Prisms


As the year draws to a close it’s time to take stock and take inventory of all that’s past.

About a year and a half ago I felt as if a bomb had detonated internally that set off an explosion of emotions affecting my role as caregiver, son, friend and lover.

It was as if everywhere I looked all I could see littered before me was the damage; like shards from a broken glass, no longer able to discern if it were half empty or half full before the blast.

At the time I wondered how I would survive it all, was I strong enough? Was it my fault somehow that I’d attracted so much negative energy into my life?

And as I look back through the kaleidoscope of compartments that I’d lived my life at the time, coloring my world from light to dark there was alot of fault to go round but now I realize that dwelling on assigning blame serves no purpose.

So, as much as I twisted and turned from relationship to kinship, after l looked past the hurt (real or imagined) and disappointment (past and present) what was obscured was the love that should have colored it all.

I firmly believe “that which doesn’t kill us, serves to make us stronger” and I’m still here.

The ‘who, what and why’ of what’s happened aren’t as important as the lessons learned.

I’ve made mistakes and now I’ve made amends.

I’m reminded of the words of a kindly doctor whose books are prescriptions for how children’s (and the child in us all) should heal our lives; “No matter where you go, there you are”.

I remind myself moving forward that there will be bad days but at any moment I have the power to ‘start my day over’, to change my mindset and make my experiences work ‘for’ me and not against me.

If I can accept the negative that comes into my life then I also must embrace the positive that can be made manifest through thought and action.

What I’ve learned is to embrace the life that I have and not covet the life that I thought I’d be living. I can’t long for the fantasy of what might be because then I’d miss the reality of what’s happening in the here and now.

My time here is hardly over, if anything it’s just beginning as I enter my fourth year of caregiving.

On the eve of 2014 my life might not look like what I thought it would be but when I open my eyes each morning who I see reflected back at me through the looking glass is someone that is finally at peace with his time in this place.

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#TimetoMaketheDonuts


Time to make the Donuts

My day is not unlike that of Fred, the dutiful baker who goes off to work in the pre-dawn hours to shove dough in and out of the ovens (long before most people are awake and craving their daily doze of sugary pasty) only to come home in the dark of night and do it all over again the next day, and again, and again….well, you get the picture (rather, you’ve just seen the classic television commercial thanks to youtube).

But, instead of donuts my days and nights begin and end in the darkness working for Miss Cathy.

I rise around five a.m. to start my day (for her) by turning off the alarm system located on the kitchen wall and then pulling out whatever breakfast meats or leftover’s she’s going to eat; then into the living room where I turn on the TV, open the blinds and double check that her morning meds are in their container.

This wasn’t always my routine, and Lord knows I haven’t gotten up this early since I was in high school, living at home and part of my chores was to get up (long before I needed to for school) and go out to start my mother’s car to ‘warm’ it up, turn o the heater or a/c for her drive into work….. And irony of ironies, here I am almost forty years later getting up early on mom’s behalf as well….I guess there is a sort of symmetry to that, but I digress.

I’ve learned to do this after many morning where I was startled awake (more than once) by the sound of either the alarm going off (when she’s opened the front door and forgotten the alarm was still on) or it’s the electronic ‘beep-beep’ sound her frantically pushing buttons as she tries to remember and enter the code to disable said alarm system.

Other times I’ve been rudely awakened by the harsh, static noises emanating fro the television when she hits the wrong buttons that have me up with the bakers to get things ready for whenever she starts her day.

I make sure everything is ready just in case she stirs before me, then it’s back to bed for a couple hours before I get up to start ‘my’ day around eight thirty (I have the luxury of being an artist and have spent the majority of my career working for myself so I don’t have to report to an office).

I’ve don’t mind really, it’s quiet and peaceful, much like when she takes a nap in the afternoon or goes to sleep at night.

That’s when I find I can get things done around the house like cooking, laundry, cleaning, making phone calls to set up appointments or paperwork (I call those “administrative days”) without her being underfoot, needing me to any number of little things that add to distracting me form whatever I’m trying to do for me (or for her on her behalf).

At night, after I’ve given her evening meds and a few hours later turned out her light, I cook for the next day, straighten up the living room, clean the kitchen and then I get to have ‘my’ evening; to go for a swim lesson, read, write, watch TV or a film and occasionally to go out for a bit to remember what it feels like to have a life independent of being a caregiver.

Then, all too suddenly it’s time to turn on the alarm and it’s light out for me around midnight or so and before you know it, it’s time to get up to ‘make the donuts’.

Valley of the Dolls: Pt. l


Some days it seems my whole life is pills, pills, pills…or “dolls” as Neely refers to them in the film “Vally of the Dolls”

Miss Neely O’Hara is played by a woefully miscast but brilliantly over the top Patty Duke, trying to earn some adult film role cred after years of playing a dual role as teenaged (get this) “twin” cousins on the popular television show “The Patty Duke Show”

“Gimme my dolls!” she screams at one point to obliterate her pain (or the pain of screaming lines like those).

But, I digress; the pills that rule my life are not ones that I’m screaming for (although Neely may have been onto something).

No, the colorful little pellets I refer to are the prescription medications for Miss Cathy’s daily consumption.

In the mornings she takes:

1) Vitamin D3 1000iu (1 per day) For Bone Health
2) Vitamin B-12 (1 per day) Keep the body’s nerve and
blood cells healthy
3) Losartan Potassium 25mg (1 per day) For High Blood Pressure
4) Folic Acid 1mg (1 per day) For Memory
5) Amlodipine Besylate 10mg (1 per day) For High Blood Pressure
6) Metformin 500 mg (2 per day) For Type 2 Diabetes
7) Escitaopram 5 mg (1 per day) For Anxiety

In the evening she takes:

1) Aspirin 81mg (1 per at nite) Prevention of Blood Clots
2) Donepezil 5mg (1 per at nite) For Alzheimer’s
3) Namenda XR 28mg (1 per at nite) For Alzheimer’s
4) Metformin 500 mg (1 per at nite) For Type 2 Diabetes

As you can see, it’s quite the list and now her neurologists want to add to it!

Time to step back and see if Miss Cathy can fit another ‘doll’ on her shelve.

Before I present the best possible options to mom for her consideration, I (along with her doctor(s) need to access the benefits, effectiveness, side effects, costs and toll of all these medications on her system.

A Caregiver’s Online Guide: TyTips Pt. lll


8) Never lose your temper:

Find a response other than anger if/when your loved one does something that makes you angry

I know, “easier said than done” but practice makes perfect so ‘practice’:
a) Deep breathing
b) Counting to ten (or one hundred)
c) Walking out of the room
d) Telling yourself over and over that its ‘The Alz’ and not your loved one making them act the way they are (which in turn is making you mad)

…Doing whatever you need to do to squash your anger is as individual for the caregiver as the progression of the disease is for your loved one

Remember, anger only begets anger so nothing positive will result from indulging this negative emotion. Besides, your loved one will probably respond in kind or become confused or hurt, none of which should ever be our ‘intention’

9) Not everything your loved one does ‘wrong’ is an opportunity for you to show them how to do it ‘right’:

If your loved one is repeatedly engaging in the wrong behavior then they are probably past ‘teaching’ for the most part (sometimes this change in behavior can be an indication that the disease is progressing and/or other neurological changes are at play.

If you notice that they are starting to get more things ‘wrong’ or different activities/behaviors are becoming a challenge it may be time to take them to see their neurologist for a check-up)

Some behaviors can be modified or re-taught but people diagnosed with dementia have short term memory issues, impaired cognitive skills and decreased problem solving abilities so depending on what stage of the disease they are and their individual manifestations of the disease you (as their caregiver) should adjust your expectations accordingly regarding what they are capable of doing and learning

10) Never scold or chastise your loved one:

Every time something happens that is aggravating, annoying, surprising or disruptive does not necessarily give you license to ‘dress down’ your loved one using harsh words

After you have calmed down, take the time to either explain why their behavior was inappropriate, wrong or upsetting (knowing that they may or may not understand or retain what you have just said and repeat whatever has just happened)

11) Your safety comes first (yes, even above your loved ones):

Do not underestimate the power of the disease by thinking your loved one would never harm you. Do not think that your experience with their ‘non violent’ past persona has anything to do with what they are capable of in the present

If/when (heaven forbid) they become violent, it’s not the time to discuss, negotiate or make the mistake of passively thinking, “They would never hurt me” and not take steps to insure your own safety

Never hesitate to leave the room and lock the door behind you if you feel physically threatened in any way

Remember, even the airlines suggest that you ‘put the breathing device on yourself first, then on your little (loved) one’…translation, if you don’t put your safety first-then how are you going to be able to help some one else

To Be Continued: In the interim, I welcome your comments or suggestions from your own experience

A Caregiver’s Online Guide: TyTips on how to care for your loved one: Pt. ll


4) Don’t ask your loved one to do something that you know they cannot do:

Sometimes we think that a loved one is being ‘lazy’ or not living up to their potential but the reality is that when you see that they are struggling to perform a task (that was previously not a challenge to them) it may be a sign that their disease is progressing, instead of insisting that they ‘can’ do whatever it is that they cannot, accept this as fact and move on

Do not berate them or think that you can turn this into a ‘teaching moment’, in most cases this exercise will only end in their frustration and your anger and disappointment

5) Find a space that is yours:

It’s important to have a room or place where you can go to relax, unwind or decompress from the stress of caring for a loved one

It’s important to create a space that is yours alone to retreat to is yours alone

6) Say good-bye to ‘who’ they used to be and hello to the person they are now:

Trying to get your loved one to ‘act’ or ‘react’ the why they did before they started on the spiral down into dementia is futile

Make peace with the person they are ‘now’ and adjust your expectations and requirements accordingly

Best to mourn the loss of who they used to be and be grateful for the moments when there is a flicker of their former selves

7) Keep to your schedule:

Loved ones with dementia respond well to structure and routine

Do your best to be consistent in your actions and deeds

(For example:

If you say you will take them somewhere at a specific time-do not be late!

If they are used to bath time being at 7 pm-don’t start turn on the shower at 7:30pm!

To Be Continued: In the interim, I welcome your comments or suggestions from your own experience

A Caregiver’s Online Guide: TyTips on how to care for your loved one: Pt. l


The following are a few simple TyTips (suggestions for you to ponder or practice) that might help when it seems like the only light at the end of the tunnel is complete darkness:

1) Start thinking of the things that you do for your loved one as ‘work’ and act accordingly:

Let’s face it, we all have different standards (usually higher) at work than at home so why not use that to your advantage

By utilizing the discipline, skills and organization at home that you would employ at work, your days will be more productive (the things that you do will be less of a ‘chore’ and more of a ‘task’)

2) Detach:

Detachment can become your best defense against personal attacks

Separating your emotions from the task at hand when you are caring for a loved one can sometimes save you from getting hurt or feeling resentful

If you can separate your feelings from the person you’re caring for (spouse, parent, sibling or friend) then you might be better able to focus on the task at hand when they become verbally abusive or belligerent

3) Stop arguing:

Engaging in an argument with a person with dementia is about as productive as trying to milk a bull

If your loved one becomes argumentative you can listen to what they have to say without responding (sometimes they just want to be heard)

Change the subject (by not directly responding to what they are emotionally upset about you might be able to ‘shake’ them out of their agitated state ad back to rational conversation)

Walk out of the room (sometimes leaving the room and coming back gives your loved one time to calm down, and the simple fact of walking in/out of the room instantly changes the dynamic that existed between the two of you…and (better yet) sometimes gives your loved one time to ‘forget’ what they were being argumentative about)

To Be Continued: In the interim, I welcome your comments or suggestions from your own experience