On Alzheimer's and my mom

I read an article today that I found very interesting. It was entitled “Dementia diagnosis can lead to stigmatization.” This is a topic that is very interesting to me because of my family connections and because I think it sheds light on a side of disease that isn’t talked a lot about. How we deal with those that have diseases is tricky and confusing and does need to be addressed. What makes it even tricky is that every disease is different and most diseases are progressive…and worse yet each disease affects people differently. It is a topic that is difficult but it is important to talk about.

After reading this article though, I wanted to take a moment to shed some light on my situation, in the hopes it helps.

My mom has Alzheimer’s. Early on-set Alzheimer’s to be exact. It sucks.

We first started to notice the symptoms in 2004 on a family trip to Europe. My mom found it harder to remember directions when they were given to her. Since this had always been her area of strength and mid trip directions can be pretty important we noticed this change. My parents looked into it when they got home but everyone just said it was most likely menopause and to not worry about it. At this time we noticed that her memory continued to decline – not comically or overdrawn like in a movie but subtle things. The main problem, though, in having the problem identified was that my mom has always had a mind and a memory that is phenomenal. At her top peak of functioning she remembered more and knew more than the average person. So when they would do tests on her she kept coming up as average, therefore doctors assumed she was fine. They weren't able to see the decline in light of her previous health. Finally in Spring of 2008 we went to the UBC Hospital and the doctors there were able to diagnose her. It was Alzheimer’s.

Between summer 2004 and spring 2008 my mom continued to work, drive and function almost entirely normally. Despite the sporadic memory loss and some confusion and light loss of hand/eye coordination and motor skills things were relatively normal. My mom was able to continue to work until January of 2008, when she took sick leave and eventually retired. She was able to drive during the day for most of this time. That slowed down too after her retirement. Through all of this she remained able to function, able to have friends; generally able to have a fairly normal life.

Somewhere between the Spring of 2009 and the Spring of 2010 there came a lot of decline. My mom wasn’t able to make a speech at my May 2010 wedding because while she could still speak it often got trapped inside of her, and it would have been too much. Preparing for my wedding was a helpful diagnostic tool for my mom’s progress. February of 2007 my sister had gotten married and my mom had been able to be much more involved, but by May 2010 she was not able. She was happy I was getting married, she knew who my husband was (despite only meeting him in 2007), she knew who all the guests were (and helped fight to make sure more were invited – classic mom) but she was no longer “mom” in the way she always had been. Planning for my wedding opened my eyes to what having a mom with Alzheimer’s will look like – it changes things.

I still love my mom and respect her a lot. But she, in most ways, is no longer the person that I grew up with. Alzheimer’s has taken my fiery, talkative, loving, high energy, woman-with-a-plan, ADD mom and replaced her with a loving, sweet, quiet, docile woman. She is very sweet, but she is different. I’m thankful we haven’t experienced what so many others have – my mom is not angry. My mom is not mean. She is only occasionally paranoid, and that is only to do with relational hurt, not schemes like with so many others. But it takes time to learn this new mom.

Since about 2009 my mom’s disease has been fairly similar. There are declines in almost all areas. This disease has affected four of 5 senses. Her talk is limited to almost none because the words get trapped and she can’t get them out. Her hand/eye coordination is low, as are her motor skills  So while she can meet someone new and usually learn to remember them after a while, she can’t always open a splenda package or put on a bathing suit. Buffet lines are tricky as well, since you have to hold a plate steady and serve yourself, all while walking from station to station! As my mom loves food and especially since her taste sense is still in tact, this is a frustrating symptom for sure!

My mom still loves people. Friendships, though, change with any disease, but especially one that affects the mind as much as this one does. People find it hard to converse with someone who can’t always speak back. My mom gets overwhelmed in large crowds because she simply can’t keep up with loud, quick conversation, especially in a noisy place. Too many competing thoughts. So people tend to shy away, because it’s hard. Especially here in a new city (my parents moved to Vancouver in 2009) with mostly new relationships, there isn't the background of friendship to help buffer the relationship. As well her words and thoughts aren't expressed fully so it can be a guessing game to determine what she means.  Through many years as her daughters, Jenna and I can usually guess pretty closely what she’s talking about, but there are some conversations that stump us. I can’t imagine trying to figure it out without all of our history! My mom also gets bored easily. Now, she’s very gracious about it, but you can tell. This brings tricks of it’s own – how do you entertain and engage with someone who is easily bored, has low motor skills, low speech ability but also still has a mind that is very aware of what is going on?

My mom is amazing. She is patient with us as we figure this out. She is thankful to God for the life He has given her. She is gracious with my Dad as he works so hard to be her primary care giver (which he does amazingly well). She laughs a lot. More than she did pre-Alzheimer's it seems. She is thankful for any friendship, relationship, quality time that is offered. She is heroic in how she deals with this disease.

And life goes on – there is ebb and flow no matter what. We don’t know what will happen with this disease. We have no idea at what stage she won’t be able to live at home anymore, at what stage it becomes too much for my Dad to do alone safely, or when this disease will degenerate to the stage of death. There are so many uncertainties.

What I do know is that my Mom and my Dad will face this together. I know that they will rely on strength, wisdom and provision from God through it all. I know that they will not stop telling people about how great their God is, and how much their God loves everyone around them. I know that neither of my parents are ready to stop having friends or to stop being in relationship. They need it just as much now, if not more, than they did before. I know that my mom still thinks of herself as a “talker” even if she can’t always talk now. She has lot inside of her to give. I know that my mom still longs to give to others and to help bridge relationships, only now instead of planning it herself she asks my dad or me and my sister to do it. So we will happily throw parties and introduce people, and serve in the ways that she no longer can.

And I know that I will be eternally grateful to those that take the time to get to know my new mom. To the ladies at “Women at Prayer” who talk with her. To her life group that includes her as family. To the people at church that take the time to talk with her and get to know her. To my entire family for making sure she isn't left out. For Colin and Paul who tease her and joke with her as if nothing has changed. For her Port Alberni friends that make time for her when she returns. These moments are precious…and ordinary…and so important.

Feel free to take the time to talk to my mom or others in other similar situations. Yes, it might feel awkward. Yes, it will take some time. But they will be patient with you – they will mostly just appreciate the effort. And you will be learning something new and making a difference. And it will barely cost you anything. 

Photos by Laura & Nick Froese