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 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.
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.