Team Wendy’s Walkers Challenge Alzheimer’s

wedding-Wendy D.

Wendy DeLucca, an incredible supporter of the Alzheimer’s Association, graciously agreed to discuss with us some of the trials, tribulations, and moments of joy that come with losing a loved and beginning to heal.

wedding-Wendy D.
Wendy and her mother

Alzheimer’s Association (A): So, we’ve heard that you have a Walk to End Alzheimer’s team titled “Wendy’s Walkers;” is this your first time participating in the fundraiser?

Wendy (W): No, I started the team in the fall of 2008. Every year the team has gotten bigger and raised more money.

A: What has been your fondest memory of the walk?

W: There are two things I can think of. The first is always at the walk itself. While there, I always run into people I know, but did not know had a connection themselves to the disease. And I always find that to be pretty powerful.

The second moment is two years ago when I had done a really large fundraiser for the team. By doing the fundraiser I was able to say to the people that I truly felt like I was honoring my mother’s memory. It really gives you a sense that you are actively participating in something to honor someone’s name. It feels empowering to have a lot of people involved in that goal. It is one thing to receive a donation, but it’s entirely different to have 50 people in one room supporting you. It’s just a heavier feeling.

A: What encouraged you to begin participating in the Walk to end Alzheimer’s?

W: My mother, who had Frontal Temporal diagnosis. I began walking the same year we had to place her in a nursing home.

A: What is the fondest memory you have of your mother?

childhood-sunglasses-Wendy DeLucca
Wendy as a child with her mother

W: Our long phone calls. My mom was someone that I could always call, I could always talk to her and ironically her speech was one of the first things to go. There are so many times that I still wish I could pick up the phone to call her. For so many of the little things and the big things, I wish I could call her.

A: What is one of the more challenging aspects of caring for a person with Alzheimer’s disease?

W: One challenge that I faced and that I often see other people face is finding patience with the person. The person will sometimes do things that are so out of the norm for an adult and you get upset or lose your patience.

A: Would you offer someone else who might be in the same place you once were any advice?

W: Reach out for help. I had a really difficult time convincing my father that he needed help and, finally, I think he felt he might explode if he didn’t get help. I wish more people could see early on that you cannot do it all alone.

I got some help early on, but I would suggest doing more. I would suggest trying out different support groups, using the helpline, depending on how early on things are, always get different opinions.

As hard as it is, at the beginning you should start reading about what issues might arise in the later stages. Reading can help prepare you for decisions regarding medical, caregivers, legal aspects, and more. Reach out for help and do your research.

A: Had you heard about the Alzheimer’s Association and the resources it has to offer prior to your mother’s diagnosis?

W: I don’t think so; I know that it definitely wasn’t on my radar. Surprisingly, I had a grandmother who had Alzheimer’s, but I still hadn’t heard of the Associations. However, I think I might have discovered it by picking up a flyer or researching links online.

Once I learned about the resources available, the first thing I used was the 24 hour helpline. Through the helpline I would request more resources.  Originally I started out in a support group that was more directed towards spouses, but I wish I had tried others.  I was working to try and help my dad, and I was very confused about how quickly my mother’s disease was spiraling out of control, so in retrospect I wish I had done more.  Instead I got more involved in the walk and raising money for my team.

In time, I spoke to Maria Tomasetti and I had done a few volunteers things and I went to a training session so that I could lead a support group. There is some comfort in talking to people who know exactly what you are going through. It’s a little different than talking to a friend who can only listen.

wedding-4-Wendy D.
Wendy and her mother on her wedding day

A: What do you wish more people understood about the disease?

W: I wish there was a better understanding of the basics of dementia. Dementia is the umbrella term and there are many different types of dementia, but there is also a misconception that this is only an elderly person’s disease.

Understand the basics, breast cancer is one type of cancer, Alzheimer’s is one type of dementia and it’s not just memory loss. If people notice and are aware of other behavioral or personality changes it may be another type of dementia.

A: What motivates you to turn such an awful disease into something as amazing as Team Wendy’s Walkers?

W: My mother is the main source of motivation.  What our family went through, to me, reflects all of the other thousands of families that are going through this. The day to day angst that arise, the phone calls in the middle of night from my father unsure of how to handle uncharacteristically erratic behaviors, watching her go from my mom, and independent adult, to a helpless frail person. Seeing all of that and wanting to help other families and wanting to see more money put into research is all the motivation I’ll ever need. There is a lot of money needed to bring the research where it needs to be.

A: Is there anything else you might want readers to know?

W: I would encourage other people who are touched by this to try to find, even within their busy lives, a little bit of time to reach out to others. There are a lot of times you overhear something or maybe see something on Facebook about a friend of a friend. I would like to see people who are affected by this disease feel like a community. Even if it’s a stranger, offer a listening ear. That is my wish for a lot of things in life, a community around shared experiences.

Contributor: Cailinn O’Callaghan, Student Intern, Summer 2014

Why I Walk: Lisa Kociubinski

For this young musician, finding her voice to help those with Alzheimer’s is all that matters.

Music has always been a part of Lisa Kociubinski’s life. She grew up playing the flute, but when she became aware of the effect that Alzheimer’s disease had on her family, music became more than a passion, it became a way to connect with her grandmother and later became a way to help others who are facing the disease that her grandmother passed away from in 2011.

Lisa, a neuro-research specialist in Alzheimer’s disease and the connection of music, has been aware of the influence music has on those living with Alzheimer’s disease. Throughout  Lisa’s childhood her grandmother, Weronika Cwiek, would create rhymes and limericks to sing as Lisa played her flute. As Weronika’s Alzheimer’s progressed, these rhymes became one of the only connections left between the two women.   “As she progressed, she always sang those limericks, those songs,” said Lisa, “the connections that we had through the plaques and tangles of the disease  allowed for there to be some sort of familiarity and even though she couldn’t recognize me she could recognize the songs I would play on the flute.”

As a college student  studying biology at Loyola University New Orleans, Lisa was attending a molecular biology class when an unexpected motivation sparked a goal to help those who were going through the very disease that was affecting her family in New England.  “My molecular biology professor was lecturing about the Disease and asked the class if they knew anyone who had or has Alzheimer’s. As the professor was describing the disease, she said that Alzheimer’s disease is worse than death,” shared Lisa. It was after this class that Lisa realized her professor was creating a stigma about the disease that wasn’t there prior to the lecture.  “It didn’t seem like she knew how the disease impacted each person. I decided that night that I want to fight stigma and help find research to help those with Alzheimer’s disease,” said Lisa.  For Lisa, ending this stigma and finding a way to help those facing the challenges presented with Alzheimer’s disease is one of the most important things she can do. “The most important thing for me is that I’m a young adult and this provides a voice for me to join the fight against Alzheimer’s disease. It’s a hidden generation of people who are going through this disease with their families. It’s very different for each generation to experience this because it is difficult for everyone involve,” she said.

Though Lisa is not presently involved with research, she is striving to help those living with this disease. She is the program coordinator for Friendship Circle in Glastonbury, a program for Glastonbury seniors who have early staged dementia, and the team captain for Team Harmony, a team that annually participates in the Walk to End Alzheimer’s.

By combining her passions for music and helping those with Alzheimer’s disease it seemed fitting that that her Walk to End Alzheimer’s team name is Team Harmony.

The medial part of the brain, which is one of the last parts of the brain to be affected by Alzheimer’s disease, allows music to be heard and have a positive effect for those living with advance stages of the disease. “It’s amazing to see someone who can’t remember what they had for breakfast, but can remember the lyrics or melody to a song” she says on the positive influence music has on Alzheimer’s.

Team Harmony hosted a kickoff for their fundraiser on August 30 at Curves of West Hartford for the Alzheimer’s Association. The fundraiser included a presentation by Patty O’Brian, North Central Director of the Alzheimer’s Association, Connecticut Chapter followed by a purple raffle.  Tickets are being sold for this event until September 20th.

Lisa K. Blog Aug 2014 2 Lisa K. Blog-Aug 2014 Lisa's fundraiserFor more information about the Walk to End Alzheimer’s, please visit www.alz.org/ct

Special thanks to Molly Sweeney, Communications Intern for writing this post.

Continuing the Legacy

John Clark2When John Clark’s mother, Ruth Vivian Clark, was diagnosed with Alzheimer’s Disease in 1993, the now 72 year old and retired 7th grade math teacher at Ledyard Middle School saw the impact that this disease had on his family.

“Mom was already well into the third stage of Alzheimer’s disease, and my sister, Jeanne Warren, of North Sullivan, ME, was the caregiver to our Mom. At the same time Jeanne had a full-time job as an administrative secretary for the Sumner High School Adult Education program. She had been totally committed to her job and our mother’s care, and I felt that I just had to do something. So, I thought maybe I could do a long-distance cycling ride and raise money for the Alzheimer’s Association. I realized that the results of my effort would not directly affect our mother, but it would help research funding and other care-giving families that have a loved one who is afflicted with this terrible, degenerative disease.”

Now, 21 years after the Alzheimer’s disease changed his life, the Alzheimer’s Association, Connecticut Chapter, is honoring John and his wife, Donna, for helping change the lives of others. Through their passion and successful fundraising efforts, John has ridden his bike 14,500 miles across our country, and has raised over $250,000 (a quarter of a million) for the Alzheimer’s Association. These funds will assist families who are facing the daily challenges of Alzheimer’s disease.

After hearing from a fellow member of the Pequot Cyclists, in 1998, about his recent long distance bike ride, John’s interest was piqued and he decided to “do it”. In July of 1999, John set out on his first long distance ride, all while raising funds and awareness for the Alzheimer’s Association.

John rode from Erie, Penn. to Portsmouth, N.H., covering a total distance of 620 miles. One week before the ride, John surpassed his goal of raising $5,000. It was so successful that he had to continue. Sixteen years later, John has ridden down the East Coast, West Coast, Mississippi River Valley, cross-country twice, and down the Shenandoah Valley, interacting and sharing his story with the people whom he meets along the way.

Though John primarily rides alone, he has a constant companion in the form of a purple bear, who always rides with him. This bear was created by the family of a woman named Vivian, who passed away from Alzheimer’s disease. After seeing the Vivian bear at an Alzheimer’s Association fundraiser, John felt a connection because Vivian is John’s mother’s middle name.

“These rides are in her [Ruth Vivian Clark’s] memory and the memory of all of those who have suffered from the disease and the families that have to deal with it,” John said.
This year is John’s final year of riding his bike for Alzheimer’s, but the passion and support that he and his wife have for the Alzheimer’s Association continues. John is determined to continue his fundraising tradition by offering a New Cycling Mentorship Program. He will be transitioning to the role of being a mentor and motivator for those who are interested in continuing this journey.
The Alzheimer’s Association, Connecticut Chapter will be accepting applications from those interested in rider leadership roles which will continue John’s vision of helping those facing this disease every day.
Beginning on August 17 there will be a seven-day tour of Southeastern Connecticut. Each day will consist of a 67 kilometer, 41 mile, ride that symbolizes the statistic where every 67 seconds someone in the United States, is diagnosed with Alzheimer’s disease. The tour itinerary is posted on John’s web site.
A celebration will be held in John and Donna Clark’s honor on Saturday, August 23, at the Norwich Alzheimer’s Association office. It is at this celebration that the Association will recognize the continued commitment and dedication that the Clark’s have shown in hopes of helping the Alzheimer’s Association and those living with the challenges that this disease presents. This event will also mark the beginning of the new Cycling Mentorship Program.
All of John’s rides are chronicled on his website. The site is both interesting and informative. It contains a blog, photos and some movies for every day, and has many links to professional Alzheimer’s websites where people can go to find information about the disease. For more information on joining John Clark on his upcoming rides and sixteen-year fundraising journey please visit, http://www.rideforalzheimers.com/.

Special thanks to Molly Sweeney, 2014 Summer Communications Intern for this post.

The END of Alzheimer’s Starts With Me:

Teresa Norris is the Author of: Almost Home — How I Lost My Mother Without Losing My Mind: A Faith Journey. She has been involved with the Alzheimer’s Association since 2011 and is currently a member of the Walk to End Alzheimer’s New London Committee.  The following post is from her blog and website www.teresamnorris.com

 

Teresa-Podium_FacebookRecently an interesting report informed us that more people die from Alzheimer’s than previously believed. Significantly more: closer to 500,000 than the 85,000 now listed. Since I’ve been giving presentations on my experience through my book, Almost Home, I’ve run into people who weren’t even aware that Alzheimer’s is fatal. I think the disconnect is understandable. Most people who die from Alzheimer’s are old, and secondary conditions like pneumonia can be claimed as the official “cause of death.” What’s sometimes (well, apparently often) overlooked is that the pneumonia was caused by the person more or less forgetting how to breathe and swallow properly! The ravages of early-onset Alzheimer’s are clearer and more disturbing, with people dying in their fifties and sixties, not eighties and nineties.
So what’s the point in clarifying this “cause of death” issue? Not surprisingly it may come down to money, specifically seeking money for research. With Alzheimer’s disease often dismissed as the price we pay for living long and seeing that it lags behind other diseases that claim lives (it’s number 6 on that hit parade) getting people to pay attention and support funding hasn’t been easy.
What needs to be stressed is that it’s the only cause of death that isn’t doing down and there is no cure – yet. I wonder if another unique attribute can be attached? How about this – is Alzheimer’s the most painful disease for the families of those afflicted? I wouldn’t want to be in a debate on that question, nor would I want to have to experience other situations to see if indeed I hurt more losing a loved one to cancer. I can only reflect on my own experience. And echo those of many, many others I’ve heard first-hand.
Letting go of someone you love in this long good-bye is brutal. The grieving process is dragged out and the person you knew and loved becomes increasingly remote. The helplessness you feel is hemmed in with guilt as you try to do something to stop the process or change the situation and you just can’t.
Nasty. Painful. And not going away. Yet.
I was among those people stunned by the new numbers of deaths due to Alzheimer’s. Stunned yet somehow not really surprised. In a way we may feel more hopeful because such news brings awareness and awareness brings action and action brings hope. We can do something – donate money, time and effort into spreading awareness and supporting funds for research.
Speaking of memory, don’t forget the support for the thousands of caregivers. Visit the Alzheimer’s Association Connecticut Chapter’s website anytime at www.alz.org/ct for resources or call the 24 hour helpline at 800-272-3900.

My Reason to Hope

Christine DiLeone shared her story during our recent Reason to Hope Breakfast event on May 7th, 2014

Christine Picture 3

THANK YOU for taking time out of your hectic schedule to join us today, for ‘A Reason to HOPE’. My name is Christine Dileone and I have my own personal ‘reason to HOPE’ and I know you do too!  I’m honored to be part of this committee and speaking to you today!

My connection with the Alzheimer’s Association Connecticut Chapter started about 4 years ago, about two years after my mom was diagnosed. My mom  grew up on a farm in upstate NY, and is one of 15 children, 6 of them  have or have had Alzheimer’s.

I now have 3 family members in the same long term care facility with it, including my mom. The past six years have really been a long goodbye for me and my family, saying goodbye to different parts of my mom’s personality /our relationship, and learning to accept this new mom, and for my kids this new grandma. My mother thought nothing of getting in her car and driving to CT to bring my boys to Toys R us and go shopping with me. This woman, 30 years older than me, could out shop me any day!! I remember thinking at the time, how much shopping can one person do? Now I long for those days again. She was the first one my kids called when something exciting happened to them. She was the grandma who came on every Disney vacation with us.

Mom was a successful real estate broker with several sales agents working for her. Then she started missing appointments with clients, and forgetting important information on legal documents and her sales agents started calling me telling me something was wrong. Having had an aunts older than my mom with Alzheimer’s we were realizing our worst fears were coming true. My brothers and I were able to talk her into selling her business and working part time for another realtor. Which she did, but that was short lived. Bills were not getting paid and trips to the grocery store showed her buying the same foods over and over. A decision was then made to sell her home and move her in with me here in CT. The early stages of this disease brought personality changes such as paranoia and delusions. She would call her family in NY and tell them we don’t want her here. I would be talking on the phone and she would come up to me and say “who are you talking to”?  Though I was able to have her evaluated by a psychiatrist specializing in Alzheimer’s and treated appropriately, I was alsoin Graduate school, working and raising 2 boys, who were 15 & 10 at the time.

I made a very painful decision to move her back to NY where most of her family remains, thinking the familiar surroundings would benefit her, and into an assisted living facility,  I knew I couldn’t give her what she needed, I thought I could, I thought, I am the nurse in the family, I can do this. I couldn’t. I am now a long distance caregiver.    She was able to be in assisted living for  three years and then wandering episodes forced us to move her  into long term care in April of last year. The last episode, she was found outside the facility with some of her belongings and told staff she was going home. Mom is actually in the same room with one of her sisters, who is at the end stages of the disease,  She doesn’t remember this is her sister.  Thankfully she still remembers who her children are and when we speak on the phone every night she doesn’t forget to ask how my kids are and tells me to give them a hug and a kiss and every once in a while she still calls me tootsie. Those are the things I hold onto now.  I am frequently  asked  “how is your mom”? and I am not sure how to answer………she is pleasantly confused, she is ok, She has no short term memory and very little long term memory, I’m not sure what to say……….what I would love to say….. she is recovery nicely from the Alzheimer’s.

In spite of how painful the last six years have been, I still have hope.  In spite of how from the depths of my soul, I miss my mom, I still have hope.

Hope that more money will be put into research to find a cure because Quite frankly, this is not a “she got better and we lived happily ever after” story. There is no cure.

I have Hope that I may have bettertreatment options if I develop Alzheimer’s.

And even more Hope that my children will be spared.

As a parish nurse in my faith community, I utilized the educational resources of the Alzheimer’sAssociation to teach our members about the signs of this disease as we have a growing elderly population. at the time, I  was also teaching in an associate degree RN program  at Capital Community College and one day during clinical in an acute care facility, I had an  “Aha” moment. Two nursing students were in a patient’s room, who had Alzheimer’s, this individual  was very agitated, saying she wanted to go home and was trying to get out of her bed. As I stood by the doorway and watched, I saw the students looking like a deer in headlights, not knowing what to do or say. After modeling appropriate communication techniques with this patient and calming her,  I realized our nursing students are not  learning these valuable communication techniques. As I watched other health care providers work with individuals who have Alzheimer’s, I understood that more needed to be done. These individuals are not crazy, they are not out of their minds, they are human beings with an illness and deserve to be treated with respect and dignity, like we would all want to be treated.  With more than 5 million people in the US living with Alzheimer’s disease, 72,000 here in Connecticut, I realized I needed to do my part to improve care.   I again reached out to the Alzheimer’s Association and again, Regional Director, Patty O’Brian came, to speak to my  students.  The response has been positive and we have continued inviting Patty to speak to our UCONN, where I now teach, nursing students every semester since.

This is done in the acute care facility where we have clinical and  This semester , over 3 presentations, we had over 70 hospital staff educated…from nurse managers to engineers, as well nursing students from both UCONN and Capital Community College  on Alzheimer’s disease and important communication techniques.

I have connected Patty with the professor who teaches the theory of Alzheimer’s  and she has spoken to students at the Storrs campus.  I  was recently trained by the Alzheimer’s Association as a support group facilitator and have begun monthly groups in South Windsor and have participated in the Walk to End Alzheimer’s  for 4 years now at the Enfield location and have involved my faith community in it as well. In 2012 we received an award for the largest team.

I am so thankful that I found the Alzheimer’s Association and continue to have reasons to hope… for my family and to those of you, in this room today who have someone in your life who is touched by this disease! The Alzheimer’s Association continues to have my support!  The education, support, and resources I have received provide me with a reason to hope. The passion of the staff at the Connecticut chapter keeps me passionate and hopeful and I thank you all for the difference you have made in my journey………

The Alzheimer’s Association receives no government funding and these services are provided free of charge to family caregivers and I am honored today to share my story and ask you to support such a vitally important organization whose mission is to provide care and support for all affected by Alzheimer’s disease.

The ABC’s of Alzheimer’s and Dementia for Caregivers

Chicken Soup for the Soul: Living with Alzheimer’s & Other DementiasKristen Cusato

The Alzheimer’s Association has partnered with the publishers of Chicken Soup for the Soul to produce a new book – Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias. It includes stories – many from Alzheimer’s Association volunteers, donors and staff – that represent a wide range of experiences in living with and caring for someone with Alzheimer’s. All royalties from the book, on sale April 22, will benefit the Alzheimer’s Association. Pictured is Kristen Cusato, former Southwest Regional Director for the Alzheimer’s Association Connecticut Chapter, who shares story in our blog post The ABC’s of Alzheimer’s and Dementia.  

Approach with a positive attitude, from the front with a smile. Address them by name.

Breathe. Take a deep breath before the visit/encounter. They can read your essence and body language before they can comprehend what you are saying.

Cue them. Instead of “Do you want to put on your sweater?” Put yours on, and offer help with hers.

Dementia is the umbrella term. Alzheimer’s, Lewy Body, Vascular, & Frontaltemporal are types of dementia. Alzheimer’s is the most common type, diagnosed 70% of the time.

Every day is a new day. A bad day yesterday does not mean a bad day today. Take it one day at a time.

Follow their lead. If they want to tell the same story or wash the same dish, over and over again. Let them.

Give them purpose. Ask their advice, give them a task. Even if they do it wrong, they’ll feel worthy because they accomplished something.

Honor who they are and what they were. They are a person who had a good, productive life even though they may not be able to feed or dress themselves anymore.

Living with Alzheimer's & Other Dementias front (2)Investigate. If they are agitated, they may not be able to tell you why. Are they hungry or thirsty? Tired? Do they have to go to the bathroom?

Joy. Revel in the joyful moments with your person with dementia. Let those moments fill you up.

Keep eye contact. It establishes trust and helps you make a connection.

Love. Give a lot of love to your person. It makes them feel safe and cared for.

Mistakes. You will make them. You will say and do the wrong things. Forgive yourself, caregiving is a very hard job.

Never argue with the person with dementia. It agitates them and you and makes everything harder.

Oxygen. Take your oxygen first. Like on an airplane. Care for yourself. If you are not a strong, healthy caregiver, you cannot be strong for your loved one.

Practice patience. It could take someone 20 seconds to understand your question and come up with an answer.

Quiet. TV, radio, several conversations at once make it hard for the person to concentrate. Take them to a quiet place to visit or connect.

Redirect. If they are frustrated or upset, change the topic or environment, or suggest an activity they like to do, or offer some tea or ice cream.

Simple. Keep sentences simple. Their brain processes differently and too many details will overwhelm them.

Talk about the old days, things from their past. As their short term memories go away, the long term memories remain.

Use fiblets. “I have to pick up my daughter from school!” says the 80 year old. “Your daughter called, she is staying late to play soccer. Let’s go in here and listen to some music…” Tell a little story and then redirect.

Validate their feelings and thoughts. “Yes, it is Tuesday (even if it’s Friday) but today we are going to do a Friday activity.” Goes along with *not* telling them they are wrong.

Walk in their shoes. Just as you do not want them to be sick, they don’t want this disease. Realize they are frustrated too, because they can’t do things or remember things like they used to.

eXercise. Go for a walk with your person with dementia. Or do chair exercises. Getting the blood flowing is good for everyone.

You are not alone. The Alzheimer’s Association has many resources for you. Our 24 hour helpline 1-800-272-3900, support groups, caregiving courses. Reach out.

Zzzz’s. Let them rest. This disease is exhausting. For both of you. You rest too.

 

Help is Available

Help is Available

By Jessica Higgins

 

Perhaps this is the third month in a row that you’ve forgotten to pay your bills on time. It seems to keep slipping your mind.  Maybe your family and friends are starting to worry about you. They think you’re showing signs of Alzheimer’s, but aren’t sure. 

 

Who can you turn to for help?  The Alzheimer’s Association 24/7 Helpline to assist you.

p1The Helpline is open to everyone, whether you have Alzheimer’s or if you are a caregiver or professional.  Its twenty-four hour availability allows people to call with any type of question at all hours of the day and night.  Last year, the Alzheimer’s Association Connecticut Chapter provided information and referral, care consultation services and resources for respite care to more than 4000 people statewide. 

 

You can call with questions including but not limited to clinical trials, support and caregiver groups, courses for people with Alzheimer’s, or respite funding. The trained Helpline professionals will provide with as much information as possible.

 

The Helpline number is not the only way you can communicate with the staff. In addition to phone calls, the staff can send you information through postal mail or email, as well as through face-to-face appointments. A language line is also an option for communication: if you need to talk with someone who speaks Spanish, the helpline can call a translator for you.  The Helpline is available in 140 languages. 

 

Helpline staff has become involved in health fairs to promote their services and information.  Jennifer Labrie, Helpline Coordinator of Alzheimer’s Association Connecticut Chapter says that the health fairs “create awareness about the disease and connect people to our services.”

 

The Alzheimer’s Association 24/7 Helpline 800-272-3900 will always be there to answer any of your questions, no matter what time you ask. Don’t hesitate to ask a question…

 

Note: Our Helpline staff does not perform diagnosis. If you or someone you care for is having memory problems, please see your doctor.

 

 

Keywords: caregivers, helpline, Alzheimer’s disease, dementia, support

Alzheimer’s Association Connecticut Chapter Support Group Leader Spotlight: Eugene Conrad

When Eugene Conrad’s wife was diagnosed with Alzheimer’s disease, he decided to find out as much as he possibly could about the disease, and what he could expect to face caring for his wife in the years ahead. A resident of Stamford, he called the 24/7 helpline of the Connecticut Chapter of the Alzheimer’s Association (800-272-3900) and learned that there were support groups where he would meet others like himself.

Conrad-Gene-Web            He soon realized that it was harder for men to know what to do, more difficult for men to speak up and share feelings.  With women in the more traditional role as caregivers he saw a need in the community for a forum that focused on the unique needs of male caregivers.  Women have best friends to talk to; many men consider it a weakness to admit they have problems.  It’s a well-known fact that most caregivers are women: Of the 43.5 million adults who care for an older family member or friend, nearly two out of three are female, according to a 2010 report published by AARP and the National Alliance for Caregiving (NAC).

Faced with his own situation, Gene Conrad decided he would get some support group leader training from the Alzheimer’s Association CT Chapter and form a men’s support group, where men would feel comfortable opening up to other men, where sensitive subjects like resentment, frustration, and yes, sex, could be discussed. “We call it ‘enforced celibacy’ and it’s something only a men’s group can handle,” Gene says.

His first group in Stamford in 2010 started with three men. There are now two different groups of seven men each that meet twice monthly. “It makes a tremendous difference,” Gene says. “We talk, we share, we even cry.  My job is to listen and encourage. The relief that results is therapeutic and energizing.  It puts a man back in control, instead of being overwhelmed by new responsibilities and the inevitable changes they must learn to accept in their wives as their Alzheimer’s disease progresses. “

There are men in these groups from their 60’s to their 90’s. The 60-year old cares for his wife who has early onset Alzheimer’s disease.  Gene meets with the men before they join, to find out about their issues.

“I have to sense that they really want to do this, that they won’t drop out after one or two sessions, though sometimes that does happen.”

Gene Conrad is writing a book about his experiences. “This is a growing trend all over the country. Originally, there were only three all-men’s support groups, my two in Stamford and one in Phoenix. Now, just a few years later, there are thirty-three Alzheimer’s Association sponsored all-male caregiver support groups in the United States.

“When someone in the group is faced with a really difficult episode, the whole group concentrates on his dilemma. Each man in the group is encouraged to describe what’s happening, with all the details, before any comments or suggestions are made by the others. It’s not necessarily the advice that’s most important; it’s the idea that you’re being listened to, by men who are in the same boat.”

Gene says he will always be grateful to the CT Chapter of the Alzheimer’s Association for the leadership training they’ve given him. “My wife is going to an adult day center and life has much improved. As far as I can see, the whole presence of caregiver support is a blessing.”

For more information on support groups, contact the Alzheimer’s Association 24 hour helpline at 800-272-3900.

Holidays and Alzheimer’s Families

The holidays are a time when family and friends often come together. But for families living with Alzheimer’s and other dementias, the holidays can be challenging. Take a deep breath.  With some planning and adjusted expectations, your celebrations can still be happy, memorable occasions.

 

Familiarize others with the situation

The holidays are full of emotions, so it can help to let guests know what to expect before they arrive.

If the person is in the early stages of Alzheimer’s, relatives and friends might not notice any changes. But the person with dementia may have trouble following conversation or tend to repeat him- or herself.  Family can photo_resolving_family_conflicthelp with communication by being patient, not interrupting or correcting, and giving the person time to finish his or her thoughts.

If the person is in the middle or late stages of Alzheimer’s, there may be significant changes in cognitive abilities since the last time an out-of-town friend or relative has visited.  These changes can be hard to accept. Make sure visitors understand that changes in behavior and memory are caused by the disease and not the person.

You may find this easier to share changes in a letter or email that can be sent to multiple recipients. Here are some examples:

>> “I’m writing to let you know how things are going at our house. While we’re looking forward to your visit, we thought it might be helpful if you understood our current situation before you arrive.

>> “You may notice that ___ has changed since you last saw him/her. Among the changes you may notice are ___.

>> “Because ___ sometimes has problems remembering and thinking clearly, his/her behavior is a little unpredictable.

>> “Please understand that ___ may not remember who you are and may confuse you with someone else. Please don’t feel offended by this. He/she appreciates your being with us and so do I.”

For more ideas on how to let others know about changes in your loved one, join ALZConnected, our online support community where caregivers like you share tips on what has worked for them.

 

Adjust expectations

  • Call a meeting to discuss upcoming plans.
    The stress of caregiving responsibilities layered with holiday traditions can take a toll. Invite family and friends to a face-to-face meeting, or if geography is an obstacle, set up a telephone conference call. Make sure everyone understands your caregiving situation and has realistic expectations about what you can do. Be honest about any limitations or needs, such as keeping a daily routine.
  • Be good to yourself.
    Give yourself permission to do only what you can reasonably manage. If you’ve always invited 15 to 20 people to your home, consider paring it down to a few guests for a simple meal. Let others contribute. Have a potluck dinner or ask them to host at their home. You also may want to consider breaking large gatherings up into smaller visits of two or three people at a time to keep the person with Alzheimer’s and yourself from getting overtired.
  • Do a variation on a theme.
    If evening confusion and agitation are a problem, consider changing a holiday dinner into a holiday lunch or brunch. If you do keep the celebration at night, keep the room well-lit and try to avoid any known triggers.

 


Involve the person with dementia737499_10200274665097712_527145910_o

  • Build on past traditions and memories.
  • Focus on activities that are meaningful to the person with dementia. Your family member may find comfort in singing old holiday songs or looking through old photo albums.
  • Involve the person in holiday preparation.
  • As the person’s abilities allow, invite him or her to help you prepare food, wrap packages, help decorate or set the table. This could be as simple as having the person measure an ingredient or hand decorations to you as you put them up. (Be careful with decoration choices. Blinking lights may confuse or scare a person with dementia, and decorations that look like food could be mistaken as edible.)
  • Maintain a normal routine.
  • Sticking to the person’s normal routine will help keep the holidays from becoming disruptive or confusing. Plan time for breaks and rest.

 

 

Adapt gift giving

  • Encourage safe and useful gifts for the person with dementia.
    Diminishing capacity may make some gifts unusable or even dangerous to a person with dementia. If someone asks for gift ideas, suggest items the person with dementia needs or can easily enjoy. Ideas include: an identification bracelet (available through MedicAlert® + Alzheimer’s Association Safe Return®), comfortable clothing, audiotapes of favorite music, videos and photo albums.
  • Put respite care on your wish list.
    If friends or family ask what you want for a gift, suggest a gift certificate or something that will help you take care of yourself as you care for your loved one. This could be a cleaning or household chore service, an offer to provide respite care, or something that provides you with a bit of rest and relaxation.

 

When the person lives in a care facility

735916_10200274671977884_1628809027_o

A holiday is still a holiday whether it is celebrated at home or at a care facility. Here are some ways to celebrate together:

  • Consider joining your loved one in any facility-planned holiday activities
  • Bring a favorite holiday food to share
  • Sing holiday songs and ask if other residents can join in
  • Read a favorite holiday story or poem out loud

Visiting a Friend or Loved One in a Residential Care Facility

nursinghomes

nursinghomesBy Mary Grace Peak

In my last post, I discussed the Do’s and Don’ts on the course of action once a friend or loved one receives the dreaded Alzheimer’s diagnosis. http://0372fc6.netsolhost.com/WordPress/2013/09/10/dos-and-donts-of-the-newly-diagnosed/

It is a long and exhausting journey for the patient and caregiver from diagnosis to the decision to place one in a residential care facility.  But once the decision has been made and your loved one has been placed in a care facility you feel good about, it is important to visit your loved one as much as you can.  Here are some tips on what to do when visiting:

 

  • Upon arrival, enter the room with a big and welcoming smile.  This will give the patient an immediate sense of familiarity and comfort.  Even if they do not recognize you immediately, by entering the room in a comforting manner will put them at ease instead of triggering fear and insecurity within the patient.
  • Go outside.  There are countless studies that indicate the benefits of vitamin d (link to http://www.huffingtonpost.com/2012/03/08/vitamin-d-alzheimers-amyloid-beta-plaque-protein_n_1326952.html) lead to general health and a sense of well-being.  It may even help ward off Alzheimer’s. So taking your loved one out for a walk to soak up a good dose of vitamin d and fresh air is good for their health and will help lift everyone’s spirits in the process.
  • Go for a walk together around the facility.  Comment how lovely the facility is and try to meet and interact with the other active residents.  With you as their guide, this can help the patient feel better and more secure about their environment.
  • Reminisce by looking at photos, listening to music, and talking about past family events or milestones that meant a great deal to the family member. While they may not remember every detail, it will still give them a sense of love, familiarity, and comfort.
  • Give them a gentle back rub, a manicure, or comb their hair.  Also, be sure to give lots of hugs!
  • Talk to residential care staff and do not be afraid to ask them lots of question about how your loved one is doing.  Here are some examples:  What is their daily schedule like?  How well are they sleeping and eating?  Does the resident engage in any residential activities?  When was the last time or how frequently is the resident bathed?  Any concerns I should have?

Visiting a friend or loved one in a residential care facility can be very difficult, especially for the visitor who is afraid or saddened to see a person they love suffering from this illness. Yet visiting a loved one regularly can bring peace, happiness, and maintain a sense of connectedness to that loved one.  A visit does not have to be long.  It can range anywhere from 15 minutes to an all day visit.  Therefore, it is important not to rush through a visit or talk about how guilty you feel for not visiting enough.  The patient will not remember the length of the visit or the number of times you come to see them.  However, they will remember how your visit made them feel for a long, long time.