Tag Archives: mental-health

The other #”F” word: Part ll

Posted in April by

It’s common knowledge that “forgetfulness” is part and parcel of an Alzheimer’s diagnosis.

I’m finding that the collateral damage; anxiety, fear and depression (to name a few) that accompanies the “when”, “what” and “how much” Miss Cathy forgets to be very debilitating as the disease progresses.

The “When” took me quite by surprise because we hadn’t had an incident (or much of one) for quite a while then (seemingly) overnight things were different.

I was in a place where I started to second-guess (again) her diagnosis and wonder “why am I here?” because she seemed to be doing so well…..and for such a long period of time.

The “What” that was confusing her wasn’t just that she suddenly couldn’t remember things; she told me that she was having trouble ‘seeing’ as well.

To hear her explain it, the letters and numbers on the remote, telephone and alarm system weren’t just indecipherable; they seemed to be “moving” too.

Logic and reason did little to help her ‘see’ past what appeared to be true to her eyes.

I tried to reassure her that I was not being dismissive of what she saw. What troubled me was that she so readily accepted her new reality.

I was trying to get her to realize that regardless of what she was ‘seeing’ she should have been able to deduce that buttons do not ‘move’ and numbers do not ‘float’.

“Nope”, she said, “I understand what you’re saying, it just seems to me that my brain just doesn’t work that way.”

So, she would stare at imaginary moving numbers and push at buttons that weren’t where they were supposes to be.

“How much” she forgets and the price she pays for the loss varies from day to day; laboring over changing channels on the television or contacting someone on the phone (and being unsuccessful more often than not) she is absolutely spent, angry and/or highly agitated.

After one or more of these episodes I’ve watched as she toddles off to her bedroom to lie down, as quiet as a child in a ‘time out’, life punishing her for something she doesn’t understand that she didn’t do and is not her fault.

Do I look fat in this life?

Posted in August by

There are a lot of things that go into being a caregiver; some you know (and are prepared for) and there are other things you learn as you go.

I’ve found a lot of support these past two years from Alz.org, chat rooms and support group meetings but one thing that surprised me about this experience that seems to be overlooked and never really talked about (at least not to me) is the tendency for the caregiver to get FAT.

I look around at a lot of the caregivers that I’ve met and I see a lot of lard asses-mine especially. As Whoopi Goldberg quipped, “Once I thought someone was sneaking up behind me and when I turned to look I realized it was my own ass.”

I bring this up not to say that this happens all the time to everyone in my situation. No, there are a lot of caregivers who have been able to balance the enormity of their new roles without becoming enormous themselves.

But it did get me to thinking about the connection between the stress we’re under and obesity.

We all know that obesity is rampant in our society; poor diets and lack of exercise being two (obvious) reasons but stress has been linked as a contributing factor as well. For me, and I’m only talking about my own tonnage here, I found that there was so much to do in the beginning and so much change occurring that once I had my routines set up for my loved one and I had a chance to catch my breathe and focus on myself what I saw surprised me.

How did this happen and when did I let myself go?

I began to wonder, like the “freshman fifteen” that some young people gain during there first year of college; due to the change in environment, the stress and the anxiety of being on their own for the first time, is there a similar correlation for caregivers as we transition into a new environment, as well as the stress and anxiety of “Not” being on our own for the first time as well?

If freshman can be forgiven for their “fifteen”, is it possible for me to get a little understanding for my “Alzheimer’s eight” or the “Dementia dozen”?

Believe me, I take full responsibility for my rotund-ti-ty, as my role as caregiver has expanded so has my waistline. And while I never had Paul Ryan’s abs (and thankfully I never had his views on restricting women’s reproductive rights either) I would like to see my feet again some day.

It’s nobody’s fault but my own and intellectually I know what needs to be done to return to my former svelte self-eat less and exercise. But, that’s easier said than done when you’ve stressed, often lonely and lack the motivation to give yourself the time and energy you’ve poured into your charge.

It’s not that I’ve been “so” selfless, I’ve just been too tired to care and being out of my own environment and routines I’ve found that I’ve developed some really bad habits-namely eating too much of the wrong food and not moving my body any more than is necessary.

The reality is that at the end of a day running around looking after someone else the last thing I want to do is run for myself.

I used to go to the gym, walk (I’m a former four mile a day runner but I blew my knees out years ago and switched to walking long distances instead) and maintained a rigorous stretching and exercise routine.

I ate a healthy, varied diet of vegetables, fruits, chicken, fish, some red meat and low fat or sugar free desserts. It was satisfying, I didn’t feel deprived and it gave me the energy I needed to fuel my life.

Unfortunately, it seem that these days I’ve pretty much abandoned anything that’s healthy for whatever is quick and easy (which mean it’s usually something frozen, processed and full of sugar and/or sodium). And I greedily grab for any and everything that can give me a moment’s comfort or (faux) sense of relief from my daily life’s stresses (read: junk food and sweets).

This is a classic case of emotional eating and sublimation.

Think of it this way, while the anorexic or bulimic denies themselves food or regurgitate as a way to control one aspect of a life off-kilter, (maybe) my eating and sloth like existence is my way of “not” having to be in control when I have to be responsible for someone else all the time-for the first time.

Hmmmm, maybe I’m onto something here….but, like the person who tries to commit suicide-you’re trying to kill the wrong person….so, maybe I’m force-feeding the wrong person, too (metaphorically).

No, I’m not saying I should be strapping Miss Cathy to her bed and feeding her color coordinated food nonstop till she fattens up like a piece of veal (not to say that she’s not doing a pretty good of that all on here own)…but I digress.

No, what I think my “light bulb” moment is telling me is that what I’ve been doing by engaging in behavior that I know is bad (and bad for me) is that I’m punishing myself instead of expressing the anger I feel toward my charge and the difficult situation I find myself in but was unprepared for emotionally (unknowingly).

So, I turn to food (that tasty panacea) and inertia; depression, denial and frustration all seem to more palatable when you’re prostrate with a plate.

Great, now that I’ve acknowledged the obvious I hope it’ll help when the cookies are calling me at midnight when I decide to stay up and watch “Shoah”.

While I seriously doubt that anything will change overnight with this revelation I do know that the first step to solving a problem is acknowledging it. I didn’t exactly work up a sweat thinking this through but I do think it was an exercise worth pursuing.

Who knows, now that the mind has been stimulated maybe I’ll surprise myself next by moving my body…….even if it’s just to push back from the table.

For whom the pain tolls

Posted in June by

It amazes me what we (I) let our (my) LWA (loved one with Alzheimer’s) get away with in the name of the disease. Not only are we chauffer, cleaner and go-fer; we’re also expected to morph into the occasional doormat-ter.

I (thought) I learned how to let comments roll off my back like water off the proverbially duck as advised by all the doctors and everything I’ve read but after the tongue-lashing Miss Cathy unleashed with such fury a few months ago I was left feeling emotionally eviscerated.

The details of which I’m hoping my best to forget and have repeated enough so suffice to say my entire purpose for being came into question. Unfortunately, it’s something that I don’t think I’ll ever forget (and I’m someone who never says never-even though I just said “ever”).

After it happened I was confused and shell-shocked. We’ve had arguments and disagreements in the past but her reaction to the situation was so much bigger than the size of the incident and it was just too much.

I don’t know (which adds to the confusion) if it’s the Alzheimer’s, old age, fear or a combination of it all but emotional boundaries were crossed and her filter (which at best was barely there) was completely gone so she said things I never imagined I’d hear, the venom viscous with hate.

The only thing I could think to do was to get in my car and drive. I stopped at a park nearby and sat there trying to take in what had just happened. I got on my phone and first turned to my brother, who listened and was some comfort but could offer little else.

It was my friends, Brian and William that really came through for me. They gave me the words that turned into actions that helped me go back (which in and of itself was pretty powerful because every fiber in my being was screaming for me to just drive; where I didn’t know-anywhere but back there).

But, what they said (each in own way) has kept me and keeps me here/there to this day.
Brian reminded me that I’m not alone and that I’m not “stuck”, I can always get professional help for her and leave. William told me, “much will be said” (and he should know-he has challenges of his own caring for both his parents. He shared some of the things that have been said to him and he’s still there, everyday caring for them both.) He also told me to just get a thicker skin, “apologize to her” (even if I didn’t mean it or understand why it was important) and to just……“go on”.

So, I took their advice and went back.

Oh, don’t worry; Miss Cathy is fine (she hasn’t been stuffed and propped up in a rocker somewhere waiting to be discovered in the last reel like Norman Bates’ mother) in fact, she’s better than ever actually. She unleashed, I “apologized” and now she seems all the better for having gotten (whatever) off her chest.

I haven’t shirked my obligations either. I go through the motions day to day but something has shifted in me and when my day is done (more often than not) I find that I question my role as caregiver and my continued commitment to stay here. I have tried my best to show up for my duties (both as son and caregiver) but my heart (what’s left of it) isn’t into it anymore.

It’s humbling but I’m almost ready to concede that the Alz wins.

I confess I thought I was made of stronger stuff; having survived heartbreak, the death of friends to AIDs, domestic abuse, bankruptcy, alcoholism and career suicide…to name a few) but I guess I’ve met my match.

I was thinking I might have some more fight left in me (or at least a few more ounces of blood to give) but that changed the other day when it happened again. While it wasn’t the bloodletting that occurred before, once again Miss Cathy vented her anger. But this time I wasn’t taken totally of guard, the surface was sliced, old wounds were re-opened and there was a little pain, an emotional paper-cut if you will.

Unfortunately, the people closest to us can hurt us the most because while they love us for our strengths they also know our weaknesses and have to power to turn that against us. Alzheimer’s has a way of releasing the person suffering with the disease from the responsibility of keeping that trust.

Sometimes, you can see that the LWA knows they’ve over-stepped and are remorseful and other times they seem to know not the destruction they’ve wrecked and the emotional damage done. They seem just as pained and confused as the person they’ve hurt.

And while it’s forgivable (hopefully) to the one who’s boundaries have been broken, it’s like the bell that once rung cannot be un-wrung and they are left to decide for whom the pain tolls.