Another way for me does not seem possible

I can’t seem to stay away from the nursing home. I go seven days a week and stay anywhere from 2-4 hours. If I can’t make it, Dan goes.

Yesterday we had a Nor’Easter in Worcester that dropped 18 inches of snow. The news advised all non-necessary drivers to stay off the road. I couldn’t. I HAD to go there. The driving was treacherous in some areas but I simply could not stay away.

Where is this compulsion coming from? There is no reason for a daily check on her as she is truly in a first rate facility: She is always dressed and clean when I get there, I’ve never found her wet, and the staff is delightful. She doesn’t remember within 10 minutes of me leaving that I was even visiting. And she doesn’t seem all that interested in socializing when I’m there. So why can’t I take a day off?

Could it still be guilt? I’m sure that’s part of it. But I think it’s also due to an unhealthy connection I have to my mother. I believe that if I don’t go, both of us will suffer in some way. It’s such a deeply ingrained feeling of…dependency? I feel my time and care is something I owe her as my mother. I owe her my devotion.

My therapist said it’s perfectly fine to take a day or two off and that it is not the norm for the same family member to visit daily. That it is ok for me to have “a life.” I hear the words, I believe them, but I just can’t make the leap. It would feel all wrong.

Something stronger than I keeps me on a daily schedule and I hope I have the mental and physical fortitude to continue. Another way for me does not seem possible.

New Year's Eve Ramblings

I haven’t wanted to write because of the sadness. There is a certain amount of guilt in posting all of this negative stuff. So I’ve refrained in hopes that there would be good news to post. There hasn’t been.

Mom, due to her advancing symptoms, had to move out of the rest home and into a nursing home where she could receive more intensive care. There IS good news in that we were able to get mom into the home of our choice, the Jewish Healthcare Center in Worcester. Odd selection for an old Italian Catholic :-). But truly, they are amazing caregivers and I know she is in the best of hands. A huge blessing.

Today is New Year’s Eve and my heart is so heavy. I feel tremendously heartbroken for mom and yes, for me. Because we live far from my brother, her sisters and nieces, our days are spent together, just the two of us, and it is getting very lonely. Does she feel the loneliness too? My husband and others think not since she is surrounded by people who dote on her…the staff is wonderful. But is she missing her family as well? There are no signs of this that I can see, yet the thought of it keeps me up at night sometimes.

We’ve considered moving multiple times and have even gone so far as to look at properties closer to family. But now especially, with her in excellent care, a move seems less likely.

Dan has been the perfect third wheel. He goes to see Mom whenever I can’t and gives me a break at least once a week. He’ll often join me on the weekends for a visit and bring us supper so we can all eat together on Wednesday nights. What a blessing he is!

So, I guess there are positives to post, and with the New Year I am going to try my best to focus on those. I definitely need a perspective change or else I am going to continue a slide downhill.

As Expected, with a Little Twist

I have a hard time writing this post because of its predictability. Ma reacted as expected – primarily confusion and fear, with a secondary happiness upon seeing people she knew. Dementia stripped her of any memory of the edifice but not the souls who live there. It was like a high school reunion – old faces in a strange but lively hall. I can’t figure it out and should really just stop trying.

Yesterday she was more confused than Saturday. The last time I visited, around 5p, she said, “Lisa! Thank God you are here. I was getting so nervous wondering where you were and how I was going to get home.” I had to explain that she had to sleep there tonight but that I would see her again in the morning. She meekly said, “Alright.” And snap went the strings of my heart.

Yet aside from the confusion, she seemed fairly happy at suppertime. She was interacting with her table mates – two Navy men just like my father was, one Italian who speaks the language in dialect, and Mary - Mean Mary - who calls my mother Roly Poly behind her back (I heard her once and respectfully called her on it).

So we plug along and move forward. I expect to be there at least twice a day and hope to take her out, even for short rides or visits to the house, a few times a week. The anxiety is ever present but I am trying to give it all up to God and leave the work and the future to Him. So difficult when I’m here on earth and He is up there in Heaven.

Just Like the First Day at School

Today, after almost three weeks in rehab, mom will be moving back to the rest home. She is well enough to make the transition back to her permanent living facility.

I am filled with a heavy sense of dread. Mom has become accustomed to rehab, knows her room and enjoys the company of the staff. She loves the daily bingo and her short naps between playing and suppertime. Now, we are, for all intents and purposes, back to square one; the gun is just going off at the start line.

Hello to all the old anxieties - how will she get along with the residents, how will she deal with her confusion, will she even LIKE where she is staying? After all, because of her disease, this is a completely new experience for her. Her memory has been stripped of the eight months she has lived at the home. This is day one at kindergarten, her first hour on the job. And I am the anxious parent with the sick feeling in her stomach hoping that she is liked and she’ll get along. The only difference is I get to literally follow her around (I doubt I'll leave her side today), watch her struggle through every new turn and bump in the road.

Ach, I am filled with sadness and unhappy anticipation today when instead I “should be” focusing on sending positive energy and thought toward this “new” and “first” big step.

Alzheimer’s, in our uneasy and permanent relationship, you are not my friend today. Sometimes I feel as if we’ve gotten close, understand each other like true buddies, but in this moment, it is safe to say we’re cold-stoned enemies.

Mom Continues to Worsen

Mom continues to worsen. She was coming along nicely at rehab until they took her off of the antibiotic for c.diff. The infection returned, she had a seizure, and we’ve added a UTI and possible pneumonia. She is back in the hospital. They are replacing her current antibiotic with a much stronger one and getting a doctor from infectious diseases to consult.

My leaving the hospital is dangerous for her - the seizure information did not travel with her from rehab, her history somehow shows a prior stroke when she never had one, and they have a DNR order on file when instead she should be full code. I’m afraid to even go down the hall to the bathroom.

I watch her now as her body twitches under the bright white hospital sheets. Her mouth is open and dry; her bald head sweaty and cold. And I think - this is what we’ve come to and in such a short time. Three month ago she was walking on her own, still giving me lip, delighting at my husband’s attention, downing her double cheeseburgers with gusto. And now her speech is slurred, she can barely move and I have to beg her to eat a banana.

I am reminded again how the one thing we can count on in life is change; that it is futile to cling to any one state. Even her current medical condition will be temporary – she will either get better or worse. So I strive to stay unattached, to float above what is happening; to report the facts with accuracy and keep everyone on track, but to not get swallowed with emotion. I’m doomed if I do. And if I’m doomed, Ma has no chance.

A Month of Hospital Stays

The last month has been a particularly trying one for me and Mom. She has had two hospital stays within a three week period and is now in a rehab facility to regain some of the strength she lost after being contained to her bed for so long.

To be brief:

• First hospital stay was due to infectious colitis (a virus or bacteria that attacks the colon and causes inflammation)

• Second hospital stay was for c.diff (Clostridium difficile, often called "C. diff," is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. Illness from C. diff most commonly affects older adults in hospitals or in long term care facilities and typically occurs after use of antibiotic medications.)

What was really shocking to me, and what I’d like to discuss here for those of you who have parents in and out of hospitals, was the mistake the hospitals made with mom’s medications. I am curious if anyone else has experienced the same.

My mother’s medication list and schedule were faxed over from the rest home to the first hospital where a worker transcribed the list onto the hospital’s form. The worker apparently didn’t read closely enough and transcribed “300 mgs of seroquel, ½ tablet (150 mgs), once in the evening” to “300 mgs of seroquel once per day.”

Luckily I was there when my mother was being given her morning meds and was able to clear up the issue before she was given the wrong dose at the wrong time. I chalked this up to a one chance in a thousand mistake until the same exact transcription error happened at the second hospital which is totally unaffiliated with the first!

Unfortunately I was not there to catch the error and Ma had been given two doses over two mornings. Her blood pressure dropped to below 85 on the top, she was extremely weak, slurring her words, and unable to sit up. The doctors became very concerned and rechecked her meds and noticed the error.

Needless to say, the first thing I did when going into the rehab center was personally check the med list with the nurse, pointing out the seroquel doses specifically and requesting to see the transcription when it was done.

It is so clear that my duties as mom’s caregiver did not end when she went into the rest home. In fact, I’ve had to become a more vigilant advocate of my mother’s health now that we are dealing with more organizations responsible for her care (rest home, hospitals, etc.).

Good news is she is on the road to recovery and we believe her rehab stay will only be about a week long. After that, she’ll return to the rest home and I’ll return to my consideration of taking her back home, which seems more unlikely after these hospital stays.

I'm Not Buying It

I don’t consider myself an ignorant person. I’m diligent in my research, in getting advice, direction, input from those who are more experienced than I, in seeking out every resource and data. And though the feedback is consistent, I’m still not totally buying it. Even with a measure of proof, I still think my mother is being denied more than she needs to be.

We are in the middle of a heat wave here in the North East. Temperatures have gone above 90 for close to 5 days. It’s been unbearable. One thing Mom always hated was the heat. She has no tolerance for it, and neither do I. So this week, Ma stayed in the very comfortable air-conditioned rest home without any outside excursions; we just had many meaningful visits inside.

I could clearly see by yesterday, the seventh day she’s been at the home without going out, that she was calmer, more engaged and less confused. The Director of Nursing and I discussed the almost glaring change in my mother’s demeanor. I saw the benefits. I am not blind.

And then I spoke about an upcoming wedding we are invited to, and visits from relatives over the next two weeks.

“Neither will be good for her Lisa. Your family can visit here or you can take her out. But again, going to your home will be too confusing for her.” She continued, “…and a wedding would be way too stimulating for her.”

And that’s when I lost it…again. Is my mother a prisoner? The disease is already usurping her mind. Now it encroaches upon her ability to enjoy a celebration or a day at my house with family? I just can’t abide by this, I can’t accept it. I feel like a mother whose child is disabled and being told he/she can’t jump a fence or ride a bike. The mother adamantly refuses to accept what she is being told is truth and the child soars to heights no one imagined.

Well, I am not going to sit back and watch Alzheimer’s take everything from my mother. I am NOT going down without a fight. I will never believe the right thing is denying her enjoyment. There has to be some sort of balance. She loves being around her family. Dementia has not changed that. If the venue is too stimulating, we’ll leave. But I am not going down without trying.

Advice needed - Considering making a huge change

I’m thinking of taking Ma back to live with me again and would appreciate hearing from anyone who cared for their loved ones suffering from Alzheimer’s at home.

Mom lived with us for a year when she was first diagnosed. When she started wandering, it was advised by all of her doctors, her social worker, and her psychiatrist that she move to a rest home. I heard horror stories of how wanderers got out of the house, even when family members were sleeping in the hallways right outside their bedroom door. I’ve also heard of the emotional and physical toll the disease takes on caretakers.

Of course, I know that firsthand. Caring for my mother almost sent me to the hospital twice. So why would I consider doing it again? For a couple of reasons.

1) No matter how wonderful the rest home / nursing facility, there is nothing like being cared for by your own daughter / family. And even if the patient to aid ratio is excellent (like it is where my mother is), there is no better ratio than 1:1.

2) After hearing from both the Alzheimer’s Association and the Director of Nursing at the rest home that my mother is not benefiting at all from me taking her here and then returning her, I can’t live with her coming to my house just once a week. Is that part about me? It certainly is. I can’t deal with it. My heart can’t take it. Keeping her away from the place where I can dote on her and keep her swollen legs up, and feed her pasta, having her away from the place where she feels most comfortable and safe, it is all unacceptable to me.

So what would I do differently?

First, I would give up my business. I would no longer work. I have someone that I trust completely and would hand over all of my clients to her. We would then become a one income household but we can swing it with a few adjustments.

Second, we’ve considered moving closer to family. Right now we live 2 hours away from my brother and an hour away from aunts and cousins. Being closer to them would at the very least, lend me quicker emotional and “in a pinch” support.

Third, I would have a nurse come a few times a week to give me a break and I would have my mom go to a program that starts later in the day so that she can sleep in a bit. This may help avoid the knock-down, drag out fights we had in the past that usually left me in a puddle.

Putting my mother in a home never sat well with my heart, and though my head got it, there was a part of my brain that said I could keep her at my house if I arranged things differently.

But everyone is telling me its impossible – doctors, nurses, family. She is too sick and I am of a “delicate” nature.

I need someone to tell me I can. I need someone who has done it to tell me it’s doable.

I appreciate any advice...

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.”

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?

Lulu to the Rescue

Prior to moving to the rest home, my mother was waking and rising from bed almost every night. We were alerted to this by a reindeer bell we had fastened to her door handle. Mom would whip the door open and the bell would clatter. It always woke us. Most of the time, we’d catch her at the top of the stairs - half dressed, sometimes with her “hair” on, always confused. Her pocketbook would be filled with the strangest things; a doll from her bureau, an empty makeup case, a pair of worn socks.

One night, unbeknownst to us, Mom had removed the bell.

Lulu, one of our kitties and the youngest of four in the house (though not the smallest as you can see from her picture), jumped up on our bed one evening and sat at Dan’s feet. She began to give her short-bursted meows (more like barks) which she does only in the mornings when we’ve slept too late and she is hungry. She has never given us this call in the middle of the night because it means one thing – GET UP. Dan woke instantly and Lulu bark-bursted again, looked at him and then at the door. The house was ablaze with lights. We could hear my mother rustling downstairs. When I reached her, she was very confused and sweating. She was talking nonsense. I guided her back to her bed, removed the shirt she had put on backwards and the one sock from her foot and eased her back into bed.

We would never have known if Lulu didn't alert us and who knows what my mother would have done or where she would have gone. The idea of it sends me crazy and I hug my little Lulu and thank her with little kitty kisses.

Have you had an experience where an animal has alerted you to danger? I'd love to hear about it.

A Plan Hatched by Deidre

When Mom moved to the rest home, she had what appeared to be a very nice and companionable roommate. We’ll call her Deidre.

Deidre is ninety-one years old and one of the more astute residents at the home. She dresses in colorful and patterned skirts with matching blouses, a brooch attached close to the hollow of her throat, neat as a military sergeant and independent in ways my mother isn’t. For instance, she needs no assistance showering and she is still ‘toilet trained.’

As I look back on it, I believe these differences, along with a host of others, set Deidre to plan a permanent removal of my mother from the room. I should have known something was up when she took over one of my mother’s bureau drawers, then another, and inched my mother’s closet space down to nothing.

I heard about ‘the incident’ a day after it happened. Apparently Deidre, when she finally headed to bed around midnight, turned on all the bedroom lights, startled my mother awake and accused her of ‘moving her things.’ When my mother insisted she did not, Deidre called her a liar.

And hence, my mother was set off like a kite in a windstorm.

The nurse on duty that night heard the elevator bell ring, the doors squeak open, and out came my mother and Deidre, side by side. Mom was wigless and in her nightgown, Deidre as crisp and clean as she was that morning. When Deidre went into her diatribe of my mother’s sticky fingers, Mom had had enough. She wielded her fist in front of Deidre’s face, her eyes turned to paper-thin slits and she growled, “If you call me a liar one more time I will punch you right in the face.”

The nurse told me he had never seen Deidre so frightened, nor had he ever seen my mother so angry and so violent.

“It was scary, Lisa. Your mom is gentle and easygoing but she actually scared me too! It was completely out of character.” Hmmm, not so much.

Now, I am not one for conspiracy theories, but I do believe this was a plan hatched by Deidre. Why? Because my mother was bringing Deidre’s spirits down, dimming her mojo, filling up the room with pernicious odors.

In the end, it worked out just fine. Mom is bunking with a kinder and gentler roommate who watches over her with genuine concern and tenderness. We’ll call her Bea. She is an angel and I love her.

As for Deidre, she has a new roommate, for now.

The Walking Ghost of Frances

My mother refused to get out of bed when I visited yesterday after lunch. So I decided to steal another old lady and take her for a walk instead. Please note that names have been changed to protect the innocent :-)

I love this particular woman. Her name is Frances. She is from good old Irish stock with all the simple and clear cut values that come with it. I don’t think she gets many visitors, or at least she says she doesn’t. But it’s hard to tell because she has Alzheimer’s.

We walked to the park just about two hundred feet from the rest home. We sat inside a white gazebo splattered with graffiti and I tried my hardest not to stare at the very graphic images of male body parts. I considered moving so that Frances wouldn’t catch a glimpse, but it became quickly evident she wouldn’t. She was reeling against her life, her situation, her family, and it was all-consuming.

“Why can’t I come and go as I please? I’ve always been my own person, earned my own money. I don’t even know where my money is. Do my brothers and sisters even know I’m here? Why can’t I go for a simple walk alone? I’ve walked alone my entire life.”

I didn’t know what to say. She continued.

“They’ve taken my independence. My daughter has done this to me. She left me here.”

“Frances,” I said. “Your daughter loves you.”

“No she doesn’t! Look at what she did to me!”

And I realized then that Alzheimer’s comes with a script, a common plot, and children are the villains. And to some degree, it is true. Alzheimer’s leaves children with very few options and because of that, we are often typecast as the evil doers. There seems to be no way around it, and believe me, I’ve looked.

But it is not about us, the children, is it? It is about the victims of this disease.

Frances worked in the Worcester Public School System with control of a staff. “Her girls,” she called them. She supported her family without a husband. She made the decisions, propelled her family forward, cleaned up the messes and organized the outcomes. And now here she is, not able to leave a building alone without an alarm sounding off, alerting everyone to the walking ghost of Frances.

As we returned to the rest home, I promised Frances I’d be back tomorrow. She gave me a strong hug for such a wisp of a woman.

“You are a good daughter,” she said.

And I hoped in that moment, Alzheimer’s would transform me into her own child so that she could have a moment of happiness.

I Have Never Been So Fickle

I have never been so uncertain or so fickle. Why am I drawn to write about what is causing me so much pain? It’s like being told in a restaurant, "watch the plate, it’s hot," only to wrap my fingers around it just to be certain. Or like knowing a piece of chocolate is going to start me on a migraine and shoving it in my mouth anyway.

But God help me, I’ve been missing writing about my life as a daughter. I’ve been missing sharing the funny anecdotes and the toe dips into the dark pond of Alzheimer’s. Am I a glutton for punishment? Do I feel I deserve the torture? We Italian Catholics do tend to believe in the sanctity of suffering.

I don’t expect you to join me again on my journey. I’ve been too unreliable, too sporadic. It’s like promising you a cold drink after a long walk only to find the sack is bone dry.

Mom’s short term memory is almost non-existent now. Though Dan or I see her everyday, I am always greeted with a surprised, “Lisa!” like I’m the prodigal daughter, the long lost son. It breaks my heart every time, but the recovery period for me is shorter.

Yet, I still cry everyday. Every single day.

My therapist said I am experiencing anticipatory grief; I am feeling now the “death” of my mother. I am experiencing the same for her sister, my Aunt Connie, whom I’ve written about. Auntie is worse and in a home as well.

I wish this disease would deal a swift blow and not this slow Chinese water torture. I am a “rip the band aid off” type of girl.

But alas, I wish for the unchangeable. And so here I am. Back again.

"Help! I'm Drowning!"

Last week, while assisting my mother in the bathroom, I was nearly rendered unconscious by a pernicious odor wafting from her wet diaper. My instant concern was infection. Alzheimer’s Disease and infection do not marry well; infection magnifies it's symptoms. Because the evidence was in the diaper, my first thought was her urinary tract.

My mother’s doctor saw her immediately for blood and urine samples. The quick test showed she was UTI free. However, her urine was dark and cloudy. We’d wait for the blood work results for additional information. When those tests came back, we discovered my mother was slightly dehydrated and her kidney functions were off, most likely to due to it.

The remedy? Get fluids into her quick and keep her on a consistent intake of water.

My mother doesn’t like to drink water. In fact, she doesn’t like to drink much of anything.

The first day, though, she was a fairly well-behaved patient. She understood the significance of dehydration and knew something was amiss as she was experiencing the same swelling bouquet I did with every potty break. Surprisingly, six glasses within 24 hours really cleared things out and the next morning, Mom was odor free. With it went her cooperation to drink.

”You’re drowning me! Who drinks this much water? My belly won’t hold anymore!”

It’s been five days now. Five torturous days.

The first two I used bribery. Mom got to watch one of her favorite TV shows for each glass of water she drank. No empty glass? No Jon and Kate and their 8 children to delight her.

When that wore thin, I started with the tough talk.

“There is no option here, Ma.”

“It won’t go down!”

“Drink it now old woman.”

“Jesus, Mary and Joseph!”

“They want you to drink too.”

That got two more days out of her.

Today, we are reduced to song and dance…literally. Dan said we had to make it fun for her, give her a pleasant impetus. So we came up with a little melody. “A sip you take with every break,” which we sing at every commercial with a clap of our hands and a stomp of our feet.

The levels we have stooped to....

But it is working, for now.

Josie of My Heart

I’ve been thinking a lot about my Jo Jo. She and my mother had a complex, semi-dysfunctional relationship. I still don’t quite understand it, how they both wound up being such a huge part of each other’s lives. As for me, I am grateful. Jo was my constant, my steady stream of love. And she has been in my mind lately, planting happy thoughts and memories.

I’d like to post an essay I wrote about her, one that was published by Yankee Magazine online. This is one of many tributes I hope to have published about her.

A Cornmeal Heirloom

What I always noticed first when Josie cooked were her hands. Her fingers were slender but gnarled, like a sweet witch’s, and from the base of her knuckles to her wrists they were swollen with arthritis. I often wondered how she could create such amazing dishes with these two distorted tools.

Josie was my surrogate grandmother. Related to my family through marriage, she had been in my life since birth. We lived in Boston’s Italian neighborhood and food was as big a part of our lives as loving and breathing. She taught me everything she knew about cooking and wanted me to develop a fine repertoire of dishes as much as she hoped I’d grow into a good and decent woman.

I had just turned twenty when she announced it was time for me to learn how to make cornmeal pizza. I didn’t know how to react. I had been asking her to teach me for years and she always refused, claiming I wasn’t ready. And now the moment had come. Why? I wondered. What changed? I didn’t ask her though, afraid to jeopardize the moment. Instead, I jumped up to get the cornmeal.

“Heat some water up in a small pan please,” she said, ambling to her plastic-covered kitchen table. While we waited for that to boil, Josie shook a generous amount of cornmeal into a bowl, added a fistful of grated Romano cheese, and a few shakes of black pepper. “How much of each are you using, Jo?” I asked. “You don’t make this with exact measurements, Mumma. Just watch,” she said as she mixed the dry ingredients with her hands. She always called me ‘Mumma’ when speaking with me directly, and ‘the baby’ when speaking about me to others. I would remain the baby well into my thirties when she passed away.

Next, Josie uncorked a glass bottle filled with green-gold olive oil and drizzled it over the dry ingredients. The pungent scent of oil blending with cheese made my mouth water. She scooped up a portion of the semi-wet mixture and pressed it into my palm, our hands joining in a mushy prayer. “Can you feel how this is starting to stick together but it’s crumbly too?” I nodded. She smiled and moved to retrieve the hot water.

Adding the water was tricky. I knew this because I had heard her curse once after using too much. She poured it into the middle of the mixture, forming a gritty well, then handed me a spoon. “You mix first with a spoon because the water will burn your hands,” she instructed. When the water was absorbed into the cornmeal she said “Now, start mixing and pressing with your fingers.”

She watched intently as I rolled the wet cornmeal around, pinching here and there. “This is the most important part…the consistency,” she said. “It’s where everyone I’ve tried to teach has gone wrong. It has to be wet enough to hold together, but it can’t be too watery or it will fall apart when you fry it.”

My throat dried. I furrowed my brow and bit the inside of my cheek. The mixture was warm and heavy when I closed my hand around it. When I released my grip, it seemed to settle and relax at the bottom of the bowl, but not fall apart. “It feels good to me Jo. Moist but…strong.” I struggled for an accurate description as her hazel eyes bore into me. “It feels wet enough to hold together, but pasty and firm too.” She lowered her own frail fingers into the bowl. I waited, holding my breath. “Brava, Mumma,” she said with a solemn nod of her head. I exhaled. The hard part was done.

We fried the cornmeal in olive oil, bringing it to a golden tan on either side, and then cooled it on a glass plate lined with paper towels. In Italy, the pizza would be served under greens; spinach or Savoy cabbage sautéed in garlic and oil. But I always loved to eat it plain, and still do, so the subtle cornmeal flavor amid the sharpness of the cheese is not lost.

Less than a week later, I made the pizza without telling Josie. I wanted to surprise her, and if I failed, she never had to know. I agonized over each part of it; was there enough cheese? What will happen when it comes time for the hot water? Finally, becoming exasperated, I just relaxed and let touch guide me. When the pizza was done, I wrapped it carefully in plastic wrap and then in tin foil like Josie did. I gently placed it in a brown paper bag.

I tried to calm the rush of my heart as I walked the three blocks to her house. When she answered my knock, I had to hold back from shouting. Instead, I said softly, “Jo, I made cornmeal pizza.” Her eyes glimmered with surprise. “You did? Let me taste!” She broke off a piece and bit into it. I couldn’t hear a sound as she chewed; the world seemed to stand still. “Mumma, this is delicious…buonissima!” My heart leaps whenever I remember the look of pleasure and admiration she measured my way.

Josie’s picture is pasted to the side of my refrigerator where I see it every time I cook. Whenever I make cornmeal pizza, I reach over to kiss her and thank her. I can’t say my pizza always comes out perfectly, but when it does, I billow with pride, and I know she is somewhere watching, proud of me too.

"Cause I'm a Wanderer..."

It happened three weeks ago. I was startled awake by the click of the front door closing. Looking back, I am astonished that a sound so slight and innocuous would awaken me from a sound sleep.

“Did you hear that?” I asked Dan.

What we both heard next were very light footsteps on the front porch.

“It’s just the cats,” Dan said.

“Are you sure?” I asked?

“Mm, hm.”

I lay restless for ten minutes, straining my ears, lifting my head at every sound. I was uneasy, itchy, anxious.

Finally, I got out of bed and headed directly to my mother’s room with no real, conscious intention of doing so. Her bed was empty.

“Dan, my mother isn’t up here!” I said, as I flew down the stairs and called for her in increasing decibels. Nothing.

Our house sits on a small dead-end road that intersects with a much larger street. I threw on my slippers and raced to the end of it. At 5:00a, the sky was as dark as night. The streetlights illuminated the intersecting road in florescent shadows. My head snapped right and left. No mother.

Back at the house I did a much more thorough search while Dan was getting dressed. I saw that my mother’s pocketbook was gone. One of her pouty-lipped Styrofoam busts was devoid of its wig.

“Did you check the basement bathroom?” Dan said.

“No, but I don’t think she’d go down there.”

“Let’s check anyway.”

Nothing. No mother. And no feelings. I was empty of emotion. My heart was banging, but for all intents and purposes I was lifeless. My mind was racing but my blood ran still.

I found her at 5:25a as she was just stepping onto someone’s porch, her hand reaching for the doorbell.

“Ma!” I called.

She turned as if in slow motion.

“Oh Lisa!” she said. “There you are.”

I jogged up to her and put my arm around her shoulders. She was clothed in her navy blue Capri’s with embroidered strawberries, a pale green top and a black jacket. She had put sneakers on, her wig, rouge and a deep red lipstick. She was carrying her purse and she was drenched in sweat.

“Where are you going, Ma?”

“To see Ann Becky in the hospital.”

My mother cared for Ann everyday after school for years while Ann’s mother, a single parent, worked. Ma would often take her for weekends as well. Ann was part of our family for a long time and something in my mother’s ailing mind was seeking her out.

“Isn’t it too early to visit her?” I asked, playing along so as not to frighten her.

“No, it’s the perfect time. No one will be there.” She was breathing heavily and her eyes were foggy. But every motion she made was sharp and jagged, defined like a short-circuiting robot.

“Can we go back to the house and have coffee first?” I asked. “Then we can get going to the hospital.”

Once we were back inside, my mother started to “come to.” The cloudiness lifted, replaced by a sharp confusion. In her land of patient visiting, she knew exactly where she was going. Now, back at my house, reality was nudging its way in and the scenarios didn’t match up.

I got her settled in bed and walked dazedly back to my own bedroom. Dan was waiting for me.

“I feel nothing.” I said.

“There is nothing to feel,” he said. “She is safe and that’s all that matters.”

But I felt it seven hours later.

I had finished my last job and was sitting in my car. Here it comes, I thought, as the wave of fear and grief washed away the shock, and exposed the naked feelings my mind was hiding from my heart.

I didn’t expect this. I thought ‘wandering’ would ignore my mother. I don’t know why. Perhaps because once that happens, there is no denying the disease. It is too grave and blatant a symptom.

Since that morning three weeks ago, my mother has attempted to leave the house one other time. She has a reindeer bell on her door to alert us if she leaves her room and we now turn on our alarm system as an added precaution. I’ll order an ID bracelet and have even considered making up a one sheet handout with my mother’s picture on it and stats to distribute throughout our neighborhood. Her doctor has increased her Seroquel at night to make the possibility of an early morning stroll less likely.

As for me, that day put me in a whole other realm of anxiety and depression and I still haven’t found my way out.

Reverse Psychology / Divine Inspiration

*Photo* Top Row, Left to Right: my grandfather Antonio, my uncle Father Claude, my grandmother Palmira. Bottom Row: Aunt Connie

Ma and I are down to one semi-peaceful morning of getting her out of bed during the week. The other four, anything goes; lying, pleading, pulling off sheets, tugging on legs, threats in two different languages.

Yesterday, I had one nerve left and my mother danced all over it. I went from zero to sixty by the time I said good morning and she grunted. My voice rose to an unpleasant pitch and my mother’s came chasing right after it.

I tell you I don’t know what put the thought in my mind. Perhaps God glanced my way, looked long enough to see I had very little left by way of sanity, took pity on me and threw me the inspiration.

“Ma, this is all your fault you know.” I said calmly.

The one eye I could see from under the covers popped open and narrowed.

“What’s my fault?”

“The way I am. What I’m doing right now.”

“What are you talking about?”

“You took care of Grandpa when he was sick. You and Aunt Syl cared for him at home, giving him the best you both had, making sure he was as healthy as he could be.”

“Yeah, and?”

“And Aunt Connie did the same for Grandma.”

Her bald head popped out from under the covers, and she stared at me trying to find the angle, but she couldn’t argue with the facts as I presented them.

Keep going…I thought…don’t lose momentum.

“Well, I grew up seeing that. And now I am the way I am because of it. Because of YOU.”

Oh beautiful. More...

“Let’s say you knew Grandpa's health would decline faster by NOT getting him out of bed. Would you leave him there?”

“No.”

“Then what do you expect me to do?”

I waited a beat for dramatic affect and added a dash of self-pity to my timbre. “It’s like I have no choice.”

She emerged from the covers, exposing her zebra nightgown and those gorgeous legs.

“Yeah, yeah, alright. I get it,” she said, traces of false anger in her voice. “Help me out of this bed will you please?”

As we walked to the bathroom I thought, Can I squeeze a shower out of this? Or would that be pressing my luck?

I decided to not even try it. But I sure would use this tact again, happily and shamelessly.

Keep them coming God!