Alzheimer’s: Last Minute Tips for Thanksgiving

22 Sunday Nov 2015

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Expectations, Family, Helpful Resources, Holidays, Tips

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alzheimers, alzheimers and the holidays, alzheimers caregiving, alzheimers tips, dementia, thanksgiving with alzheimers

With Thanksgiving just a few days away, I wanted to leave you with my thoughts on making the holiday the best it can be for your loved one living with Alzheimer’s or another form of dementia – and for YOU.

Only you know what’s best for your unique situation, so first and foremost listen to your heart. Remember that while things will never be what they once were, it is still possible to find blessings and create moments of joy. If your loved one is still in a place where a gathering is feasible, here are some tips to help.

Set realistic expectations right from the get-go. When planning, consider where your loved one is in the progression of the disease and prepare accordingly.

Let go of the need for everything to be perfect. You are not Martha Stewart and no one expects you to be. If you need help, ask.

If you are hosting, set aside some quiet one-on-one time to spend with your loved one before guests arrive. During this time, shut out all distractions and focus on your time together.

During a larger gathering, keep noise to a minimum. Speak clearly in a calm, soothing tone.

If your loved one is still able to help with simple tasks, by all means, let them! This gives them a sense of purpose and pride.

Minimize distractions, and remember that if you are tense, your loved one will pick up on that feeling.

Create a quiet, comfortable area where one or two people at a time can visit.

Watch for signs of overstimulation in your loved one and recognize it may be time for a quiet break. Soft music may help with relaxation.

Keep some old photographs handy as a conversation starter and for reminiscing. Avoid questions like, “Do you remember?” Instead, talk about the photographs and follow their lead.

Realize that sometimes just sitting and holding their hand or rubbing their back makes for the perfect visit.

Don’t argue or correct. Remember the best visits involve you entering their world, rather then expecting them to come to yours. This is a key to every positive interaction!

Know that the emotions stirred by your visit will last long after the memory of your time together has faded. Let them feel your love.

If you are having visitors who don’t see your loved one on a regular basis, prepare them ahead of time so they know what to expect. You might even consider sharing this list with them in advance of the gathering.

Last but not least, if you have a chance, listen to this recorded call. You’ll hear Susy Favaro, LCSW, from the Banner Alzheimer’s Institute, and myself along with other caregivers and several individuals living with Alzheimer’s. The call is from 2013, but the content is timeless.

I’d love to hear your tips, suggestions, and lessons learned, so feel free to leave a comment below!

Wishing you and yours a blessed holiday….

Getting Through the Holidays with Alzheimer’s

19 Thursday Nov 2015

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Caregivers.com, Eason House, Holidays, Life After Caregiving, Mom, Ruminations

≈ 6 Comments

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alzheimers, alzheimers and the holidays, alzheimers caregivers, alzheimers grief, dementia

As the holidays approach, stress levels tend to rise and expectations (often unrealistic to begin with) run amok. It can be a recipe for the ultimate disaster if we aren’t careful. Chances are, if you’ve been a caregiver for a while and your loved one is in the advanced stages of the disease, you know all too well what I’m talking about.

But for those who may be less seasoned, I thought it would be a good time to share a bit about how our holidays changed as my mom’s condition deteriorated – and how we coped (and are still coping today).

Check out Holiday Hoopla: Don’t Let It Get You Down. My hope is that this short piece may help you create reasonable expectations and limit your own heartbreaking disappointments.

Holiday Hoopla was written in 2012. Mom had taken a turn for the worse in the late summer/early fall and I believed we had reached the end of the road. I canceled a pre-paid trip to Mexico at the last possible minute in September, but to everyone’s surprise, she began to bounce back a bit.

By the time Thanksgiving rolled around, Jess and I were emotionally and physically worn out. If there was any chance of making it happen, we really needed a couple of days away. Mom seemed to be doing well, stable at least. She wasn’t having the horrible days and nights that we’d experienced in September and October, so her caregivers encouraged us to take our Chicago trip.

Happier holiday times, circa 1990. Mom, age 54

They reassured us she would be just fine, and after much deliberation and a healthy dose of guilt we packed our weekend bags and drove to the Windy City. I knew Mom would be well cared for, and we would be better for having had a few days away. If anything happened, they would call and we could head back immediately.

Although we were on edge Thursday and Friday, receiving no phone calls led us to believe things had at least remained status quo. What a relief! Or so we thought.

We drove back Saturday and arrived to find the wheels had essentially fallen off the bus in those 72 hours. It was a steep decline and one from which Mom wouldn’t rebound… On December 15, 2012, she earned her angel wings.

We still go to Chicago for Thanksgiving – it has become our new tradition. The trip gives us something to look forward to instead of spending three weeks dreading the impending holiday. It’s not the same as the wonderful Thanksgivings we had as a family; however, those times are distant memories. November and December will never be what they once were. But, life must go on…and it does.

However you decide to spend the holidays, I wish you joy and peace – most of all peace. Remember that only you know what’s best for your family and your unique circumstances. Be well, my friends. Happy Thanksgiving to you and yours.

Big Pharma: Principles vs. Profit

21 Wednesday Oct 2015

Posted by Ann Napoletan in Advocacy and Awareness, Behaviors, Caregivers, Helpful Resources, Mom, Pharma, Ruminations, Treatments and Therapies

≈ 4 Comments

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alzheimers, dementia, dementia big pharma, off label anti-psychotics and dementia, pharma, psychotropic drugs and dementia, risperdal

“Med changes are always a coin toss. Sometimes they really upset the apple cart. In fact, the [house] doc had increased one dosage from 0.5 mg to 1.0 mg a couple of weeks ago and it wreaked absolute havoc on her. She did nothing but sit and stare into space during waking hours, wasn’t eating, had no reaction when Jess or I walked in, and was completely non-verbal…”

The above snippet is from a post I wrote in 2011, and the drug mentioned was risperdal.

I’ll forever wonder how much more harm than good was done by the various and assorted medications Mom was given over the course of her battle with Alzheimer’s. Once it was clear that Aricept was no longer doing a damn thing, prescribing medications to control worsening symptoms was nothing more than a crap shoot.

Warning: Steep Drop Ahead

Psychotropic drugs are a slippery slope. Anti-psychotics, anti-depressants, anti-anxiety, mood stabilizers. Can you imagine what the various and assorted combinations, not to mention constant changes, are doing to our loved ones?

Depakote, Risperdal, Ativan, Lexapro, Buspar, Celexa, Zyprexa, trazodone, and the most dreaded Haldol. Just a sampling of the psych drugs mom was on at one time or another.

It’s the classic chicken and egg; the symptoms and behaviors worsen and a drug is prescribed. It works for awhile, then seems to lose its effect so they try something else. The cycle continues. At what point do the drugs become a major part of the problem instead of part of the solution?

All in the Name of Profit

One of the most disturbing notions is the increasingly “acceptable” off-label use of these drugs.

Susan Macaulay recently wrote several articles on this very topic. The information shared is absolutely appalling, and underscores the reason our drug companies are often looked upon with such mistrust and even disgust. Sadly, as illustrated by the 2008 UK report Susan references, this is also nothing new.

At a minimum, we owe it to ourselves and our loved ones to be informed – thank you, Susan, for compiling this important material.

The truth and lies about risperdal and greed have begun to unfold and it’s not a pretty picture (9/17/15)

10 things Johnson & Johnson probably wishes the world didn’t now know about the way it marketed risperdal (9/18/15)

Find the lady in the lies: a shell game of side effects and suffering for the sake of antipsychotic sales (9/20/15)

7 things you should know about how and why antipsychotics are inappropriately prescribed to people living with dementia in care facilities (9/26/15)

Susan Macaulay cares for her mother who is living with Alzheimer’s and is a recognized dementia care expert. Macaulay is creator and curator of SheQuotes, My Alzheimer’s Story, Amazing Women Rock, AmazingSusan.com, and Succeed With Susan. She is a feminist, global citizen, lifelong learner and the author of Everyday Feminine Wisdom and soon-to-be-published “the dogs’ breakfast.”