Tag Archives: mom has alzheimer’s

Top three things NOT to say to someone visiting their loved one in a nursing home

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There have been numerous occasions when I have returned to my car in a furious state after a visit to see Mom (Little Red Riding Hood) at her senior living facility when a staff member said the wrong thing.

I don’t think anyone ever intentionally means to say the wrong thing. Honestly, I don’t think most staff members in these facilities realize the impact that their comments can have when every emotion we have is running at full tilt.

These unintentional slips happened much more often before I started volunteering at Mom’s place every Thursday afternoon to facilitate a Memories in the Making watercolor art class. Volunteering regularly has helped me get to know the caregivers and to be much more zen during my visits. However these slips still happen once in a while, and they still make me want to scream.

Top three worst things to say to someone visiting their loved one in a nursing home:

#1: Are you leaving already?

Really? I almost gave a receptionist a black eye one time for this one as I was signing out.  Do you realize where you work?  And that sometimes it takes everything in us visitors just to show up and see our loved one in a facility where everyone has dementia and they won’t be getting better?

No matter how nice the place is, there will always be that weird sterile smell and that cloud of heavy, stale air that hits us right in the heart as we pass through the doorway. You’re probably used to it because you work there, but I have to take a really deep breath and swallow hard each time I punch in the security code that leads me to the other side. Then as I walk the halls to look for Mom, all those blank stares, sideways smiles and random mutterings punch me right in the gut, one after another. And no matter how many times I experience it, the bottom of my stomach falls out each time I realize that Little Red Riding Hood has no idea who I am as I reach for her hand.

So yeah, my visit might be short every now and then, but I’m there. And if you know what’s best for you, smile nicely and tell me to have a great day.  It will be much safer for you.

#2:  I haven’t seen you for a long time.

You’ve got to be kidding me.  I find it hard to believe that your training manual doesn’t somewhere remind you that those with loved ones in a such a facility are already lugging around an extra fifty pounds of guilt, and that it would be best that if you don’t have anything nice to say, that you don’t say anything at all.  Little Red Riding Hood herself taught me that one many years ago, and it certainly applies here.

We’re all feeling guilty that we don’t come visit more often, so why remind us? Plus, it’s probably better for your business model to make family members feel good when they visit rather than bad, no?

#3  Wow, your Mother seems young to have Alzheimer’s.

This one also applies to anyone talking to someone who has a loved one with Alzheimer’s. This is not what we want to hear — ever.  No matter how genuinely supportive your intent, keep this comment to yourself.  When you have Alzheimer’s on the brain as much as most of us related to it do, we don’t want to think about the age of onset versus genetics piece of this frightening Alzheimer’s puzzle.

Trust me, this thought plays over and over in our head already and scares the heck out of us. It’s what bonds us Alzheimer’s kids while we’re there to visit as we exchange sad little half smiles with each other as part of our code.  We work hard to erase the thought — especially while we’re trying like hell to remember all those numeric security codes you make us remember to get through each door.  So we don’t need you to remind us.

Don’t get me wrong, the place where Little Red Riding Hood lives is wonderful and I feel very fortunate that she is safe and well cared for.  I have made many friends with the people who work at Mom’s place, many whose smiles warm my heart when they remember my name and  tell me stories about my sweet Mom.  Volunteering there each week has given me a new respect for people with enough compassion to serve this population with all their hearts.

This further supports my theory that these slips are most likely truly unintentional.

At any rate, it never hurts to be reminded of what not to say.

“Sorry honey, I think you have the wrong mother.”

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Little Red Riding Hood’s coat now hangs in her closet.

Before my long weekend get-away, I visited Little Red Riding Hood (aka Mom) in her dementia facility home last week.

My usual feelings of dread – and the pit in my stomach – had been building up as I anticipated my visit. I knew that once I saw her, the pit in my stomach would begin to dissipate into the smaller, more manageable pit that’s taken up permanent residence. Sweet Clone (my youngest son) offered to accompany me.  Having someone with me every now and then takes a little of the sting out of my visits.

We arrived and I punched in the code at the front door, where a much different reality exists beyond the threshold.  This is where I take a deep breath and swallow my trepidation for how the visit may unfold.

These days Little Red Riding Hood doesn’t recognize me. For the last two years she seemed to at least realize that I was someone she knew and someone who was nice to her.  Now it takes more effort to briefly catch her gaze once I track her down.  She’s usually rearranging silverware or dusting a table with a tissue.  Her head hangs low but she walks with surprising agility.

This time as we walked into her area of the facility, her roommate Amy (who scares me a little because she always looks angry even though I don’t think she is), was holding Mom’s arm and leading her toward me.  I just knew she was going to tell me that something was wrong.  (Mom has been irritating some of the other residents lately walking into their rooms and taking her shoes off to stand and gaze at them. I can understand their frustration  even if it isn’t that uncommon around there.)

Instead and to my surprise, after I said hi to Mom and tried to get her attention, Amy held Mom’s arm as if protecting her and told me that I must have the wrong mother.  That Mom couldn’t be my mother because she was actually her daughter.  She inquired about my last name as if to double check but then kept walking with Mom.

Christian, the sweet caregiver, told Mom’s roomate that I was indeed Mom’s daughter and wanted to visit.  She argued again, told me “Sorry, honey, you’ve got the wrong mother. It just can’t be.”  She explained that Mom was her daughter, and that she had not been herself this week, and therefore she needed to be taken care of.  And it was her job to do it.

I looked to Christian and nodded with a smile to let him know it was okay.  I softly touched Amy on the shoulder and thanked her for being so sweet and caring.  Her wide, smoky blue eyes met with mine  and her facial expression lightened, as if she suddenly realized I wasn’t going to take Mom away from her.

After chatting with Christian about how Mom was doing, checking her room and leaving her favorite Russell Stover’s Assorted Creams on her little bedside table, it was time to say goodbye.candy

I caught up with them again and Amy was still holding Mom’s arm lovingly as they strolled around the facility.  I stopped them to give Mom the longest and most loving embrace possible and I told her that I loved her.  I almost, for a second, felt the old her hugging me back.  Or maybe I was trying to wish it to happen.

I leaned down to capture her attention and tell her again how much I loved her.  I got a brief smile but she kept on walking.

Amy looked at me and smiled like she felt badly for me, and told me not to worry, that Mom “just hadn’t been herself lately.”

As we left, I smiled and was grateful that someone new was also watching out for my Little Red Riding Hood.

Twilight zone turned school zone.

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As I say often, “You learn something new everyday…” (And as many who know me hear me say even more often, “Every day’s a damn school day.”)

I now better understand the impact that certain infections can have on the elderly and on those with dementia.  They can actually cause delirium.

And I now know that 30% to 40% of elderly patients with serious infection don’t exhibit the usual signs of fever due the inability of the immune system to mount a response to infection due to the effects of aging (or in Little Red Riding Hood’s case – Alzheimer’s).  (I felt like Velma in a Scooby Doo mystery trying to figure out what was causing her further and furious decline.)  If you already have Alzheimer’s, infections can put you into a mental tailspin.  This was our week.

Fortunately, after copious amounts of heavy duty antibiotics and eye rolling, Mom was actually able to come back home this afternoon.  She smiled at me more today and said many more words to me today than she has in the last few weeks.  I even got some bona-fide Mom to daughter smiles which tickled me with delight.

We still will assess where we are with her doctor, but it appears that we have bought a little time for her, avoided the cuckoo’s nest/twilight zone for a bit longer and become better educated in the process.

I also had the privilege of doing a Yoga class today (hallelujah) geared toward technique and theory, which was fabulous.  I also got to wear my awesome new yoga pants. And I got to take a lot of deep breaths, which were welcomed.yoga pants

Oh, and MacGyver discovered a new Chardonnay for me named Irony which seems quite fitting. And it is quite good.  MacGyver makes a damn fine Sommelier.  Which makes me a damn lucky sidekick.

Overall it was a day of education and progress which is ALWAYS a good thing.

Thanks so much for your support on this journey!

What’s the most ironic wine you’ve ever enjoyed?