By Danielle Glaze
My husband, R, and I grew up together. Our families were extremely close, to the point where his mother, Em, became like a second mother to my brother and me – sharing everything she did with her kids with us and scolding my brother and I as though we were her own children. Long story short, R and I got married and over the years our role as children have evolved into something more. We became partners in moving into and helping to maintain R’s childhood home, being a listening ear to his parents when needed, and assisting them with adjusting to life as Em’s health declined.
I spend a lot of time with Em and I had initially noticed subtle changes in her ability to remember names of people she knew well and places she’d been. We brushed it off as her being tired, and a bit overworked. We all know that sometimes relationships aren’t always perfectly balanced in the way work in the home is distributed. There’s usually one person that takes on the role as the binding agent… the “glue” that holds everyone together. Em was that glue, but she was not as quick witted as she used to be and her shoes were never where she thought she left them.
As time has progressed, irrational fears have taken hold. She may run down the stairs in a panic asking if anyone else has been in the house. Streets that were once familiar feel like foreign places to her. Her memory of the past is sometimes extremely accurate and vivid as though they happened yesterday. In fact, most times she feels like it did. Other times, the past and present collide creating hilarious sounding worlds that an outside person may think is nuts, but if you listen closely you’ll realize that it is a mishmash of things that happened a week ago mixed with something she saw today on a re-run of Blue Bloods.
One of the most heartbreaking parts of Alzheimer’s is the fact that she is sometimes forced to relive poignant moments in her life like the death of her mother. That pain is doubled by the Lewy Body Disease that causes her to hallucinate when she is distressed. In Em’s mind, her mother will “check” on her to see if she’s okay or hurry past and look back at Em on her way out of the door. But this visual sometimes conflicts with her memory of the loss of her mother, so she’ll come down and ask where momma is or if her mother is gone.
Explaining Covid-19 to a parent with Alzheimer’s can sometimes feel like an impossible task. Sometimes Em’s understanding of what is happening in the world is somewhat clear and other times it’s like explaining physics to a three year old. Lots of “Why?” and “How do you know?” and “Oh yes! I knew that! That man told me… you know. The guy. “
Her diagnosis in the midst of a pandemic was a lot to take in. We all went through our own grieving process for who she was. My husband and I quickly decided, however, that we were not going to let her diagnosis make us lose appreciation for the fact that she is healthy and alive. She can bathe herself. She can laugh at a joke. She is a much calmer and peaceful person because, for the most part, she is not burdened by the memories of things that saddened her in the past.
I cannot imagine what it is like to be in a relationship and feel like I have lost the essence of who my life-partner is. Em’s husband is grieving. He sometimes tries to will the old Em to come back to him by asking questions he expects her to know the answer to, by hoping that more rest is all she needs, and by not accepting that things have changed. He is frustrated. He is upset that his wife is no longer who she was, that she asks the same question twenty times in the span of one hour, that he sometimes is the enemy when he reminds her of reality. He needs help. No one can handle a situation like this on their own. We take time to talk things through as a family. To remind him that he is not alone, that he is not always wrong, that he is loved, and to come up with better ways to support each other and Em. Below are some tips that we have picked up along the way that may help a family experiencing a similar circumstance.
ACKNOWLEDGE THAT THINGS HAVE CHANGED
The only thing that can make a problem even harder is not acknowledging that there is one. It HURTS to admit that the person you love is not the same. But you do them a disservice by not accepting that they have changed and not working to support them in the best way you can. The longer that Em’s husband fought the fact that she has Alzheimer’s, the more frustrated he became in his interactions with her.
SUNDOWNING
Em could be temperamental at times, but it seemed that every day around four or five p.m. her evil alter ego would appear. She would be highly irritated and pacing up and down the stairs, her forgetfulness would be at an all time high, she would be terribly emotional and crying uncontrollably, she would experience more Lewy Body episodes, and would be more paranoid about someone coming into our home to hurt us. We quickly realized that she was probably sundowning, a condition associated with Alzheimer’s and Dementia. To help decrease the effects of sundowning we:
Organized her day to encourage eating small but healthy and balanced meals earlier in the day.
We play music that triggers good memories and artists that she loves. We sing, we dance, we reminisce.
We are religious so reading the bible and praying with her is calming, reassuring, and encouraging.
Getting outdoors at least once a day around mid-day always sets the tone for her day. Because of Covid-19 we remind her to wear her mask, and take her for a one to two mile walk at a nearby park.
She wakes VERY early – usually around 4 or 5am – so going to bed early, waking with her, and making an early breakfast helps her to feel loved and cared for.
We are mindful of the kinds of programs she watches, especially before bed.
For us, a lot of what Em watches seeps into her daily conversations, become her reality, and affects her sleep so we try to encourage her to watch happy, upbeat films/programs.
PINPOINT TRIGGERS AND AVOID THEM
Someone with Alzheimer’s usually denies that they have the disease because they cannot remember that they cannot remember. Do not try to force the fact that they have Alzheimer’s down their throat. Chances are they’ll either forget or you’ll become their enemy and they won’t trust you. Trust is key to help support someone with Alzheimer’s. They need to feel safe and understood. Here are some tips for engaging in conversation to help avoid conflict:
Never Lie. Shift the direction of the conversation in a way that will possibly trigger an old memory or at least will calm the conversation.
Em will sometimes say… “This house is different. We just moved here. Was someone else living here because I saw some of their things here?” Instead of saying – “No. What do you mean? We’ve always lived here!” My response is: “The house does look a lot different doesn’t it? We’ve done a lot of work over the years. Remember when we built this bookcase together? You did a fantastic job on that.
Do Not Ask “Don’t You Remember?”
Choose your battles wisely. For example, Em will say to her husband, “I just spoke to my doctor today and he said [x,y,z].” Her husband will respond, “No Em! Don’t you remember? We spoke to him on Monday. It’s Wednesday.” He just asked for a fight. In her mind, it just happened today and she was called a liar. A better response would have been, “Oh wow! You’re right, he did say that.” or if the facts are a little jumbled say “Oh yes I remember us speaking to him! I’m so glad you reminded me. He mentioned [x,y,z] also.”
Facial Expressions and Attitude Matter
Every eye roll, every sigh in frustration, every puzzled look is magnified to a person with Alzheimer’s.
“Wow! That’s Crazy!”
Sometimes, your family member will say something so foreign and bewildering that you won’t know WHAT to say. So just say… “Wow! That’s Crazy!” or “I can’t believe that happened!” because let’s be honest… you can’t.
Find The Positive In A Hurtful Past
There will be moments when Em will bring up her mom. She will ask “Where is Momma?” and R will say “Do you miss her? We do also, she was such a strong woman, and such a loving person. Even though she is gone now, she would be so proud of you and how you’ve kept the family together. ” Sometimes the realization hits her and Em crumbles and cries. We tell her it’s okay to cry for those that she loved, and talk about all the good times we had with her mother.
If you know that mentioning the word “Memory” will trigger a negative response, avoid using it in relation to the person with Alzheimer’s. Sometimes they know something is wrong or that something is changing, but they don’t understand what. You don’t need to get them to understand the nature of their disease. You need to show them that they’re loved no matter what.
LEARN TO LAUGH
We learned very early on to just laugh and not overthink every comment. Not every remark warrants a response. Sometimes allowing Em to speak freely and to be heard without interjecting was all she wanted. Sometimes just saying I love you is enough. Sometimes less is more.
ONCE A MAN TWICE A CHILD
The gravity of the fact that his wife had to be re-taught basic things was deeply saddening to my father-in-law. Concepts like banking and bill payments became foreign although she wanted desperately to maintain the control she had before. It helped that bills were done together and that she could see him paying certain bills and saying “Em. I’m going to pay the electric bill this month. It is $__x__.” When she feels included, it brings her peace of mind. All of that to say, find ways to maintain a sense of normalcy so that individuals who were once very independent and pillars in their household don’t feel useless and unwanted.
SAFETY FIRST
Accepting that things have changed is an integral part of assisting someone with Alzheimer’s disease because their life and safety is now dependent on you. If your loved one is not in an assisted facility, but is at home, still mobile, and fairly independent be mindful of habits that could be risky. For example: Hide the car keys. They may know how to drive, but may not remember how to get back home. Set up a security system that can alert you if the entrances to your home are being opened. Sometimes the mood strikes and your loved one may want to go for a walk, but may not remember where they live or your phone number and have a panic attack. If they take any medications help them organize the pills by day and time in advance. Set up alerts on your phone for reminders to avoid a possible overdose or missed dosage. Lastly, know your limit. If your loved one is a danger to themselves or you because their memory is fading and they don’t trust the seemingly changing world around them seek help immediately. Let their doctor know and figure out a living arrangement that will ensure the wellbeing of everyone.
I truly hope that our experiences could be of some help to you and your family. I know that all circumstances are different. That everyone is struggling to cope and make it to the next day in their own way. I know how tired and worn out you can feel – especially if you have children. I’ll touch on that next week… How to teach your children to cope with changes in family dynamic such as a family member being diagnosed with Alzheimer’s. In the meantime, share with us how you’re coping right now? Do you have a family member with Alzheimer’s, Dementia, or Lewy Body Disease?