Whew! After having raised three children and being a grandparent to three grandchildren, I thought I was prepared for just about anything. I have to say that I had to dig in the depths of my memories for those poignant moments when we traveled with small children. Maybe ignorance was bliss because I never really stressed too much because my philosophy was always – if I forgot something, there are stores where we are going. Besides, I always packed as if we weren’t going to see food or water for 24 hours.
Well, traveling with an adult with dementia is a whole new experience. I battled with myself over when I would tell her and decided 48 hours was a good point so I gently told mom that we were leaving my house and going back to California. One of the areas mom’s dementia has hit hard is her geography. She has no clue how far away anything is but she knew we had to pack. So, out came the suitcase – which was my other reason for having to tell her.
I packed. She unpacked. I packed again. She unpacked again, but thought she’d pack her sheets. Yup, and the third time, I simply took the suitcase and put it somewhere she would not look (I am a slow learner sometimes!). The packing was really not the issue but all the stuff she had hoarded and accumulated over the last few months. Wads and wads of tissue, piles of napkins, pens galore, half eaten packages of cookies, plastic shopping bags, rubber bands, and a host of other things that I ended up throwing out. She loves shoes so she was sad that I didn’t pack her pretty sandals or one of her three pairs of walking shoes. She was a petulant little old lady that I had to keep calm because we had to be in the car by 3:30am on Monday morning.
The airport/plane experience was extremely interesting. Up to this point, my sister would drop her off and pick her up so this would be my first time doing air travel with mom. She instinctively acted frail and needy when I asked for assistance to the gate. Dragging an 84-year-old woman down three escalators, a shuttle, and long walkways to the gate was not looking especially easy when she’d want to stop at every restroom she’d see – so out came a wheelchair and she became someone else! All of a sudden she looked old – she hung her head and limped in and out of the thing. My mom, the practiced, seasoned, traveler!
We had to switch planes in Denver so our gracious airline hosts had a wheelchair waiting at the door. I had to laugh out loud. She declined the wheelchair and practically sprinted to our next gate with me jogging after her with our bags going – go left! go right! Needless to say, we made it.
Mom is now “home”. She is in the house she has lived in for the last 20 years – the place she knows the best, where all her things are. We made the trip a week and a half ago. My next few posts will be about the preparation for the trip and all the experiences we had in that short time.
My heart is stuck though. I have written about needing to hear words of affirmation from the woman I know of as my mother, but none will be forthcoming. I wanted her to miss me even a little. I wanted her to hug my arm or touch my face. No. Nothing.
Yet, I had an “aha” moment the night before I got on a plane to go back to my house. We were piled up on my sister’s bed just having a girl chat when she quipped, “I don’t want to live in California!” For the next few minutes, neither my sister or I could redirect her. Mom was adamant, argumentative, spouting nonsense, and downright angry. She got her geography mixed up and actually asked me, “Where do you think you got your brain?” – meaning where did I go to school. Her question had nothing to do with genetics.
Her rant was eye-opening. As we tried several times to redirect, I got a revelation. Mom was trying to tell me she loved me! She was trying to communicate her dismay over the fact that I was leaving. My mom could not find the words to say nor could she express the feelings roiling around in her heart. Though she was dismayed for a few minutes, I ended up understanding that she may not be able to say the words, but it was there – buried under her inability, almost disabled by her condition, but it was there. She loves me!
The last two days, mom has had difficulty walking. Since she can’t really reason, she attributes her current ailment to sleeping funny – right after she wakes up or the cold – right after she’s been outside or walking too much – after her daily jaunt. I had a couple of gentle talks with her to remind her that she has old bones. Her poor bones have carried her 84 years and they must be tired.
She actually listened quite intently and I let the thoughts sink in. Then, I reminded her that her eyes, ears, heart, and the rest of her body has served her very faithfully over the last 84 years. I have to admit that she mumbled and grumbled as she hobbled away, but I truly think she got the gist! Actually, I too got the message. My “old” bones have served me more than half a century and I must honor the service with rest and respect.
As one of the advocates for mom’s old bones, I am charged with making sure they get rest and respect. It is a delicate balance of movement interspersed with times of leisure and rest. Our old bones are not going to be as strong as they were when we were in our 20’s especially since we did not engage in regular exercise or good eating habits.
I got some mail the other day reminding me that I need a bone density scan. As a cancer survivor, I am on medication that affects my bones. I am developing a deep respect for the structure that holds me up and allows for mobility and movement.
I love the saying, “if the walls could speak”. I think it is the same with old bones (to include the rest of the body) – if her old bones could speak, what a story they would tell. As I watch mom every day, though I am focused on what is happening to her currently, I have to remember there is history in front of me – in those old bones.
Note: It has been a harrowing few days as we have family in Florida. The electricity had gone out during the storm and finally flickered back on late yesterday. It is hard to be so far away even though we would not be of much help, we might be of a little comfort especially to the children. Though the Bible says not to worry, it is hard not to dwell on thoughts that would be classified as worrying. Our thoughts and prayers are for those affected by the hurricanes, earthquakes, fires and other disasters around the world.
I am currently reading a book that seems totally unrelated to life with mom. In this book, the author speaks about current decisions, situations, circumstances reflecting the choices previously made. Let me give a simple example: someone who eats a healthy diet and exercises regularly in their twenties and thirties has a better chance at facing their forties and fifties in good health.
I don’t read copious amounts of research and literature on dementia, but I have tried to be a little more educated especially as I deal daily with life with mom. What I have overwhelmingly found are warnings – warnings to those of us who can read the research. Exercise. Eat well. Stay active. Don’t take things for granted. Who knew there is a correlation between high blood pressure, high cholesterol, and chronic conditions and dementia? There is little out there between medical white papers and blog type articles and much of what is said is repetitive. What I have learned unfortunately, does little good for the one on whose behalf I do the research. What I have learned is helping me become educated about the choices I am currently making that will have an impact on me in years to come.
Here is the other part: I regret not knowing the things I know now for mom’s sake. I have a list of shoulda, coulda, woulda items that span the last 10 years or so.
- I should have been more involved in mom’s health – keeping track of major events and researching the impact of such on her, keeping track of her daily regimen of diet, exercise, and medication, and being more tuned to her emotional state.
- I could have helped when she was first diagnosed because apparently, there are things one can do! From what I have read, we could have changed her diet, gotten her plugged in to a program, explained things to her while her executive functions were not totally a mess, and prepared ourselves for the changes that would inevitably come.
- I would have been more supportive of the sister in whose care mom has been these last 10 years. I am grateful that as a family, we are doing better to support each other, but I shoulda, coulda, woulda.
So, life with mom is taking a course that is irreversible. We can do little else but make sure she is taken care of. But, for those of you that will read these words, take care of yourselves – I know it has become a priority for me and my family.
I am with my mother virtually 7 days a week, 24 hours a day so I get many opportunities to observe her. I watch her while she eats. I watch her as she takes her walks. I watch her as she rides in the car. You get the idea.
As of this moment, I am also watching the progress of Hurricane Irma. We have family and friends in the great state of Florida so after the Hurricane Harvey results, we are worried. We can open our home up to anyone who needs a place, but we are so far away, it would not be feasible.
There is so much we don’t know. We have no idea how folks are really coping. What of all the people in care homes or hospitals? What of the ones who are elderly and far away from family? What will happen? There are so many questions, but I know this – there are efforts underway the likes of which I have no idea of. The scope of what is being mobilized literally takes an army and what about the families of that so called army? You get the idea.
In the same vein, mom has no idea what happens in order for her to be provided for. She has lost the ability to see past the few feet in front of her and in some cases she can’t even see that. This morning, in her haste to cross a street during our walk, I had to physically hold her back because of an oncoming car. Mom does not eat unless a plate is prepared and placed in front of her. She does not snack unless her snack basket is replenished. She does not take her medication unless I administer it.
Here is what I know she knows:
- How to do simple tasks like brushing her teeth or washing the dishes
- Some of her past in little tidbits that she strings together
- Enough to create conflict when she insists on her way
Here is what she doesn’t know:
- Her present – what day, time, date, season, or even when it is mealtime
- We work around her – even when we shop, she can’t make the connection between what we purchase and why
- She is protected and cared for tenderly and with great patience and love
My heart goes out to folks in situations like ours because like mom, there is so much we don’t know! All the research I have done has helped me personally cope and understand some of mom’s condition. I am grateful for the researchers, doctors, and people who have a mission to inform those like me who have no idea. For our family, we ultimately believe that God will take care of us and that He knows what we don’t know. Oh the peace that comes with knowing that.