Feet Like Stuffed Calamari

My mother’s feet look like stuffed calamari before they get thrown into the gravy on Christmas Eve. The pinkish-white skin is pulled taut over the top of her foot and up past her ankles. They’ve been like this for a month now and though I’ve agreed with all the steps the rest home has suggested, getting my mother to comply is a different story.

The most immediate and obvious potential fix is to get my mother out of flip flops and into sneakers. I purchased the suggested neon white and clunky footwear but one look at them and Ma was having none of it. Who knew she was a footwear fashionista. When I asked the rest home to try their best getting the sneakers on my mother, I got the raised eyebrows. “We’ll try Lisa, but you know your mother.” I certainly do.

So we’ve moved to Lasix. Not much movement in terms of the swelling so the next step is to up the dosage to 20 mgs instead of the 10 mgs she is taking. We’ll see how that works.

Third suggestion, and the one that sends shivers up everyone’s spine - get her into those
death grip hose. The floor nurse and I had a good laugh over that. If we can’t get her into sneakers how could we possibly get her into those? (“You try.” “No, YOU try!”)

And here is one of the many reasons I chose this particular rest home - they will not violate the space or the wishes of the resident unless it is absolutely necessary. They are watching my mother’s feet closely, checking them multiple times a day. Whenever the doctor is in house, he checks them as well. If there is growing concern, the level of adamancy with her will increase. Otherwise, she gets to go sneakerless.

As for me, I avoid looking at her feet as much as possible. I hate stuffed calamari.

A Conversation with The Alzheimer's Association

About two days after my last post, I called the Alzheimer’s Association and had a wonderfully informative talk with an advisor from their 24 / 7 hotline. What a great resource! The numbers for those who might need them are:

24/7 Helpline
Contact us for information, referral and support.
tel: 1.800.272.3900
tdd: 1.866.403.3073
e-mail: info@alz.org

I spoke about the dilemma I was facing with my mother – her confusion about where she was going was when it was time to go back to the rest home.

The advisor said that taking her to my house so frequently could in fact be contributing to the confusion because, as we know, Alzheimer sufferers do best when their surroundings stay consistent. However, she was surprised that Mom wasn’t new to the rest home, that it had been 6 months since she first arrived, and hence, enough time to get acclimated to her surroundings, as much as one can with the disease.

Be that as it may, she had three suggestions:

1) Keep mom at the home 6 out of 7 days.

2) When I visit during those 6 days, I must make the visits meaningful, i.e., do something specific with her like play cards, join in on an activity, go for a walk, take her shopping, etc.

3) Take her ‘home’ just one day out of the week.

It has been 10 days and I have not been able to stick to the 6 out of 7 days, but I have done better, taking her here only three times instead of five. I have also made the visits at the home more lively. However, I am finding that mom can do less than I thought. We tried playing cards, and though she used to play every single week, she could not remember how to play gin rummy or any of the poker games.

Our walk to the park where I took Frances was lovely. We watched a young man exercise his Australian Cattle Dog. He had his dog perform many tricks for my mother and she was delighted.

We had a spa day where I took her for a manicure and pedicure. She went through her diaper onto her pants. I had to ask for a towel so that she would not further wet the customer chair. And though she has had a manicure several times, she thought this was her very first. That’s a benefit to the disease. You relive the things you love for the first time over and over again.

But, I have gotten two calls from her this week, convinced it was I this time who needed to be picked up from school. And though she was speaking with me, she was also speaking of me, “Lisa, who is picking up…who’s picking Lisa up from school?”

Again I used Josie and again it worked.

There is no question her Alzheimer’s is progressing. And I’ll get better at trying the suggestions made by the Alzheimer’s Association. It is just difficult not taking my mother to the place she feels most safe and most comfortable. I also find that she can become more delusional when she stays longer periods at the home.

Damned if I do and damned if I don't. There seems to be no right and no wrong to this disease.

North End, Boston - Circa 1960

Mom was in the North End of Boston circa 1960 yesterday. I got a call from the rest home at 3:30p, my blood flowing faster when I saw the number come up on caller-ID. The Director of Nurses, we’ll call her Karen, asked if I had a minute to speak with my mother.

“Lisa, who’s picking Jimmy up from school?” Ma asked anxiously. My brother, Jim, is fifty-two now, but in her mind, he was eight years old.

I thought fast. “Josie is picking him up.”

“Josie? Are you SURE?”

Josie was like a grandmother to us growing up and at our house everyday. But Mom didn’t sound convinced. I asked Karen if I should visit right away but she said later was fine, Ma just needed redirecting.

When I got to the rest home two hours later, Ma was still in a state. The staff was completely focused on her. At least six people, all concerned but calm, followed me into the den where Ma was.

“Lisa! There you are!” Ma exclaimed. "Who’s picking Jimmy up from school?”

“Josie has him, Mummy. He’s ok.”

“But does Josie have a key to the house?”

“Jim is gonna stay with her at her house. He is sleeping over there.” (There I went, getting too complicated).

“Oh,” a thoughtful pause. “Will she let him watch TV?”

I continued to assure her her son was fine and once she became semi-convinced, I tried to distract her with an outing...supper and a visit to a pet-sitting client. She had her favorite hamburger and fries and then we called my brother.

“Hi Jim!” I said to him, sunshine in my voice. “Ma wants to be sure you got picked up from school and I told her you were safe with Josie and sleeping over there.” He caught on immediately.

I could hear him telling our mother that Josie had cooked macaroni and meatballs for him and that she was in fact allowing him to watch TV. My mother had a contented smile on her face when the conversation ended and my stomach flew to my throat. I wanted to vomit on the spot from heartbreak.

“See Ma? He is fine.”

“So that phone has the 2378 number on it?” North End, Boston - my childhood home on Jackson Avenue.

“Yup. And we can talk to Jim anytime right from it.”

Ma was finally completely relaxed by the time we returned to the rest home a couple of hours later. She got her meds, we picked out a nightgown, and I tucked her in with a kiss to her fuzzy head.

“Night Ma. I love you.”

“Alright, Lisa. Go slow. I love you too.”

I Just Don't Know What to Do

Sadness and confusion. Constant feelings I carry with me like an oppressive sack that hangs around everywhere, getting fat like Santa’s bag of presents. I can’t read a book or watch a movie. I struggle to make plans with friends. There is no space in my head for the frivolous and the enjoyable. When my mother does poorly, I do poorly, and this week was a beggar man’s one.

Mom was here on Tuesday and Wednesday. I visited her on Thursday and I took her to a social daycare program yesterday, one she attended for six months prior to moving into the rest home. She made lots of friends there and everyone was happy to see her. She remembered almost no one.

Mom has been happy on the days she is with Dan and me, but extremely confused when it is time to leave. She thinks she is going home and I still can’t figure out where that place is in her mind. Could it be the North End where she lived most of her life? Or in Saugus where she lived for the past twelve years? She can’t verbalize it. I don’t think she can even see it clearly. In any case, her idea of where she is going is separate from the reality.

On Tuesday when Dan pulled up to the rest home he had the worst “drop off” yet.

“Why are you taking me here? I have to go home! I have laundry to do and I have to feed the cat…she’s been alone all day.”

“Jill, it’s alright, this is where you live.”

“Stop saying that! It’s not. Take me home!”

A solid fifteen minutes of this ensued. Then Dan was rescued by a brilliant thought. He told my mother that if she was going to stay overnight at her “house,” she needed her pills and would have to go inside and approve him signing them out. My mother looked at him with twisted eyes.

Dan continued. “You know how we sign out your pills everyday, Jill, when you visit? You are at the front desk when we do that. I need you there or else they won’t give them to me.”

Into the rest home she went, and back out she did not come. Trapped. How unbelievably heartbreaking.

We’ve had three drop-offs like this in a row and I am starting to wonder if it is beneficial to take her out so much. She is with me outside of the rest home 4 to 5 times a week. Lately, it just seems to bring her more confusion and irritation.

Yet, when she is not here my stomach goes on roller coaster rides, and after I work I either sleep (3 hours today and yesterday) and then clean my already clean house like a housekeeper on speed. It’s crazy. And I don’t know what to do to stop it. It’s tearing me into tiny pieces and I just don’t know what to do.

Karma - Car Crashes - Coincidence?

On Sunday and Monday of this past Memorial Day weekend, I did not see my mother. On both days, I got into car accidents. Coincidence? I think not...not for this Italian Catholic.

I am a pet sitter by trade, and Memorial Day weekend is traditionally a very busy one. I was left little room to see my mother. Though I had intended to have her visit for a short period of time, or at the very least run in to say hello, the days wore on and the opportunities dimmed. Add in the car crashes and, well…

She was never far from my mind. In fact, she filled it to brimming. I had that all consuming feeling that I was doing something terribly wrong. I called the rest home multiple times to check in, and though I was assured she was well, I wasn’t convinced.

Crash #1 totaled my car on Sunday. The back wheel axle snapped in two and further damage was done to the underside. It appears the value of the car doesn’t touch the cost of the repair. Bye bye Honda Element!

Accident #2 happened on Monday. With the Element gone, I had to use my husband’s truck. (What a trusting fellow!) We call the truck the big behemoth. Redundant I know. I misjudged the space between a parked car and a pole and didn’t realize the whole right side of his nearly perfect truck was rubbing lovingly against the cement supporting beam. It is only when I alighted, congratulating myself on a great job fitting into such a space, that I realized the damage I had caused; his silver truck was a sunshine orange yellow all along the right side and dented in like the curve of a hungry man’s stomach.

Two accidents in two days for someone who has an excellent driving record. How can I believe it was anything but Karma?