Jun 012012
 
Lee and Val

I’m Valerie Ferrero, wife, mother and care partner. My husband Lee was diagnosed with younger-onset Alzheimer’s (also known as early-onset Alzheimer’s)  in November 2008. This is the beginning of my story…..

It is difficult to know what action to take, what plans to make, or what the future holds when you don’t have the answer to the “elephant in the room.” It took more than seven years for us to get Lee’s diagnosis of younger-onset Alzheimer’s.

We began noticing problems when Lee was in his early- to mid-50s. He was the CEO/President of a local non-profit. I realized that things were worse than I suspected when his staff started calling me to find out what was going on or why he missed a meeting. I had been noticing early signs for some time by this point.

I really didn’t know that the problem would turn out to be Alzheimer’s. For one thing my husband was young.  Alzheimer’s happened to older people — or so I thought. He kept telling me it was the stress of his job, and I preferred to think that rather than any alternative.

In our quest for answers, we visited the Mayo Clinic in Scottsdale, Arizona, in 2006, where Lee was diagnosed with Mild Cognitive Impairment and Executive Dysfunction. The doctor prescribed a low dose of Aricpet and suggested that Lee might want to retire. He also stressed that Mild Cognitive Impairment does not necessarily turn in to Alzheimer’s. The doctor wanted us to return in a year.

We returned home and went about our daily lives. We saw a bit of improvement in Lee’s memory issues. But as the year went on, I was still hearing from his office and noticing changes myself.  Lee has always been a “people” person. Suddenly, he didn’t want to go to events or meetings. I sensed changes in his personality.  Negativity was creeping in where it had never been before. The little things were slowly becoming bigger issues. My once confident husband was losing his self-confidence. He began to second guess himself. And he worked longer and longer hours to make up for the loss of work time in the day.

His work was still stressful and he had become distant and defensive.  Things were getting progressively worse. We returned to the Mayo Clinic about a year and half later. The first visit we were there for several days. This time we flew in and out the same day.  The diagnosis was still Mild Cognitive Impairment and Executive Dysfunction.  The doctor wanted to continue to monitor his progress.

Again, we continued on in our everyday world, but friends were beginning to ask if anything was wrong. Lee was showing more signs of something being very wrong and of considerable stress. He had convinced himself that it was only work-related stress, but by this time I could no longer ignore the “elephant in the room.”

Our children were very aware of the problem from speaking with him every weekend and when they visited. The same story would be repeated over and over again. The same question asked over and over again.  This was creating a great deal anxiety for me. I was working and trying to balance the situation at home. It became increasingly difficult. I really needed answers.

I began to notice several troubling changes. He became dependent and seemed to need to know that I was around. This was something totally alien to me. I finally mentioned to our doctor that we needed to do something closer to home. This is when he mentioned the University of California, San Francisco. Another patient suffered similar problems and had had good luck at UCSF.

We scheduled the appointment as soon as possible. Our daughter, Jenny, was pregnant with our grandson John at the time. Our son, Eric, lives in Manhattan. Eric offered to go to the clinic with us. At first I resisted thinking of his costs and time. Fortunately, I relented and he met us in San Francisco. He set up the hotel rooms and everything for us. It was really helpful to have him there.

We were scheduled for early in the morning. I brought copies of all of the records from our never-ending quest for a diagnosis. The day before the visit Lee had an MRI of the brain. We picked up the CD of the scan to take with us. Lee went off with a couple of doctor’s and Eric and I met with other staff. They asked a lot of questions, and I gave them the records we’d brought with us. A little after noon, Lee and the doctor came out. The doctor said that we needed to return about 2 p.m. for a meeting and review of the morning.

Off we went to lunch on the campus. We arrived back at the memory clinic and waited in a conference room with a long table. We were joined by the different members of the staff that the three of us had been meeting with earlier, as well as students and some other doctors. There was a doctor from England. Dr. Bruce Miller, the memory center director.

Dr. Miller asked what we wanted to get out of the visit. My response, “answers.” He then explained the diagnosis. It was “Early Onset Alzheimer’s” (now often referred to as “Younger Onset Alzheimer’s).  He did several tests right there with Lee and asked him a number of questions. The other doctors also asked questions.

Dr. Miller advised Lee that he would have to retire. Lee didn’t think that retiring would be necessary. Eric asked Dr. Miller, “Would it be feasible for my Dad to get another job? He thinks that all he needs to do is get another job without stress.” Dr. Miller advised Lee that retirement was a must. He would not be able to work again. He could get another job and not remember what he was doing one day or why he was there. He recommended doing any of the things that we really wanted to do in the next couple of years.

Even though I was expecting to hear something like Alzheimer’s, it was still mind numbing to actually hear it. Dr. Miller asked if Lee would be willing to make a video for students. He wanted to demonstrate a highly functional, articulate younger than usual person with Alzheimer’s. Lee readily agreed.

We went back to the hotel and called our daughter. Even though she too knew the probable outcome, she was in tears. We were all both physically and emotionally drained. The next morning Eric headed back to New York and we started the four hour drive home.  We talked a little but were really feeling the weight of the diagnosis and lost in our own thoughts.

Forward to today: On most days, I understand and accept the diagnosis. Some days, however, I wonder if there’s been a mistake. For a brief, shining moment our world seems normal.  Then in the blink of an eye, we’re back in the reality of the situation. But while Alzheimer’s complicates our lives, it doesn’t end them. We try to live more in the present and to educate ourselves as much as possible about the disease. Knowledge helps us cope. We  attend a support group for people with early-stage Alzheimer’s and their care partners,  and we volunteer for the Alzheimer’s Association whenever possible. They give so much too so many that we like to give back whenever we are able.

Read Lee’s experience receiving a diagnosis of younger-onset Alzheimer’s.

Blog author Val Ferrero is a Senior Admissions Advisor with California Polytechnic State University in San Luis Obispo.  In 2008, Val’s spouse Lee Ferrero was diagnosed with Alzheimer’s disease. Since that time, Val has committed herself as a care partner and advocate in the fight against Alzheimer’s. Val and Lee have been married for 41 years and together have 2 children and one grandchild.

Mar 092012
 
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This post originally appeared on the ChicagoNow blog, “Ask Dr. Chill: Practical Answers to the Toughest Caregiving Questions.” It is being reposted here with the author’s permission.

Almost eight years at the Alzheimer’s Association — five at the Utah Chapter and close to three at the National Office right here in Chicago — left equally enduring imprints on my mind and heart. The mental imprint is analytical, bridging science and people in the shape of a fervent belief that a cure is inevitable.

The imprint on my heart is much different. It’s in the form of my own grandmother, who died of complications from Alzheimer’s disease and vascular dementia at the age of 89. It’s a delicate imprint, and it still hurts sometimes, even though she died more than 20 years ago. I see her face in almost every person I meet who has the disease.

It is because of these imprints that I took great interest in the Alzheimer’s Association’s recent release of its 2012 Alzheimer’s Disease Facts and Figures Report. This compendium of facts is impressive and startling. For a very cool visual summary of the toll that Alzheimer’s disease takes on individuals, caregivers, families, and the health care system, check out this 2-minute video marking the report’s release:

It gave Dr. Chill the chills…and some tears. According to the report, there are more than 15 million caregivers in the United States caring for someone with Alzheimer’s or a related dementia. In 2011, they provided over 17 billion hours of care valued at more than $210 billion.

But here’s the thing that really disturbs me. Caregivers don’t only care for people with Alzheimer’s disease and other dementias. There are caregivers for people with cancer, diabetes, heart disease, lung disease and those who had a stroke among other health complications. Some of you reading this blog may be caring for someone with a developmental or physical disability. Others might be taking care of someone who is simply having trouble maintaining independence due to the normal course of aging.

The numbers in the Alzheimer’s Association’s report are stunning, but they paint just one swath of the caregiver landscape. I started to wonder how much of the landscape remained. Some digging turned up a 2009 report—the most recent I could find that provides general numbers — compiled by the National Alliance for Caregiving and AARP. Caregiving in the US states there are 65.7 million caregivers in the United States caring for someone who is aged, disabled, and/or ill. Now that’s really stunning.

Remember that mental imprint I described? The analytical, more objective one. When I hear these kinds of numbers, my mind turns toward concepts of magnitude, awareness, research, the badly mired health care system, graphs, charts, grant proposals, and yes, cool videos that send shivers down my spine. In other words, I see the big picture.

But if you recall that other, more subjective imprint inside me — the one on my heart — I see a different vision. Try to imagine these massive numbers melting together into an indecipherable glob of hurt. What I see is one caregiver, one that represents the hundreds I’ve known over the years. She is tired, distraught, scared and doesn’t know where to turn for help. She feels incredibly alone. Yet she is not alone. As we’ve learned, she is literally in the company of millions.

It’s a bittersweet reality.

About Guest Blog Author Carrie Steckl, Ph.D.

Carrie Steckl, Ph.D. is a freelance writer specializing in caregiving, psychology, and aging. Her blog, “Ask Dr. Chill,” provides practical answers to the toughest caregiving questions.

 

Feb 032012
 

As millions tune in to the Super Bowl this Sunday, I am cheering for one football wife who tackled her husband’s dementia with a game plan to keep their lives as normal as possible and in the process found her calling as a caregiving advocate. Her passionate plea to the NFL, one of the most powerful organizations in sports, resulted in the “88 Plan,” a break-through long-term care plan that gives security and support to former players and their families when it comes to brain-related illness.

While this story is about caregiving, football and dementia, at its heart, this is a love story.

For Love of the Game . . . and the Man

When it comes to the gladiators of the gridiron, he was the Charlton Heston or Russell Crowe of his day. But, in the end, it would be his wife – on the sidelines of his entire career – who would become the warrior at the center of the action.

When John Mackey, No. 88, was inducted into the Pro Football Hall of Fame in 1992, he was only the second tight end to receive the honor. He was and still is considered one of the best tight ends to ever take the field. In fact, Mike Ditka, himself a Hall of Fame player and the first “pure” tight-end to be inducted into that rare club of exceptional players, stated that Mackey should have been first.
As a Baltimore Colt, where he played all but the last year of his career, John scored one of the most famous plays in NFL championship history. It was Super Bowl V played in 1971, that John caught the nail-biting pass from quarterback Johnny Unitas that first careened off the hands of the opposite team’s player, grazed the fingertips of his teammate and finally wound up safely in the arms of John who then ran it for a then- record 75-yard touchdown. It was this decisive play that helped the Colts beat the Dallas Cowboys and won John his coveted Super Bowl ring.

Twenty-one years later, as John took his place in football’s pantheon of great players for his Hall of Fame induction ceremony, right by his side was the woman who had been in that same spot since his college playing days, his wife, Sylvia. Theirs would prove to be a true love story, challenged only by a devastating medical diagnosis.
Little did either John or Sylvia know that day in 1992 that 14 years later, John’s toughest battles would be fought off the football field with his lovely wife serving as both tackler and blocker. At age 65 John Mackey was diagnosed with frontotemporal dementia (FTD), a degenerative disease caused by the rapid deterioration of the frontal and temporal lobes of the brain.

Tackling Dementia

What makes Sylvia’s story one of inspiration is that this diagnosis could have sacked her (in football parlance) but instead she did not let this devastating news knock her down. One incident that highlights the special challenges that dementia caregivers face was played out at the Baltimore/Washington International Airport.

“John and I were on our way to the Super Bowl – we never missed one and I was determined this was something we were going to continue to do – it always made John happier as we got ready for these annual trips,” said Sylvia.

But, this year was different. There was an incident with the TSA airport security that almost took them both down – literally. Her husband, proudly wearing his Super Bowl ring and trademark cowboy hat, refused to remove these items and place them on the conveyor belt to be scanned. In his mind, he did not understand that there had been a 9/11, he did not understand why they did not recognize him, and ultimately he thought they were trying to rob him of his precious possessions.

As John grew more frustrated with the TSA agents who, unaware of his diagnosis, thought he was just being a belligerent traveler, the agents grew increasingly irritated and finally tackled him but not after chasing the six-foot two-inch 220-pound former football player who dragged the agents several feet through the airport until several more agents joined in, handcuffed him and took him off to jail.

All the while, a tearful and frightened Sylvia was trying her best to explain to the agents and the curious onlookers that her husband was the NFL great and one of Baltimore’s favorite sons, John Mackey, that his illness meant he had no ability to understand what was happening, and ultimately she begged the officers to let her proud husband go. She collapsed while they dragged her confused husband away, and thought to herself, “I don’t know if I can do this anymore.”

Hemingway wrote that courage is grace under fire. When Sylvia caught up with her husband at the police station, John was back to his typical, jovial, social self – signing autographs for many of the police officers who finally recognized the NFL great. It was at this moment as her husband basked in the bright light of his fame, that she realized she could not give up on her husband or herself. That is when her courage took flight.

Instead of deciding that attending future Super Bowls or other travel would be out of the question, Sylvia got to work contacting the head of TSA at Baltimore/Washington International. She explained her situation and asked for his help to allow her husband to travel – especially to the sporting events and autograph signings that he truly lived for and were important to maintaining some type of normalcy in their lives.

The TSA executive designed a plan with Sylvia to have John brought through a private area where they could scan him without incident and without his having to remove items precious to him. In addition, the TSA executive also would contact the TSA executive at the arrival airport to explain how similar treatment of John upon his return flight out of their airport would be helpful to avoid any similar, dramatic incidents that neither party wanted.

And, these special plans are not just for those with famous last names. One lesson all caregivers can take from Sylvia’s travel strategy is to plan ahead and ask a lot of questions. Most airports will work with caregivers on the special travel needs of their loved ones.

The Final Play

Sadly, John Mackey lost his battle with dementia and passed away in 2011. A few years before losing her husband, Sylvia had written a passionate letter to then NFL Commissioner Paul Tagliabue asking for more support for retired players when it comes to their long-term-care (LTC). In his decade-long career, Mackey made about $500,000 – a salary that many back-up players make in one season today. The LTC plan was championed by current Commissioner Roger Goodell and was adopted by the NFL in 2007. The “88 Plan,” was named to honor Mackey’s jersey number and provides retired players suffering from Alzheimer’s disease, dementia, ALS or Parkinson’s disease with $88,000 annually for long-term care or adult day care or $50,000 to secure care at home.

Today, Sylvia is a board member of the Association of Frontotemporal Degeneration (AFTD) and speaks to caregivers across the country about the impact of dementia on families.

As the Giants and Patriots prepare to square off in Indianapolis in Super Bowl XLVI, Sylvia’s message to all caregivers on this game day – and every day – is to “Prepare. Prepare. Prepare.”

This is an excerpt on Sylvia Mackey’s story from Sherri Snelling’s book on celebrity caregivers and the lessons of love and caring that will be published in November, 2012.
©2012 Sherri Snelling

Learn More:

About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.

Jan 132012
 
Caregiver Mondays

Answer: One Resolution for Caregivers –52 Chances to Make It Work

Ahh the New Year is here – the hectic pace of the holidays is over, the frenzy over buying gifts and seeing  friends and family is done (at least for another 12 months).  You can finally breathe.  That is, unless you are one of the 65 million Americans who are caring for a loved one – that moment to put the world on “pause” and get a break never seems to happen.

When it comes to caring for an older parent, a chronically ill spouse or a child with special needs, we know that caregivers are at risk for adopting bad habits such as smoking or drinking, for not getting enough sleep, for not having the time to eat or exercise right and for not taking enough time to focus on themselves – whether it is a coffee date with a friend, a pedicure, a movie or other things that can bring a smile to our face.

This is why my wish for all caregivers this year is to make a promise to yourself that you can keep.  Make it simple.  Make it just about you.  Here are some tips on how to get there:

3 Steps to Keep That Promise to Yourself

1.       First of all, you need to have an actual plan. If you just have a desire to improve something, it is not enough.   You will be more successful at achieving your goal if you have steps on how to get there.  For instance, it is not about losing weight – it is about the changes you will take to reach that goal.  Breaking a big goal into small increments is a key part of your plan.

2.       In addition, you need to track your progress.  This instills a sense of mini accomplishments on the path to your goal.  It helps to talk to someone who is invested in seeing you be successful.  Having a friend or other support person who can be your “cheerleader” – celebrating your milestones towards the goal can help keep you going.

3.       Lastly, be committed to your goal.   Keep it simple (one resolution is better than two or three) and treat occasional “slips” as temporary setbacks on the path to reaching your goal.  You have to commit to change.   This is a marathon not a sprint.  Be kind to yourself if you have a bad day that makes you reach for the chocolate.  Remember the words of Scarlett O’Hara, “Tomorrow is another day.”  Start fresh the next day after a lapse.

My Answer:  Me Time MondaySM

I had the luck of meeting with a non-profit organization that I thought had a brilliant idea.  It is called Healthy Monday – based on scientific research and the support of prestigious institutions such as Johns Hopkins University, Syracuse University and Columbia University, they have found that starting a new routine on a Monday will make you more successful at whatever you want to achieve.  Essentially the premise is simple – just as the New Year is a time when we resolve to do something, every Monday is an opportunity to renew that promise to ourselves.

Healthy Monday says their research shows that most Americans feel Monday is the day for a fresh start.  It is part of our cultural DNA – Monday is the start of the work week, the school week and we feel renewed energy to start something after a nice weekend respite.

For caregivers, I believe using the Monday point in time to remind you of “what have I done for me lately?” would make sense.  Whether it is 5 minutes or 5 hours – it does not matter.  Check in with yourself every Monday and take time for you.

I was thrilled when Healthy Monday created a specific Caregivers’ Monday campaign.  They are part of a national movement to get our society focused on the value of family caregivers and the need to help caregivers stay healthy themselves.

Fifty-two weeks to reach your goal.  Pick one thing that you would like to accomplish just for you this year.  Check in with yourself every Monday.  And, tell me what your “Me Time” tip is – I will include it in future videos and blogs.  Good luck – 2012 is your year!

Learn More:

About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one.  She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.

Oct 212011
 
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As someone who works for the Alzheimer’s Association with support programs for caregivers, I decided to do a little research today on our Message Boards, where Alzheimer’s caregivers are able to communicate with each other about their concerns and get information and support from peers. For those who have been providing care to someone with Alzheimer’s disease for some time, the result will come as no surprise, but for those who are newer to caregiving, you can turn up a result that may make you curious.

If you go onto our message boards and search the Caregivers Forum with key words, you can pull about 30,000 posts containing the word “Alzheimer’s”, 14,000 that include the word “brain” and 10,000 that contain the word “neurologist.” No big surprises there, but here is the one that may surprise the newer caregivers: If you type in “UTI”, you will pull over 8,000 posts that are on 410 pages of our message boards.

UTIs, or urinary tract infections, can cause changes in someone with Alzheimer’s disease that you might never expect. The impact can be really profound. Some of the titles of the message board threads in which UTIs are mentioned tell the story well, including “Sudden decline,” “Yelling out and undressing in public” and “Manic episodes… WOW!”

Here is a sampling of some of the posts on the topic:

  • “For me, falling and hallucinations always mean check for UTI”
  • “Our compromised elders, especially females often develop, “silent” urinary tract infections. These UTIs are called “silent” because they usually have no symptoms of pain, no burning, no odor, no frequency, etc. BUT there will often be profound changes in behaviors.”
  • “UTI, UTI, UTI, UTI, UTI! When my mother has a UTI she sleeps all day. We can’t get her out of bed, she will also stop eating. Have the doctor check her for a UTI. “
  • “UTI and dehydration!!!!! I’ve never been so happy to get that kind of diagnosis. They have her on IV antibiotics. The interesting thing was that her urine was clear and they were pretty sure she didn’t have a UTI. Luckily the testing came back positive.”
  • “With my aunt, I could always diagnose the UTI because she started acting crazier than her current norm. (When she picked up a glass of water and threw the water over her shoulder, I called it right away —UTI.)”

When UTIs are wreaking havoc with the family members of our Alzheimer’s caregivers, we sometimes see threads in which the caregivers are in a state of panic about the symptoms. And for good reason — the symptoms are powerful and can actually mimic the end of life for some people. These caregivers are used to a slow disease progression, and the UTI with no overt symptoms can make everyone involved act in ways that reflect their feeling that this situation is a life-threatening emergency. The good news is that, while the UTI does need to be treated right away, this is for the comfort of the patient and the family. UTIs do not cause permanent damage, and they respond quickly and successfully to treatment. And best of all, once the infection clears, the person returns back to their condition prior to the UTI.

That’s when the message board posts show caregivers breathing a deep sigh of relief and thanking their peers in the online community for their caring support — and for tipping them off to one of the oddest but most treatable components of Alzheimer’s disease.

Learn More

Today’s guest post comes from Ellen Carbonell, LCSW, Associate Director, Family Programs for the Alzheimer’s Association’s national office.  Ellen is responsible for developing and producing dementia-related family programs for chapter implementation nationwide, and oversees the caregiver and early-stage support group programs. Trained as a clinical social worker, she has over 30 years of experience working with individual and family programs in mental health, vocational, educational, clergy and voluntary health care settings.

May 092011
 

I hate Bingo.

There, I said it. That popular activity which people of all ages enjoy at local fire halls, senior living communities and kindergarten classrooms across the country is one of my least favorite ways to pass the time.

As a former assisted living activities director, I can tell you that — in my book — the only thing worse than playing Bingo is calling Bingo. Round and round the cage would spin, as I strained to keep my eyes open so that I might read aloud each numbered/lettered ball that rolled down the ramp. (I’m sure it didn’t help that Bingo was usually scheduled at the peak of the midday slump, around 3 p.m.)

Yes, I enjoyed seeing the residents get excited about winning, or fighting about what constitutes postage stamp Bingo, but as I recall, many of them looked as bored as I was.

Here’s the thing: If you didn’t enjoy Bingo when you were a kid, you probably won’t enjoy it as an adult.

Besides, there are so many other fascinating hobbies and engaging activities that it just doesn’t seem fair to resort to Bingo all the time. Yet I would venture to guess that if you were to compare activity calendars for five assisted living facilities in your town, they would all list Bingo at least once.

And what does Bingo have to do with Alzheimer’s, you ask?

Bingo is an activity. Love it or hate it, it’s an activity that some people enjoy whether they have Alzheimer’s or not.  True, Alzheimer’s may limit full enjoyment of the game, but just because a person is diagnosed with Alzheimer’s doesn’t automatically negate all previous interests.

And in the case of interests, hobbies and activity preferences, an Alzheimer’s diagnosis means nothing.

Unfortunately, too many family/professional caregivers feel that an Alzheimer’s diagnosis means everything when it comes to activities, but it doesn’t. Certainly the way the afflicted individuals engage in these activities may change for any number of reasons (medication side effects, lack of sleep, difficulty with language or motor skills, etc.), but the person in your care has not lost all of his or her history or identity. If your Mom enjoyed gardening all her life, why would a diagnosis change that? If Granddad loved watching the World Series and has fond memories of doing so every year since the age of 5, why should he stop?

Alzheimer’s Is About Adaptation

Those living with cognitive impairments — and their caregivers — are constantly adapting to the changes wrought by the disease. Sometimes, those adaptations are subtly applied and integrated into the daily routine; other times, a drastic adjustment is required of both parties. Nevertheless, adaptation is a regular, recurring part of a life with Alzheimer’s.

When planning for and providing meaningful, stimulating activities for those with Alzheimer’s and related dementias, consult the individual’s personal history for clues about favorite pastimes, and use these as the foundation for program/daily routine design. If and when it is necessary, adapt these activities to fit within the framework of the individual’s abilities. Maybe your mom loves to hike but the risk of wandering is too great. Figure out a way that allows her to hike safely without feeling like she’s a child who can’t be trusted. Find a respectful balance that promotes independence while ensuring her well-being.

If your brother enjoys taking beautiful photographs of the birds that come to his backyard feeders, there is no need to let the Alzheimer’s diagnosis take that away too. You may need to help him develop film, you may not. You may need to remind him where the camera is stored when not in use, you may not. Don’t change a thing unless you have to.

Unfortunately, this method is not 100 percent foolproof. Sometimes, the whims of Alzheimer’s disease prevail, wreaking havoc on an individual’s personality/mood, which might mean they lose interest in things that they had enjoyed previously. If the safety of the individual is at risk by participating in certain hobbies or routines, you may need to discontinue or alter them accordingly. My grandfather, an expert woodworker, was bedbound as a result of his Alzheimer’s, so getting him down to tinker in his workshop was not an option. In other cases, the person can be so depressed about their inabilities that they are paralyzed with frustration when they cannot do what they did so easily before. Be sensitive to this possibility, and don’t push your loved one — or yourself — to continue in a particular hobby if it only brings agitation.

Resources for Activity Planning

There are a wealth of articles and resources out there about meaningful, stimulating activity ideas for those with Alzheimer’s/related dementias. Some are better than others, but if you ask me, it all comes to back this idea of identity, to the fact that the person in your care is still an avid reader, classical music lover, golf aficionado, etc. despite the devastating diagnosis.

Storytelling/journaling, art therapy, pet therapy, intergenerational programs, reminiscing, household chores, baking, gardening, music, dancing, exercise, photography — the list goes on.

Explore the possibilities at these links if you’re at a loss, but only after you’ve asked the person in your care what they would like to do first:

1. Activities for People with Alzheimer’s

2. 101 Activities for Kids To Do with a Loved One with Alzheimer’s

3. 50 Activity Ideas for Someone with Alzheimer’s

4. Adapting Activities for People with Alzheimer’s

5. Activities for People with Alzheimer’s from AARP

What I would offer is this: Alzheimer’s has already complicated things in your life. Don’t make activity planning harder than it has to be. Adapt the activities that you/the person with Alzheimer’s has always enjoyed, and go from there. If you follow this rule-of-thumb, you have, by default, selected an activity that is both meaningful and stimulating, and the simple act of providing this activity can be a real source of comfort (to all parties involved) in the chaos that is Alzheimer’s disease.

Today’s guest post comes from SeniorsforLiving.com’s Michelle Seitzer. Before becoming a full-time freelance writer, Michelle spent 10 years in the senior living and advocacy world, serving in various roles at assisted living communities throughout Pennsylvania and Maryland, and leading the charge against Alzheimer’s as a public policy coordinator for the Pennsylvania chapters of the Alzheimer’s Association. She has blogged for SeniorsforLiving.com since November 2008 and currently resides in York, Pennsylvania, with her teacher husband and two Boston Terriers.

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