Tag Archives: Life

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

Posted in December by

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

Posted in December by

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)

Posted in November by

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.

Hair today (not) washed tomorrow: Pt. ll

Posted in November by

I find no pleasure in harassing Miss Cathy about her hair.

I know it’s embarrassing, and I know it’s a hard thing to hear, what parent wants their child telling them ‘they need to wash their hair’…never mind that the ‘child’ in question is fifty-four years old.

Mom’s issues around taking a shower (more specifically refusing to wash her hair on a regular basis) are bordering on the pathological.

She insists that “I don’t know what l’m talking about” when it comes to her hair care.

Her ‘go to’ defense is that I don’t understand because ‘I’m a man’ (as if the addition of a Y chromosome has anything to do with the maintenance of the follicles on top of one’s head, which are identical regardless of sex, but facts and science don’t seem to dissuade her from her argument-much like the Republicans members of the Tea Party).

Her other line of reasoning (if you can call it that) is that I don’t understand because ‘she has a ‘chemical curl’.

For those readers that are not African-American, think the opposite of the “perm” you went to the Salon to get back in the 70’s to make your straight hair curly, blacks go to their hairstylist to straighten their natural curl so, somehow (in her mind) the fact that her hair’s been treated exempts her from the routines of regular shampooing.

I find both lines of defense equally irrelevant because a) hair is hair-no matter on whose head it lies and 2) in my youth I’d been to more salons and had my hair “fried, dyed and laid to the side” more times than I care admit or that she’s ever likely to subject her hair to and c) who gives a sh*t if your hair is chemically treated or natural!

Hair is hair and non-washed hair is still unclean hair, no matter what a person’s done to it.

The last time we argued she told me that I don’t understand because, “black hair is different” at which point I looked at her as if she’d completely lost her mind and said,
“Just who do you think you’re talking to? What do you think I am?”

“Are you kidding me?!”

I’ve always found the ‘it’s a black thang’ a lazy (and obvious) argument between the races so imagine my disappointment (and surprise) that she was trying to play the ‘race’ card-and against her own race (not to mention her own flesh and blood…unless she forget to tell me that I’m some immaculately conceived progeny that’s been checking the wrong ethnic box on the census all these years).

Anyway, there’s Alzheimer’s and there’s just plain old “whatchu talkin’ about Miss Cathy?”

Hair today, (not) washed tomorrow: Pt. l

Posted in November by

I’ve found that some of the most combustible exchanges with the loved one in my charge revolve around hygiene.

You’d expect this to be true if it were a child in my care but I’m referring to the seventy-five (going on five) year old Miss Cathy.

Since becoming my mother’s caregiver 3+ years ago we’ve clashed over many things; cooking (she shouldn’t) exercise (she should) and various and sundry other issues but none seem to bubble over the side of the tub of reason and burst into an argument the way the topic of bathing and washing her hair do (does).

I’m not sure if it’s the reversal of roles, the child now parenting the parent or embarrassment; although after wiping your parents’ rear after helping them in the bathroom you’d think that ship had long since sailed.

Believe me, it’s not that I want to be the “bath bully” anymore than I want to be on “poo patrol” but Alzheimer’s isn’t just about reminding your loved one where they put their favorite blouse.

It can start off that way, all clean and innocent; a misplaced book here, a forgotten appointment there, and if that’s where you are in the disease with your loved one…enjoy!

In time you will look back on all the frustration and change you faced during the first stage of the diagnosis and realize that those were the “Halcyon days”.

As for my current dilemma I am at a quandary as to what I should do; ‘rinse’ (leave her alone) or ‘repeat’ (continue to motivate her to be better).

Sure, it would be ‘easy’ to let Miss Cathy have her way and just open a window while she sat around in her own funk, and look away as she scratched at Lord knows what could be marinating in her unwashed coif but who said any of this was going to be easy? And if they did-nobody said it to me.

Besides, what kind of caregiver would I be, let alone son to a mother he purports to care about if I didn’t do those things that were uncomfortable (for me) and maddening (for her) but ultimately in the best interest of my loved one.

So, I refuse to let her standards of hygiene slip (ones she instilled in me, by the way) even if she’s forgotten them.

If I can’t get her to “wash yo ass” as she so often (and not so delicately) barked at my brother and me to do when we were growing up then at least I could try to get her to wash her hair more often (‘often’ being a relative term and our current bone of contention).

Hair today-the rest of the body tomorrow……

“Sometimes you can’t see the forest for the fire”

Posted in November by

We’ve arrived at the place where simple things are becoming difficult. We no longer live on easy street where weeks go by without a visit from signs of dementia.

Where it was once a ‘some-time’ thing, now Alzheimer’s has come to take up part-time residence.

Who’s to say how many years Miss Cathy has before she lives in a permanent state of confusion.

Three years ago, long before mom’s recent decline but sometime soon after she was first diagnosed I advised her to prepare for this day (or something much like it).

I suggested that she write down lists of contacts; names and addresses of all the people (friends and family) that she talked to on a regular basis as well as her favorite TV shows; the times and channels so that she would have them for easy reference later on when her memory failed and she’d forgotten all things familiar.

I also suggested (while she was still ‘sharp’ and more or less ‘herself’) that she make a point of flexing her mind ‘muscle’ and practice crosswords or put a jigsaw puzzle together, anything that would help her mind stay active instead of just sitting in front of the television hour upon hour, day in and day out then laying in bed for the rest of the evening, letting her intellect go soft.

She had other ideas of course, as is the case with most people who are in denial and not ready to accept what lies ahead, she let my ‘suggestions’ go in one ear and out the other.

My fear was that Miss Cathy’s mind was getting soft but her head was hard and she did what she’d always done, which was exactly what she wanted, regardless of anything I or her doctors’ advised.

So, she did very little to prepare for today and today (as has been true every other day for the last several months) she cannot read a page on a book, dial a number on the telephone (usually connecting with the wrong person at the wrong number) and gets confused by the everyday routines and objects that should be as familiar to her as the nose on her face.

Today she retains less and less new information and the old knowledge she once possessed is harder to grasp.

And since she never bothered to write down the things I asked for I’ve had to become somewhat of a Sherlock Holmes to decipher “who” she intends to call, “what” she’s searching for and “where” her favorite programs are on TV.
(I’ve since started compiling some lists of my own (of Miss Cathy’s social life) to go along with my medical notes).

When these new challenges first presented themselves I tried to get her to use sense memory instead of sight or other ‘tricks’ to help her navigate through her day or operate familiar things but she was quick to anger.

“I done told you I can’t see, I don’t know when you people are going to understand that I can’t see anything!”

“You people?”

So now I’m part of the preverbal you people and she can’t see that I’m the one person by side supporting her on a daily basis.

No matter, she can’t see the irony that her protests are just validating what I was trying to get her to ‘see’ but I can.

Oh well, like Miss Cathy is want to say, “Sometimes you can’t see the forest for the fire.”

#JeNeRegretteRien (I regret nothing)

Posted in October by

My purpose in these posts is not to kvetch about being a caregiver.

Telling my story (by writing it down as best I can) is my way of remembering before I forget the beginning, middle and in-between of Alzheimer’s and it’s affects on one family.

Sure, I complain, I’m the first admit that.

I rail against the day in/day out difficulties and vent my frustrations but that doesn’t mean I ‘want out’ or that I’m not committed to caring for my loved one, Miss Cathy, the best way I know how.

And let’s face it, I’ve fumbled a few times but I’ve never dropped the ball (which in this case would be my mother when I had to carry her once) so I admit I’m a work in progress.

But, like Maya Angleou says, “When you know better, you do better.”

I might learn to do better, but I doubt I’ll stop bitching along the way.

I remember the day years ago soon after my mother was diagnosed and I decided (without being asked) to become her caregiver (something I hadn’t done since the early days of the AIDS epidemic when it ravaged my gay community and I found myself caring for someone I loved for the first (but not the last) time).

So I knew the commitment I was taking on (even though it was a different disease, a different relationship and a different time) but nonetheless my decision was as easy to make then as it was before.

We all know how easy it is to say that we love, and it’s not often in life that we are given the opportunity to show how we love and show up for a loved one, and in those moments we get to see ourselves for who we really are.

Love means being there for someone else when they need you, not when you want to be there for them or when it’s convenient for you or your life.

Love, to me, between a person and their parent, spouse, sibling or friend is defined by the depth of their willingness to give, to receive and sometimes (maybe, more importantly) their capacity to forgive.

So, if I’ve sounded as if I’m complaining (and lets face it, sometimes I am, actually) that’s okay as long as I show up each day for the commitment that I’ve made (not to Miss Cathy or anyone else so much as) to myself.

I’m just letting off steam, being vulnerable, and posting questions as I stumble through what is one of the hardest things l have ever done or will possibly ever do, finding answers and support from (sometimes) the unlikeliest of people and places.

When I made my decision to leave my life to join Miss Cathy’s it was so that she could live out as much of her life in the home that she loves before the disease progressed to the point where there was no more there, there.

It’s been three years and three months since I moved in with her and so far, so there.

I’m happy to report that she’s not there yet so life goes on for now, just me and Miss Cathy.

To me it’s very simple, “when you care-you come”, the rest is just words.

So, when it comes to love and my loved ones, in the words sung by the late, great “Little Sparrow” Edith Piaf f-9439893″>http://www.biography.com/people/edith-piaf-9439893, “I regret nothing”.

I’m late (we’re late) for a very important date: Pt. ll

Posted in October by

After checking Miss Cathy’s progress (she was so engrossed in her closet you’d think she was looking for a hat to meet the Queen of Hearts but all she usually wears is army fatigues and an oversized tee under a poly blend jacket topped with a red ball cap no matter where she’s going or who she’s to meet) I decided to “warm up the car” as we used to say in the old days when cars required such attention but nowadays it’s my euphemism for needing to get out of the house.

When it got to be ten minutes before we needed to be someplace that was less than five minutes away (but would require at least that much time for mom to get into and out of the car) I knew it was time to call the doctor’s office to let them know that we’d be late.

After an interminable period of “press one for this and nine for that” the receptionist finally came on the line and after pleasantries and me explaining the reason for the call she told me we’d have to reschedule because “the doctor is ‘on call’ today and would have to leave” if we weren’t there on time.

I told the young woman on the other end of the line (Why are receptionist usually young women? And why didn’t young men ever apply for these jobs? Is it suddenly the Madmen 60’s where clerical office work in doctor’s offices was concerned?)

Anyway, my reassurances that we’d only be ten minutes or less ‘late’ did nothing to assuage her position. She was a ‘verbal gatekeeper’ and I was being denied access, I would have liked to throw her down a rabbit hole.

“Well”, I said, “I’m calling as a courtesy really, which is more than I can say for the hour we had to wait the last time we were in to see the doctor and no one ever came out to tell us how long he’d be or apologize for his tardiness.”

“One, two, three…” I breathed, calculating how I could turn this conversation around, trying not to sound ‘too’ annoyed, lest I give away my fantasy of someone I’d never met free-falling down into endless darkness before hitting an unknown bottom which is where I felt this conversation was heading.

“Can I speak to the doctor?”

“The doctor is in with a patient now, can I take a message for him and he’ll get back to you later this afternoon?” she said. (Oh no she did-int’!)

How could he be both with a patient and getting ready to leave because we’re not there-at the same time?

I was used to putting up with Miss Cathy’s inconsistencies but I had no need to indulge this girl’s word play.

Rather than question the receptionist who was (after all) just doing her job (and apparently not being paid enough to keep track of her own contradictions).

I simply said, “Well then, be that as it may, we’re in the car and will be there in two minutes…see you soon” and hung up smiling a broad Cheshire cat grin, not having to worry about the power to disappear because unlike the cat and Alice (because of the power of technology and not magic) she could hear but could she see me.

I’m late, (we’re late) for a very important date: Pt. l

Posted in October by

I can’t believe we were late for our first doctor’s appointment in over a month.

When we finally arrived at the Medical Center I looked at my watch to see that we were 20 minutes late for Miss Cathy’s appointment with Dr K, her (new) neurologist.

It’s not like we were rushing from another appointment because of some ‘full calendar’ of places to go and people to see, we only had the one place and he was the only ‘people’ she (we) had to see in an otherwise day free of obligations.

So, there really was no excuse for our tardiness and all the drama it caused (to me, anyway).

We were going to see him to discuss the addition of Namenda XR to her drug cocktail, up till this point she’d only been prescribed Aricept for her Alzheimer’s.

I first told mom about her three month neurological ‘check-up’ the night before so she’d have (some) time to get used to the idea but not so much that she’d obsess or drive me crazy asking, “When do I see the doctor?” over and over.

The next day I reminded her again about the appointment while she was eating her breakfast in front of the television in the living room then went about my morning.

I didn’t come back out to check on her till 12:30pm (the appointment was scheduled for 1:00pm) and there she was, sitting in the living room watching TV, still in her nightgown.

“My bad”, I thought to myself, “ no reason to be mad at her for something that was totally my fault.” As her caregiver I should have checked on her earlier to make sure she was dressed and ready so we’d be on time.

Luckily her condo is only about a five-minute drive to the doctor’s office but with less than a half hour for her to dress and get out the door (and in the car, out of the car, in an elevator and walk the short distance to the doctor’s door…all of which take more time than you can imagine) I knew there was a better chance of John Boehner controlling his Republican caucus than us being on time.

Frustrated (but, I had to admit that I was more angry at myself than her) I ‘suggested’ she go and get ready so we could leave as soon as possible. I’m usually more on top of things, time management wise, but, what can I say, sometimes I think that she’s having a good day and monitor her less or (heaven forbid) get absorbed in something I’m doing for myself.

You might be asking yourself “Why didn’t he just help her get ready?”….Well, I’ll tell you.

The answer is that I’m (still) making a conscious decision to let her be as independent as possible and not step in and take over (until it’s absolutely necessary) where matters of her autonomy are concerned.

Part of what I struggle with as her caregiver (in addition to time management obviously) is the knowledge that if/when I start to do more for her (even if it’s under the guise of ‘helping’) it will send a message to her that she can just sit back and be taken take of.

So if I do ‘whatever’ it is that needs to be done for her then she’s absolved of any responsibility or culpability for her actions.

She may have Alzheimer’s but there is plenty she is still capable of doing for herself-dressing being one of those things.

So, we’d be late but I wouldn’t have to add the label ‘enabler’ to one of the many (mad) hats I wear as we prepared for this very important date.

The Group: Pt. Xll

Posted in October by

The meeting wound down and I was surprised that an hour and a half had passed so quickly.

As I packed up my things; notebook, pen, some brochures that were passed round the table containing information on Alzheimer’s, and other pamphlets written specifically for caregivers, I looked around the room and at the people in it and knew that I’d be back.

I was glad that I came and had to admit to myself that I was an ass for pre-judging these women, the process and for thinking I was wasting my time-I couldn’t have been more wrong.

The truth is that I wish I’d come sooner but no point in getting lost in “woulda, coulda, shoulda”, I came to the meeting when I did so that was when I was suppose to begin this part of my journey.

I was leaving with the knowledge that to be a caregiver, in the presence of other caregivers and be able to share information and stories is a rare and wonderful opportunity.

It was a great feeling to be ‘heard’ by those that know of what you speak, and to be part of a group that can validate one another’s experiences is truly unique (there’s nothing like be in the trenches with someone who’s fighting the same war).

And by living a common experience and coming together to share what we live and know, I saw first hand (or first ‘eyes’ to mix a metaphor but properly term it) that the comfort we provide one other (sometimes just by a wink, a nod, or a hearty embrace) can give us the fuel to sustain and maintain (self and sanity) as we go back to our lives as caregivers.

What I also realized as I looked around the room at the people in it is that we are more alike than we are different; bound by a common experience that transcends gender, age, race or class.

So, even thought there are people out there in the world (that I already know, and know they love and support me), the support group has become important to me, and it gives me solace to know that I am not alone, that there are other caregivers just like me (who just happen to look nothing like me).

Update: I’ve been back to the group more or less faithfully, twice a month for the past several months since that first meeting back in May 2013.