Join Alzheimer’s Speaks Radio and Max Wallack Author Of The Amazing Children’s Book On Dementia

Kudos to this young man who is raising Alzheimer’s awareness in unusual and creative ways. What an inspirational story!

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and Max Wallack

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Author Of The Amazing Children’s Book On Dementia

 

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A Story of Love and Respect

Well you all know by now how much I love my job because I’m always excited about my guests; but today is extra special.  We are so lucky to have with us Max Wallack who is a young man who is walking his talk with dementia.  Max’s journey with his grandmother who had Alzheimer’s has set this man on a path where he is making unbelievable strides.  He is a researcher, started an organization called Puzzle to Remember and now has co-authored a book called “Why did Grandma Put Her Underwear In The Refrigerator?”

Max’s co-author, Carolyn Given will join our discussion,along with Emma Richman.  I hope you can join us as well.

Max Can be reached…

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Spreading awareness through the Alzheimer’s Prevention Registry

Recently, my family’s story was featured on the Alzheimer’s Prevention Initiative website. The newly revamped website features a “Read Our Stories” section highlighting Alzheimer’s Prevention Registry members and why they agreed to join. I’ve written before about this cause, so I won’t go over all of the details again, except to say this organization is building a large pool of people interested in finding a cure or effective treatment for Alzheimer’s. The more people signed up for the Registry, the more available people for future studies on Alzheimer’s disease.

Dad and I at the assisted living facility, March 2011.

Dad and I at the assisted living facility, March 2011.

While The Memories Project began as a way to honor my father and raise awareness for Alzheimer’s disease, with my mom’s subsequent battle with cancer, my focus has expanded to the role of caregivers and how caregiving can take a toll on one’s mental and physical health. Each of us with our blogs is helping spread awareness of these issues in our own way, sometimes with humor, sometimes with anger, sometimes with sadness. I am proud to be part of a virtual community of fighters and preservers of dignity for their loved ones. Keep up the good fight!

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“Sorry honey, I think you have the wrong mother.”

Sadly so many of us can understand this situation. I think the blogger handled it beautifully. What would you do if faced with this scenario?

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Before my long weekend get-away, I visited Little Red Riding Hood (aka Mom) in her dementia facility home last week.

My usual feelings of dread – and the pit in my stomach – had been building up as I anticipated my visit. I knew that once I saw her, the pit in my stomach would begin to dissipate into the smaller, more manageable pit that’s taken up permanent residence. Sweet Clone (my youngest son) offered to accompany me.  Having someone with me every now and then takes a little of the sting out of my visits.

We arrived and I punched in the code at the front door, where a much different reality exists beyond the threshold.  This is where I take a deep breath and swallow my trepidation for how the visit may unfold.

These days Little Red Riding Hood doesn’t recognize me. For the last two years she seemed to…

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The dark side of assisted living

I haven’t had a chance to watch the PBS Frontline special called, “Life and Death in Assisted Living” yet, but I did read the online report. My interest was certainly piqued when I discovered that Emeritus was the assisted living company being investigated. My father spent the last year of his life in an Emeritus facility. I’ve written many posts about the good and bad experiences there. The PBS report takes a long and hard look about how Emeritus seems to be more interested in raking in cash that taking good care of patients. The accusations made range from hard-selling (fill those beds!) to employing woefully unqualified people to take care of dementia patients and not filing incident reports as required by law. To be fair, I would think that most of the corporations running senior residential facilities have aggressive financial goals, so Emeritus is probably not any better or worse than most of the other companies.

Are assisted living companies putting greed over good care?

Are assisted living companies putting greed over good care?

I know that if my mom had understood Dad was going to be an hour-and-a-half away from her, she would not have agreed to move him to the Emeritus property but somehow, that seemed to happen overnight. Mom said it was without her permission, but having asked around and now seeing how profit-focused Emeritus seems to be, I think it was just a hard sell tactic and Mom ended up signing a paper that allowed Dad to be moved. The rate increased multiple times in the 10 months he was there. I remember talking to the admissions coordinator when we were just checking out facilities and she told me that Dad’s monthly checks should cover “most” of the costs. Not even close. By the end, we were paying over $4000 a month and Mom had just received a notice that another big rate hike was coming right before she transferred him closer to home.

That rate didn’t include any medications, which racked up a bill totaling several thousands of dollars that we just finished paying off earlier this year. I did report the facility to a state board because I felt they overmedicated my father and gave him medications that were under scrutiny for being dangerous to give to elderly patients. I never heard any followup from my complaint.

The PBS report also talks about the numerous patient falls due to staff not adequately supervising patients. My father fell several times while at the Emeritus facility. The staff called us each time there was an incident (that we know of) and took him to the hospital when necessary. Even with adequate staff, preventing a fall can be difficult with dementia patients. I feel that the Emeritus facility that my dad was at followed the rules in this area, though I did wonder if there was a better solution than placing my dad’s mattress on the floor after he fell out of bed multiple times.

I’ve read both good experiences and horror stories when it comes to senior residential facilities from the amazing bloggers I follow. If you have the chance to catch the PBS special, let me know what you think. Can corporate entities balance making a decent profit with providing excellent care for our most vulnerable citizens?

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Service dogs trained to help dementia patients

I’ve long wondered if service dogs could be of use to dementia patients. This week, several articles talked about a so far successful experiment taking place in the U.K. that has matched specially-trained service dogs to assist those with early-stage dementia. I hope the trend spreads across the pond!

Service dogs are now being trained to assist dementia patients.

Service dogs are now being trained to assist dementia patients.

As I suspected, service dogs can perform key tasks to help keep dementia patients safe at home. This includes bringing them their medication at a certain time and reminding them it’s time to take a walk so they stay active. I can also see service dogs being trained to give a warning bark if a dementia patient tries to go outside alone. This could be an effective way to reduce wandering incidents which are always stressful and frightening for everyone involved, and unfortunately, occasionally deadly if the wandering patient cannot be located quickly and is exposed to extreme elements.

Dogs and animals in general often brighten the mood of everyone around them. This could help relieve depression and stress in patient and caregiver alike. Nursing homes often have a therapy pet visit on a regular basis and it’s usually a big hit with residents.

Of course, one has to weight the additional burden on the caregiver for caring for a dog (despite their amazing skills they are still dogs that need to be fed/groomed/taken outside to relieve themselves.) A service dog won’t be the right fit for every family but it could be a wonderful benefit for others. Hopefully charities will help offset the cost of these service dogs so that needy families can take advantage of such an amazing service.

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A solo performance

Friday was my 39th birthday. This year I have a lot to be grateful for, compared to the grim circumstances of my last birthday. Mom was just 11 days out of major surgery at this point last year and in a skilled nursing facility so she could learn how to walk again. She had a colostomy bag and there was no way to know if the cancer had been successfully removed at that point. I visited her at the nursing home and she labored in writing me a birthday note. I was touched by her effort, which I recorded in last year’s birthday post.

bday cake

Mom has come a long way in the last year. Things are almost back to “normal” whatever that is. Of course, Dad is and always will be the missing piece of that puzzle. As I’ve written before, the long-standing tradition was for my parents to sing “Happy Birthday” to me over the phone, since I usually was not with them for my birthday. They would practice and Dad loved the chance to break out his Bing Crosby impersonation. Last year, things were so crazy that I didn’t even think about the birthday serenade.

This year, Mom was ready for her solo performance. But as she began she was clearly choked up. It took me a moment to understand why and then I knew she was missing Dad as her duet partner. But she got through it and did the big dramatic ending that she used to do with Dad. It made me smile and tear up at the same time.

At some point after losing someone close to you, you adjust for the most part to a “new normal” in your day-to-day living. It’s in these small, rare special moments that the loss hurts the heart the most.

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Guest Post: Can Anything Slow the Sad Progression of Alzheimer’s Disease?

Guest blogger Alicia Lawrence offers simple ideas to improve the quality of life of your loved one in the earlier stages of Alzheimer’s.

Once you’ve gotten over the shock of your loved one’s diagnosis of Alzheimer’s, your thoughts inevitably go from disbelief to the desire to do something, or at least mine did when my mother began forgetting things. I immediately began researching whether there was any way to stop the progression of this terrible disease.

I wish I could tell you that there’s a magic formula — eat right, exercise and do crosswords, eat only dark chocolate and green tea! Unfortunately, as we all know, there’s no magic cure. But there are methods that may work to slow down the disease’s progression in the short term, and that’s what I’d like to share with you today.

crossword

Mental Stimulation

Actually, doing crossword puzzles does help a little. Any sort of increased mental activity can help ward off the progression of Alzheimer’s by stimulating the brain. If your loved one isn’t a gamer, it doesn’t have to be crosswords.

Engage their brain by encouraging them to read a book, write a story, play the piano or learn a new language. Heck, quiz them on the make and model of the kitchen cabinet hardware from their very first house or their grandchildren’s birthdates — anything to get that brain working.

Avoid Stress

Alzheimer’s is not caused by stress. But stress can exacerbate symptoms, and in the early stages of diagnosis it’s very difficult for patients to avoid stressful situations, such as informing family members and discussing plans for the future.

Do your best not to add to your loved one’s stress. Help establish routines that are both comforting and helpful for someone struggling with memory issues. Make sure that meals, baths and doctor’s appointments are all on a schedule. Get everyone who’s involved in care to get on board with the schedule to make things run smoothly.

Try Dietary Changes

The evidence on diet and disease is admittedly thin, but many think it’s worth trying different combinations of healthy, nourishing foods to try to reverse illnesses of all types, from cancer to Alzheimer’s. Several things seem to have had particular success for Alzheimer’s patients.

One is taking more antioxidants, including Vitamin E, which protects against cell damage and has been shown to slow the onset of Alzheimer’s symptoms. Folate has been shown to lessen the risk of getting Alzheimer’s, though researchers are still studying the link between slowing of symptoms and this B vitamin.

Gingko Balboa has also been linked to a slowdown of symptoms in early Alzheimer’s patients, though those studies are somewhat controversial. Still, doctors agree it probably can’t hurt to include gingko as a supplement along with other vitamins.

No matter how dreary the situation looks, never stop trying. Have fun and enjoy the company of your loved ones while they are still here. Sometimes laughter can be the best medicine of all.

About the author: Alicia Lawrence is a content coordinator for a tech company. In her free time, she enjoys hiking, cooking healthy meals, and writing on her blog MarCom Land. Find Alicia on Google+

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Visiting Dad’s place of death

After spending time with Mom for her birthday I ventured north to Albuquerque. I haven’t been back to Albuquerque since the last time I saw my dad alive. I held his hand for as long as I could before having to catch a plane back to Atlanta. Dad was moved to a skilled nursing facility shortly after that. He died a month later, also in Albuquerque.

Presbyterian Hospital, the last place I saw Dad alive.

Presbyterian Hospital, the last place I saw Dad alive.

So I had mixed emotions about returning to the city. Of course it was blazing hot but I felt welcomed by all of the people I came in contact with, from the hotel staff to cab drivers to restaurant servers. I also finally had the opportunity to see the place where Dad passed away. Fortunately, the place seems to be well-run, clean and has plenty of natural light. It has a nice activity room with birds and plants and an impressive rehabilitation center. Of course, a visit to a nursing home is always depressing to a certain extent and there was a lady with her head resting on her chin, completely oblivious to the puzzle in front of her in the activity room. There was such hope on some of the rehab patients’ faces. I hope they are able to become independent again, to walk again, to return home, whatever their goals may be.

The view from the nursing home.

The view from the nursing home.

I liked how the facility allows residents to eat whatever they want for meals, so if they want a grilled cheese for breakfast they can have it. With adequate nutrition being such a struggle for nursing home residents, this is a positive approach to take. Also, I was greeted by a visiting therapy dog as I entered the facility. Dolly the greyhound was so sweet and gentle, I’m sure she brightened the residents’ day. The area around the facility is mainly suburban and residential, so it seemed very quiet and peaceful, with a beautiful view of the mountains in the background. Butterflies and birds greeted me on my way out. Not such a bad place to die, I suppose.

The Crossroads Motel sign.

The Crossroads Motel sign.

Perhaps the most telling sign that my trip to Albuquerque was meant to be was my hotel room. It overlooked the Crossroads Motel sign. For fans of the television show, “Breaking Bad” this will be familiar. But for me it has a deeper meaning. I was greeted by that sign each day as I looked out my dad’s hospital window back in November 2011 while he was in CCU. I remember noting how appropriate the sign was, since Dad was himself at the crossroads between life and death. And now I feel like I’m at a crossroads as well. Future career, processing grief, developing a caregiving plan for my mom, there are so many things to consider. But for now, things are looking brighter. Maybe not as bright as that Albuquerque sky, but at least Mom’s oncologist just gave her great results and she continues to improve and remain independent.

It was a good trip. I feel like now I can appreciate Albuquerque for being more than where my father died.

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Dementia and Suicide

Good information here to start an important discussion regarding suicide rates among Alzheimer’s patients and their caregivers.

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Dementia care center facing abuse charges

A local story caught my interest today. It’s a sad one, and a story that no one wants to hear, especially if you have a loved one in an Alzheimer’s care facility. The caregivers at a metro Atlanta memory care center are facing 72 abuse-related charges. The allegations include restraining patients with bedsheets, throwing water at patients and putting multiple diapers on patients so they wouldn’t have to change them as often.

The facility was immediately shut down and both current and past caregivers will have their day in court. The most surprising aspect of the case to me was the interviews with the relatives of patients who were residing at this facility. The ones the local news interviewed were shocked by the allegations. One woman had even moved her mother from another facility to this one because she was receiving inferior care at the first facility. No one interviewed had seen anything related to the charges filed. Either the case is overblown or the caregivers were good at hiding their abusive actions.

The relatives were also upset about having to “claim” their loved one at a moment’s notice, since the facility was immediately shut down. It is a shame that there is not some safety net in place so that families are not left looking for another care center on their own while having to take care of their loved one at home. (One woman said it took months to find the right center, and I’ve read stories from bloggers who have said the same thing.)

The takeaways from this case for me is to really look at a care center from top to bottom as objectively as you can. Try to visit outside of normal business hours if possible. With Dad, we were not able to visit as regularly as we’d have liked, but with Mom I was there almost every day. Did it make a difference? I feel like they received a similar quality of care but I felt more in control by being a daily presence. Of course, visiting daily is not viable for everyone and should not be required for your loved one to receive compassionate care.

The second takeaway for me is having a backup plan. If the facility where your loved one resides is suddenly shut down, are you prepared to house them indefinitely? I know my house with stairs is not safe for a dementia patient. If you have siblings or other relatives, have you discussed with them if they would be willing to provide temporary housing? Taking in a dementia patient requires 24/7 care as we all know. Are there sufficient at-home services in your area? I know where my mom lives, the home care resources are very limited.

A tragic case provides some food for thought.

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