I had planned to write all about the happenings on our trip home and I still will, but with all the tragic events it is hard to even stop to write because what I have to say seems mundane and unimportant in comparison. With the technology of today it is truly amazing to feel like you are transported to the scenes flashing across big and small screens. Despite how paralyzing these events are, we still have to face what is in our own lives.
Our family has had much to contemplate these last couple of weeks. Our mother comes from a family of seven children. Out of the seven, five are still alive – all of them being at least 80 years old. The spouses of the two that passed on are also still living so because our family is fairly close, I will include them. Our whole family to include the seven (living), their children, the grandchildren and great-grandchildren ought to pause and just contemplate the enormity of this. As far as I know, of the 23 children born to these folks, 22 are alive and kicking and of course these “children” have had children – I am one of them and I am a grandmother!
But now, we are seeing their decline. I am not geographically close to our family, but I am feeling the pressure of this seemingly sudden change. I know in my heart and mind that the changes have been gradual, but no one really keeps track of the subtle shifts until it finally gets to a point that now we are the ones making changes.
An inevitable question has hounded my heart and mind – one always appears when I am faced with these types of thoughts. Here it is: How am I going to be different – how will contemplating this change me? Well, I need to spend more time with my siblings – value them – share my life with them. I want them to know I love them before I can’t tell them anymore. Busy is no excuse because they are family. I know this includes all the people God has blessed me with by putting them in my life.
We are very blessed in that each of these precious older siblings are surrounded by their families, but we are busy – too busy to stop and maybe bring them together for one last hug and kiss and let them say goodbye to each other. Just a thought and a dream.
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.
Today, my focus shifts a little. Because I want to share what life is like in our household as we care for a loved one with dementia – it includes us. The intent is not to whine nor is it to glory in our efforts, but simply to open our front door so that we are not only transparent but truthful. Too many times in my life our family has put on a facade of happiness and well being that did not reflect the true life of a family living together and I think that did more harm than good.
I am grateful that mom is still physically strong so the challenges don’t include those that might require us to help her with tasks such as bathing. Mom is still able to contribute to the family by doing simple chores. As a side note, I am struck by the way mom’s dementia has taken away her ability to remember points in her past and present, but has not diminished her capacity to do rote housework such as washing dishes or vacuuming. For what seems like routine activities for us like cooking or setting the table, I have come to realize that each has differing requirements for processing hence mom’s ability to do some and not others.
So, back to my point – making sure we as caregivers take care of ourselves is just about as important as caring for our loved ones. We need physical rest, leisure time, activities that stimulate our creativity and learning, and of course good nutrition and exercise. We are not alone in our care for mom – this is a family enterprise – still with many challenges that create difficult decisions to make. But some folks don’t have such resources. I know there are well meaning and truly valuable programs run by local, state, and national organizations as well as non-profit and for-profit companies, but sometimes it just takes a friend or neighbor that notices and stays to chat at the mailbox or drop off some banana bread or send a care package with “fun” stuff in it for everyone. Next post? A list of a few of my favorite things and my address….just joking!