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.
The clock in the room is ticking. Were it not for the fact that I know I could leave when I wanted or I could choose an activity to do – like sewing or cooking or writing a blog post – the sound would drive me crazy. I have often wondered (not a good thing sometimes) whether we are guilty of pushing mom towards more forgetfulness. I know age plays a huge part because I can see in my own self a decreased ability to learn quickly or to get up from sitting on the floor – I am no spring chicken! Could there be a correlation between social inactivity and the deterioration of the mind? I have actually found lots of information, speculative as well as proven, concluding that physical inactivity leads to chronic illness, deterioration of the body (I want to say, “duh”), and deterioration of the mind as well as other things, but what about isolation and social inactivity?
Here is the question of the day: do we put mom in a care home or keep her at home? We have chosen thus far to keep her in familiar surroundings. She is in a clean house with the laundry all done and with the exception of some weeding, there is not much to do. Mom is in her room playing a game on her tablet. There is nothing to keep her engaged and it would be very difficult for me to keep her physically occupied for 8-10 hours a day. She can’t drive, cook, or even go out for a walk by herself. She won’t watch television because she can’t follow what people are saying and doing. So, we find ourselves in a dilemma of sorts and the guilt is simply overwhelming.
I have been in care homes where there is always activity – the TV is on and there are folks all around doing one thing or another. Most are bright and airy and there are people to talk to. As much as I take mom to the mall or out to run errands, there are hardly any times she is able to be social and we can’t stay at the mall all day. The social aspect of living is an incredible motivator to live!
There is also the financial burden of a care home. Truly, that plays a significant part of a decision like this, but we all still need to work so there is a cost no matter what we choose.
Today, I am exploring this option “out loud” for the first time and praying for my family as we will have to face this choice very soon. What is driving me to think about this is the daily sight of mom sitting alone playing on her tablet because I have run out of conversation and things for us to do. It is hard to put into words what we haven’t really allowed ourselves to think. Sure, all of us would love to win the lottery and retire to play the rest of our lives, but I am certain my choice of play would not be in a room where all I heard was the ticking of a clock.
Living with a person that has dementia is incredible from the standpoint of learning. The caregiver is constantly making adjustments because everyday is not the same and sometimes changes are made minute to minute. One of the most difficult challenges I have personally is how I speak, what I speak, and the attitude in which I say things.
Mom’s vocabulary is pretty much still the same so it becomes difficult when she can say words, but when she hears those very same words, she can’t process them. The other day, we were getting ready for a get-together with friends. I tried to plan the menu around the theme of simplicity for all our sakes, but there always is a bottleneck of activity at some point. So, I looked at mom who always wants to clean up before I am ready for her and said, “Don’t worry about it.” She laughed and told me why should she worry – that she doesn’t worry much any more. She could no more understood what I was saying than if I simply told her “hakuna matata”.
You have to know that I love idioms. I enjoy saying things that have a meaning beyond the normal use of each word. Well, can’t really use them any longer around mom! If I say, “piece of cake”, she will probably tell me she doesn’t like sweets or if I told her we aren’t “cutting corners”, she’ll tell me that the scissors aren’t out.
Here are some things I am learning and still having trouble putting into practice:
- Say what I mean in the plainest, simplest of words
- Make sure I am making eye contact – touching her arm sometimes works, but not always
- Time what I say – not too early so she’ll forget, but not too late or else we surely will be late!
- Give an allowance of time for what I am saying to sink in
- Be patient because sometimes it takes multiple tries to communicate anything at all
- Speak slowly because processing is delayed especially if I need to get feedback in return
- I will not have 100% success in getting understanding and that is okay
I am sure other people can add much more to this list. From last year to this year, this list has changed and in a few months it is likely to change again. I truly have a growing admiration and respect for all those who find themselves in a caregiving role and for those who dedicate their lives to help those like us.
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!