Famous last words…at least for mom are the words, “I forgot”. Sometimes I want to be sarcastic and say, “Of course you forgot! You have dementia!”. But that would be cruel because she would not understand the unkindness and it would make me look like a heartless person. I almost did not post today except I had made an effort to fill the time only for her to say to me a little bit ago, “I took a shower and spent all my time upstairs.”
Well, that was untrue. Today was baking day. Actually for mom it was a day of excitement because “we” created lots and lots of dirty dishes and she spent much of her time happily playing in the sink. She was helpful in grating all the zucchini and carrots for our bread, but the best thing for her was the ever growing pile in the sink. She was chomping at the bit to get to them and took a protective stance in front of the sink once she got there. Her obsession with water is a curious thing to me because I never really thought of her as enjoying doing the dishes in the lifetime of memories that is now locked up beyond the grey eyes.
I suppose I need to be happy in this – that I am making memories with my mom for me. Wow, that is a heavy statement. She is right – she took a shower, but she did not stay upstairs. She had come downstairs all giddy about her new shirt. She had “found” all her new things in her closet and tried them on, modeling them in front of the mirror because she wanted to know how she looked in them. (I forgot to mention that mom is a little vain – she does look awesome for all her 84 years!) She then put on one of her new shoes and declared how pretty they were. But, quick as the delight wore off, she was back in her comfy regular outfit and ready to grate zucchini and carrots with me.
All in all, the bread turned out quite nice. I was happy except no matter what I concoct for an activity, she really only finds delight in the routine. So, for the time that it was, baking day was a success.
P.S. The breads are “healthy” adaptations of recipes I found online. I used applesauce instead of oil and cut any sugar portions in half . Of course, I plan on slathering our slices with butter or cream cheese but isn’t that the yummy part anyway?
On a whim, I decided to check on mom in the middle of the day. She had been particularly quiet, insisting on sitting upstairs all day long. She came down, to “work” and then would announce that her “work” was done and hike back to her room. She also decided that she had laundry to do – which makes my heart happy because getting her to relinquish her favorite shirt and shorts was akin to me robbing her of precious jewels. So, I went to check, bringing her an old pair of capri pants I thought she could wear.
If it hadn’t been for those pants, I would have not known that she had repacked all her clothes except for a couple of things! No wonder she would declare – “I have nothing to wear. I left all my clothes at home”. Well, I knew better because I personally had taken her shopping and thought she simply had forgotten her new clothes in drawers. No wonder she’d take an eternity to change or get ready for an outing or anything that had to do with making a choice on what to wear!
She expected my sister to show up any minute to take her “home”. The only thing is that “home” is a figment of her imagination because it is a jumble of places – places that for some reason have remained in her mind. She speaks many times of the rice farm “home” where they received a portion of the rice harvested. “Home” is the townhouse that is on the farm next to the rice paddy that is surrounded by roads congested with cars spewing out exhaust fumes so that she has a hard time breathing. “Home” is where she makes herself food because no one else eats the same thing, but she will take home all the recipes she has learned here though she has not touched pots or pans or a stove in years. “Home” is tied to the one person she leans on the most and whose face and voice she depends on to tell her what to do – my sister. I can’t fill those shoes so I will not try. Nor will I try to replace her longing for my sister for other things or people. It is something embedded deep inside her that keeps her going. Just like I consider my home to be where my family is, she too has her own concept of “home”. It is not wrong, it is her current definition of where she belongs no matter how content, or provided for or cared for she is in other places. One day, “home” will be with Jesus, but until then it is tied to my sister and soon, we will be without a choice, but to allow her to stay where she is at “home”.
This challenges me in many ways. She does not consider my home, her home. Our routines are foreign to her. Our friends and acquaintances are foreign to her. Our relationship is fairly formal because though she can’t remember why, she is a proud mama that can’t show weakness to her child. This is July, but isn’t November just tomorrow? Being truly unable to process the concept of time, she sleeps with the light on, is never hungry or tired, but understands that she will be picked up by my sister – when? Well that could be any day now.
Mom came downstairs with an empty bottle of Robitussin the other day. A large bottle. While her caregiver was here, mom had a nagging cough. I chalked it up to the new environment and who knows, she may have picked up a virus on the way here. So, we made sure she got cough syrup every evening before bed so that she could get some rest.
Well, the caregiver has been gone now three weeks and the cough is gone, but the cough syrup bottle is empty. Let me back up a bit. I pray every day that I am a good caregiver to mom. I want to make sure she is settled, reasonably content, given balanced meals and safe. So, this morning on our customary walk, it dawned on me (I like to think God can speak to me since I am not moving quickly and mom is non-conversational so He has a chance at my attention). This whole experience with taking care of mom, albeit short is challenging me to my core. Do I love though the love may not be returned in the same way I need? Am I selfish to the core because the kairos (due season) time is not so opportune and the chronos (calendar/clock) time seems to be consumed so quickly? Ok – back to “The Cloud”…
Here was my “tada” moment…the cough medicine was like a cloud! She already has difficulty processing data – hot/cold, happy/sad, hurried/slow – and then to put her on an OTC medication, even one meant to help her, was like putting her head in a cloud. Here I was thinking that she was making tremendous progress! I could hope, but reality keeps smacking me in the face – telling me dementia is not reversible. Her recent “improvement” was simply the cloud of dextromethorphan and guaifenesin being lifted. Don’t get me wrong – if she needs medication, I will make sure she gets what she needs, but I also need to work out how things will affect her.
I read somewhere that there are OTC medications that are somehow linked to the onset of dementia and Alzheimer’s. There is so much information, conjecture, and postulation in regards to what causes these terrible conditions. That may be good for me so that I can try to avoid it, but that does not change where my mother is. At this point, it does not matter how she arrived at the place she is at, but how we, her family, are helping her deal with it by being the best caregivers we can be.
Before I start, I wanted to share something about mom. She LOVES water. She finds every excuse to wash dishes and hunts for things to wash. If she can’t find anything to wash, she washes her hands. She will rest her elbows on the sink and let the water cascade over her fingers as if she is playing. It could take her 2 minutes to wash a coffee cup or a spoon. Although I sometimes feel bad about her doing ALL the dishes, it gives her something to do – something she enjoys immensely.
This weekend was good for her! She seemed to have a burst of energy that included some unsolicited laundry, an invitation to go out to lunch (which never happens) and a couple of conversations initiated by her. The best was that she sat for a few minutes watching a movie and laughed at one of the funny parts – ok, let’s be really serious – she never watches TV nor can she keep up with anything on the screen. Imagine our surprise when the chuckle came from her chair! We went out for a meal and she handled her food by herself including mashed potatoes and cole slaw which she normally turns her nose up at.
So am I bewildered – you bet. I would love it if she could be like this most of the time instead of simply just being there without reflex or emotion or opinion. I read in some of my research that for folks her age with dementia, her senses are not only loosing their sharpness, she is losing her ability to process what she sees, hears, tastes, and even what she feels. That is probably why she gets no pleasure out of watching television – she can’t keep up.
So, we move much more slowly. We give her time to put her shoes on or go to the restroom one more time. I shared mom’s little victories from the weekend with my sisters. It was nice to be able to tell them she is doing well. Still lots of work ahead to make sure she is comfortable and feels secure. We have to make sure she gets lots of opportunities to play in the water.
In my struggles to find activities that will keep mom busy or to occupy her time, one of my goals is for her to enjoy what we do. So, each morning after a nice breakfast, we walk. I sometimes catch her looking around – which can be dangerous since she does not watch where she is walking! But she will exclaim as if seeing her surroundings for the first time (every time), how pretty the neighborhood is and how large the houses are. She thought one of the houses was a church and another an apartment building because she mistook the windows for doors.
But, this morning she looked up at me over her plate of egg and toast and actually smiled saying, “So, where are we going today?” You could have pushed me over with a feather. First, she initiated! Second, she smiled! Third, she was looking forward to going somewhere!
It wasn’t until we had walked and I was getting a shower that it hit me. My mother doesn’t care where we go or what we do. All she cares about it is that it is with me. She simply would like that I take her with me wherever I go. Isn’t that the way it is with many things? God simply wants us to delight in Him (Ps. 37:4) – not in what He gives or His work, but Him. I want my family to like spending time with me. According to author Gary Chapman, we communicate love through five love languages. Of these, time, works of service, words of affirmation and physical touch are what mom is responding to. She may not see so well, hear so well, taste or smell so well, but her heart somehow knows. I believe that is what breakfast was all about.
She may not look like she enjoys herself, but she has someone to follow. She is included. She is still needed and wanted.
We worked hard yesterday. We cleaned, sorted and rearranged part of the garage space that had not been touched in years. So, when it was time to stop, mom went in to the house first, but not without stopping to check the dryer. Maybe it was out of habit or some sort of routine, but she had not done laundry. She opened the dryer and declared that the towels and sheets were still wet. I will chalk my response up to being weary and hot, but I lashed out and told her that I knew and that I had been doing laundry for 40 years and knew what I was doing. With the look that I knew well, she furrowed her brow and said quite calmly, “I was just trying to help.” Well that put me in my place. She promptly turned around, left the room and made sure the door slammed after her.
I suppose I had it coming. I have been reminding myself to be particularly patient and kind. I have to continually tell myself that you may be able to teach an old dog new tricks, but an older person with dementia is not “teachable” so stop trying!
Here was my dilemma – do I apologize or let it go? I knew that with each passing moment the chances of her forgetting was 100% so instead of doing the right thing, I let it pass. Epic fail. Not because she would care or know, but that I would. Doing the right thing means doing something whether or not anyone sees or knows (or not doing something wrong whether any one sees or knows). She would not have remembered the offense or the apology, but I certainly remember and God saw and knows!
We ended the day with her insistence that she lived in California which was connected to Guam and that both were so very hot she required and had installed an air conditioner in her bedroom. After trying to correct her a little, my very patient husband looked at me and said, “Don’t.” He’s right and I knew better.
I have seen at least a couple of movies that have a “Groundhog Day” type of plot. All of them are quite funny until you feel like you are living it in full color. Somehow, her favorite days are Sunday and Tuesday…at least for the last few weeks. She doesn’t seem bothered by the fact that she no longer knows what day it is or even what time it is. She used to live by her cell phone – constantly opening it to see the day, date, and time. Nowadays she doesn’t even know where her cell phone is much less opening it to be “up to date”.
I’ll tell you what does bother her – when I have to remind her repeatedly what we are doing and why we are doing it. There is this little – and I mean little piece of her that somehow understands that she SHOULD know better, but no matter how hard she tried, she can’t produce a lick of understanding. In her more salient moments, she has told me that her memory is bad and she can’t quite understand what is the matter. Those are the moments I am most sad for her because explaining it would be useless so I am at a loss to help her erase the feeling of despair and sadness that I see in her blue/gray eyes.
Most of the time, those blue/gray eyes show no depth. She can get delighted. Sad. Frustrated. Downright Angry. But those moments are fleeting and she soon forgets why she is having feelings and we are back to the blank gaze into the space in front of her.
I miss my mother. She and I used to talk every day while I drove home from work. My commute was at least an hour so we had plenty of time to catch up. She would always ask me how she could pray for me and at the same time, I could ask her for the wisdom she was well known for in her circles. She is gone, my mother – that mother from whom all I wanted was approval and love.
The mother that lives with us looks very much like the original, but it is as if someone came in the middle of the night and took a big chunk of her and now we can’t find it or even patch the gaping hole up with chunks of our own memories. Oh we have tried, my sisters and I, to remind her. We talk about our memories and made scrapbooks and photo albums and filled her walls with mementos. The connection is just gone.
Hmmm. I didn’t mean to head in that direction today. I really meant to start sharing stories, but this is not about her diagnosis or stage or even type. This is about preserving whatever is left and learning to live with our mother with joy, peace, compassion, and love. This is about dealing with feelings and how to sort out this process that has become a lengthened grieving and let’s face it – a burden. There, I said it.
My mother lives with us. Well actually, she only lives with us several months out of the year because my sisters and I share her. She was here last summer and I was so busy, I never got a chance to really think about her, her needs, and quite honestly, my own needs. This year because of circumstances, I am able to really be a caregiver. You see, my mother has dementia. Doesn’t that sound like a good reason for a cry or at least a theme for a good pity party? After reading so many articles and trying to learn about this very crippling condition, nothing has really helped. There are no solid answers because apparently, each case is truly unique and there is no turning back the clock and no cure.
Being one who journals, I decided to start writing down all we experience because I am being shaped – being changed AND because we have our good days and our bad days. Part of me wants to hold on to her while she still has some semblance of memory. After all, she has not forgotten all of it…yet. I think the best reason is that I have a lot to learn and this is the best way to keep track of all of it.
These past two weeks, I have been with her 24/7 and have learned quite a bit about her and much to my surprise, myself. I am sure our “stories” will unfold over the future entries but I am sure our stories are much like those of many others. I turned 56 just a week after mom became a wonderful 84 so yes, I am a middle aged woman taking care of her mother as if she were a little child – sort of.
Mom arrived with a temporary live-in caregiver to stay while I finished out my last couple of weeks at work. To be honest, my first thoughts were that we needed a caregiver so that I could cope with the challenges I had faced last summer. Well, that coverage left on June 28th so I found myself alone with mom for the first time since September of 2016.
Just a head’s up – I will be mentioning God quite a bit. I am or thought I was, a pretty strong Christian woman who could take on just about any challenge and because I happen to be short, never backed away from much especially if someone mentioned that #1 I was a woman and #2 I was “small in stature”. I thought I understood so much until my 4’8″ mother with dementia came to live with us.