Saturday, October 16, 2010

Ocean Waves and Trickling Streams

The bulk of my angst this past week has come from my mother’s illness and not so much her being in a rest home. I feel an overwhelming sadness each time she says something distinctly dementia-like. The sadness plants itself in the center of my stomach, causing all sorts of gastro-intestinal problems. The pain floats up like a thin smoky haze and wraps around my heart, causing palpitations and anxiety. I think I have more physical symptoms from my mother’s illness than she does!

She has taken another tiny step further into her disease. She no longer remembers she has a bed at the rest home, what floor it’s on, that her clothes are there. Last night she asked where my best friend Lisa was and thought the rest home was Lisa's house. She has been sundowning every day again so we need to incorporate a new medication to help with that. I’ll be meeting with her psychiatrist on Monday to discuss. It will be a fine balance knocking out the sundowning while not turning her into a zombie.

Seeing the decline, assured it will only get worse, and knowing that we have years of this ahead of us is truly making me physically and emotionally sick. Somewhere in my brain I know her being at the rest home is the best thing so the angst from that ebbs and flows like an ocean wave. But the sadness of her illness is a steady trickling stream.

I long for the day when I will have some happy news to post. When mom and I will both feel better. I pray for it everyday. Just a little relief. A tiny bit to get me through without so much of an internal battle.

Monday, October 4, 2010

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.

Saturday, October 2, 2010

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.

Tuesday, August 31, 2010

What a Difference Three Days Make

Mom, with a steady flow of intravenous fluids and now heavy duty antibiotics, is finally showing improvement.

• Her kidney function is at a 2.2, down from 4.8 so she officially is out of renal failure.

• Her white blood count is almost normal.

• Neurology consulted and Mom had a CT scan. She did not have a seizure. Instead, since her blood pressure was so low, her brain did not receive enough blood and her body went into “tremors.”

• Her blood pressure is normal.

• She still has diarrhea and this is the main concern. Infectious Diseases consulted and she is now on Vancomycin, the strongest antibiotic for this type of infection. If this doesn’t work, she would need surgery. But everyone is hopeful the antibiotic will kill the c.diff.

Mom is highly susceptible to dehydration and this is going to be the main concern going forward. Anyone with a parent or loved one in a nursing facility knows that keeping a resident/patient hydrated in that environment is a huge issue.

Before Mom went into the hospital for this third time, we had bought a portable non-breakable water bottle for her with a built in straw. She liked it and drank a bit more, but the bottle when full was too heavy and cumbersome to carry. When I’m with her at the home, I push fluids. The rest home does their best as well. But she just isn’t getting enough.

Any ideas or suggestions? I feel truly desperate about this. If we can’t keep her hydrated, chances of her being hospitalized again are almost guaranteed. And the bigger concern for me…does this mean changing her from a rest home to nursing home is on the horizon? I believe at the nursing home, they are able to administer IV fluids whereas at the rest home, they are not. But I’m not quite sure about this.

And it looks like taking her home is becoming less likely. But that is a blog for another day.

Saturday, August 28, 2010

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.

Friday, August 20, 2010

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.

Friday, July 16, 2010

Another conversation with the Alzheimer’s Association

I’ve burned up the Alzheimer’s Association’s telephone lines again. What an amazing resource. We discussed the upcoming visits with my family, the wedding, and taking mom back home.

Ma will absolutely come to my house for a visit with her family this Sunday. Her brother, sister, dearest friend and niece will be visiting for a traditional Italian dinner (with a little vegan twist thrown in for good measure). I’ll have Ma arrive early to get acclimated to the house again (it’s been almost three weeks…disgraceful) before she is inundated with a lively bunch of loving family.

As for the wedding, I looked at it more closely, away from the initial knee-jerk anger and frustration. The wedding is over an hour away and right when Ma tends to sundown. The main activity will be close to her bedtime. It will be dark with loud music and lots of energetic people. OK, even I agree (now) that would be a recipe for disaster. I took mom to the bridal shower a month ago and that was less stimulating. At least she got to participate in some of the celebratory activities.

Mom coming home was an interesting discussion. There was hesitancy in the representative’s voice at first, but we attacked the issues from every angle. Will I be able to get the resources Mom had before (funded daycare, an aid to help in the house, etc.)? How about a visiting nurse to keep an eye on her legs and her now very swollen elbow? What about respite for me and Dan? How will we wander-proof the house?

Good news is I am on the right track with researching all of these and I will not have her come home until I have things as much in order as I can. I owe that to both of us.

So, I’m feeling scared but a bit more empowered. I’m sure those two very conflicting feelings will living side by side within me for a long time.

As for Ma, we are getting closer. Hang in there Gilda-Bear!

Sunday, July 11, 2010

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.

Friday, July 2, 2010

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...

Wednesday, June 23, 2010

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.

Saturday, June 19, 2010

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

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.

Wednesday, June 9, 2010

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.”

Saturday, June 5, 2010

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.

Wednesday, June 2, 2010

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?

Monday, May 31, 2010

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.

Sunday, May 30, 2010

Sweet Blog Award

I opened my blog this morning to find that I had received the Sweet Blog Award from Julie Musil. Thank you so much Julie!

Julie is an author of fiction and nonfiction, wife, and mother to three sons. She just reached 100 followers on her blog. Check it out at:

Blog Awarding Rules:
1. Pass it to 10 Sweet people.
2. Inform them about this award.
3. Link back the one who gave this award.

I will be giving the award away soon...I already have a few very interesting blogs in mind.

Thank you again Julie! What a lovely way to start a Saturday morning!

Wednesday, May 26, 2010

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.

Friday, May 21, 2010

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.

Thursday, May 20, 2010

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.

Tuesday, March 2, 2010

Seems like a lifetime ago

Was it October that I last wrote? Could it really be almost five months? Seems like a lifetime ago.

I shot into the world of blogging with excited expectation, a potential outlet for my life embroiled in Alzheimer’s. I needed a place to work out my feelings, make sense of the ridiculous, vocalize the horror, document the black journey.

What I didn’t realize is that it would make things worse and plant me deeper into the dark garden of sadness. I was barely making it through the actual true life moments; writing about them increased their color and flavor, almost like creating post-war flashbacks.

Yet, writing has always been a love of mine and I appreciated the following of such caring and understanding people. And so I wrote until I couldn’t anymore. And I brought myself so close to the edge that I couldn’t even read or comment on other blogs. I ran away. And I’m sorry.

Mom has been living at a Rest Home for a month now. It was among the hardest decisions I’ve ever made. It cost me nights of agonizing rumination, many consecutive days of all out sobbing, and 10 lbs that just vanished somewhere.

But it was the right decision. Of that, I have no doubt. I could not provide the level of care she needed. And so, I leave that now to professionals. When the guilt giant starts to grumble, I remember that it is Alzheimer’s that moved my mother out of my home. Not me.

Yet, my caretaking of her continues and in some ways is more intense. I visit everyday and if I can’t, my husband does. I scrutinize her care at the Rest Home, every single facet of it. I make no recriminations but many suggestions. She is well cared for there or she wouldn’t be where she is. Still, no one can do it like I can. Blood and history make a perfectionist out of a caregiver.

So, it is done. She is there and I am here. A piece of me feels lost but I don’t know which piece. I just know that I feel all wrong.

I have missed writing and perhaps I will start another blog someday that won’t be seeded in sadness. And perhaps I will find you all again, those who took this journey with me and paved it with advice, acceptance and love. Thank you, truly, for your wisdom and kindness.

I wish you all the very best,