Don't let the bedbugs bite: Or, what not to say to someone who has Alzheimer's

Are those my blue slippers?

Yes mom, those are your blue slippers.

She asks me the same question nearly every morning since she got the slippers this past Christmas.

Those are nice slippers, she says as I help her get dressed for the day.

And they are. I went online to find a perfect pair of spa slippers in her favorite color with a snug Velcro closure and rubber soles to prevent slipping.

By the time she is dressed her attention goes back to the same pair of slippers.

Are they yours?

No mom, those are your slippers.

Those are nice slippers.

It is as routine as the rest of the day for mom and me right down to the last words we share as I tuck her into bed.

Good night mom, I tell her as I flip the switch darkening her room, and then the next one that leaves only the nightlight a glow in the hall. As I walk away she says, Good night… pauses… sleep tight, don’t let the bedbugs bite!

She recites the rhyme nearly every night like I am still the little girl who was certain that hairy monsters lived under my bed, the kind that would grab me by the ankles and yank me into the terrifying bedbug underworld if my legs dangled below the bed springs after the lights were out.

I used to give mom a kiss on the forehead and say, Good night, love you.

Until one night half way down the hall I heard her talking to herself. I stopped to listen anonymously.

She kissed me on the forehead… pause … said she loved me… pause again… who was that?

There was a period in her cognitive decline when my mother would know enough to be devastated by that missing critical detail – my name. But that night she blurted the question into an empty room of purple shadows genuinely seeking clarity.

A few days later mom was watching television while I sat across from her on the sectional. It was around the time she typically would go to bed. She had nodded off for a bit and was startled awake by the cat climbing onto her lap. She looked at me and asked, Is there anyone here who can give me a ride home?

On the heels of the bedtime bewilderment over who was kissing her goodnight and who loved her, the question was a disturbing signal of her further decline. It caused me to do something that annoys me to no end when other people do it.

It still ceases to amaze me how often old friends and relatives she hasn’t seen in a while move in on her in an uncomfortably close way, especially when you consider they are for all intent and purposes in mom’s world strangers, and say, Do you know who I am?

Or even worse, Oh Shirley you remember me from the bridge club right? Frank’s wife? So I am. . .? Like it’s a Jeopardy question.

To spare mom’s dignity I jump in with the answer when I know it. When I don’t the old friend is stuck having to remind her and mom pretends to give a shit. I actually love watching her finesse those moments.

Asking, Do you know who I am? should top the list of questions never to ask a person suffering from Alzheimer’s or any kind of dementia. That is unless you are the primary caregiver, the one who has lived with the person since they were diagnosed nearly a decade earlier, and the one who has been the person’s daughter for 55 years. That person has a special right to know how far her mother has drifted from reality.

So on that night, as mom was asking me to call her a cab to go home when the bedroom she had been sleeping in for the last six years was ten feet away, I needed to know.

After getting her into her nightclothes I sat her on the edge of her bed and asked the forbidden question.

Do you know who I am?

Ha! She was indignant and asked the question right back to me.

Do you know who I am?!

She may have forgotten a great many things but not her stubbornly defensive nature. I could see the wheels turning. She knew she should know the answer but was stalling for time.

Well, I responded, I am pretty sure that I am your daughter. So now can you tell me who I am?

Grinning she looked up at me and said, Well… I am pretty sure that you are I.

True on so many levels it was a winning answer if I ever heard one.

I tucked her in, kissed her goodnight, and told her I loved her.

Back to the future

The months, weeks and days leading up to a Mashpee Wampanoag election have become so contentious to the point of being toxic to our community. What used to be challenging in the family debate kind of way has become vindictive and antagonistic leaving deep and lasting wounds.

So with one week to go I began a self cathartic exercise of remembering ancestors and those gone on too soon ~ a look back before moving forward. I shared them not to sway anyone's vote in one direction or another, but to remind my Tribal family of those traditions and stories that bring us together rather than tear us apart.

Sunday, February 1 ~ Rabbit, rabbit

Day one of WTC election countdown honoring the vision of our ancestors. I'm always inspired by my great-great-great-great grandfather Blind Joe Amos, our self schooled missionary who never gave up believing in our independence and human rights at a time when we were still considered savages. He led the revolt to reclaim our precious meetinghouse. Can you imagine our community without it?! I'll be looking for that kind of passion for preservation when I cast my vote. ‪


Monday, February 2 ~ Groundhog saw his shadow

Six days left and I am remembering cousin Randy who we lost one year ago today. In his all too brief life he gave us many gifts, his beautiful children topping the list. He taught us to laugh at ourselves and in his parting days to forgive each other because none of us are perfect and it takes wisdom and courage to admit when you are wrong. We miss him as a family and as a community. ‪



Tuesday, February 3

Five days to go. Remembering Gertrude Mye (Haynes) Aikens, Princess Evening Star who died in March of 1996 at the age of 98. Hard to believe a whole generation of Wampanoag are growing up without her influence. During the early part of the last century Princess Evening Star and a league of traditionalists including Clint "Chief Wild Horse" Haynes, Mabel "Nakoomis" Avant and Billy "High Eagle" James and many others defied government initiatives to effect cultural genocide on the Wampanoag and established tribal meetings and the Wampanoag Nation Powwow right here in Mashpee. As a child I was always thrilled to go to the gift shop and pageants at her South Mashpee home and hear her stories. Had it not been for her efforts, and the efforts of her generation where would we be today? I will always remember her for her beauty, pride, and the determination she willed to all of us to maintain our culture and traditions. ‪


Wednesday, February 4

Four days to go. Who can forget chief "Sly Fox"? Vernon Pocknett Sr. may be best remembered for his determined fight for our hunting and fishing rights but I will never forget his testimony during the infamous land suit in 1977. As he was being cross examined by famed attorney James St Clair (same scoundrel who represented Nixon in the Watergate trial represented the Town of Mashpee) Vern kept referring to his people as "the tribe" a key contention of the hearings, and St. Clair would say to the judge, "your honor, strike that from the record." But then Vern actually turned the tables on the litigator when St Clair implied that Vern and others might not be Indian because of mixed race. Vern turned to the judge and said, "Your honor, strike that from the record." 
And he did. ‪

Thursday, February 5

Three more days. The legacy of Loretta “Smiling Wind” Jones, beyond her own beautiful brood of children and grandkids, is every dancer, every little boy and girl, every tiny tot parading into Grand Entry. Before there was Indian Ed or formal Tribal youth programs, before we had money for fancy fringed deerskins or satin shawls and ribbons, we had Loretta. She instructed us to make regalia out of anything reasonably close and adorned dresses fashioned from vinyl fabric to odd lots of cow hide with chunks of shells attached with some kind of bondo that predated the invention of a glue gun. No child who wanted to participate in Powwow would be left out if Loretta knew about it, and along with my mother Shirley Peters the two of them would prepare us for the big day banging out a beat on a box of Quaker Oats and steppin high around my dining room table. They were comical! But there was no question we were powwow ready thanks to Loretta and mom. Miss her terribly, and so does mom.


Friday February 6

Two days to go. I remember when general meetings were held in the basement of the old tribal office and dad would ask for a prayer to start the meeting then assign some unsuspecting member who might have been nodding off or otherwise not paying attention. We all would chuckle then after a proper blessing was offered dad would say, “and now for a poem,” only he pronounced it poeweem. There would be sighs and clamoring to get on with the meeting and chairs shuffling. But then everyone listened with great intent because they really loved dad’s poeweems and waited to hear if they would be mentioned or if some familiar story was to be told. It was a wonderful way to start a meeting. Russell “Fast Turtle” Peters came from a long line of tribal leaders including his brother Supreme Medicine Man, John “Slow Turtle” Peters. His sister Clara “Dancing Pony” Peters and father Steve “Happy” Peters were among the many tribal members who served as town leaders, an early form of Tribal Council because back in the day all the Selectmen were tribal members. Miss you dad. Love and admiration to you all.

Saturday, February 7

One day left. It was the second annual Wampanoag Ball. Sons of Italy was packed when Melvin made an entrance in his cowboy boots and Stetson hat adorned with feathers, his denim attire formalized with a fancy vest. He was ready to do what he did best, dance. But when he saw me in my ball gown opening oysters to keep up with the demand he jumped in to help. I never imagined it would be the last time I would see him. Melvin “Quick Foot” Coombs was many things, a proud Wampanoag, a champion traditional dancer, a role model and teacher to our young ones, and a generous friend to all with a legendary sense of humor. Standing in a long pot luck line at a social I was stalled in front of Melvin who insisted I have a bite of his stew which I did and it was delicious so I asked what it was. “Road kill raccoon!” He laughed, as I am sure the look on my face was priceless. Many of us still have a purple ribbon for justice for Melvin. That was not to be in a Rhode Island court, but another kind of justice lives on in our hearts and memories and the love for a man who loved Mashpee. 

Sunday, February 8 ~ election day ~ WWAD

Today is the day and this woman will be in my heart and mind as I consider our future. Quietly, respectfully and deliberately Alice Mae Lopez did so much for so many never expecting anything in return let alone recognition. But since her sudden passing four years ago it is all we can do to remember her. Posters and T-shirts bare her likeness and there will be streets and even a statue is planned in her memory. All the stuff she would shy away from if she were here. But the kind of stuff that is necessary so we never forget her influence and gifts she passed on. She was a traditional role model and as an advocate for the Wampanoag, she was a warrior. Like it or not Alice, you a legendary. To me she was a dear friend, like a sister, and even while she was younger by a few years her wisdom was a thousand years old. I was always grateful for it. To this day when faced with a hard choice I ask ~ WWAD ~ what would Alice do? Then I follow her instructions:
• Anything is possible
• Believe in yourself
• Lead by example – Don’t preach
• There is goodness everywhere. Finding it makes evil easy to recognize.
• Share. If you have two blankets you have one too many
• Dance, just dance
• Love with a dose of caution
• Smile, hers was a winner
I miss her every day but am so grateful to have had her in my life. Today I will simply follow her lead. WWAD.