Casino Royale…Pain: Pt. l

Miss Cathy barely wants to go out anymore.

Not because she can’t, far from it, she’s just been isolating lately (and by ‘lately’ I mean the past couple of years).

Hey, I understand not being a social person, I’m pretty anti-social myself, preferring my solitude over the company of others usually (guess the apple falls from the tree to get away from the others) but I do make an effort at social intercourse and realize the value that being amongst my fellow man brings, physically and mentally.

But not mom, nope, she’s inside breathing the same air (did I mention she has an aversion to opening windows-“let’s the dust in”) and her only companions can be found on the television.

She cancels more hair salon appointments than she keeps (and those are only every six weeks) and she breaks promises to visit or go out with her girlfriend as a rule and not the exception.

I’ve written extensively about her refusal to go to a Senior Center, shopping, Community center, etc. so no need to bore you and infuriate myself by recounting any more of that here.

Maybe it’s a combination of illness, depression, inertia and the slowdown that affects most elders but in her case (not to generalize or speak to anyone else diagnosed with Alzheimer’s) it’s as if she’s taken the ‘living’ out of her life.

Suffice to say Miss Cathy is an island unto herself, the land mass is slowly sinking and being taken over by the seas of dementia.

And even though she doesn’t want to do much of anything related to leaving her condo the one thing she’s always ‘up’ for is a trip to the casino, specifically “Live” Casino which (conveniently) opened up a coupe years ago about twenty minutes drive down the Parkway from us.

She might (occasionally) forget to wipe herself but she never forgets that place.

Thankfully she doesn’t pester me to go play the fifty cent slots as often as she used to, like some junkie needing to score at a crack house.

So, I try help her scratch her gambling itch by ‘offering’ to take her every couple of months, a ‘reward as it were for here restraint.

And it’s an offer she’s yet to refuse.



Not their denial

Not their forgetfulness

Not their anger, nor your frustration

Not their confusion

Not their willful obstinacy

Not their incontinence

Not their inconsistency

Not their inability to recognize you

Not their malaise

Not their depression

So, remember this as you care for your loved one

Nothing lasts forever,

Not their smile
Not their laughter

Not their wisdom

Not their courage

Not your connection

Cherish the good,
Forgive the bad

What will last is the love

And that will live on…forever

A Caregiver’s Online Guide: TyTips Pt. lV

12) Don’t parent your parent the same way they parented you

Now that you have assumed responsible for the care and protection of your parent doesn’t mean it’s time for you to work out (or take out) any negative childhood grievances you may still harbor as to the way you were raised

“If” you feel you were mistreated in your childhood now is not the time for pay-back

Being a caregiver does not give you license to administer retribution for any transgressions that may have occurred

You have been entrusted as their caregiver-not judge/jury presiding over the past

Treat your loved one with the respect, love, consideration and care that you ‘wished’ you’d received or that you would hope to receive from YOUR loved one if/when (heaven forbid) you are stricken with the disease yourself

13) It’s not all about ‘them’, Carve out some ‘you’ time during the day

Take the focus off your loved one and putting it on yourself

We (as caregivers) have a tendency to make it all about our loved one 24/7 but it’s just as important to find time during the day to take care of yourself

Do something for yourself, even if it’s just for 1 hour a day; go to the gym, take a walk around the park or go to the mall for some retail thereapy, visit a church, temple or mosque to just sit, pray or meditate

14) Driving

As caregivers we are the people that are around our loved ones the most and we are best in a position to determine whether or not they should continue to drive

If you do not trust your judgment to be impartial (thinking you may be disloyal or fearful of your loved ones wrath), take your loved one to their geriatrician or primary care physician and let them decide if it’s still safe for your loved one to drive

Remember, if your loved one gets behind the wheel and has an accident, they could not only get lost, they could harm themselves and others as well (potentially fatally) and YOU may be legally held responsible for whatever occurs if you knowingly let your loved one drive knowing were a danger to themselves and others

15) Join a support group

Make sure that you have someone (or a group of people) that you can go to for help and support

Your loved one is not the appropriate person to turn to when you need to vent your frustrations or have a question regarding their care is great resource to find help wherever you live as well as community newspapers, newsletters, and blogs

To Be Continued: I welcome your comments or suggestions from your experiences

Happy Birthday?

“Happy Birthday Son!”

Miss Cathy said the words with love and affection as I walked into the living room on Saturday morning with the cup of coffee that she’d forgotten in the kitchen.

“Thank you”, I said, smiling down as I handed her the cup.

“That’s sweet of you to say except today’s not my birthday.”

“Todays the fourth isn’t it?”, she stated rather than asked, looking very self-righteous as any woman who was present at the birth would.

“Yes,” I replied, “today is the fourth.”

“And no mom”, I gently reminded her. “My birthday is on the eighth.”

“You’ll be fifty four?” she asked, alittle less sure of herself.

“Close”, I said,” fifty-five.”

We went round and round a couple times before she was convinced that I was right (which meant that she was wrong) and then there was a moment or two of silent recognition before the expression on here face seemed to say, ‘this is one more of those things that she was sure of that she’s not so sure of anymore’.

I sat next to her, not saying anything (after all, what is there to say really, in a moment like that? Personally I think it’s best just to be there but let her be).

We sat for a moment or two in silence while she’d collected herself and then she told me that she appreciated everything that I do for her (a much appreciated sentiment but an odd segue nonetheless).

She said she’d been meaning to tell me that my moving in to take care of her allows her to sleep peacefully at night in her own bed so she’s not afraid and that meant a lot.

Then she handed me a small stack of bills and said, “Here, I’ve got alittle present for you,”

The non-sequiturs just kept coming.

“Happy Birthday!” she said again.

I thanked her for the present and hugged her, not quite sure if she’d forgotten the conversation we’d just had about ‘when’ my actual day of birth was or if she was just acknowledging my birthday in general.

When your mother is convinced of the wrong date for your birth, not to be confused with being ‘wrong’ about the age of your child by a year (which is more or less understandable).

Hell, sometimes I forget how ‘old’ I am.

But, to not know with certainty something as fundamental as the day of the month to which you gave birth (to one of your two sons-it’s not like she’s Mrs. Duggar of “19 Kids & Counting fame) portends other ‘knowns’ to become ‘unknown’.

I just sat there, counting my money and smiling, thinking, there are so many things wrong with that exchange; suffice to say no more evidence should be needed as proof that Miss Cathy’s Alzheimer’s is advancing.

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. 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

A Caregiver’s Online Guide: Learning to love your loved one (even during those times when you don’t like them very much)

It’s not one long love-fest when you’re a caregiver. You can’t expect that you will be showered with thanks and praise on a daily basis.

Let’s face it, it’s hard to hold onto that warm, fuzzy feeling of knowing that you’re doing the right thing when it seems (sometimes) as if your loved one is doing everything wrong (and sometimes you get the suspicion they’re doing it on purpose).

We, as caregivers have committed ourselves to the selfless act of caring for a loved one who may or may not even know who we are sometimes or have the ability to know that they should be grateful for all that we do.

And at the same time we have to acknowledge that we are still fully formed, feeling people who (like it or not) have a response to the “who, what, when and why” of our daily lives and that emotional response can be at odds with what we’re trying to do for our loved one.

Most days you’ll be taken for granted and some will be filled with confrontation, frustration and anger.

While other times your loved one will be constantly underfoot and smother you with so much love that you think you’ll suffocate from all the attention and wish there was a place to hide.

And inevitably there will come a time when, as a caregiver, you have to ask; what do I do if I don’t like the loved one I’m caring for?

Speaking for myself, I will admit there are days when Miss Cathy drives me absolutely crazy and others still when I simply don’t like her.

That’s not to say I don’t love her, I do, but we all know we can feel more than one thing at a time for a loved one.

Remember, ‘feelings aren’t facts’ so there’s no need to beat yourselves up over any negative emotions you may feel at any given time or place during your tenure as a caregiver.

Since we’ve all been charged (by choice or circumstance) with our loved ones care we can’t just walk away when we’re angry or frustrated so we need tools to help in those moments when we’re at our wits end.

I’ve complied a list of ‘dos’ and ‘don’ts’ that I will post and that I’ve found to be very helpful when “like” seems to be the hardest word to paraphrase an Elton John lyric.

I hope that you like them and they can help you to ‘like’ your loved one.

The Group: Pt. Xl

The facilitator said, “All of you as caregivers have to remember that your loved one’s brains aren’t functioning the way they used to so they’re scared and confused half the time by the world around them, sometimes they don’t even know why they’re scared-they just are.”

“So, it might not seem like there’s a reason to you”, she said to *Jane, ”but your husband is fighting against something that is very real to him. He just might not be able to articulate it.”

“That could be part of the reason your husband is lashing out.”

Like Jane, I sat back and let the words wash over me, drinking in the notion that Miss Cathy, like Jane’s husband, isn’t ornery just for the sake of being a bitch, she’s probably afraid and anger is the only emotion she can access.

There aren’t any little children running around our place like there is at Jane’s but I could relate to her dilemma when confronted with giving her husband choices.

Like Jane’s husband, my mom becomes overwhelmed in the face of what seems to me to be simple, ordinary choices but it’s gotten harder and harder (and more and more volatile) when it comes time for Miss Cathy to make decisions, so I made a mental note to whittle her options from “alot” down to two or none whenever possible.

The facilitator suggested that we always ‘check’ ourselves before we engage with our loved one (especially if they are having a bad day) and to never argue with them.

“You will never ‘win’ a battle with someone with dementia so why try, “ she said, “and do not try to engage them if you are angry yourself.”

I was reminded of a concept I learned in a 12-step program years ago when dealing with my own struggles.

It’s called “HALT” and it’s an acronym to remind oneself to stop and ask ourselves if we are “Hungry, Angry, Lonely, or Tired” before we put ourselves in the path of conflict.

And if in going down that mental check list we were to discover that we were one (or more) of those things then we should take care of ourselves first and then engage with the situation or another person.

Remember, even flight attendants advise that you “put the oxygen mask on yourself first and then on a (small) loved one in your care.”

* Names, characteristics and descriptions of people that I’ve met along my journey have been altered or changed to protect their privacy.

The Group: Pt. lX

The facilitator explained that people with Alzheimer’s can become easily overwhelmed when presented with too much information or have too many things to pick from so she suggested to Jane that maybe she shouldn’t give her husband so many choices for breakfast.

She said that maybe we should all think about narrowing down options when the situation presented itself, to limit the choices to one or two for our loved ones to make it easier for them to make a decision.

“Scrambled or fried eggs for breakfast and that’s it”, she said to Jane.

“Don’t ask him to pick from what (to him) seems like an endless menu.”

She explained that having to make (what seems to us) a ‘simple’ everyday choice could cause great anxiety for our loved one because their cognitive skills and reasoning are deteriorating and they can’t process information the way we can (and they used to).

“Or you decide”, she suggested, giving Jane yet another option, “don’t even give him a choice, when he comes in to breakfast just serve him.”

Sometimes, she said, as caregivers we don’t have the luxury of a discussion with our loved one (because of whatever stage our loved has been diagnosed) so, sometimes the best thing we can do is to make the best choice for them.

I have to say, I was impressed; with the honesty of Jane’s “share” and the no-nonsense practical suggestions the facilitator was giving her and to the rest of us by extension.

Although breakfast isn’t a hot spot between Miss Cathy and me, the information was still relevant and I thought perfect for Jane, so imagine my surprise when she said, “but he’ll just get mad if I serve him the oatmeal, he’ll say, “I want eggs!”

“Okay,” said the facilitator without batting an eye, “then you eat the eggs and give him the oatmeal.”

“As far as your grandchildren are concerned, you have to understand that alot if times loved ones with Alzheimer’s develop very sensitive hearing and it’s hard for them to understand things in higher resisters, all they hear is a lot of unpleasant high pitched noise.”

“And what do little kids have?” she asked somewhat rhetorically.

As a chorus of “high pitched” “Squeaky” and other descriptives for the immature vocal chords of small children were bandied about, there was also the sound of laughter; ‘laughing’ with each other and not at anyone in particular, a common sound that I should come to recognize (as I had from other 12 step groups) as a way of saying “I’ve been there, too” or “I thought I had it bad”.

And, as I sit in the meeting, listening to the shares from members of the group I’m reminded like John Bradford,, “There, but for the grace of God, go I.”

…”That’s what I’m here for”

“Can you come here for a minute?” Miss Cathy called out the familiar refrain.

I’ve heard that phrase as a preface to many a request in the last three years.

“Can you help me hook my bra, I can’t seem to get it on.” (Which usually means it was on backwards, inside out or both and is followed with a litany of expletives of how much she’s always hated being ‘busty’)

“What day is it?” (She asks this almost daily now, which is understandable for someone (anyone really) who doesn’t have a job, deadlines or have to rely on a schedule or clock any longer. But what I find troubling is that there are days when it’s after dark and she can’t distinguish whether it’s day or night)

“How much is four times twenty?” (This usually happens when she’s trying to count money)

“I can’t find a can of soup in the pantry, can you look and see if we have any.” (The pantry is stocked full of canned, paper and other goods that she can never seem to ‘find’)

“This TV is messed up again, I can’t get it to work right.” (This usually means that she’s pushed the wrong button or any number of random buttons on the remote causing the TV to either shut off, switch to DVD, Video mode or have to reboot itself after so much activity)

“Did I take my medicine? Is it time for me to take my medicine?” (Since I’m in charge of dispensing her meds I can usually remember if she has and if not, looking at the weekly pill dispenser easily solves the problem)

“Can you dial (insert the relative or friend’s name here) for me?” (Unfortunately she lost the ability to remember telephone numbers she’s known by heart for decades along with the loss of her short-term memory)

And so on and so forth, that’s just a sampling of what she asks and what she needs, not all at the same time and not everyday (Thank God) but so goes the dialogue and familiar ways and days of living with Miss Cathy.

“Can you come here for a minute?” she’ll ask.

“Of course”, I reply, “that’s what I’m here for.”