Tag Archives: Family

Happy Birthday: Pt. ll

Posted in July by

I decided on a ‘Sweet tooth’ theme for mom’s birthday.

I ordered rum balls from “Sweet Mama’s”, a tasty Tulsa, Oklahoma bakery that shipped in time for the big day. I placed them on a hand-blown glass cloche that was part of her ‘sweet tooth’ themed gift, it’s not only pretty, it’s perfect for the occasional apple pies and “sock it to me” pudding cakes that Miss Cathy likes (and I try to buy in moderation because of her diabetes).

I put a bow on the glass ball top of the cloche, walked Miss Cathy into the kitchen with her eyes closed and when she opened them-voila, a sweet birthday surprise!

A lady should never tell her age but I’m no lady so I’ll just put it out there that mom is seventy-five years old.

Seventy-five isn’t that old really, not these days, especially if you factor in that ‘sixty’ is the new ‘fifty’ (at least according to pop culture), people are working long past seventy (by choice or economic necessity) and doing all sorts of amazing things mentally and physically so by all accounts mom should still be a ‘vital’ person, and she would be, probably, if Alzheimer’s hadn’t stepped in to rob her of her ‘essence’.

Miss Cathy’s’ self-assurance has been replaced by a halting, questioning fragility and a begrudging reliance on me to help her with things that used to be second nature for her.

Life is becoming harder for her to navigate day to day and it’s becoming increasingly difficult for her to trust herself to either ‘remember’ or ‘to do’ the things she wants as Alzheimer’s continues to take a toll on her confidence and independence.

She still struggles to make peace with her diagnosis but as her condition becomes less subtle and more overt even she can’t deny that something is wrong.

With the help of her new neurologist she seems more accepting and she just might be ready to take some steps away from denial toward participating in her own care and maintenance, maybe….hopefully.

That is my birthday wish for her anyway.

She was touched by the gift and the gesture. She gave me a kiss and a hug then I was off to catch a train for New York where I’ve been teaching a summer program at LIM College this month and part of next.

I’m gone for most of the week and back at the weekend, my brother staying with mom while I’m away.

I can’t believe that another year has passed so quickly. The first week of August marks my third year as a caregiver.

So much has changed and there is still so much ahead that is unknown.

But, celebrating the day of her birth (however briefly) I could see that she was happy and present for the gifts she received and that’s enough, more than enough….. for today anyway.

Happy Birthday: Pt l

Posted in July by

It’s Miss Cathy’s birthday tomorrow.

What do you get for the woman who’s likely to forget what you’ve given her?

To be fair, I bought mom a gold watch to replace one that had been stolen years ago and rather than save it till now I gave it to her back in the Spring (I figured at her age why wait to make her happy).

She cherishes it and takes every opportunity to let people know that it was a gift from me.

But I also think its fun to have something to give on your loved one’s actual ‘Birth’ day, even if it’s just a little trifle, its a reminder that they’re loved and special.

I wish there was a way to give back her mind (the way it was five or ten years ago) when she was sharp as a razor and still on top of her game.

Oh, she still has the ability to cut you down to size (I’ve been verbally decapitated a few times myself in the past three years….that’s all blood under the bridge for now) but the Alz has tempered her temperament.

Those of us who are lucky enough to be healthy and whole take simple things (such as remembering the date that we were born and our age) for granted. So I’m reminded everyday of my blessings being healthy in body and mind.

Sometimes though I have a moment when I’m stopped cold by the thought that maybe the researchers are wrong.

What if Alzheimer’s is genetic? Am I’m witnessing my own future? Will there soon be a day when I’m searching the air to try to remember the year I was born, much the way Miss Cathy has been lately?

I’ve never professed to have a great memory so it’s been of little concern to me through the years that is until I became a caregiver.

Now I bear witness to the slow determination of a loved one’s mind and memory on a daily basis.

So it’s only natural (I think) to wonder, “is my mental state early signs of dementia or just the by-products of the stress that is so much a part of my life nowadays?”

Physician, Heal Thyself: Pt.Vla The Great and Powerful Dr of Alz

Posted in July by

Did I ‘happen’ to mention that somewhere in the middle of the running from Dr A to Z that Miss Cathy started to regain some of her eyesight?

Yes, well, one day she called me into her bedroom and proudly told me what time it was from looking at the clock across the room from where she lay in bed.

That might not sound like much but considering that just days before she couldn’t recite the correct sequence of numbers on the clock (let alone see them), we took it as nothing short of a miracle (me more so than her because what she didn’t know was that Dr GG had just pulled me aside during our first visit to his office and told me to brace myself for the possibility that her condition could be permanent-or worsen).

Mom took my hand and looked up at me, her face flush with pride, eyes innocent as a young girl when she confessed that she had been quietly praying to God everyday for help and she was convinced that He had done what no doctor was able to do.

“Sounds good to me!” I said.

I’m not particularly religious, I consider myself a spiritual person, but I’m also a pragmatist so I was just thankful to whoever turned the lights back on in her brain.

I was happy to give God the credit, none of the doctor’s had been able to do anything so far.

But our celebration was short-lived when she started to regress then rebound back from confused and unable to see well to almost normal again.

So, it seemed that we’d just had a reprieve before we entered a new “confused today, clear tomorrow” phase of her disease.

I explained all of that and more to the program manager of the Georgetown University Medical Center as I tried to convince her that Miss Cathy had been through enough.

We’d (“I”) already been talking for quite some time but (to her credit and my surprise) she stayed on the phone with me, patiently listening as if she didn’t have anything else to do (which I knew couldn’t possibly be the case but I was grateful none the less).

She told me that as it is they were completely booked and Dr T had a full schedule so it would have to be a ‘special’ case for them to consider making room for a new client.

“I know that everybody thinks their loved one is special but we simply can’t take everyone that wants to get into the Clinic.”

“Hmm”, I thought, “did I think Miss Cathy was special?”, the word ‘special’ lighting up in my brain like one of those huge, neon signs in a Baz Lurhmann film.

Guess who’s coming to Breakfast: Pt lV

Posted in June by

Once inside the foyer, Aunt Dorothy made a big show of taking off her shoes (which was kinda sweet actually) even though Miss Cathy and I both tried to insist that she didn’t have to participate in the custom that we adopted from my sister-in-law’s Japanese traditions.

“No”, she insisted, demonstrating flexibility worthy of someone decades younger than her eighty-four years, smiling all the while as she bent down to unlace her shoes.

“I know what to do”.

It seemed to me that Dorothy wanted mom to know that she’d been listening during all their conversations since Miss Cathy became ill.

And that she remembered all the stories she’d heard about all the redecorating I’d done to the condo and the wall to wall carpet Miss Cathy was so proud of and how determined she was to keep it looking as new as possible for as long as possible (believe me, if she could have wrapped it all in plastic as was the trend in so many lower middle class households in the 60’s I’m sure she would have).

They walked arm in arm into the living room, comfortable to be in each other’s company again.

For the briefest moment I could see the girls they once were together, while Aunt Dorothy pointed out the various changes that had been made since she’d last been ‘up north’ as if she were the guide and Miss Cathy the visitor.

With everyone settled around the two matriarchs, mom in her usual spot at one end of the sofa nearest the windows and Dorothy across from her, to her left in a wingback chair, my cousin, Dennis in the wingback next to his mother and Darlene, his wife next to mine, I went off to gather drinks and start the meal.

I decided on a red, green and yellow pepper omelet stuffed with cheese, bacon on the side and toast, nothing fancy, just colorful.

I forgot to garnish the plate with one or two strawberries (always thinking that a ‘pretty’ presentation goes a long way in balancing ‘so-so’ cooking) because I was too busy trying to get the plates out as soon as I could to feed our guests, still not knowing how much time they had to spend with us before getting back on the road.

Laughter from the living room where Miss Cathy held court drifted into the kitchen and mixed with the sounds of the eggs cooking and bacon sizzling.

She’s never been at a loss for words and after years of hearing most of what she has to say, I smiled to myself as I folded and flipped an omelet, happy knowing that she had a new audience that she could entertain.

Guess who’s coming to Breakfast: Pt. lll

Posted in June by

My cousin phoned early the next day to invite Miss Cathy and I out to breakfast.

Neither of us acknowledged that strange sensation of hearing someone’s voice that you knew as a child but was never introduced to as an adult so we both feigned familiarity.

I thought the ‘plans’ (such as they were) was for them to come visit us at home. I’d stocked the fridge with food for breakfast, lunch or a light supper since I was never told when they would arrive.

I insisted that they come to us from their hotel nearby whenever they were ready.

Over my relative’s many objections when I said that I would cook for them he finally relented and I made sure he had the address.

I thanked him and said that they would be doing me a favor. Because of mom’s condition it would take a lot of effort and energy for her to navigate the crowds, noise and unfamiliar surroundings if we had to venture out to meet them in a restaurant-especially on a Saturday.

It seemed no sooner had I hung up the phone and started to prep in the kitchen that I heard a knock.

I’d expected to greet a gaggle of people that might resemble me in some fashion but there was only one person at the door, Aunt Dorothy.

My mother’s favorite sister in law and possibly my favorite aunt stood there, smiling up at me with open arms welcoming me into her embrace. As I leaned down to hug here I was amazed at how is it that a relative can loom large in our childhood mind’s eye of remembrance which is in stark contrast to the reality of the diminutive elderly relative standing before the adult me.

As I hugged here I saw my cousin’s wife, (whom I’d never met) and cousin walking up behind her explaining that they’d sent Aunt Dorothy inside while they parked the car.

Hearing the frackus of introductions and hugs in the hallway Miss Cathy toddled up to join in the hootin’ and hollerin’.

She’d waited a long time for a family reunion of any kind so it was nice to see her swallowed up in their embrace.

I’m sure to Miss Cathy that even as she invited them into her home it felt a little more like home, surrounded as she was by her kinfolk; their smiles, their touch, and their speech with it’s familiar southern singsong that must have been music to mom’s ears.

Guess who’s coming to Breakfast: Pt. ll

Posted in June by

It’s not easy watching Miss Cathy carry her anger and hurt about her family around like a wounded bird, gently tending to what’s broken yet ever ready to wage war lest it be taken advantage in its weakened state while trying to make peace with the damage done.

And just as sure as the sun follows the moon you could count on a diatribe whenever the tender subject of her families absence from her life comes up.

“I’ve been running up and down the highway for years taking care of them, taking time off from work, leaving my kids when they needed me”, she’d say, working herself up then her voice would calm down and her anger would turn wistful, “if I knew that this is the way that they would treat me….”

When her anger was spent she’d confess that she wouldn’t have done anything differently; she would still have gone to care for her mother when she was alive, even though there were siblings living right there in the same town (and on the same street).

She’d do it all again for any one of her three sisters or two brothers if they needed her.

Such is the nature of families, a conundrum wrapped in an enigma.

I can’t imagine how she feels.

She just always assumed her family would be there for her in kind.

Looking in on her life as I have the past three years, I can see that they care (evidenced by their phone calls) but no one seems to care enough to make time to visit.

That’s why I always refer to her family as ‘relatives of unknown origin’.

To me they’re not worth identifying or remembering as individuals when (for years now) the lot of them have displayed the same disappointing ‘group think’ and continue to offer up excuses and indifference instead of showing up.

In my book, it’s very simple “if you care-you’re there”…period.

Family is made up of more than blood and the happenstance of kin; family isn’t just order of birth and it isn’t a birthright.

‘Family’ are the people that love, support, and nurture each other. Family are the people that you can turn to, lean on and you always know that you can let down your defenses because they are there to defend you.

So, with the arrival the next day of mom’s sister in law, nephew and his wife it was gratifying to know that someone(s) in her family was finally making an effort.

Regardless of how long it’d taken or for whatever reasons they stayed away so long, the simple act of showing up is a powerful first step toward making themselves worthy of relatives being known.

Guess Who’s coming to Breakfast: Pt. l

Posted in June by

Not too long ago Miss Cathy received a telephone call from her sister-in-law telling her that she was coming north from the Carolinas for a visit.

This would be the first time any of her immediate family has come to see her since her husband died fifteen years ago and her Alzheimer’s diagnosis almost three years ago.

Mom was so excited to have ‘company’ that she was bathed, powdered, hair coiffed and anxiously waiting on the living room sofa early on a Friday morning dressed in a cream colored top with applique at the sleeves and a pair of slacks in a festive red color (so much better than her almost daily uniform of an oversized tee shirt over army fatigues).

She was like the first kid up on Christmas eagerly waiting for everyone else so they could all share in the magic of the day together.

Her favorite sister in law (widow of her oldest brother) was being driven North by one of her sons and his wife. They were stopping for a brief visit on their way up the East Coast to New Jersey to see other relatives.

“So”, I thought to myself when I heard the news of the impending visit, Miss Cathy was only the appetizer and the relatives further up the Northeast corridor the main course but, hey, “a visit is still a visit”.

Her family, mostly all of who live ‘Down South’ consists of three sisters, a brother, their spouses and offspring. And for whatever reason they’ve kept in touch pretty much the same way through the years, regardless of what’s happened, via telephone and the occasional holiday or birthday card till now.

Since I’ve lived here I’ve overheard promises from her family to visit and plans being made but for whatever reason the rubber never hit the road and they never come.

The only family she has seen since her diagnosis is her cousin, Mary and Mary’s two grown daughters who live here in the same state as mom.

But, I don’t think the reason they come is because of proximity, the come because they care.

Believe me, I am just as grateful for Mary and her daughter’s visits as Miss Cathy. They come with love and leave love behind.

It’s my firm belief that at the end of the day ‘people do what they want to do’; so wind, nor rain, nor front row tickets to a Lady Gaga concert could keep someone away from whatever it is that they really want to do.

So, the fact that not one of her siblings has come to see her is an on going source of pain, anger, disappointment and bewilderment for Miss Cathy.

But she was obviously ready to let all that go as she sat, barely able to contain herself every time she ‘thought’ she heard someone at the door, waiting for a familiar face from home.

When I walked into the room to help her with her morning meds it almost broke my heart to have to tell her that they weren’t due to arrive till Saturday.

Physician, Heal Thyself: Pt.Ve

Posted in June by

Miss Cathy sat in the chair in the examination room and (for once) just listened (instead of interjecting herself into the conversation) as Dr GG and I squared off.

To be fair, we were talking about her just not to her, an unenviable position I’m sure but it’s more efficient for me to speak on her behalf (as it would be for any caregiver) than for the doctor to play twenty questions with the patient and have to try to interpret every answer for truthfulness and accuracy.

It wasn’t that the doctor and I were at odds, or having a disagreement really, we’d been in synch pretty much from the minute he walked in the room, it was only when I tried (and I knew better but couldn’t help myself) to get him to talk ‘smack’ about another doctor that I hit the ‘White wall’.

So, it was just a matter of me not having the energy to read between lines any more than mom could read the large capital letters projected on the wall that caused a kerfuffle.

I shouldn’t have tried to pit one doctor against another, but (after being exposed to a doctor that knew what he was doing) I didn’t need Dr GG to corroborate my suspicions.

I knew that it was time to bid adieu to Dr A and his fawning ways.

It was one thing to keep my opinions about Dr A to myself (or try to anyway) when her condition was more or less stable and quite another when she needed more than just someone holding her hand and calling her ‘mom’.

By the time we left his office alittle while later Dr GG had concluded that there was a possibility that mom’s confusion and loss of eyesight might be related to her Alzheimer’s but he couldn’t be sure.

He also suggested that we seek a second opinion from a Dementia Specialist (a ‘specialty’ that I did not know existed until he explained it all to me and it makes sense given the rise in diagnosis each year) and he said that he would consult with a colleague to get me some names of someone we could see.

It’s funny, all this time I thought I was doing the right thing by taking mom to a ‘neurologist’ but now I was wondering if I’d dropped the ball wasting my time on the ‘GP’ of the brain when there was someone out there skilled in her disease specifically….I felt like a yutz.

They say ‘hindsight is 20/20’ which Miss Cathy no longer had so I guess it’s better to look forward than back.

Before I could fall too far down the rabbit hole of ineffectiveness Dr GG (true to his word) emailed me a few days after our visit with the contact information of a prominent doctor that specialized in Dementia who headed a top University clinic not far from us in the Nation’s Capital.

Dr GG wrote that there were only a few Dementia Specialist in the country so I should be aware that the demand to see this doctor was high and that he rarely took on new patients.

Sounded like a challenge and if it was, I was up for it.

Come back Miss Cathy: Pt. l

Posted in May by

The 1950’s stage play (and later film version) of “Come Back Little Sheba” was a story of a housewife in crisis heartbreakingly portrayed by the late great actress, Shirley Booth.

Her character stands just outside her kitchen door (and her life) late at night where she can be heard calling for her lost dog.

During the course of the drama it becomes evident that she’s longing for the return of more than just (wo)man’s best friend.

This morning it struck me that the same could be said of Miss Cathy.

While she rarely stands anywhere for long these days she does seem to be lost in thought a lot and more often than not looking out the window as much as she’s looking a the television.

Her introspection led me to wonder…do her anxieties and nervousness go deeper than the dementia? Does the fact that the ‘present’ confuses her open her up to see the ‘past’ more clearly? And if it does, what does she see there?
Is she looking for something other than what that she’s lost since her diagnosis…her independence, freedom, sense of self?

She’s just started therapy recently and I am hoping it will help.

After her first consultation I went in to talk with the therapist for a moment, she warned me that sometimes (depending on the trauma or issues uncovered) an elderly mind can be determined to be too fragile to confront whatever has happened (this is especially true of some dementia patients) and if that’s the case then it might be best to let the past stay unexamined.

I know some of Miss Cathy’s past troubles and hardships but it’s not for me to say, nor for me to judge how she’s walked thought her life, her choices and what she chooses to talk about.

Everyone’s life contains pain and it’s up to the individual to bare witness (or not) to his or her own emotional holocaust.

With that in mind I’ve encouraged mom to continue therapy (she was questioning whether or not to go back after only one visit) and to give time time.

My hope is that in time she may feel safe enough (and comfortable enough) to finally talk about what’s been unspoken for so long.

#AromaTherapy

Posted in May by

I feel as if I have failed Miss Cathy.

This thought comes to me as she and I sit next to one another in her therapist’s office. In these closed quarters there is the distinct odor of… how shall I put this…body odor.

But, is it body or booty? I can’t be sure which but what I do know is that it ain’t me and there ain’t nobody else waiting to get their head shrunk so it’s gotta be Miss Cathy.

With all that she’s going through it’s definitely not her fault. It stands to reason that if she’s trying to put her tops on as bottoms that she might not be as attentive to her bottom bottom during her ‘toilette’.

If anything I was remiss in not considering the possibility that even very personal routines might be affected by her recent confusion.

I guess I’m still a work in ‘caregiving’ progress because I (thought) I was ‘allowing’ for her independence and personal space by not policing her personal hygiene but I should have smelled this coming once things started to go south mentally.

I really shouldn’t beat myself up (it’s not like that’s gonna freshen up the air around us) the thing to do now is to focus on making sure that this never happens again.

So, after we leave here I will need to have a conversation with her about hygiene in the car on the ride home.

Since I’ve been her caregiver there is little I haven’t done already (including bathing, clothing and feeding her) during those times when things were really bad but those times are few and far in between and there seen to be different levels of boundaries and intimacy depending on how sick or well your loved one is at any given time.

Hygiene is a difficult subject to broach with someone, no matter how close you are or how boundary-‘less’ you seem, there comes a time when the conversation turns to cleaning.

We decided to add ‘moist-towelettes’ to her routine and to always have a small bottle of mouthwash and spray perfume in her purse so she can freshen up.

It seems to me that this is yet another ‘marker’ on the great ‘slide’ downward.

Just when you think its ‘one’ thing, another ‘thing’ pops up to remind you that your loved one is slipping away.

Things may be difficult and we’re juggling a host of issues from cognitive, visual and emotional, but she’s still Miss Cathy, a woman of great dignity and it’s my job to make sure that dignity stays intact, even when she’s not aware of it’s absence.

Be that as it may, if she is slipping from now on she’ll fall into therapy smelling baby fresh with just a hint of her favorite ‘Oscar De La Renta’ perfume.

Update: This post was written on April 14th during a challenging time that has since improved, yet another example of the ‘up and down’ nature of this disease.

I’m happy to report that (for now) Miss Cathy’s does not need as much supervision or so close a scrutiny as to have to pass the ‘smell test’.