My mom has “sundowners” and will often be awake during the night wandering around the house. My long suffering dad is often woken in the night to my mom standing over him and asking if he was sick and wasn’t he going to work? He will say it is 3 am and no, he isn’t going to work because he is retired. She will sometimes have a smart retort or will argue that it isn’t really 3 am. When he suggests she go check the clock she comes back saying “How do I know it is not 3pm? What if you’re lying to me?” She has lost the ability to discern time – even when it is dark as dark can be she doesn’t know that it is night time and she should be sleeping. And she’s suspicious that people are not telling her the truth.
My mom has done many peculiar things during the night when everyone else is in bed. One night she sat at the kitchen table and hollered for someone to come and make her supper at 5 am. Then she called for my dad and when he didn’t come, she tried a few other names of people she thought were there with her – like her mom (who passed away more than 20 years ago.)
One night my dad got up and found my mom “dressed” for “work” and sitting on the couch waiting. When he asked her what she was waiting for she said “They’re coming to take me to work.” When dad asked who “they” were, she didn’t know. She was “dressed” with 2 shirts over her pj top, her pj bottoms on and two different shoes on. She waited for over an hour, getting up every once in a while to check out the door until she finally got up and went back to bed for a few hours. Interestingly, for a period of time she was convinced she was going to work in a school. She didn’t know what school or what she did there, but she was adamant she had to be there. She did work as an aide in a kindergarten classroom over 30 years ago for a couple of weeks so maybe this memory is coming into play.
We are fortunate thus far that she hasn’t done anything dangerous in the kitchen. A couple of times she has put something in the microwave but she doesn’t remember which buttons to push and then promptly forgets. She did get into the medicine cabinet and dad found her moving bottles around. She said that someone needed to organize them. He explained to her that she could accidentally take the wrong medicine and promptly moved them to a place she couldn’t reach. Not long ago, she accidentally took 2 doses of her meds at one time. Yet another time she ended up taking dad’s pills instead. This can be a serious problem and we are fortunate that nothing bad came out of it. Dad very carefully doles out her medications for her.
Mom does not like the dark anymore. When she is up at night she turns on all of the lights she can – even the ones in the bedroom where Dad is trying to sleep. She pulls all the blinds shuts and is still fearful – of what we are not sure.
In mom’s world, the stained glass is letting in too little light and the coloured pieces of her world are too dark for comfort. In our world, we are desperately trying to maintain the colourful pieces of her personality and life, not diminished by bright light and not left to dull in darkness.
You put your right hand in, you take your right hand out, you put your right hand in and you shake it all about. You do the hokey pokey and you turn yourself around, that’s what it’s all about! A childhood favourite still played and loved today at our preschool!
Sometimes when my mom goes and attempts to dress herself (usually because she has to go to work and “they” are here to pick her up), she is found trying to figure out why the clothes aren’t fitting quite right. One time my Dad went in to check on her as she was in her bedroom for quite some time and he found her in a peculiar state of dress. She had one shirt on one arm, another on the other arm and her head through her pajama pants – through the leg hole! Thankfully, help had arrived and she was dressed with a little reorganizing of garments. Another time she had dressed herself with a shirt over her pj’s and nothing on the bottoms. We chuckled, slightly horrified, over that one for a while. What is that saying – “If you don’t laugh, you’ll cry?” This has certainly been my refrain during the last few months. A little humour provides a breath of fresh air through the still air of sorrow. Laughing feels good when not much else does.
As I have mentioned before, I have tried to determine what decades of her life that my mom’s memories are coming from. I’m sure my dad, woken in the middle of the night, wondered at the time, too. Shocked to see my dad in bed with her, she exclaims “What are you doing in my bed? What will my parents say?” He goes on to reply that they are married so it is okay. Although she expresses her doubt, she lets him stay.
Another night, my mom gets up and packs a bag and goes to the front door, trying to open it. My dad hearing her, gets up and goes and asks her what she is doing. She said she had to pack because her dad called and told her to get back home. “Really?!” says my dad, knowing there was no need to remind her that her dad had passed away when she was 16. “Where are you going?” “Across the street there, to my dad’s house” she replies with certainty. “Let’s see what you’ve got packed,” my dad checks her bag and finds 2 pajama bottoms and 2 pairs of shoes. Somehow he talks her down and she remains inside. My dad didn’t ever imagine he would develop hostage-like negotiating skills in his retirement age. Another pane of glass broken.
A friend just reminded me about a story we had in common. As I mentioned before, I have found some humour amidst the pain. Just yesterday, I was helping my mom shower and dress and she kept turning to me and saying “Did you have to help your mom like this?” “Yes, once.” I replied each time, hoping this was the last. Obviously she didn’t recognize me and thought I was an aide. Minutes later she is talking to my sister on the phone and proceeds to tell her that this aide had to help her. I am only your first-born (who was not made to be a nurse or care giver!!) why does your brain misplace me? Because it happened a multiple of times, I was able to laugh at the absurdity of it. Once is like a punch in the gut and takes your breath away, but it becomes a comedic tragedy upon multiple times. I have more amusing stories to tell but the humour is escaping me at this late hour. When I say late hour, it’s not the hour I am talking about, but the lateness of the journey. Later this week we are going to be making a new home for her in a Senior’s Care Centre. Today is our last family dinner together in their home and I cannot rally myself yet to go. If I put my head under my pillow, will it all disappear? If I volunteer to give up an arm, would that be sufficient to bring her back? There is no going back and I know I must go forward even when I know how frightened she will be to not have my dad at her side. Today is one step closer to later in the week and if I could turn back time, If I could find a way,
I’d take back those words that hurt you And you’d stay….
This is something I have been wanting to do for a couple of years now and am finally making myself do it. It’s been about 4 years since my mom was diagnosed with Alzheimer’s and during this last short while, she has been declining greatly. One way I hope to deal with the pain of it is to share via this blog. A warning: I don’t want to be disrespectful to any loved one of someone who is going through this very real and painful retreat into oneself that is Alzheimer’s, but I have been dealing with this journey with my mom with a lot of laughter. I hope you are able to laugh along and be encouraged especially if you are living through this same thing.
I also hope to add links for information on Alzheimer’s so that you can come and find some resources to help you in this difficult journey.
Why “stained glass memories”? Well, the church I grew up in had beautiful stained glass windows depicting different stories from the Bible. My mom also worked at the church for many years and I remember having to wipe down the glass and wash the window sills. Stained glass is beautiful because it is created with a variety of pieces of stained glass – different sizes, different hues, different thicknesses. What I noticed was that is is very difficult to see through stained glass – it’s kind of a murky, muddled kind of light warped sight. Kind of like the confusion my mother often feels when she doesn’t know where she is or what she should be doing. A fogginess, I’d guess. Sometimes, through freezing or thawing or a child’s ball, the panes may get chips or cracks that start out small and gradually grow bigger. Like Alzheimer’s starting out slow with the forgetting of items around the house, or having trouble with names or getting lost in a parking lot or driving home. Glass is fragile, some kinds more than others, but it all breaks and eventually loses its usefulness. The sense of self, the security of knowing she is at home and how to find her bedroom in her own house all shatter like glass shards – painful pieces of who she once was. Painful to us as family watching her slowly disintegrate before our eyes, but I am sure more painful yet to her in the moments that she knows she is not able to speak properly and isn’t making sense. A once strong woman raising 5 daughters on the farm is reduced to a confused and scared 76 year old woman who doesn’t know she is in her own home or that her mother has died many years ago.
“Where’s the humour?” you ask? I must stop for now and try to dig deep for some in the next post.