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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Tips

Reasonable Expectations: Key to a Happy Holiday

24 Sunday Nov 2013

Posted by Ann Napoletan in Caregivers, Eason House, Expectations, Grieving, Helpful Resources, Holidays, Mom, Ruminations, Tips

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Tags

alzheimers, alzheimers expectations, caregiving, dementia, holidays

turkeyIt’s that time of year, and we’re seeing lots of tips on how to handle the holidays once Alzheimer’s comes calling. For me, it can be boiled down to these three words: Have reasonable expectations.

One of the easiest – and most dangerous – traps to fall into is building the holiday up in your mind, and creating a Norman Rockwell-esque image that probably wouldn’t be realistic even in the best of times. Nine times out of ten, doing so is going to result in stinging disappointment. It took me a long time to learn this, but it finally happened in 2010.

We had moved my mom into a beautiful residential memory care home, and I was envisioning the most perfect Thanksgiving. In my mind’s eye, the table was set beautifully, the food was delicious, and everyone was smiling. But I didn’t just imagine it; I was determined to make it happen. Instead, the day went something like this:

* Making Lemonade Out of Lemons… or Margaritas Out of Tequila

Donna Reed-kitchenDamn if I didn’t conjure up a glorious vision of mom having a great day and even helping me in the kitchen (I think in my vision, we were even wearing spiffy pumps with 2-inch heels and cute little gingham aprons trimmed in lace). Fantasyland. Big. Mistake.

Kitchen activities commenced at home last night, where I baked the pies and made our favorite cranberry sauce and salad. This morning, I did the candied sweet potatoes then loaded the car with all the prepared food plus fixin’s for mashed potatoes, corn, and stuffing. I had pre-ordered a fresh turkey and dropped it off at Eason House earlier in the week.

Reality Sets In

My fantasy began to crumble about seven-eighths of a second after I arrived at the house. When I went inside, it was very apparent that mom was having another “one of those days”. She was stony and silent – despondent. I quickly grabbed one of the pies and cut her a slice thinking I could turn things around.

Alas, she lit up at the sight of the pie and ate every single bite. Unfortunately, when it was gone she fell right back into her funk.

I was there for about seven hours, and aside from a few moments here or there, she was inconsolable. There were a few small stretches where she let me rub or back or head and hold her hand, but the vast majority of the day consisted of her pacing, screaming, sobbing, standing out in the rain, pulling her hair, and hitting. To put it mildly, it was awful. 

There is nothing worse than seeing her that way and not being able to do a single thing for her. She doesn’t want to be touched, talked to, or comforted. And she is very good at letting us know it.

I’ve never experienced such a feeling of complete and utter helplessness.

On days like today, I know there are moments of clarity where she realizes things aren’t right and that just frustrates, angers, and scares her more. Based on her facial expressions and behavior, I can’t begin to fathom what’s going on in her mind, but whatever it is, it’s horrendous.

The Show Must Go On

boiling-panI went ahead and cooked dinner, but all the while, my stomach was churning, my heart was breaking, and my own mind was going in a million directions.

Who is this woman?
   What can I do to help?
      Get me out of here.
         What if I’m doomed to the same fate?
            Why didn’t I bring a bottle of wine?
               Is this *really* my mother?
                  Am I in the middle of a bad dream?
                     Will she let me hug her?
                        Can I convince her to taste this stuffing?
                           Should I try to talk to her or back off and give her space?
                              Why can’t ice cream fix everything??

When it was all said and done, Mom’s caregivers sat down to dinner with Jess and I. I’m not sure I even tasted my food; it all just landed in a heap in the pit of my stomach. Mom wouldn’t come to the table, but after we finished, I did coax her over with another piece of pie.

Next Year: Thanksgiving in Bora Bora?

autumn-leavesSlowly, the rest of the ladies arrived home after having dinner with their families. The house was a bit chaotic with a lot of conversation and activity, which just adds to mom’s agitation. Eventually, everyone left and the house was once again quiet.

One of the ladies was hungry, so Susie fixed her a plate and she raved about how delicious the meal was. That, along with a text from Jess (“Thanks for a great meal!”) was the highlight of the day.

Quite honestly, I don’t care if I never cook another turkey in my life… celebrating Thanksgiving on a deserted island sounds like a spectacular plan, in fact.

(*Excerpt from post written November 25, 2010)

Well, as I recall, that night ended with a margarita (or two) and a vow to start a new Thanksgiving tradition which we did the following year.

Right up until the end of her life, I had remind myself to keep my expectations in check, but after that day, it became a little easier. It was all about realizing that the holidays would never be what they once were, but we could still have some incredible moments of joy.

 

Related Articles
Holidays & Alzheimer’s Families
Holiday Hoopla
The Alzheimer’s Caregiver: Tips for the Holidays
Grief and the Holidays: 10 Personal Tips for Grievers
Approaching the Holiday Season as an Alzheimer’s Caregiver
Grief Healing: Coping with the Holidays
8 Tips For a Great Holiday Season

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Caregiving 101: Outstanding Online Resources

17 Sunday Nov 2013

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Caregivers, Helpful Resources, November-National ALZ Awareness Month, Research, Support system, Tips, USAgainstAlzheimer's, Washington

≈ 8 Comments

Tags

alzheimers, alzheimers resources, caregiver resources, caregiving, dementia

nat fam caregivers monthNovember marks both National Alzheimer’s Awareness Month and National Family Caregivers’ Month, and what better time to highlight some helpful online resources.

When my mom developed Alzheimer’s, I knew nothing – or less than nothing if that’s possible! It was truly baptism by fire, and I wish I’d had access to the plethora of information out there today.

Even just connecting with others who were at various stages of the journey would have been a godsend. Ironically, it’s been since Mom’s passing that I’ve discovered a lot of these resources, which is why it’s important to me to let other caregivers know they’re available.

Alzheimer’s Association

alz-assn-symbolThe Alzheimer’s Association offers several excellent tools including:

  • The Alzheimer’s and Dementia Caregiver Center is a portal providing a window into a variety of tools and resources. There you’ll find help on behaviors, communication, legal and financial matters, and care options, as well as tips on driving and safety issues, activities for your loved one, and respite care.
  • Community Resource Finder will help you locate resources, services, and programs right in your own community. It’s as simple as entering your zip code and choosing from a list of over 20 categories including elder care attorneys, assisted living communities, area agencies on aging, home health care, and many more.
  • ALZConnected is a virtual community of caregivers. The site is divided into two sections; message boards let members connect with other Alzheimer’s families on topics such as caring for a spouse or partner, clinical trials, and early onset, among others. The solutions pages allow users to pose questions to the community, peruse existing questions and answers by topic, or respond to questions posted by other members.
  • Alzheimer’s Navigator guides you through the process of developing an action plan tailored to your own unique situation.
  • Virtual Library provides access to thousands of books, journals, and other media, available to borrow.

Facebook

fb-iconDid you know there are many Alzheimer’s and dementia virtual communities on Facebook? These groups provide a great way to connect with other caregivers who truly understand what you’re going through. In addition to camaraderie and support, they provide a jumping off point for finding tons of other resources. A few of my favorites FB communities include:

  • USAgainstAlzheimer’s Facebook Community
  • Dementia Aware
  • Memory People
  • Alzheimer’s Caregiving Knowledge Base
  • Forget Me Not
  • Early Onset Alzheimer’s Support Group

Other Awesome Resources

Bob DeMarco’s Alzheimer’s Reading Room is one of most well-received and heavily visited Alzheimer’s blogs on the web. Bob was his mother’s primary caregiver until her passing, so he brings tons of personal experience to his writing.

His site is also a great resource for the latest news and developments in the world of Alzheimer’s. The Alzheimer’s Reading Room is a wonderful source of practical advice for those dealing with Alzheimer’s, and I suspect that once you start reading, you won’t be able to stop.

I also recommend checking out Alzheimer’s Speaks founded by highly sought after dementia expert Lori La Bey whose mother has struggled with Alzheimer’s for more than 30 years. Frustration with lack of information and resources led Lori to develop the site as a way to help other caregivers.

Alzheimer’s Speaks is currently recognized as the number one online influencer for Alzheimer’s, and it offers an incredible wealth of information. On the site, you’ll find tools, resources, articles, and much more including links to the Dementia Chats webinar series and the extremely informative Alzheimer’s Speaks Radio.

Finally, IAM-Care is a new site billed as the first comprehensive caregiving platform for Alzheimer’s and dementia. It is currently in beta test but founders invite anyone interested to join, take a look around, and provide feedback.

At IAM-Care, the vision is to offer a platform that combines social networking with access to expert knowledge. Perhaps most importantly the site provides secure, personalized healthcare tools to help every caregiver keep vital information organized and at their fingertips.

Get Involved!

us-against-alzIf you’re looking for a way to take action and become an advocate, I suggest checking out USAgainstAlzheimer’s. Founded by George and Trish Vradenburg, this grassroots organization is serious about finding a cure by 2020. Take a look at part of their mission statement:

We are dedicated to mobilizing individuals to demand the urgency, passion and commitment needed by our political, business and civic leaders to achieve the goal of ending Alzheimer’s by 2020

USAgainstAlzheimer’s will provide you with the latest news from Washington as well as the tools you need to make your voice heard.

alz-prev-initAnother powerful way to make an impact is to join the Alzheimer’s Prevention Registry, an offshoot of the Banner Alzheimer’s Institute in Phoenix, Arizona. The registry provides an easy way to stay connected with Alzheimer’s prevention studies taking place in your own community.

The organization’s goal is to register 250,000 members by 2015, bringing together those who believe that the time to end Alzheimer’s is NOW. It only takes a few minutes to register; membership is free and does not obligate you to participate in any research.

Being part of the Prevention Registry will give you access to the very latest research news, arming you with the information you need to be a strong advocate.

Share Your Favorites

laptop-and-coffeeWhat are some of your favorite resources – online or otherwise? Please leave a comment and share your thoughts with other readers. If you found something helpful, it’s likely that someone else can benefit from it too!

Be sure to also check out my Helpful Resources, Reading List, Recommended Blogs, and News & Information pages, and stop back periodically for updates. It is my sincere hope that you or someone you know will find this information helpful.

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Sensible Strategies for Coping with Sundowner’s

10 Sunday Nov 2013

Posted by Ann Napoletan in Behaviors, Caregivers, Helpful Resources, Signs and Symptoms, Sundowning, Tips

≈ 2 Comments

Tags

alzheimers, caregiving, dementia, dementia behaviors, sundowners, sundowning

clockThat pesky biannual time change wreaks havoc on all of us – it never ceases to amaze me how much one little hour can throw my body clock into a tizzy.

Anything that rough on us has to be exponentially more difficult for those living with dementia. The autumn change seems particularly challenging since it means the sun is setting so much earlier.

Sundowner’s

Sundowning is a term commonly used to describe a marked increase in confusion and agitation in dementia patients as evening approaches. Experts have long debated exactly what causes this phenomenon, but no one has a definitive answer.

Many believe the decrease in light is a big part of the equation, while others feel Sundowner’s may be due to hormonal changes occurring at night or even just simple fatigue. There are also those who think the symptoms could be caused by an accumulation of sensory stimulation from the day, causing an “overload” of sorts and resulting in stress and anxiety.

Six Ways to be Proactive

  • sunny-autumn-dayIdentify triggers. Limit outings, visits and other highly stimulating activities to morning or afternoon. Keep noise and commotion to a minimum in the evening; turn off the television and consider playing soft music instead.
  • Avoid afternoon naps. Too much sleep during daylight hours can confuse the body’s circadian rhythms. Plan daytime activities and encourage light exercise to help expend excess energy in a healthy way.
  • Watch their diet. Limit sweets and caffeine to morning hours. Some people also do better having their heaviest meal at lunchtime and opting for a light dinner.
  • Maintain a consistent routine. Dementia patients do best when kept on a schedule. Routine and structure go hand in hand with a feeling of safety and security. Keep meals, showers, bedtime, and wake time as consistent as possible.
  • Be cognizant of the environment. Clear excess clutter, which can contribute to the agitation caused by sundowning. Consider the fact that even seemingly benign objects like mirrors and photographs can frighten or confuse someone with dementia. Before dusk falls, close curtains and blinds and turn on as many interior lights as possible.
  • Ensure their physical comfort. Hunger, thirst, and pain will increase anxiety and fruitagitation. Offer a light healthy snack and be sure they’re hydrated without overdoing liquids close to bedtime. See that they are dry, and keep the room/house at a comfortable temperature. A sudden spike in agitation could also indicate the presence of a urinary tract infection or another ailment.

 Tactics for When All Else Fails

It’s important to know that despite the best laid plans, sometimes there’s simply no avoiding it. It’s a fact – staving off Sundowner’s is one part art and one (or more) part luck. There are a few things that may help, though.

  • Redirect. If you notice increased activity or pacing in your loved one during evening elderly-womanhours, attempt to redirect them to quiet activities such as working puzzles, folding washcloths, or listening to music. If they insist on pacing, allow them to safely do so; never try to physically restrain them.
  • Provide reassurance. Speak in a soft, soothing tone letting them know that everything is okay. Avoid arguing – it will only make things (much) worse.
  • Touch does wonders. A gentle massage or backrub, or even just sitting and holding his or her hand, can bring a sense of calm.
  • Do your best to keep your cool. Patience can be in short supply at times like this, but remember your loved one will sense your stress, which often adds to their agitation.
  •  Seek help. It may help to keep a journal for a couple of weeks to try and identify patterns. If sundowning becomes increasingly problematic, discuss your concerns with the doctor. Medication may be considered as a last resort.

Maintaining Perspective

autumn-colorWhen frustration is getting the best of you (and if you’re human, it will), try to remember they are not acting out intentionally. Don’t take their words or actions personally.

The most important thing is keeping them safe; beyond that, it’s often best to follow their lead. Sometimes my mom didn’t want anyone talking to her but appreciated holding hands; at other times, she just wanted to be left alone to pace. And to be quite honest, there were moments where there was just no consoling her – those were the most difficult. A feeling of helplessness like nothing I’ve ever experienced.

It all comes part and parcel with the disease and all we can do is our best – whatever that is at the moment.

How have you dealt with sundowner’s? Can you offer any advice to other caregivers? If so, leave a comment. I’d love to hear from you!

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Marilyn, BA (before Alzheimer's)

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