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.

Hair today (not) washed tomorrow: Pt. lll

Arguing with Miss Cathy about washing her hair was about as useful as ‘tits on a bull’.

After weeks and days, and years and months of trying to convince her to do something different about caring for her ‘do’ I’d exhausted all reason and patience; if I weren’t already bald I’d have pulled my hair out.

My frustration was only topped by my disappointment in myself for arguing with her about the subject in the first place.

I (thought) I’d learned from my caregivers support group that you should never argue with someone with dementia, you’d never win so what’s the point.

Oh well, those fights are all ‘hair down the drain’ so there’s no sense dwelling on the past.

I realized that what I needed to do was 'something different’.

After all, Einstein said, "the definition of insanity is doing the same thing over and over and expecting a different result” and all my haranguing Miss Cathy about washing her hair definitely qualified as ‘insane’…100% justified, but still….

I knew I had to try a different tack and it came to me when I realized that she hadn’t been to the hair salon in quite some time.

In the past I let her make all the arrangements to ‘get her do did’ but we see how well that’s not working so it was time for me to add ‘grooming secretary’ to the ever-expanding list of things I do for her because she can no longer do for herself.

I called the salon to make an appointment and it was then that I realized the solution to my problem.

When the appointed day arrived I drove Miss Cathy (as usual) but instead of just opening the car door and leaving her to her own devises I went inside with her; 1) to handle the business transaction because she’s now at a point where money confuses her so I don’t want her to be taken advantage of and b) to speak with her stylist for a moment.

When the hairdresser came to the reception stand I introduced myself and before handing off Miss Cathy to her care I asked how often ‘one’ should wash their hair after having a chemical curl?

Her reply was “whenever you want but at least every two weeks” (which surprised me that one could go that long without shampooing but that’s besides the point).

The point was that I knew Miss Cathy has great respect for ‘professionals’ and now she’s heard from a hair-care professional about what was acceptable hair care (and not from me-her son, a ‘lay-person’).

And the stylist just so happened to be African-American (so mom can keep the race card in her deck and save it for some other argument).

I thanked the hairdresser for the information, and didn’t say a word to Miss Cathy except to tell her what time I’d be back to pick her up.

Two weeks to the morning after she’d been to the salon I announced that it was ‘wash day’, she acknowledged that she heard me but with about as much enthusiasm as if I’d said it was ‘enema day’.

When it got to be afternoon and time was fast approaching for her to beach herself in bed I had a ‘light bulb’ moment and instead of reminding her of what she ‘didn’t want to do’ I offered to wash her hair for her…and she accepted!

So, now I have shampoo days on the calendar along with all her other appointments and reminders.

Now, if I could only get the rest of her body immersed in water more often than her hair…oh well, there in lies the rub, “a dub-dub”.

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

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

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"

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.”