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.
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.