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Dementia in Real Time

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Sometimes the ones suffering from dementia or Alzheimer's seem to be on the inside looking out. We try to ease their
confusion and bring the outside in.

AND when we need someone who understands, we come here. We help each other scream, cry, and sometimes just laugh till we can get back up and keep on keeping on.

God love us all, we have to laugh to keep from crying!
Vicki222's profile

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They just want someone to listen

Dementia and cheese: Connecting with people and making friends in the grocery store

Published: Sunday, Oct. 2, 2011 3:00 p.m. MDT

By Carolyn Henderson, For the Deseret News
 
I was in the grocery line when the woman behind me pointed to the cheese I was buying.

“What a remarkable cheese,” she commented. “What is it?”

It was some Tuscan-inspired thing with herbs and pepper and unidentified crusty flecks over the surface, very expensive and outrageous-looking but on sale for a price that validated bringing it home to the Voracious Teenage Vultures.

The disease stole his mind but not his heart: to the end of his days, Grandpa loved people and being around them.

“I didn’t know we sold this,” the checker commented, reading through the ingredients.
The woman behind the cheese commentator spoke up.

“I really like unique cheeses.”

“Where did you get it?” the first woman asked.

“It’s on sale,” the checker offered.

For the next five minutes, a lively banter flowed amongst the four of us concerning cheese, cheese prices, cheese casseroles and the difference in eating habits between finicky felines, toddlers and teenagers. (For the record, toddlers eat only cheese and nothing else; teenagers eat cheese and everything else; and finicky felines need to focus more on mouse acquisition than the contents of their owners’ refrigerators.)
Earlier I had chatted with another customer about salami, both of us marveling at the size of the chub.

“Here,” she handed me the one she was holding. “Take this one; it’s bigger.”
Considering that both packages said 32 ounces, I wasn’t sure of her logic, but I appreciated the sentiment.

In the course of the shopping trip, I networked with fellow shoppers in the produce section, frozen food aisle, and the paper towel and toilet paper subdivision. All of the conversations were initiated by the other patrons.

There’s something about the grocery store that brings out the best in people. It’s as if we realize that we’re all in this together, and it’s fun to talk food.
For several years, Tired of Being Youngest and I squired about Grandpa, who spent his last days on earth battling severe short-term memory loss and dementia.
One of Grandpa’s favorite haunts was the grocery store. A friendly and garrulous soul, Grandpa accosted anyone who breathed, convinced that he was somehow closely related to this person.

Within minutes, the jokes were trotted out, the comments and observations, the highly suspect Native American phrases that he had picked up in his youth and brought out after every single solitary family meal to the point of reducing my elegantly appointed and always-in-control sister-in-law to the verge of screaming.

Grandpa was an equal opportunity accoster, and in the five-year span during which he cornered and buttonholed total strangers who were looking at lunchmeats or poking peaches or considering whether soda is a valid food choice, not one person brushed him off. You could almost gauge the moment in their eyes when they realized that this man, though he sounded like he was all there, was really locked up in the prison of his mind.

The disease stole his mind but not his heart: to the end of his days, Grandpa loved people and being around them. This is "Carl," courtesy of Steve Henderson Fine Art.
Tired of Being Youngest gently tugged and pulled, urging Grandpa to move along and stop bothering the person, but Grandpa unlatched his hold with great reluctance. To a man, woman and child, the accosted persons nodded, smiled and stayed put until Grandpa was done.

After Grandpa died, I was in a fast-food establishment, determining whether or not I wanted fries with that, when an elderly gentleman approached me and began chatting. He seemed lucid at first, but something he said about the local professional baseball team (we don't have one) using onions as their batting balls clued me in. Tired of Being Youngest caught my eye and we shared a moment of complete understanding before turning our attention back to our accoster.

People need to talk — those with dementia, those without and those in between. In an era when Facebook increasingly overshadows face to face, we need to be aware of and open to the opportunities we have to connect with fellow human beings and literally touch bases. And we don’t have to talk about great things.

Cheese will do.

Carolyn Henderson is a freelance author and writer of the blog, Middle Aged Plague

www.MiddleAgedPlague.AreaVoices.com.

Carolyn is also the manager of Steve Henderson Fine Art

www.SteveHendersonFineArt.com.
 
 
Vicki222's profile
1 reply - last reply

Caregivers info

Dear Vicki,

No two people experience Alzheimer’s disease the same way, and there’s no one "right" approach to caregiving. In honor of November as National Caregiver Month and National Alzheimer’s Disease Awareness Month, we talked with Valerie Ferrero, 62, about the challenges and joys of caring for someone with Alzheimer’s.

In 2008 Valerie’s husband, Lee, then 61, was diagnosed with younger-onset Alzheimer’s. The diagnosis brought about significant changes in their lives. Valerie works in a college admissions office, and is now the sole provider. "Lee had to retire once we knew he had Alzheimer’s disease. Neither of us wanted it - he was a workaholic. He didn’t feel he needed to retire. In fact, he didn’t really believe he had Alzheimer’s".

At first, it was a struggle

Valerie soon realized she needed help to deal with the diagnosis and its ramifications. "At first, I struggled a little," she reflects. "I really didn’t know what was expected." She met with a counselor, who gently but persistently encouraged her to contact the Alzheimer’s Association and join a support group.

"I’m not a joiner," Valerie notes. "I’ve always handled things myself. But I finally met with the regional director of the Alzheimer’s Association, who was extremely helpful and put me at ease. She said she wanted to meet my husband to assess which support group would best meet our needs. She also made a point of describing all the local resources and services available to us."

For the first time since the diagnosis, Valerie felt that she wasn’t alone. "Now I take time off from work every month so we can attend a support group. I find myself sharing, learning and helping others. Lee was appointed to a one-year term on the Alzheimer’s Association’s Early-Stage Advisory Group, and his involvement allows me to connect with spouses in similar circumstances."

Reaching out is key

Valerie found that being flexible and making adjustments "is critical to our survival. I’ve also found that educating myself about the disease helps. So does realizing that we really only have control over ourselves and how we react and respond to something."

One of the most important things Valerie says she learned from the Alzheimer’s Association is acceptance. "I try to accept my husband as he is now and not as he was in the past," she explains."I also try to remember that I’m not perfect and it’s okay to ask for help when I need it. Being able to reach out to others and avail myself of Association programs and services has been key to keeping balance in my life."

Please visit our Caregivers section for information on the many caregiving programs and services we offer, and share it with others via email, Twitter or Facebook.

Many thanks,

Angela Geiger
Chief Strategy Officer

P.S. In recognition of National Caregiver Month, we are offering a discount coupon for our Caregiver Notebook – a valuable resource in helping caregivers. Visit alz.org/caregivernotebook and enter the coupon code, CARE2011, at checkout to receive your discount.
Vicki222's profile
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7/20/11 Who's News This Week?

Be sure to open your Eons Insider newsletter this week to read about who's news on Eons. You'll see why!

If you're not already, be sure to subscribe to the Insider: go to your Account Settings / Notifications view link and click Yes for the newsletter. Each week you'll be introduced to new active groups, free games and great people. Enjoy!

If you missed past newsletters, go to the Newsletter Archives view link to catch up and be sure to subscribe to get the next issue.

Ri for EonsTeam
EonsTeam's profile

Online test for early signs of Alzheimer's

Online test for early signs of Alzheimer's
A test for the early signs of Alzheimer's disease which can be taken at home in 15 minutes has been developed by scientists.
By Andy Bloxham
11:24PM BST 13 May 2011

The quiz, which is taken online, could help diagnose the condition perhaps years earlier than it might normally be spotted.

Experts believe that delaying the onset of Alzheimer's by five years could halve the number of people who die from it.

The test is not intended to replace checks with a GP, however, and it is intended that they will continue to be done to check the diagnosis is correct.

The quiz will provide an instant result and could either set people's minds at rest or encourage them to act sooner than they might have to visit their doctor. It could also help some people who feel a stigma to admitting they are suffering memory problems.

It will also provide guidance on lifestyle and diet which could also slow the development of the condition.

The quiz is called the Cognitive Function Test and was developed by scientists at Oxford University.

There are many tests which can be taken to ascertain evidence of the risk of an individual having Alzheimer's but this is believed to be the only one which can be taken in private at home.

The test, which is free to take, follows a significant study published last year which credited a vitamin pill with cutting brain shrinkage linked to the disease by up to five times.

The tablet, which costs as little as 10p a day and is made of three vitamin B supplements, was described as the "first glimmer of hope" in the battle to find a drug that slows or stops the development of the disease, for which there is currently no cure.

The study showed the vitamin pill to be most effective when taken early but because people who are apparently healthy have no way of telling if they might benefit, the Oxford research team created the test.

It measures mild cognitive impairment – or the slight memory lapses that can be a precursor to Alzheimer’s – which affects one in six aged over 70, or 1.5million Britons. Half will develop dementia within five years of diagnosis.

Alzheimer's expert Prof David Smith said: "Alzheimer’s is a preventable disease, not an inevitable part of the ageing process. The trick is to identify any decline in memory function as early as possible and take the necessary prevention steps."

The Cognitive Function Test has three sections which use computer-based tasks and games to measure different components of memory.

Those who are believed to be at risk of Alzheimer’s are advised to have a blood test, can also be done at home, and given a letter to take to their GP.

However, Professor Smith urges people not to do take the vitamins without speaking to their doctor first. This is because at high doses they may encourage tumour growth and interfere with the treatment of illnesses such as rheumatoid arthritis.

The online test was created for Food for the Brain, a not-for-profit organisation which raises awareness of the links between nutrition and mental health.

Dr Celeste de Jager, the lead developer of the test, said the test was only relevant for those over 50.

Dr Simon Ridley, of Alzheimer’s Research UK, said: "Diagnosing dementia in its earliest stages is hugely important. However, an online test is not a diagnosis. Anyone worried about their memory should seek advice from their GP."

To take the test, go to www.foodforthebrain.org.
jp777's profile
3 replies - last reply

Dementia Information Here for You

It seems as if everyone is so busy caregiving or have lost their loved one and moved on that there are few discussions anymore.

Therefore, I am leaving this site up as there is lots of good information on it for those who are still on the journey.

If you have any questions, please feel free to ask and I will check in when I can and if I cannot answer, I will find the answer for you.
Vicki222's profile
2 replies - last reply

How are you? Roll Call

Hope this finds everyone doing well and coping. Please let us here from you and let us know where you are on this journey.

We are here to help each other through this Long goodbye. Let me know if you can help or need help. There are many here who are walking or have walked the path who might just have the answer you are looking for.

God bless and hold you in His arms.
Vicki222's profile
7 replies - last reply

What do you tell a caregiver to AD?

This morning I received a message regarding a lady whose husband has AD. For informational purposes, I'm posting it here. It disturbs me because I feel so inadequate in giving the information she so badly wants and needs. The thought that keeps running through my mind is How does one communicate specific answers to questions caregivers ask? Each AD case has its similarities, yet each one is unique with its problems.
The part of the message that concerns me most is that this lady is planning to take a trip with her husband next week. It sounds great...except with AD victims, one never knows what the person will do, how they will react to different surroundings and situations, when they will become difficult or impossible to deal with, or why they react to strange locations and situations. In my specific case with my now deceased husband, we had to relocate to another area for medical reasons. He left our home physically, but mentally he never left. Although we were 300 miles away in a large city, he thought the new neighborhood was still the neighborhood where we had lived for over 35 years. While I could mentally and emotionally deal with the situation, there was no way I could physically care for him alone. This is a disease that requires more than a "one person caregiver." So, if you find yourself in the role of "AD caregiver," please surround yourself as soon as possible with helpful family, friends, neighbors, medical staff and advisers...anyone who can assist you in all sorts of situations.
Now, here is the message that concerned me enough to post it here for those interested in these problems.
I live in a small, isolated, town where the doctors know next to nothing about Alzheimer's Disease. I was actually hoping that this article would be more informative about end of life care, because I am definitely "winging it". I do not really know what to expect other than the swallowing will become difficult. I do have access to Hospice, but am worried about the lack of training as it seems to be comprised of many volunteers. My husband has a great appetite, but is painfully thin, He hasn't been able to do anything for himself for over 2 years. He can no longer walk & hasn't talked in 3 years except for an occasional word. I sense that he knows what is going on which makes me very sad. So many people have the misconception that people with AD have "checked out" mentally. I feel quite strongly that they have a sense of what is happening, but cannot express it. I know that one is never fully prepared for the end, but I would appreciate any suggestions of readings that might have more than a sentence or two about "end of life'. How can we be prepared at the end if we aren't aware of what to expect? I mean, I may not realize that he is at the end. I am taking him on a trip next week for a change of scenery. It will not be easy, but since I don't know if he will live another year, six months, or six weeks, I figure I may as well give it a try. I read somewhere that at the end AD patients lose the ability to smile. My husband still knows me (I think) & he still smiles, so I think I should be safe traveling with him.
dlly1935's profile
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late Stage Alzheimer's care

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if can't open see first reply
Vicki222's profile
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My Introduction...

Hi...
My name is Ed VA, and have been a member of Eon's for several years on Velvet Pen, and Somos Latinos groups.
I come to you in the hope of finding useful info regarding Alzheimer's/Dementia for multiple close relatives of mine. Primarily, my wife is deteriorating rapidly. This year alone, she has difficulty remembering not just the grandkid's names; but now, I am also relegated to being called by "Hey You". I have to teach her on a daily basis, how to use the phone, and the TV remote on the order of 5 times per hour. She has left the gas on the stove on twice that I know of. It was just pure luck that I got home from work in time to put them out before she blew the house up.
I need some advice. She won't go see the doctor due to some fear she developed years ago when she was treated for high blood pressure. She will suffer to no end with a severe cold before she will take any kind of medicine. My son, stepson, and grandson full-well realize her problem; yet she will not visit a doctor. I hesitate to "commit her" on the basis of "her own protection"; but I cannot afford to move somewhere else if she causes the house to be destroyed.

Please throw some info my way. P.S. She's 58; and eats a lot of meat which I've heard may contribute to Alzheimer's.

Thank You !

Ed VA
edv7028's profile
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