Is our life the sum of our memories?

memoryfeatsIn a TedTalk, Joshua Foer shares a talk on “Feats of Memory Anyone Can Do”. It’s an interesting talk on the evolution of memorization, and points out to us how the state of our memory has declined, because we have outsourced so much of it to books, notes, our phone … the everyday tools we use.

If you think you are too old to learn new tricks, spend a few minutes watching his popular TEDTalk. We have a lot to gain if we spend a little time honing our memories and you and everyone around you benefits. Inspired. 



The unmistakable scent of Mom

momsstuffOne of the best gifts my mother gave to us was the summary of her funeral wishes that she wrote up more than 30 years ago, and had revised in early 2002 when they updated their estate plan to include a trust. In her guidance, she mentioned the dress she wanted to be buried in. Had she not done that, I just realized she might have been buried unclothed–or it least not in something she loved.

Over the course of our journey and this blog, I have told you about the two times we have moved mom. First, when we moved mom and dad from their Independent Living residence into Assisted Living. Then after dad passed away and Assisted Living was no longer the best place for mom, we moved her into a Memory Care community. During the first move, we took special care to find and store the dress she wanted to be buried in. Knowing that in advance and being able to plan for it is helping me move toward her life celebration service easier. I don’t have to wonder, squabble with siblings about the choice, or feel guilty because in the overwhelming process of one of the moves, we ended up donating her silk ball gown thinking she would never again wear it again.

Today as I drove mom’s clothes to the funeral home, I realize the car is filled with the scent of my mother.  It has been years since I smelled the mix of Aqua Net hairspray and Charlie perfume. I start to wage a battle of my will over my tear ducts. I lose momentarily and then begin to fill my mind with all the wonderful memories of mom from my 50+ years with her.

My grief over the loss continues to battle my relief and understanding that mom’s journey on this planet had run it’s course. Now is the time to revisit all the great experiences, lessons, and memories that contribute to the legacy of mom. Cherished.

How Activities Benefit Individuals with Dementia

bingoOne of the things I appreciate about my mom’s new community is the depth of knowledge the surrounding staff and volunteers bring to help deal with a wide variety of individuals with varied dementias. I also know we are lucky to be able to afford to have mom in a community where she gets to socialize and her days are filled with activities.

When I visited the community during Bingo, the woman leading the activity exudes positivity and joy. She also shares many funny stories about herself and manages to recognize the residents during her “bingo calls.” The amount of confusion by the players at our table is noticeable, but it’s managed so well that many of them made it to “BINGO.”

I was most intrigued by two women at my table. The first was the woman sitting next to my mom. She either can’t process the letter and number combination or hear, so after EVERY call she asks the caller to repeat the letter and number. The caller repeated it patiently at her request but by the time she turns to look at her board, she has forgotten the number. When it’s repeated to her, she immediately refuses the information. When she got close to having Bingo, she would clear her board and then comment that the game is “boring.”

The second woman who most interested me was my mom. She could easily follow along and in-between putting down her chips tried to help the first woman I mentioned. Halfway through, my mom suggests that we just need to let her be and have fun however she wants to play this game.

When we leave, my mom tells the PDA pushing her wheelchair to “get Kay up here.” It’s the first time in several months that she has used my name. It’s easy for me to see that my mom is adapting to the community and now she is benefiting from the ongoing activities.

I marvel at the constant change in my mom and it’s not always bad. She has no short-term memory and can’t even recall most details about her past. She still knows she had 4 children and our names, that she was married to my dad and that he has left this planet. Maybe that is all that is important now. Soothed. 

Trying to keep Mom kempt

hairrollersMom is now sleeping in her clothes. When I’ve gotten her into the shower, I realize how hard it is for her to dress and undress. I understand that she wants to manage, but in this area, she won’t allow me (or anyone else ) to help most days.

I wonder if the days that she won’t allow me to help are days she doesn’t really recognize me anymore.

I scheduled a hair appointment but when they tried to get her to her appointment she refused to go. Maybe it would have been more successful if I was there. I can’t always be there when she needs to dress, shower and get her hair done. I hoped it would be easier for her community to help, but now it just feels like another reminder that Assisted Living isn’t the right place for someone with memory issues.

I return the next day and walk with my Mom to the beauty parlor. It’s just the next building over through one connected hallway,  and it takes us almost fifteen minutes to walk there. The lady who has been doing my Mom’s hair every other Tuesday for several years greets us and she says she can get her in this afternoon. She will come get my Mom if she doesn’t show up. I’m hoping that my Mom will go now that we have her scheduled with her regular hair dresser. I’m thankful that she is willing to go pick my Mom up from her apartment and already knows where she lives (having had to do this before). I write-up an appointment card and try to get my Mom to stick it in her pocket. She wants to hold it to help her remember.

When we get back to her apartment, she asks me what she’s doing today. I run through the activities. When we get to the hair appointment, she asks if we can walk there so she knows how to get to her appointment. When I tell her we just did that, she responds, “I hate this, I should know that we just did that.”

“I know Mom. It’s okay, you have lots of friends around you who will make sure you get to your appointment today.”

I have been working harder to coordinate with the floor staff. But I know my Mom will just sometimes refuse to shower, change clothes, get her hair done … it takes a village to age them, as well as raise them. Reminded.

Where are you? stings more now

spiralstairA year a half ago, I posted an article entitled “Where are you?” — and I’m still feeling the same guilt — only magnified. At least the last time I went through this stage and wrote about it (it is a recurring issue) my Dad was there with my Mom. Now I know my Mom is by herself. I also know based on my visits and from the staff reports that she is not doing very well in the community.

I get a call two hours after I visited asking me where I am and when I will be arriving and there is something frenetic in her tone.

She will go through these cycles. I imagine her decline is much like a child’s development, but in reverse. When my son was 4, someone shared that kids develop in an upward spiral — two steps forward, one step back. In my Mom’s case, she goes two steps backward, and one step forward.

When she asks me when I’m coming out — I ask her if there is something she needs instead of telling her I was just there and we went to the grocery store. She asks if I can hold on, and I wait as she roots through the kitchen and comes back. By the time she returns she picks up the phone and out comes gibberish. I ask her if she has Coke.”Wait,” she asks. She returns and this time tells me she has Coke. I transition the conversation to tell her I’m on my way to pick up my daughter and what we will be doing this afternoon. 

I fight my logical mind and remind myself of the a poem someone shared with me a few months ago that I renamed the Dementia Request. Each time I gain a little more understanding. Absorbed.  

Dementia Request

Do not ask me to remember, don’t try to make me understand. Let me rest and know you’re with me, kiss my cheek and hold my hand.

I’m confused beyond your concept, I’m sad and sick and lost. All I know is that I need you, to be with me at all cost.

Do not lose your patience with me, do not scold or curse or cry, I can’t help the way I’m acting, I can’t be different through I try.

Just remember that I need you, that the best of me is gone. Please don’t fail to stand beside me, love me ’til my life is gone.

Where is my gold necklace?

gold necklaceFor almost two months my mom has perseverated on the absence of her gold necklace. My mom hides her valuables and then forgets where she puts them. She jokes about it and acknowledges she needs to stop doing this, but she cannot help herself.

Almost 30 years ago, my mom bought a 2 foot long 22k gold chain. It’s beautiful. Around Thanksgiving she mentioned it was lost. We looked all over their apartment at the retirement community and then made more than 3 trips to the town house to specifically look for the gold chain. When my sister visited, she had helped my mom search in both places.

Right before the Christmas holidays, I introduced them to the graduate student who has been helping me shuttle my children as well as help me with my business.  My parents adored her and allowed her to drive them to the town house. That only lasted two days before they rejected the idea of “outside” help.

After the holidays, my mom would call daily asking me to take her to the town house to look for the gold chain. She had no recollection of visiting to look for it any of the numbered visits. I started to leave notes on doors after we had looked through a room but she would angrily tear them off and begin the hunt anew.

I am sympathetic to my mom’s angst, but she was wearing me out. On many of the trips, my mom would share her own frustration in having two places. She lost her wallet, purse, calendar and now her gold chain, and having two places to look was exasperating.

We are approaching the one-year anniversary when the psychologist recommended they move into the retirement community full-time. How much easier their life would if they had accepted that recommendation. Exhausted.

Can we order one of your books?

MemoryBanc RegisterOn the past few visits with my parents I have taken phone calls that were orders for the MemoryBanc Register. My mom let’s out a “hot dang!” then asks “can we order one of your books?”

My brain reels. Try as I might, I’m the kind of gal who has the witty response a day after it would have been useful. My defense for this has been to stick with the truth. So I tell my mom I already have a book for them.

Recently, my mom has been appreciative of the help and telling me now how much she is struggling to put information together. I have never shared with them they have been the inspiration for my business. She has no idea how many MONTHS I spent trying to find all the information on their accounts. She doesn’t know how frustrating it’s been to try and help them. My parent’s do not understand how many things they were failing to manage (bills, household maintenance) and many simple fixes their Power-of-Attorney could have fixed were derailed.

The blessing of the Internet has been that I could set-up online access to act on my parent’s behalf. I had enough personal information and knew what their PINs would be. It’s been over two years since she called me to ask how to put money in the bank. Just last week we uncovered another bank account and a life insurance policy. It’s no wonder that the Washington Post reported that there is over $32 billion dollars of unclaimed funds are sitting in state treasuries just waiting to be claimed.

It’s time to put the book in front of my parents (or a summary at least) so they can see, touch and feel more connected to their own estate. Documented.

Getting lost on the way to dessert

eclairI’m confounded by what sticks and what doesn’t when it comes to my parents memory. Some days my mom brings up a specific detail from recent events (that I believe to be true as well) and other days it’s my dad’s turn to be the memory master.

For six months, since they lost their licenses and then the cars, I have visited my parents nearly every Sunday to join them for brunch at their retirement community. It’s always the same, with a few minor tweaks to the meat on the carving station.

Each Sunday, my mom will explain how we get food as if we are first time guests. On our last trip, my dad got lost on the way to the dessert bar. We were sitting right next to main buffet gallery and my mom could see my dad had forgotten why he is standing up and what he’s looking for.

I jump up and join him. I tell him it was nice that he was looking around for extra napkins for mom, then invite him join me on visit to the desert bar. We both go for the eclairs today. Filled.