One Step Forward, Two Steps Back

Our family was not prepared for the “cyclical” aspect of my mom’s vascular dementia.

When she moved in over a year ago, we were uninitiated with the cause and progression of her disease. Heck, we were not even really aware that she HAD dementia.

Mom had always been a bit insecure about her decision-making, and I always had a part in filling out paperwork, etc. But shortly after moving in with us, when she began asking the same questions over and over again and looking to me or my husband John to help prod her along with all daily tasks, we realized that things had gone very much awry for her.

This took some adjusting on all our parts. The outings I had pictured for the two of us, short trips to the mall or the diner, really weren’t on Mom’s to-do list. She made it clear that she was happiest at home, and would travel only to visit relatives or if the rest of our small family was heading out to dinner and we pressed her to join us.

And my husband John and my young adult children were used to the “take charge” Josephine, not the somewhat sad and confused lady who now spent most of her day either watching TV or in bed.

Then one day a few months after she had moved in it appeared that a miracle had occurred. Mom seemed to have “come back” to us. She got up early for breakfast and was sitting at the table fully dressed and ready when I came in from gardening. She was reading the Daily News, to my surprise. A short while later, she asked where her crochet bag was, since she wanted to continue working on a project. (Sadly, I had thrown it away because just a few weeks earlier she had insisted that she could not remember how to crochet and had no interest in re-learning). Since I am such a trustworthy and honest person, of course I lied and told her that I could not find the crochet bag but would continue to look. Meanwhile I distracted her with time spent sitting on the porch and talking about the old days, then a nice dinner during which we all had a great conversation. After dinner, while Mom and John watched some sitcoms, you know what I did. I raced over to AC Moore and bought a six skeins of yarn and some crochet needles. I was determined to start a project that she could continue. “Wow,” I remember thinking as I weighed color options for the yarn. “She’s actually BACK!”

The next day I was surprised when Mom slept in again instead of getting up earlier for breakfast. Well, at least I had some time to crochet a square that would be the basis for one of the small blankets she once enjoyed making. At 11:30, her usual waking time, I had to rouse her from her sleep. “What time is it?” she asked. “It’s late, mom — 11:30.” “Oh,” she said. “Am I going to eat breakfast or dinner now?”  Undeterred, I brought up the subject of crocheting after breakfast when she was sitting on the sofa watching Family Feud. “Do I crochet?” she asked. “You used to,” I said. “I started a project, and thought you could finish it.” “Nah,” she said. “I really don’t want to.”  And with that she closed her eyes for a catnap.

A similar forward and back scenario happened at least twice more before a did a bit of research online. This one step forward, two steps back conundrum was actually a vascular dementia THING. I was so relieved to learn that we were not the only ones facing this unnerving situation that I almost cried. It was heartrending, for sure. But it was part of the disease that was now part of Mom. We had to accept it.

And so two weeks ago when I heard my mother heading down the stairs for breakfast fully dressed at 10 a.m., I was prepared for the rise and the inevitable fall. She did not disappoint, verbally sparring lightly with me over breakfast and once again reading the Daily News and asking me pointed questions about some of the stories. “Is that Donald Trump’s real hair?” she asked, and we laughed.

She had an appointment with the cardiologist later that day, and she charmed the lovely doctor’s assistant and complimented her hairstyle. When the young lady completed the EKG and left to fetch the doctor, my mother commented on how wonderful it was that this nice girl had completed all of her schooling and had a good career.

Later that day I reminded Mom that she was getting a haircut the next day. “Hmm,” she said. “Do you think Paul can give me a perm?”

“Aw Ma, a perm will take hours,” I blurted out, immediately regretting it. “You’re right,” she said. “Forget it.”

“No no no,” I said, totally backtracking. “Let me call Paul — if he has time to give you a perm, you can get one.”

“I don’t know,” Mom replied. “He might feel bad if he can’t do it.”

“He won’t felt bad,” I insisted, practically sprinting toward the phone. “He’ll be honest.”

“If he has time to give you a perm, you should totally get one!”

For some reason I turned around to sort of gauge what my mom’s thinking was, and I could see the wheels spinning.

“What is it, what’s wrong?” I demanded.

She took a second or two to answer me.

” I don’t really want a perm,” she admitted. “What I want is a short haircut, and I know that you don’t want me to have one.” And she looked sad and beaten down.

Wait, what! My friend Jamie Turner would call this an AHA moment. I thought that I might never have one, and here it was staring me in the face.

So here is the truth that hit me hard. My mother had basically placed her decision-making about her daily routine in my hands. And I took that to mean that she needed me to make ALL of her decisions. Even ones about her hair, which I had decided needed to be grown longer to better flatter the shape of her face.  And what she had ended up with under my guidance  was an unkempt bob hairdo that was flat on top and wavy at the ends — what is known as the ‘pyramid” look. It had to go.

So I told Mom that she should and could get a short haircut, and she was happy. So happy and relaxed, in fact, that she allowed me to subject her to one of my favorite movies — “Airplane.” (And it was all fun and games and a lot of laughs until I forgot to fast-forward through one crucial scene — “Why was that woman in bed with a horse?” Mom demanded.)

The next day, the day of the haircut, Mom slept late again. It was business as usual, back to the down cycle, with a bit of backsliding. But this time I was prepared for it.

Although the shop was busy and I managed to arrive ten minutes late to her appointment, our wonderful hair stylist Paul made sure that mom received the most beautiful short haircut on the planet. The three of us were flipping through magazines in search of the perfect style when I spotted a photo of the actress Ginnifer Goodwin with a short pixie cut. “That’s adorable,” I said. “Do you think it would work on mom?”

“Of course it would,” Paul said. “Ginnifer Goodwin has the exact same face shape as your mom.”

“She even looks like your mom,” Tom added. Which, incredibly, she really does.

Mom ended up happy that day. And so did I. Happy and proud. Happy that I had let mom take charge of her hair again, happy once again for the kindness always shown by those surrounding us, and proud that she is just so stinking beautiful even at the age of 88.

Back and forth. Up and down. Lessons learned.

It’s part of aging and part of dementia, and — let’s face it — part of life.

 

 

 

3 thoughts on “One Step Forward, Two Steps Back

  1. “One Step Forward, Two Steps Back” – Comment

    After reading your about your days with your Mom, I find myself wondering if I am at the same juncture.

    Today I went to spend time with Mom. I pull up at the house and during the summer look in the backyard first before ringing the door bell to see if Mom is in the yard. She’s not, so I ring the front doorbell. After about two minutes, she comes to the door, doesn’t open it and then yells through the door to go to the backyard door. So I go to that door and wait for another two minutes. Finally Mom come out with her broom, orders me to sit down in a chair in the sun while she says she needs to clean the yard. Mind you she came out with he hair all done up, old white shorts, some weird looking top and black flat shoes that are scotch taped from the toes to her legs. She sees me looking at her feet and explains to me (as if this explanation is really plausible) that these are her gardening shoes. Do I ask about the scotch tape wrappings past her ankles? No, I am told again to sit down (as she locks the backdoor that is three feet away from us and when I ask her why she is locking the door, she says someone will break in…I guess with me sitting a couple of feet from the door) and wait while she gets her chore done which is lifting 50 pound pots to be put on their sides so that they can be swept out. So I get up to go and help her. No…she doesn’t want my help and orders me to go sit down again. Because? She is the boss of her yard. While she is working, she asks me six times if the men have come to cut her grass. No, I say all six times.

    The good park of this story is that Mom’s entire house is white and I do mean everything. Every piece of furniture, carpets, inside and out and even the two cars (although there is only one driver since Dad passed away). So last year she painted the entire concrete patio white, the entrance concrete white, the concrete circle where the table and chairs are…white, as well as the outside front concrete white and then covered it with that green grass like carpet which now has four white pots trimmed in green to match the grass carpet and each one has one rock in it. So……now all of the concrete is practically blinding in the sun and it’s also chipped and she is obsessed about making it clean.

    When we go into the white house, where there are things that are dirty in places where they would never ever have been ordinarily dirty. Of course white shows everything. I ask her if I can help her clean. No…she does all her own cleaning and she likes cleaning. She then asked me twenty two times if I wanted something to eat…and ran down a menu from sandwiches to donuts, ice cream to lemonade, cookies, water and tea. (I was drinking tea that I brought with me from Dunkin Donuts and said no thank you twenty two times.

    I ask if I can help with paperwork. So Mom brought down a bill from the doctor which she announces that she is not paying. Medicare paid a small amount and the majority was probably counted toward her year’s deductible. So while I’m trying to read the papers, she is grabbing each pieces telling me that I’m going to lose the papers. There were four pieces of paper and two envelopes. It took her five minutes to give them up to me to allow me to take them from the house to investigate what if anything she needed to pay her doctor.

    Then she topped the day off with telling me she opened the door to two strange men with clipboards who wanted to come in and speak with her about Medicare. Those two doors are like Fort Knox and she pins all of the house and car keys to her bra. So it actually takes her several minutes to open the door when I’m there and she is usually yelling through the door the whole time and I can hear her quite clearly. So why she would open the door to two strangers is beyond me and she informed me that this was the time that Cherry Hill had two men trying to break into elderly residence’s homes.

    So now her hands and wrist hurt her and she has difficulty turning the key to get her car started. However she insists that she likes to go out and asks strange men in parking lots to help her turn her key and get her car started. Last year she left the scene of a parking space accident which she caused by bumping some man’s car, he got angry and she told him that he was acting like a baby and that she did not hit his car. She drives a huge boat of a car and he had a Hyundai. Then she proceeded to go to Dollar Store in Moorestown and peek out the window as the man notified the police, who came and had to go into the store to get Mom. So then I had to go over to take her to the Moorestown Police Station to get the paperwork to which no charges were filed. So essentially she left the scene of an accident by going shopping. Then she tells me that sometimes her car “jumps”.

    She had her colonoscopy last month, came up with a clean slate and now she is worried about making an appointment for her next one. When I informed her that it was ten years away and she shouldn’t worry about it, she accused me of not caring about her health. I took her for all her appointments for the colonoscopy and she told everyone in the waiting room what a wonderful time she had getting her colonoscopy. I told her I didn’t think she was going to need to go to another that she was 88 years old. What if they find something she asks? (ten years from now) I don’t think they would operate if that’s what you are asking. Why not? I just said do you think you’ll still be around at 98 or 99? What am I supposed to say?

    So where to I go with all of this? She informs me that no one will take her two cars away, she needs no help food shopping or with any chores and she can do EVERYTHING herself. I feel insane most days coming from the house. I don’t know what to do. The scenario that I think may happen someday is that she will come down the stairs in her scotch taped shoes and slip, fall (won’t wear one of those help necklaces) and won’t be able to get to a phone or let anyone in and she’ll die on the floor. I don’t have a key because she won’t give me one because one time my sister (who is now passed) took a picture from Mom’s closet and now she doesn’t trust anyone. The place is sealed tight like Fort Knox (or a 2nd floor walk up in N.Y. city with six locks on the each door) and the windows are covered with three or four layers of blinds, sheers, curtain and drapes. I wouldn’t even be able to see her laying on the floor. I do have a combo to the garage but the indoor is locked up tight as tight can be. So I can only stand in the garage.

    What do I do? I have no answers and I am at a loss. I don’t want to ever get like this. The apple doesn’t fall far from the tree. Is this how it’s going to be for me? How do you give or get help for someone who needs help but won’t take it?

    1. Jill, my mom and I were in a similar “cycle of misery” before we moved her in. One expression that I have used a lot lately is “that ship has sailed.” I know that it is difficult to face the fact that your mom is no longer capable of living alone. Yet your post is saying exactly that, underneath all the pain and discomfort and exhaustion and disappointment. You might find, as I did, that once steps in that direction are taken it is not as scary as it once seemed. I am praying for you. XO.

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