Hello, readers! I am excited to share a post with you that was written by a guest contributor. This caregiver’s journey toward getting a diagnosis for her husband was quite the roller coaster and took many twists and turns. Please read on to learn more about her and her spouse’s experience, and her advice for other caregivers.
It all began in August of 2016, when after answering the same question for the fifth time in as many days to my husband of 26 years I decided to keep track of things I thought might not be normal. In mid-October I sat my husband down and told him I was going to go to with him to his annual check-up in November. He asked “Why?”. I simply stated that I had noticed some things that concerned me about his cognitive state. He looked puzzled but agreed.
On November 22, 2016, with a little over two pages of notes and the Alzheimer’s Association’s Preparing for Your Doctor’s Visit sheet in hand, we were ready for our visit. Dr. H. came in after reviewing the documents, sat down across from us, and said he would like to do some testing. Dr. H. administered a mental status exam, and unfortunately, the test results indicated that my husband was cognitively impaired. With a series of blood tests and a CT scan scheduled to take place before our next appointment in December, we left the doctor’s office with our heads swimming! I asked my husband, through tears, if he was mad at me. I told him it was ok to be mad at me. This is not what I wanted, but I couldn’t stand by with my head in the sand and pretend that nothing was wrong!
During this time, I was watching my husband go to work and come home with nothing left to give because he was trying so hard to keep it together at work. I decided that we needed some advice so I called the Alzheimer’s Association Helpline on a snow day off from school. They helped to talk me through the situation and even talked to my husband
As roller coasters do, ours was about to take a plunge down a steep hill! At our neurology appointment in April, we were wretched about the tracks as Dr. R. told us he feels certain that Jack does NOT have Alzheimer’s but another form of dementia, possibly Frontotemporal Dementia (FTD). Dr. R. explained that my husband’s behavioral changes and his age were indicative of FTD.
One of the hardest things about dementia and especially the one we may be facing is:
That family and friends don’t understand he looks healthy and can hide it well for short periods of time.
They don’t see this man sobbing because he’s afraid he’s going to forget you and he does not want to be alone going through this.
They don’t see the fear in his eyes when he can’t figure out how to turn the shower off.
They don’t see the agitation that he can’t explain.
They don’t see how much you just want your old life back.
They don’t see that you will go to the ends of the earth for this man to keep him safe and at home with you.
They don’t understand how isolating it is for us both.
I know that one day this roller coaster ride will be over but for now it’s the ride we’re on. And it’s definitely not one to be on alone! So friends, if you are on a similar roller coaster ride, pick up that phone and call for help! You are not alone! Call the Alzheimer’s Association 24/7 Helpline at 1.800.272.3900 for support.
It’s that time of year again! The tulips and daffodils are in bloom, the sun is shining, and the weather is warming up to beautiful breezy temperatures. With all of the freshness of blooming nature, why not use this season to bring freshness into your home?
Not only does Spring Cleaning give you an excuse to scrub those areas that get little attention during the closed-in cloudy days of winter, but it can also reduce stress. Clutter and mess can be especially anxiety provoking for people with dementia as it can result in over stimulation. With too much clutter, people can be distracted by their surroundings, confused by the number of objects that they need to ascribe meaning to, and clutter can be a signal that there is work to be done. Additionally, clutter in hallways and walkways can be a fall risk. So, while working to clean and de-clutter your home, why not engage your loved ones in helping?
Ways to involve people with dementia in spring cleaning:
Folding, hanging up, and putting away laundry
Washing dishes
Wiping down tables and countertops
Dusting
Sweeping
Sorting through old magazines
Additional Tips:
Break down larger tasks into simpler individual steps
Encourage people to be as engaged as their skill set allows
When sorting through or dusting pictures, magazines, etc., use this opportunity to reminisce. Just be sure to avoid saying, “Remember when…?”
Take breaks when necessary. People with dementia often respond more readily to your emotions than your words, so be careful to not convey exasperation, anxiety or anger with your body language. Try to view these activities as fun and energizing!
Engage people in cleaning tasks that they’ve done frequently or enjoyed in the past.
Always pay attention to any safety hazards that could come up while cleaning.
Remember that the value is in the process rather than the result. If your loved one’s task isn’t finished exactly the way you like it, that’s OK. Use these activities as a chance to engage physically, mentally and socially with your loved one and worry about the results later.
According to the Alzheimer’s Association, as many as 6 in 10 people with dementia will wander at some point during their journey with the disease. This behavior becomes dangerous when an individual with Alzheimer’s becomes lost and disoriented. The person may no longer remember their address, locations they were once familiar with, and possibly their name. The following products are designed to keep your loved one safe in case a wandering incident does occur.
MedicAlert + Alzheimer’s Association Safe Return®
The Alzheimer’s Association MedicAlert + Safe Return includes:
A personalized identification bracelet for the person with dementia to wear
A personalized emergency card for their wallet, on the card is their member identification number and the emergency toll-free number
24-hour emergency response service
Optional identification bracelet available for the caregiver to wear, which alerts anyone in case of an emergency that this person is caring for an individual with a MedicAlert + Safe Return services
Has a safety lock so that it cannot be removed by your loved one wearing the watch
Can locate your loved one by simply pressing a button located on your receiver and their location and position will appear on a map located on your receiver
For more information: Visit www.keruve.com/ or call 530-303-8893
The Alzheimer’s Association will soon be opening registration for the 2017 Advocacy Forum, and we would like to invite you to join us. The Alzheimer’s Association’s Advocacy Forum is a unique opportunity for Alzheimer’s advocates from across the country to gather in Washington, D.C. to directly appeal to their members of Congress about Alzheimer’s disease. Caregivers, persons with the disease, and those that have lost a loved one to Alzheimer’s receive training and embark on Capitol Hill to tell their story and ask for policy change to support our vision of a world without Alzheimer’s. In 2016, over 1,100 people from across the country (24 from Michigan) participated in this event.
Participants of past Forums have raved about this event as an empowering experience. After the Forum advocates feel charged up and ready to tell their story and make change happen. The helpless feeling that often accompanies Alzheimer’s for many is changed into a feeling of power and an opportunity to improve the lives of others.
The Alzheimer’s Association’s Advocacy Forum is also highly impactful for Members of Congress. In our experience, legislators listen intently when their constituents travel to our nation’s capitol to speak with them.
Alzheimer’s is a triple threat, with soaring prevalence, lack of treatment and enormous costs that no one can afford. If we’re going to address this triple threat, action must be taken by all levels of the government. Attending the Advocacy Forum is one way to take action, and we’d love to have you join us!
About the Alzheimer’s Association’s Advocacy Forum
The 2017 Alzheimer’s Association’s Advocacy Forum will take place March 27-29, 2017 at the Marriott Wardman Park, Washington, D. C. To register and for event details like schedule, location, travel, and more, visit http://www.alz.org/forum or contact Lindsay Brieschke at lbrieschke@alz.org
Early bird registration for our 5th Annual Metro Detroit Fall Conference “A Meaningful Life with Alzheimer’s Disease”, done in collaboration with Wayne State University’s Institute of Gerontology, is now open! The conference will bring together healthcare professionals, caregivers, family members, and individuals living with the early stages of memory loss on Friday, November 18th at Schoolcraft College’s VisTaTech Center in Livonia. Registration includes an entry to the conference, breakfast, lunch, as well as five continuing education credits for professionals.
We are pleased to announce this year’s keynote speaker will be Beth A. D. Nolan, Ph.D.
Dr. Nolan serves as a Lead Mentor Trainer and Coach and directs research for Positive Approach to Care (PAC). Formerly an Assistant Professor at the University of Pittsburgh’s Graduate School of Public Health, Dr. Nolan received her Ph.D. in applied gerontology. She has worked with a variety of human services agencies to implement evidence-based programs for behavioral health, criminal justice, medicine, and senior living, and now works to help move caregivers to become carepartners.
Conference attendees will gain powerful insight into the true experiences of living with dementia as well as practical applications for implementing person driven care and methods to enhance quality of life. You will hear from individuals whose lives have been personally affected by this disease, engage in interactive activities and discover new resources and tools to assist families through their dementia journey.
Clinical trials are essential to advancing Alzheimer’s disease research at a time when Alzheimer’s is reaching epidemic proportions. Through clinical studies conducted over the last 20 years, scientists have made tremendous strides in understanding how Alzheimer’s affects the brain. It is only through clinical studies that we will develop and test promising new strategies for treatment, prevention, diagnosis, and ultimately, a cure for Alzheimer’s disease.
To learn more about how to participate in clinical trial, watch the video below about TrialMatch (a free, clinical-trial matching service).
Have you ever thought about attending a support group but were reluctant to give it a try?
Support groups are a safe place to share feelings and experiences, and many people find them to be invaluable resources.
A support group is a place to:
Exchange practical information on caregiving problems and possible solutions
Talk through challenges and ways of coping
Share feelings, needs and concerns
Learn about resources available in your community
All of our support groups are facilitated by trained individuals. In addition to caregiver support groups, we also have support groups designed specifically for people in the early stages of Alzheimer’s. We are currently offering early stage support groups in Birmingham and Taylor (and soon, in Sterling Heights too!). To learn more or to register, please dial our 24/7 Helpline at 800-272-3900.
Want to find a Alzheimer’s Association support group near you? Click here. Prefer to get support online? Join AlzConnected, our online community.
Please join us for our 5th Annual Spring Conference “Safe and Secure: Approaching Safety in Dementia Care” in collaboration with the Michigan Alzheimer’s Disease Center. We invite healthcare professionals, caregivers, family members, and individuals living in the early stages of memory loss to be our guests at this educational conference taking place on Tuesday, March 29th from 8:00am-3:45pm at the Somerset Inn in Troy. Breakfast and lunch will be provided. Five Continuing Education Credits will be awarded to professionals.
As Alzheimer’s disease and other forms of dementia progress, one’s ability to make good decisions, exercise appropriate judgement, and maintain safety become impaired. Eventually, family and professional caregivers will assume responsibility for ensuring safety and promoting well-being. This conference will discuss various safety-related topics, such as managing medications, financial exploitation, and knowing when it is no longer safe to drive.
To learn more and to register, please visit http://www.alz.org/gmc. We hope to see you on March 29th! 🙂
I seriously cannot be the only person who has not done their holiday shopping yet…right? Well, if you’ve procrastinated like me, or if you have a few people still remaining on your gift list, consider an easy, do-it-yourself present that your person with dementia may enjoying helping you with. In searching the internet, I encountered dozens of potential ideas for this post, from diy christmas ornaments, to cookie recipes, to personalized coffee mugs and more. If you are reading this and not already familiar with Pinterest, let me just say….I LOVE Pinterest! I’m actually what you would call pin-sessed. Not only is Pining a fun (and addicting) past time, but there are a plethora of activity and recipe ideas which you and your person with Alzheimer’s may enjoy trying. Just saying!
So after doing my research, I finally settled on a “gifts in a jar” theme. These really appealed to me because of their versatility (did you know you can make so many different gifts in a jar??) and their easy execution. Chances are, you probably have many of the things needed for this activity already in your home.
In the example below, this diy gift in a jar contains a “fudgy brownie mix”. Honestly, who wouldn’t want to receive that as a present? Your person with dementia can assist in this activity by dumping in the different layers of ingredients, one at a time. This will probably be easiest if you offer guidance and supervision throughout the process. For instance, you could pre-measure the quantity of flour needed for the bottom, position a funnel over the mouth of the jar, then assist your person in pouring the flour in through the funnel. It may work best to repeat the process of pre-measuring, funnel, and guided assistance with the remaining layers. Of course, the amount of hands on supervision you provide will vary depending on what stage of the disease your person in living with. Your person may also enjoy nibbling on the chocolate chips (which are added to the jar last), or reminiscing about pleasant memories involving food and baking. Many older adults experience a great deal of fulfillment from sharing their stories with others, and it is important to offer opportunities which encourage this.
Below I’ve included the ingredient list for this gift in a jar, as well as recipe instructions for the recipient of this gift. For more details, please visit the SixFiguresUnder official website. Happy Holidays everyone! 🙂
Homemade Fudgy Brownie Mix
1 cup + 2 tbs flour
2/3 cup packed brown sugar
2/3 cup sugar
3/4 tsp salt
1 tsp baking powder
1/3 cup cocoa
1/2 cup chocolate chips
1/2 cup chopped walnuts (optional)
Instructions for Using Homemade Brownie Mix
Mix contents of the jar with:
2 eggs
1/4 cup water
2/3 cup oil
1 tsp vanilla
Pour into a greased 9″ square pan. Bake at 350 degrees for 35-40 minutes or until an inserted knife comes out clean.
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