Category Archives: Family

Alzheimer’s: Last Minute Tips for Thanksgiving

22 Sunday Nov 2015

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

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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….

 

 

 

Two Alzheimer’s Caregivers: Straight from the Heart

25 Saturday Jul 2015

Posted by in Advocacy and Awareness, Blogging, Caregivers, Events, Face of Alzheimer's, Family, Inspiration, Music and Art, Ruminations, Smiles, Support system

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stained-glass-love-hands

Image Source: morguefile

I’ve seen a couple of posts this week that have really touched my heart. Allan Vann and Vince Zangaro are on very similar, yet different paths. One of the things they have in common is their willingness to share their stories to raise awareness and bring hope and comfort to other caregivers.

Allan Vann

Allan Vann is a talented blogger who has published hundreds of insightful, informative articles on his blog. He also recently began writing a column for the Huffington Post and was interviewed by CBS news last week.

Allan’s wife, Clare, was formally diagnosed with younger onset Alzheimer’s at age 63, but had been experiencing signs for several years before that. Allan cared his wife at home before making the difficult decision to place her in a care facility. However, he learned that doing so allowed him to be her husband again, rather than her 24×7 caregiver, which was a true gift to both of them.

allan

Image Source: CBS News

The CBS interview captures the pain of slowly losing a loved one to Alzheimer’s with a raw, emotional accuracy.

Although it was my mother rather than spouse that I lost to this horrid disease, so much of what Allan says rings true to me. The arguments were the most difficult – early on, we fought about everything, and that was so uncharacteristic of our relationship. So sad to think about it…

Read more and watch the Allan’s interview here.

Vince Zangaro

Vince Zangaro was just 29 when his father was diagnosed with Alzheimer’s ten years ago at age 62. He & his wife, Amy, are full-time caregivers and by sharing their journey, they help others to stay afloat.

Vince had a wonderful piece published on The Caregiver’s Voice this past week. One of the things that makes it unique is that Vince wrote it from his father’s perspective.

When I open my eyes in the morning, I feel scared. Where am I? Where have I been? Do I know this place? I look to the right, and the people there are sleeping soundly. I can’t remember who they are, but I know they love me and I love them; I feel safe.

Image Source: Facebook

Read the full piece here.

In some ways, Vince’s posts and his videos make me miss my mom even more, but mostly they remind me of all the happy times we shared even as she fell further into the clutches of Alzheimer’s. His words also illustrate how having a loved one with Alzheimer’s changes our lives, and how that often results in us becoming better human beings.

One of his recent Facebook posts provided a simple, yet invaluable tip, in such a heartwarming way.

“I have learned when giving dad a hug to have it last a minute or longer. After the 60 second mark you will start to see him grasp the moment. It doesn’t always take medicine to help someone you love.”

And then there’s this video that makes me smile and cry at the same time…  if it was possible to make a 3-minute video that defines love in its truest form, this is it.


Vince is also founder of the Alzheimer’s Music Fest which you can read more about on Facebook or at the event website. If you’re in the Duluth, GA, area, check it out!

In Alzheimer’s News: Weekly Roundup

17 Friday Jul 2015

Posted by in Advocacy and Awareness, Caregivers, Early Onset, Face of Alzheimer's, Family, Genetic Testing, Pharma, Round Up, Sandwich Generation

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Familial Alzheimer’s at Age 34

Image Source: Montgomery Advertiser

Carrie Richardson – Advocate Extraordinaire Heads to DC. (7/16)

“She’s a 34-year-old single mom of three from Montgomery, who was diagnosed more than two years ago with Early Onset Familial Alzheimer’s, plans to head to Washington, D.C., on Friday to bring awareness to a disease that has taken the life of her grandmother, father, uncles and cousins. All were diagnosed in their 30s.”  ~Kym Klass, Montgomery Advertiser

To read the full article, visit –> http://www.montgomeryadvertiser.com/story/news/2015/07/15/mom-alzheimers-treks-dc-bring-awareness/30207805/

Coming to a Pharmacy Near You: Namenda Generic!

At last, a generic form of Namenda (aka Memantine) is finally on the market. This means significant cost savings for families who have had no choice but to pay the exorbitant price for the brand name drug! Bob DeMarco of the Alzheimer’s Reading Room shared more in his July 15 post.

“When Aricept (Donepezil) went generic the price immediately fell from $280 for a 30 day supply to $153. Six months later when other generic drug makers were permitted to offer the drug the price fell to less than $10 for a 30 day supply.” ~Bob DeMarco

To read the full post –> http://www.alzheimersreadingroom.com/2015/07/generic-namenda-is-now-available-for.html

Lost and Found in the Land of Dementia

Image Source: http://www.knopps.com

This is an excellent opinion piece from the NY Times (7/11). I can relate to so much of what the author describes. Once we learn to drop expectations, we begin to see through the Alzheimer’s fog, realizing how much of our loved one is still there. Different, yes, but very much still there. Lost ..and then found. A good characterization.

“I stopped concentrating on the content of her words and, instead, went along with every twist. Once she said she wanted to go somewhere for a picnic. ‘Why, Mom?’ I asked. She said: ‘So we can boil the chicken.’ Rather than grilling her about what she meant, I asked what kind of chicken we should boil and where we should hold this picnic.” ~Steve Knopper

To read the full article, visit–> http://www.nytimes.com/2015/07/12/opinion/sunday/my-mother-lost-and-found.html?smid=fb-share

Missing Jim: The Reality of Alzheimer’s

If you aren’t a follower of Karen Garner’s blog, Missing Jim, I highly recommend it. Jim Garner was diagnosed with younger onset Alzheimer’s in 2011. He wasn’t even 50 years old. Karen had noticed changes when Jim was 45 and she was just 37; at the time, their children were 3 and 6. Difficult to even fathom, isn’t it?

Now as Jim’s declines, Karen juggles the roles of full-time caregiver to her husband and mother of two young kids still at home. Earlier this week on her blog, Karen shared an update on the frightening turn of events that occurred when Jim recently visited his parents in another state.

As I read her last two posts (7/8 and 7/16), I found myself wondering how I would have handled the situation – I fear it would not have been pretty. Reading about their experience is a stark reminder of just how cruel and unpredictable Alzheimer’s can be.

“Jim had difficulty on the way while riding in the car at one point getting aggressive with my parents. Then he had several severe psychotic breaks during his first full day away, culminating with police, an ambulance ride to the ER and now a stay in a locked psychiatric unit. In Connecticut. While I am in Virginia. And he is confused. And scared. And alone. And a lost soul. I can only understand about every 3 words he says on the phone.” ~Karen Garner