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Archive for the ‘Advocate on Steroids for Caregiving’ Category

Memory Screenings – Proof The Public Wants To Know

Memory Screenings –

Proof The Public Wants To Know

healthstar_tv_2_Click Above To Watch

HealthStar provided 2,200 FREE memory screenings this year at the MN State Fair. People have mixed feelings about taking a memory screen. Fifty percent of the public told us they didn’t want to know even if they do have memory loss related to dementia and the other half that have been affected in some way by Alzheimer’s or dementia said they wished they would have known to get checked sooner and thanked us for being at the fair. One family in particular that had a memory screening during the fair decided to take our advice and have follow up with their physician after their mother scored poorly on the memory screen. Two days later, the daughter returned to our booth to thank us for being at the fair. She said, had we not been there, she never would have known her mother was having difficulties as it was not something that was discussed openly nor something she had detected on her own. This is very common among children with aging parents. During the two days after the screening, the daughter took her mother to the doctor and the doctor agreed further testing and screening was recommended. Both the daughter as well as the doctor were very glad they had taken the time to take the screening as the mother would now receive the appropriate care she needed. We had another gentleman stop by, who stated he had been having memory concerns for several months and every time he spoke to his family and co-workers about it they would pass it off as normal aging. After meeting with us, he realized the symptoms he described were in fact something he should talk with his doctor about. Before leaving, he thanked us for being at the fair and said he felt better now that he had someone that seemed to understand and validate what he had been experiencing and planned to schedule a doctor’s visit.

Face-to-face memory screenings average three minutes and consist of questions and tasks to assess memory. HealthStar (a locally owned home care agency) & the Alzheimer’s Foundation of America encourages screenings for adults with memory concerns, a family history of Alzheimer’s disease or those who want to check their memory now and have the baseline results for future comparison. Unfortunately, there’s a large gap in education. There are many reasons for memory loss that are treatable such as vitamin deficiency, thyroid issues, changes in medication, stress and many others to name a few. Once the public was made aware during our time at the fair that there might be a treatable cause, they were more at ease and we saw a big jump in the number of people deciding to take the memory screen. We want to raise public awareness and take the fear out of being screened. Early diagnosis and treatment can substantially help during early onset whereas treatment in later stages of the disease aren’t as beneficial.

70% of families diagnosed with Alzheimer’s or dementia keep their loved one at home until it’s time to move them into a nursing facility. For many with Alzheimer’s or dementia, they will spend several years at home under the care of a family member or other caregiver before the need to move to a higher level nursing facility is required. The behaviors that accompany this disease can be very overwhelming and many families do not have the financial means to cover some of the costs of care so they suffer through the journey alone and often alienated from friends and family that eventually pull away. Changes in healthcare, due to high prevalence of the disease, allow our nursing experts to provide training, education and non-pharmacologic behavior assistance in the home to families and caregivers, which is 100% covered by traditional Medicare and most insurance plans. The public as well as many healthcare professionals are not aware of this available resource.

It is even available to those under the age of 65, if they’ve been diagnosed by a doctor. Family and caregiver burnout rises dramatically when faced with this disease. We had a family member call a few weeks ago, who was completely at their wits end from trying to care for their loved one. When the family member called to ask for help the caregiver’s comment was, “I know I shouldn’t be saying this, but it would be so much easier if he wasn’t here anymore.” Some of the behaviors exhibited by a person with Alzheimer’s or dementia are: agitation, aggression, sundowning, sexual inappropriateness, wandering, hallucinations, repetitiveness, screaming, paranoia, and accusations of infidelity or family members stealing from them. These are very traumatizing behaviors for families who don’t know how to deal with them. The main reason for this is due to the fact that they haven’t been taught how to manage these behaviors at home or how to work with the disease instead of working against the disease. This is a very real problem that we often encounter and families don’t know where to turn to receive more help and available resources. After being in the home and working with the emotionally and physically drained family caregiver, she informed us that she had been dealing with this on her own for four years and had tried several resources but none were able to help in a way that supported her needs. She was extremely grateful and felt better equipped to continue caring for her loved one.

HealthStar uses the free memory screenings as a way to educate the public and provide families with lots of additional resources after a diagnosis. HealthStar also provides a free Memory Café which is a social group for families and the person diagnosed with Alzheimer’s or dementia. Families share their successes and challenges and gain much needed support. Our biggest concern is that the public isn’t aware this type of care is available for Alzheimer’s and dementia patients or that it is covered by insurance.

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For Additional Information on Dementia and Caregiving

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A Place Of Comfort

A Place Of Comfort

By: Michelle Remold

Fall is my favorite time of year. When I was little I liked fall because that’s when my birthday is, but now I love the changing leaves, pumpkins, the weather, pretty much everything about fall. The other day I was driving home from work and about fifteen minutes into my drive, I found myself entranced in the leaves, which led me to think about the last Halloween before my grandpa was in the nursing home. That year we had gone to a drive through haunted trail. I was about nine and the trail scared me. I crawled into my grandpa’s lap and eventually down to the floor board where I hid under his legs – don’t worry, he wasn’t driving. After we left the haunted trail, I spent the rest of the drive in my grandpa’s lap, where I felt safe.

Typically these memories make me smile and I don’t think any more about them, but this time it seemed to be different. The last month I have been really stressed – two jobs, working on grad school applications, papers, a surgery in my family, planning programs, a presentation, and overall things that just seem to come up. I felt like I needed time to catch my breath for a minute. I spent yesterday baking breads and pie all day, it was very relaxing. Today I did a presentation on Alzheimer’s in another town. As soon as I mentioned my grandpa while speaking, doubt and anxiety seemed to go away and the presentation went very well. As my mom and I drove home, I again was looking at the leaves and saw myself sitting in my grandpa’s lap driving home from that haunted trail. I have also noticed that everything I found to be overwhelming lately, seems to now to be minute.

I think that thinking about my grandpa lately was a reminder that I can do anything I put my mind to and what better reminder to get than to remember a place like sitting in my grandpa’s lap, a place of comfort.

???????????????????????????????Michelle graduated from the University of Northern Iowa with her Bachelor of Arts in Gerontology: Social Sciences and a minor in Family Studies. She is currently pursuing her Master’s degree in Aging Studies and Nursing Home Administration from Minnesota State University Mankato.

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Loss Repeated

Loss Repeated

mario_and_danielle_grad_l=pic_flash_of_lightThis past Friday we lost one of our precious family pets.  Mr. Mario in retrospect was the head of our household.  Although not the bread winner as the IRS would define head of household, he filled our souls and will be greatly missed.

mario_on_the_bedUnlike the relationship I had with my mother who died in February after a 30 year battle with dementia, Mario had not been feeling well on and off for the past three weeks, yet he always seemed to bounce back, prance around and get into mischief. He was always game.. even for the crazy outfits at Halloween and X-Mas!

mario xmas outfitAlthough both losses have been and will continue to be a struggle, it is amazing at the differences and yet similarities.  The love, joy and comfort each provided in their own was powerful.  Due to the fact that my Mother lived in a nursing home for may years, her energy and presence was not embedded in each and every routine we had as a family.

Mario would:

Waking me up two or three times a night to go outside to go potty… I can now sleep through the night.

Sleep with me starting out laying on top of me, then going under the covers until he was too hot and the routine repeated itself throughout the night… I can now sprawl out in my own bed not worrying about bothering Mario or rolling over on him.

Remind me if I forgot to give him his pills as I was rushing out the door… No longer do I have to worry I might forget his medicine.

Grab the toilet paper and run through the livingroom and up the stairs in delight when someone would forget to shut the bathroom door…  Now, bathroom doors can now be left open.

Put his tiny paws on the counter as he would stretch, trying hard to pretend he was not begging when food was being prepared… No longer do I have to gently tap them and tell him to get down.

Anxiously await by my feet as I can clean my make up off, hoping I would drop a facial wipe or Q tip as he had a fetish for paper… No longer do I have to worry I might step on him underway or drop something he should not get.

Bark fearlessly at anything outside and would protect us from anyone trying to enter our home…Now there is silence.

Greet each of us at the door when we came home or get nervous when he saw suitcase getting packed, wondering if he would be going with or not…  No more will I since the unconditional love Mr. Mario gave freely wanting to be close to us always.

The list is long of all the things that have change overnight.

Here is just a partial list of loving nic names we had for Mario, now to only be heard when reminiscing.

Littles, Stinky, Mitter Mitter, Baby Boy, Little one…

marke_and_mario_fixeddanielle and mario cuddling

He is not there to rub his neck against our feet or talk in his whiny bark when he wanted to play.  He no longer does he sit on our laps and cuddle as us as we work or relax, or nuzzle us when he wanted to be tucked under his blankets.  No longer does he lay across from us and just watch us or comfort us when we are down or celebrate with us when we are joyful.

 

mario up closeMario will not be here to greet my daughters first child, but I know he will be watching over her and protecting her with my parents from their glorious seats in heaven.mario standing chunkyAlthough the routines Mr. Mario affected and how he touched people he met, were different from my own Mother, they will both be missed equally for the rest of my life.  Each triggering tugs of pain over moments of joy now in the past, unable to have a future to create more.  Each has taught the true gift of unconditional love and its importance in this world.  Each has taught me the true meaning of compassion, the gift of just being present and valuing what you have in your life today, as it may be lost tomorrow.  Each has taught me the critical importance of treating all things well and lovingly.

Although this is a journey none of us willing wants to take, it is natural part of life and a road which can not be avoided.  In the days ahead I know I will have a hard time framing my loss in this fashion, but over time I pray to get better at it.  Right now my mind accepts this philosophy, but my heart and soul are still grieving wishing life had given us a bit more time together.

May each of you be strong enough to go

to unexpected heights to explore love.

mario_and_steve_on_roof_2

May you each be blessed to feel the pain of loss

as it is a true measure of the love you had. 

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Dementia Chats Recording on Dementia Friendly Websites and Service Dogs – Sept 23, 2014

Dementia Chats – Talk With Those Living and Dealing with Dementia
Click Above To Watch The Recorded Webinar

DC_HQ_062714_solidyellow2 color photosClick Above To Watch The Recording

This is an informal webinar where we have casual conversations about life with dementia.  Everyone is welcomed to join in.  We have no formal agenda, just go where our participates need to find answers and have discussions.  Today we discussed “Dementia Friendly Websites and Dementia Dogs.”

Featuring One of Our Experts That Actually Has Dementia

harry_urbanHarry Urban , Founder of “Forget Me Not,” a closed support group on Facebook for those with dementia, their care partners, professionals and advocates.

 Dementia Chats Hosts Sivlershpere_interview_july_2014__w_loriLori La Bey, Founder of Alzheimer’s Speaks is also the creator and host of Dementia Chats. She facilitates the group and asks our experts living with dementia questions and pull participants into the conversation to get their questions answered and their comments heard. Lori is a professional speaker and trainer on dementia and caregiving.   Her mother has struggled with dementia for over 30 years and she is now in her end stages of the disease.

For more information on Dementia and Caregiving
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Join Dementia Chats & Talk With Those Who Have Dementia

Join Dementia Chats &

Talk With Those Who Have Dementia

DC_HQ_062714_solidyellow2 color photosClick Above To Enter The FREE Webinar

We start at 3pm EST, 2pm CST, 1pm MST, 12pm PST and 8pm London

This is an informal webinar where we have casual conversations about life with dementia.  Everyone is welcomed to join in.  We have no formal agenda, just go where our participates need to find answers and have discussions.

Our Experts Actually Have Dementia

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Harry Urban , Founder of “Forget Me Not,” a closed support group on Facebook for those with dementia, their care partners, professionals and advocates.

Driving Steve Ponath

 

 

 

 

 

 

 

 

 

 

Steve Ponath , was diagnosed with EOAD in 2011. He has become an advocate for those who can’t speak out about the disease. It’s time to bring awareness to everyone of what this disease does to not only the patient, but to the caregiver’s and loved ones who are on this journey with us.

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Dena Dotson , was diagnosed with Lewy Body with probable Alzheimer’s at age 47 2011. She is working hard to decrease the stigma attached with dementia.

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Michael Ellenbogen , is 54 years old. His career was in Information Technology, where he was a high level manager. Michael was diagnosed with Alzheimer’s Disease at the age of 49. He is no longer able to work. Michael now spend my time trying to increase awareness of this disease, and work to increase funding for research. He just finished writing his book outlining my experience with Alzheimer’s.

Dementia Chats Hosts

Sivlershpere_interview_july_2014__w_lori

 

 

 

 

 

 

 

 

 

Lori La Bey, Founder of Alzheimer’s Speaks is also the creator and host of Dementia Chats. She facilitates the group and asks our experts living with dementia questions and pull participants into the conversation to get their questions answered and their comments heard. Lori is a professional speaker and trainer on dementia and caregiving.   Her mother has struggled with dementia for over 30 years and she is now in her end stages of the disease.

Eilon Caspi pic

 

 

 

 

 

 

 

 

 

 

Eilon Caspi , is a PhD, Gerontologist and Dementia Behavior Specialist. He runs The Center for Prevention of Resident-to-Resident Aggression in Dementia.   Eilon will be assisting Lori in managing the webinars as well as monitoring participants conversations so we make sure we stay interactive and on top of all conversations. Eilon can also be reached via another website. Eilon can also be reached via another website.

For more information on Dementia and Caregving

Click Below

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Dementia: Keeping Safe In Todays World – Project Life Saver

Keeping Safe In Todays World –

Project Life Saver

092314_ASR_project_lifesaver

For World Alzheimer’s Month Alzheimer’s Speaks Radio has done several additional programs, but todays show will be a full two hour show dedicated to “Keeping Safe in Todays World.  We will be highlighting Project Life Saver and how it can be utilized to live safely.

project lifesaver logoOur Guests Today Include:

project lifesafer gene suanders photoChief Executive Officer and Founder of Project Lifesaver International,

Gene Saunders

Mara Botonis Head ShotAuthor Mara Botonis of “When Caring Takes Courage”

Mara botonis High Res Version of Front Cover (2)

rick phelps with samRick Phelps, diagnosed with dementia and founder of “Memory People”

& Author of “While I still Can”

MP final logoharry_urban Harry Urban, diagnosed with dementia and founder of “Forget Me Not” on Facebook

forget_me_not_logo_finall_030613Michael Ellenbogen, diagnosed with dementia and national advocate & Author of “From The Corner Office To Alzheimer’s”

michael_ellenbogen_videoEveryone is welcome to join the conversation on this very important topic. You can use the chat box or call in live to communicate with us.

We would also appreciate your efforts to share this episode with family, friends and colleagues on FaceBook, Google Circles, LinkedIn, Twitter and more.

For additional information on dementia and caregiving check out

Alzheimer’s Speaks below

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Questioning Myths

Questioning Myths

By: Michelle Remold

Recently I wrote about how it is important to really look into new research that is published when it comes to Alzheimer’s and dementia before completely believing it. While this is important, it is also important to look at the already established myths about Alzheimer’s and dementia. A few that stood out to me were the common “memory loss is a part of normal aging,” and “there are treatment options available to stop the progression on the disease.” While there are bits of truth to these myths, they really are not accurate.

When it comes to memory loss, it isn’t a normal part of aging. Some memory loss is normal such as forgetting names or misplacing keys, this happens to me on a daily basis. However, Alzheimer’s and dementia are not normal aspects of aging. I think that when people believe that all memory loss is a normal part of growing older, it prohibits them from receiving a correct diagnosis earlier in the disease.

The other myth that is a little more difficult to swallow is that there is a way to stop the progression of Alzheimer’s and dementia. While there are medications out there that may help to slow the progression of the disease, there currently is not a medication or treatment option that will completely stop the progression of the disease.

I think that with all the treatments that are available for countless other diseases and all the information that floats around, especially on the internet, it is important to know when to take a step back and realize that looking a little more into a claim or a perceived myth is okay. It’s good to learn what you can about Alzheimer’s and dementia and to ask questions as they arise. After all, you never know unless you ask questions.

???????????????????????????????Michelle graduated from the University of Northern Iowa with her Bachelor of Arts in Gerontology: Social Sciences and a minor in Family Studies. She is currently pursuing her Master’s degree in Aging Studies and Nursing Home Administration from Minnesota State University Mankato.

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