Tag Archives: tips for caring for a loved one with Alzheimers

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. lll

Posted in November by

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. 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.”

Requiem for a small kitchen appliance

Posted in October by

Recently, I was in my room trying to write, waiting for the muse to move me when I was shaken out of my musings by a racket coming from the direction of the kitchen so I went to investigate.

It sounded like a car stuck in second gear as it ran back and forth over a body.

I walked in to see (and hear) Miss Cathy murdering (yet) another electric can opener.

I don’t know how she does it (actually I do; she presses down too hard on the handle, either in frustration or impatience, forcing the mechanism to grind to a halt) that is/was the fifth car opener to fail in three years.

Unplugging the machine; finally silencing the grinding and groaning, releasing the can of Bushes’ Baked Beans, hanging limp from the magnetic holder.

Freed from its gallows I could see that the top had been wrung a few times but never rotated enough so that the blade could do it’s job.

It was a sad sight, matched only by my mother’s perplexed face as she tried to comprehend ‘how’ it could possibly be her fault and not the machines when I told her she’d broken another can opener.

I wasn’t mad at her (for a change) so much as I was disappointed in myself because I broke my vow and hadn’t bought a second hand can opener online or one from a second hand shop as I’d done before (after wasting money on new ones the times before).

No, I was mad because I’d gone out and bought a brand new, top of the line stainless steel can opener from Macy’s at the unheard of price of $95.00 (I think it was on sale for $69.99 but, still).

The last used can opener broke after Miss Cathy manhandled it (and before you ‘ask’….it was perfectly fine and ‘gently-used’ when I’d bought it so “not” being new wasn’t the reason it broke).

Miss Cathy promised she wouldn’t use the new Cuisinart and she’d ask for my help whenever she needed a can opened and (putz that I am) I believed her.

So, I was mad at myself for:
1) Believing her and thinking she could change her behavior
b) For wasting my time (and money)

The reality is that she’s not doing anything wrong. If anything her behavior; forgetting (or breaking) her promises, mood swings and impulsiveness (to name a few) are pretty damn consistent with her diagnosis.

I realized all this as I was opening the can the old-fashioned way with a ‘hand’ opener; luckily I’d kept one ‘on hand’ for occasions such as this.

I told Miss Cathy that after five, count’m… five broken can openers in three years that at some point she has to take some personal responsibility in the matter-they can’t have all been ‘faulty’ can openers.

As I unplugged the Cuisinart I tried not to scold her or make her feel worse than she already did but I wasn’t going to molly-coddle her or let her get away with blaming the (victim) ‘appliance’ either.

The murdered appliance deserved better than that, so, farewell small kitchen appliance, thanks for trying to be of service as go off to some landfill, rest in peace can opener as you as you lie in a heap.

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.

The Group: Pt. Xl

Posted in October by

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

Posted in October by

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.”