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!
I love how you pointed out that her missing KY is really about missing her old life and how things used to be. I’m sure it’s pretty much the same for most of our aging parents regardless of their health and that’s a great reminder so that we could be more sensitive to their needs and be more patient. What you’re doing is beyond challenging. I remember at some point my Grandma just stopped talking. She really couldn’t express herself anymore. It’s sad seeing that we lose them that way to this illness. But the reminder that this is not them, that this disease doesn’t define who they are is an important one to remember. Thank you, Rena.
It is so sad Joy and I know you miss your grandma so very much. I really do count myself as one of the lucky ones where my mom is concerned. I never have to worry if she is alright because I look her right in the eye and see for myself. It’s so much harder for long distance caregivers and even ones who don’t live with their loved ones.
I know how hard this must be on you. Your mom must feel very comfortable with you to ask you her questions and it’s so admirable that you are researching how best to respond and then sharing what you’ve learned and what you’re seeing work. Thanks for posting this.
Katy Kozee recently posted…Oprah’s Favorite Things: The Good, The Bad and The What?
Thank you so much, Katy and welcome to TDAC. Knowing what is happening to her is hard, taking care of her is a blessing. Thanks so much for commenting.
you inspire me Rena – and I am a little bit in awe of your patience and kindness to your mum. People so often become impatient or angry with those whose lives have been overtaken with Alzheimers. They are so busy mourning the loss of the person that they forget to appreciate the pieces that are still left – I love that you focus on those pieces xx
Leanne@crestingthehill recently posted…ticking stained glass off my bucket list
Ha! I used to be one of those impatient ones until I learned about Alzheimer’s. Think about it would you get impatient with someone who has brain cancer? Probably not, but in my mind it is basically the same exact thing. I get angry with Alzheimer’s but never her.
You have such a big heart, Rena. I always marvel at your ability to deal with your mom. She’s so lucky you’re able to be there for her, she would be very lost without you. On another note, love the new look and feel of your blog, it’s beautiful!
Claudia Schmidt recently posted…Remembering Grandma Schmidt
Thank you so much, Claudia! I am so happy you like the new look and I happen to know you have a pretty big heart yourself and what you do is SO important. It’s impossible to know how many lives you save with your message! I know you keep me on point about my mammograms!
Rena, you always put the human face on this dreadful condition. The patience. The understanding. Your tagline says it all. I have been sharing your blog with everyone I know who is performing a similar service to the one you give your mother. I know you are helping!
dltolley recently posted…Little Heroes
I can relate to it so much. Before my mom’s surgery, for ten years it went exactly like this. Now, since I know that it was partially due to the tumor, it helps. But back then I would take it personally and it would exhaust me, psychologically and physically. I know exactly what you’ve been through Rena.
xx Abby
Your words are very heartfelt and helpful to me as I try to support many friends dealing with this issue. I can only imagine how it is hard not to personalize some of the behaviors.
Ellen Dolgen recently posted…Is Alcohol Stirred with Menopause a Good Elixir?
You’re doing great and learning as you go – keep up the good work, you will never regret it <3
Susan Macaulay (@AmazingSusan) recently posted…actions speak louder than words x 10 with dementia care #Alzheimers #compassion #care #truth
Your patience and grace are always an inspiration even though I have never had to deal with this situation. Your mom is so blessed to have you but of course, it goes both ways. It’s a daily walk, isn’t it?
Carol Graham recently posted…What Kind of Friend Are You?
Your patience inspires me. Every day.
Karen @BakingInATornado recently posted…Blog With Friends: We Are Family
Thank you for sharing. I have an opposite situation with my mother, at 96, her mind is still in tact while her body fails making her feel less and less like she’s in control.
Jennifer recently posted…Time to Quit Smoking
You amaze me. Love the new look. Coincide with new feelings for your mother?
Sadly I relate to her feelings of dependence though I have nobody to be dependent on. When you don’t drive, it’s always frigging raining and the cab company owner treats you like family—the family he charges–it’s hard. And scary that I will become demented simply because life is too gray right now.
pia recently posted…Counting the ale bottles
I always appreciate your perspective! I am at a different (earlier) point in the journey than you but I can still relate. I am amazed at the things he perseverates about – a small change in routine – a pair of pants that doesn’t fit right – something that would be a passing detail to the rest of us.
Paula Kiger recently posted…Uber Wisdom
It is something that you definitely have to witness first hand isn’t it. The weirdest things can sometimes cause the biggest problems. Thanks so much Paula.
This is a perfect description of life with an Alzheimer’s patient. So well done, Rena. I think of you all the time when I’m getting exasperated with my mom. I ask myself “what would Rena do?” – and I always come around to being more patient and kind. Even though mom doesn’t have Alzheimer’s, being her full time care giver is challenging. But you inspire me every day!
Lana recently posted…Motivational Monday XXXII
Oh goodness “What would Rena do” could get you into a lot of trouble haha! Rena would lay on a beach drinking frozen strawberry marguritas while writing amazing fiction…of course, that’s only when I am asleep!
Hahahahahaha – I almost spit my water out when I read this! I’ll gladly join you on that beach any day!
Lana recently posted…Leopard And Lace And Project Runway
If we leave today we could really enjoy New Year’s!
Such a hard road, but you write about it with such grace.
Thanks you so very much Bonnie! I really appreciate it. Writing is what makes me a better person and I know a better caregiver!
You moved me to tears, Rena. You are a shining example of a good caregiver. Your mother is blessed to have you as her post-it! ♥
Corinne Rodrigues recently posted…Practise What Heals #MondayMusings
Aw thank you so very much Corinne! You move me to tears with your beautiful comments!
Dayum girl, I am just going to say it: you are a better person than I.
Kymberlyfunfit recently posted…The Perfect Getaway: The Oaks Spa in Ojai
I don’t think so! I have it on authority that you are a very good person with a huge heart! Thank you!
This is a truly touching post. I’ve never known anyone with Alzheimers so I didn’t know what to expect. I feel for you and your mother. Thank you for sharing how it is to have a loved one with Alzheimers. God bless.
Brenda Pace recently posted…The “Eyes” Have It – Admitting It Is the First Step
I hope you never have to experience it Brenda! Thank you so much!
So well said! What I love about you is that your heart and words are educating people who read this blog about the disease if they are not familiar. For those of us in the depths you are a source of comfort!
Haralee recently posted…I Love M.A.X
Thank you so much Haralee! I am trying to do just that. I want to take me and my story out of it and bring more solutions to people who need it.
All of this rings so true, Rena. As your posts always do!
Carol A Cassara recently posted…Everything does happen for a reason
Thanks so much Carol!
Your patience is just wonderful to read about. My grandmother also asked the same 5 questions scores of times a day and my mother was the person who bore the brunt of it. I guess for both you and my mom, it’s just a matter of doing without thinking of the burden, because neither of you would have it any other way!
Roshni recently posted…Making Indian sweets is a piece of cake!
Monitors and alerts can be a big help when someone has dementia and wandering is a concern. You can place a motion sensor in areas that will sound an alarm or a floor mat with an alarm that goes off when stepped on.
in home care recently posted…Howto Brainstorm Applying Bubbl.Us