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.
Maybe I am nesting – no probably not, but I am going through a cleaning phase so we have made several trips to the county refuse collection facility and the local charities to donate reusable items. We have also rearranged a little. Again, this is quite a bit of change for a little old lady who has a hard enough time figuring out the cabinet for coffee cups and how to run the dryer.
I really think some of our activity has sparked in mom an old feeling of keeping her own house, after all she has kept her own house for the better part of a century. So, while I sort and clean, she has been hunting for things to “put away” or throw away. She has also become quite bossy and possessive.
She had a bossy statement for me this morning and I chuckled at the realization that I was not allowed to answer back when I was a child and now I still can’t answer back! At least now I don’t a reason to because I have nothing to prove despite the fact that that I truly believes she thinks of me as a child. After all, I am her daughter and she has no recollection of me growing up, getting married, and having children and grandchildren.
So, it is nothing personal. When she might have had an agenda for her statements before, she does not now. She can’t. The problem is that I forget that it is nothing personal and my feelings get hurt – actually my pride gets very wounded. You see there is still that little girl inside of me that wants my mother to be proud of the woman I have become. Lesson learned – tell my own children how proud I am of them and how much I love them – as many times as I can.