For me, morphing from adult child to caregiver has taught me much. One of the hardest adjustments is leaving behind your past and learning that as the disease progresses, no one ever wins disagreements. If a discussion is getting contentious, it needs to end without anyone emerging “right”.
This was tough for me to learn because in our family, debates and the exchange of ideas was a tradition at our dinner table – even into adult hood. As mom’s disease progressed, frank discussions, or any disagreement brought out the lion. She would just become combative. Medication has helped and she is much less suspicious and disagreeable now.
It took me time to learn, but I began to redirect, let go and change the topic when a disagreement was coming. I’m not perfect at it, and on a bad day, I still struggle to overcome the old patterns of our decades-old relationship.
While the behavior changes in my mom felt personal, I never felt that way with my dad. You constantly wonder if the disease is just erasing a filter and their real personality and nature is emerging. As my mom has progressed into the disease, I have seen so many other changes that I’m convinced the combative and disagreeable woman my mom can become is not a personality quirk that she hid from me for many years.
In the first few years of the disease when we just suspected something was wrong but had no medical confirmation, I had a lot of arguments with my mom. The inability for us to have a disagreement without being disagreeable was one of the reasons I was sure something had changed with my mom.
We watched and witnessed many changes in our parents and worried for their health and safety. We finally learned that no one wins with dementia. Loser
When you are moving into a disagreement, consider:
- Emotions linger so avoid becoming angry or confrontational.
- The loss of short-term memory works to your advantage. Consider excusing yourself and going to the bathroom to wash your hands, when you return, you can start a totally new conversation.
- Emotions spread, so arrive with a smile on your face and a relaxed attitude.
I had a terrible visit with my Mom. Things had been going so well and while I was saddened by her decline and inability to remember me, she has been pleasant to me for several months. It made me wonder, was it me, was it her, or a little of both?
She was happy to see me, but started to get contentious over the ice cubes, her laundry, the trash can liner. When I told her I started a load of laundry when she was finishing up her BINGO game, she challenged that I would be so “presumptuous” as to take her laundry and put it in the washing machine. When I told her it was in the laundry basket, she backed down. When she wanted ice cubes and there weren’t any in the freezer, she wanted to know why I took all of the ice cubes. When she saw trash in the garbage can without a liner, she wanted to know why I put trash in the can without a liner. I hadn’t done any of those things, but had simply arrived and started a load of knowing we could finish doing it together.
I recognize how frustrating this disease must be to the sufferer. My Mom has always been independent and resourceful and now she needs help. She doesn’t like it — I know I might not do so well under the same circumstances.
I marvel at her ability to easily and succinctly chide me for a perceived wrong and then be unable to finish a sentence when we are chatting about the family.
As I was leaving, I wondered if somehow, she could feel my frustration today. I thought I left my worries at the door, but did I somehow move too fast or rush her through a task that just made her mad. I remember something Bob DeMarco wrote about his mother Dotty who would say “No Push, Push” when the pace of activity was too rapid for her to process. Had I moved too fast today?
Lurking in the back of my mind, I wonder if she forgets I’m her daughter and just thinks I’m messing in business that isn’t mine to manage. Contemplated.
USA Today just reported that life expectancy in the U.S. hits record high. Ladies who are 65 are expected to live to 81 and the gentlemen to 76 years. What are you going to do with your time?
I’m obsessed with ensuring that I continue to exercise, contribute to my community in meaningful ways and stay engaged socially. Many studies report that these are the three most important elements to aging well. The tough part is making sure that I have the wealth and health to afford these luxuries.
Have you begun to envision your future? A great book I recently found is Roadmap for the Rest of Your Life: Smart Choices About Money, Health, Work, Lifestyle … and Pursuing Your Dreams. There are many life stories interspersed and you quickly understand how many people find that the typical american dream of retirement doesn’t suit their abilities or their interests.
The time to start planning is best done in your 40s and 50s … when it feels far away. I hope you will hit your local library and check it out. Recommended.
At the local community center, I’m involved in the Lifetime Learning program and teach a class on how to organize and protect personal information so it can be easily found, or shared when needed. There are great discussions in these sessions and last week, one of the participants shared the recent article written by Michelle Singletary with The Washington Post titled Let’s Band Together to Stop Scammers.
Fraud affects everyone, but many of the scams are targeted specifically toward seniors. The one that surprised me was done by telephone and the individuals talked their target into giving them online access to their computer. They would say there were calling to update the software or trouble-shoot a problem identified with the machine and during the process access the hard drive and steal personal information stored on the computer. The typical result is immediate fraudulent use of credit card information stored on the computer.
My family went through a period of several years where we were concerned that our parents would be scammed. Not only did my Mom seem to misplace her purse weekly, but we had one instance where my Mom called my sister (who is a lawyer) at 2 a.m. in the morning worried about some home improvement contracts she signed. For the same work, my Mom had signed one contract for $800 and another for over $5,000. We assume my parents forgot they signed one contract and hired a second company to handle the repairs. When I arrived the next day, my Mom had forgotten the call and it took a while to uncover the two contracts. We were lucky she told one of us about it and we could intervene to help.
There are so many types of scams, but in general it seems that when in doubt, you should check it out. Never give information to someone over the telephone asking for personal information. AARP has a Fraud Watch Network that is free. You can enroll online and receive both electronic information as well as updates in the mail. The crooks are crafty and have made stealing our identity and money their full-time job. Forewarned.
In facing the loss of my Mom’s recognition of me, I’m left to wonder how I will manage through the final years of my life. I have felt a weird shift to my psyche now that the woman who I am the adult caregiver for, no longer knows me. She politely accepts my help and quizzically looks at me when I arrive with a case of Coke. I can tell she is wondering how I know she likes Coke when she has no recognition of me. Thankfully, she is gracious when I offer help but finds some of my requests a little too personal and politely rebuffs my suggestion. I am moving into another new phase of this hideous disease and learning to adapt.
I’ve been thinking about one of the gifts my parents gave me when they wrote a personal letter about the end of their life. They did it when they were in their fifties. Today, this falls under the description of an ethical will. There are many varieties and definitions behind this document. I consider what my parents did for me an incredible way to remind me of their values as well as encourage me if something were to happen to them. I was 20 and still in college, but was the last child at home over the summer and under their roof and care. During this time, my parents were traveling the globe. It was part of my father’s job. As the military spouse, my Mom was expected to make the trips with him. My parents wrote up their personal wishes should something happen to them on one of their trips. My Mom would always remind me where the hand-written letter was and that they left a blank signed check in the envelope. It wasn’t the will or durable power of attorney, but a note that expressed their love and hopes for me.
One summer, my Mom sat me down with the envelope and went over the information with me. She really wanted me to know how to manage should something happen to them while I was still in college.
I’m amazed at how much the school of life has educated me. I watched both my parents deal with a parent who had dementia. I know they never expected that fate would befall them. When it was time to look at their Durable Power of Attorney and Medical Directives, I realized what a gift those earlier conversations were. These documents don’t really cover the variety of decisions you will face as a caregiver. We have had to make many audible calls in the care of my parents from choosing to forgo chemotherapy to moving my Mom into a new community focused on memory care.
I was lucky to have had so much time with my parents to absorb many of their personal beliefs as an adult. One document that can help provide some guidance to family members for care decisions if you can’t make them yourself is called Five Wishes. It’s written to stand as a legal document, so if you have estate plans in place, please consult with your lawyer. If you don’t, it might be a good place to start. Recommended.
A year ago today, my Dad passed away. While he had Alzheimer’s, he died from a tumor on the back of his tongue. It was a harrowing experience, but I knew it was a blessing that the cancer seemed to take him so swiftly. I miss him, but I missed him when he was still here but the Alzheimer’s began to steal parts of him away. When he was here, I could visit him, chat and even get a hug.
A few months after his death, I was suddenly ten pounds heavier. I don’t gain weight easily and have a pretty solid tennis habit with regular weekly exercise. The swift change surprised me. I started to count calories and charted my exercise. Nothing changed. I started to think about the weight as my “grief fat.” I desperately wanted to have both the fat and grief gone.
It hung around my middle and plagued me, seeping out at inconvenient times, just like my grief.
Some girlfriends were chatting about a “metabolism” diet and I figured I would give it a try. I had moved into a period where I was just too busy to eat well, regularly. I would eat breakfast early, then lunch at 3 PM ruining dinner and then would graze before bed on dinner. Had I messed up my metabolism or was it just age sneaking up on me in inconvenient ways? We started the diet together and doing it with others definitely helped me. I started to pack meals and snacks and made sure I ate every 3 hours. I made it through the four-week plan and emerged ten pounds lighter. I’m pleased that even after the diet ended, I continued to lose a few more pounds.
I’m relieved to have lost my “grief fat” before the anniversary of my Dad’s death. As I hit the one-year marker, my grief lingers, but I’m quicker to recover as I reflect on his legacy and all the wonderful attributes of him that live on in me. Encouraged.
I’ve had the suspicion that my Mom doesn’t know my name anymore. She used to use it and hasn’t done so in over a month. When I arrive, the woman who runs a day program for resident’s with dementia is taking a walk with my Mom.
When my Mom sees me she smiles and I get the typical “Hey, I know you.” I respond, “Hello, Mom” and she quickly replies “You are my daughter?”
I knew this day would come. She is quick to follow me back to her apartment when I tell her I brought her some chocolate covered strawberries.
She spends little time in her apartment now. She will usually tell me she doesn’t know where it is and asks me if I will walk her back to her apartment before I leave. She is always asking what she can do. She craves activity.
Thankfully, the community started a program that runs from 9:00 a.m. to 3:00 p.m. that has been keeping my Mom busy. She hasn’t been spending days in bed which is what she used to do before the program kicked off. She doesn’t remember that she’s in the program or what they did that day, but it has made a difference in my Mom. I’m not sure if she’s more accepting because of the disease-state, the medication, or she has enjoyed the benefits from accepting help from those around her.
I know the biggest factor for my Mom is my familiarity with her likes and her routines. While she doesn’t recognize me as her daughter anymore, knowing how to interact with her and avoid trigger points has made all the difference in the calm we enjoy together.
I knew this day would come, but knowing it would arrive doesn’t make it any easier to accept. Bummed.