lengths to hide it. I am her post it notes, her string on her finger, and her security blanket.
If you are a mother I’m sure you remember that age when your child hit the “Why?” stage. Mom is like that. She asks 500 questions a day. Most of the time it’s the same 5 questions but that’s beside the point. She’s grown a lot more dependent on me than she would allow herself to be in the early days, but that is expected. Now, I can’t be out of the room for any length of time or she comes looking for me. She’s like a bloodhound!
I used to cry and get upset every time my mother would say she wanted to move back to KY. Here I was trying to make a great home for us. Doing everything I could think of to make her happy and she still complained. I learned that I just had to get over that. Mom isn’t missing KY. She is missing the life that she lived in KY. She misses driving. That’s something that she associates with KY because she hasn’t driven since moving here. She misses her independence of coming and going whenever she pleased. She misses being in control. I would too so I can be empathetic instead of getting upset. Those days are over for her. She mentions KY once in a great while now but doesn’t talk much to us about moving back. I think she is finally resigned to her fate here in SC… or she could be planning her escape.
The only thing you can do is put your arms around them, tell them you love them, and that you’re never going to leave them. Does it work? Most of the time, sometimes I say things like “Are you really going to leave me?” which she always answers “No I wouldn’t leave you”. The point is, you cannot take the things that an Alzheimer patient says personally.They don’t understand that these words hurt you. Chances are if they thought they had hurt your feelings they would be beside devastated.They are just trying, in their own way, to get their feelings & thoughts across. It is our job as a caregiver to help them accomplish that.
This piece was previously published on this blog on March 2014, but I used the Revisionize plugin and between that and my updates it’s like a brand new post. I hope you’ve enjoyed it!