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.