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Better Conversations with a Parent with who has Dementia / Alzheimer’s

conversationdemWhen people first meet me, they would describe me somewhere between quiet and aloof. I’m not sure if this is just part of my personality profile or became part of me because we moved around so much when I was younger that I learned my best friends developed with time. I have found in the work setting, listening to the discussion and saving up my voice until the end served me well.I share this because this blog and the ease at with which I share what’s happening in my life is very different from the woman you would meet in person.

However, I’m realizing that in general, I am very talkative and approachable on the subject of caring for a parent with dementia. More people know this about me than even the names of my husband and children. It is never I topic I start but I’ve found I’ve been in so many casual conversations that some aspect of caregiving or dementia is mentioned that I quickly find a common bond that seems to be broader than personal interest, husband or child topics.

Recently, I found this bond with a woman at Church. Her experience in caring for her mother-in-law sparked a fire and she recently jumped career tracks and is now going to be working in a local community to improve their services for their residents.The experience of caring for a parent is changing many of us in positive ways.

She sent me this article and I thought it included some great general tips on how to be a better communicator. I included the list as well as added some of the things I have learned in the past year. They include:

#1: Make it a priority to engage in “time-limit-free” conversations.  I found arriving with an agenda can turn your visit sideways. It’s more important to visit in the moment. Your calm translates to their calm, your angst translates to their angst.

#2: Use shorter sentences, and don’t ask more than one question at a time. Avoid asking questions about what they just ate or did. Since short-term memory goes first, this can create some discomfort when they are unable to recall the information. My mom would come up with logical answers, but had no relationship to factual information. 

#3: Talking is overrated. I like to bring pictures and share my memory behind the photograph. My parents were never huggers or hand-holders, but as often as I can I work in a hug, a kiss or a hand-hold. One of the most memorable moments I spent with my Dad was holding his hand last September, two weeks before he died.

#4: Try alternative means of communicating. I write my Mom notes as well as spend time just sitting with her around a puzzle. Doing puzzles are a great way to connect over a shared purpose and exchange smiles and winks when we find the right piece.

#5: Make as many connections as possible, both with your words and your body language. In general, I will avoid looking at my phone or email and just will sit quietly if my Mom and I are not doing something together. My goal is to give her my undivided attention when I visit.

#6: Be calm, and remember the past. I learned early on that my Mom would mimic my emotions. I work to redirect the conversation if we are moving into a direction that gets her angry. Quickly shake it off and consider bringing up a fun memory from your past to share.

#7: Don’t take it personally. So easy to understand, but so difficult to do.

This one poem always gives me some perspective when I’m overwhelmed, frustrated, angry and sad. It’s a reminder to be kinder and gentler.

I hope some of these tips help you on your journey. Experienced.

Some additional stories related to this topic include:

Manage a Visit with Someone Who Has Dementia
I provided a list of “Do’s” and “Don’ts” to help those just getting exposed to someone with moderate dementia. Some of these take time. Trying to connect and being present is more important than executing these perfectly. 

Three Go-to Tactics for Dementia Caregivers
These have served me well over the years.

 

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Even my 11 and 16-year old Forget and Misplace Things

kidthinkFor those of us watching a parent with dementia we battle our internal fears that we are fated to follow in their footsteps. The medical community doesn’t have all the answers, and from the research I’ve read as well as based on what Dr. Oz told me when I appeared on his show, I have more control over my senior years than heredity. For several years I’ve been making incremental changes in my life to guide my footsteps in a different direction than my parents — both medically and socially.

I was catching up with a girlfriend who mentioned she was worried because her husband seemed a lot more forgetful lately. I told her that forgetfulness doesn’t always equate to dementia or mild cognitive impairment. My kids forget and misplace things. My friend commented that the difference must be that the young don’t fear that forgetting something means they have an early sign of dementia. We laughed recognizing the truth in her comment.

I recently read two articles that were helpful. The first Forgetfulness Not Always What you Think by WebMD. We can expect that recalling information may take longer and forgetfulness alone doesn’t mean dementia. My Dad’s personality change was very noticeable and my Mom had more subtle personality changes. These symptoms appeared years before any diagnosis.

A recent article published by AARP entitled: 8 Treatable Conditions That Mimic Dementia. It’s worthwhile reading. If not for you, then for those other people in your life that may not realize the complications medications and other conditions can present.

I still hear from many people who believe getting forgetful and mean as you age is normal. We can all recall the one neighbor from our childhood who fits this stereotype. Dementia is complicated and the disease makes it hard for the person to recognize as well as human nature makes it difficult to accept the limitations it might bring to your life. I hope to educate as many as I can on how to recognize the symptoms and manage when you may be a witness to something you can’t control. Experienced. 

 

 

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Finding ways to work through the stress of caregiving

tennisI wanted to improve my tennis game so my husband and I joined the local gym that offered tennis. It took me a while to get into lessons, flights and play with others who would help me be able to improve my game.

Several women welcomed me and invited me to join their weekly groups and even join into their lessons. Tennis has been an incredible way for me to find new friends as well as work off the stress of caring for my parents.

Most of my tennis friends know what I’m dealing with. My parents have come to watch matches. When my father died, I actually volunteered to step in and play if someone needed a sub as soon as the day after his death. I find the rules that require you to turn off your phone and dedicate uninterrupted time therapeutic. I can shut off my brain to life outside of the court lines.

A friend shared an article that was recently posted in The New York Times called “Walking the Talk” and I love the idea. After the winter we have faced, the story is compelling and makes me wonder if there are local groups like this to help move through the stress of caregiving.

What are you doing to work through the stress of your caregiving experience? Asked. 

 

 

 

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Alzheimer’s Hitting Women the Hardest

drozshot

Dr. Oz is telling me how to minimize my risk of Alzheimer’s disease. Heredity hasn’t doomed me thankfully.

I was surprised to learn that Alzheimer’s is more likely to strike women in their 60s than breast cancer. Today, Alzheimer’s is the sixth leading cause of death in the United States.

Every 67 seconds someone in the United States develops Alzheimer’s disease, and it’s taking a heavier toll on women than men, according to new information released by the Alzheimer’s Association in March.

The “2014 Alzheimer’s Disease Facts and Figures” [PDF] report found that women age 65 have a one in six chance of developing the disease, a type of dementia that causes problems with memory, thinking, and behavior. Meanwhile, men the same age have a one in 11 chance of developing the disease. Women in their 60s are also twice as likely to develop Alzheimer’s than breast cancer over the rest of their lives.

The news release included information on how the disease is impacting women in the workplace differently as well. I found managing a full-time position and caring for my parents, my family and myself overwhelming. Those of us in the sandwich generation can’t argue with these figures:

The heavy toll Alzheimer’s takes on women also reaches into the workplace, according to the Alzheimer’s Association. Among caregivers who were also employed while providing care:
• Twenty percent of women, compared to 3 percent of men, went from working full-time to part-time.
• Eighteen percent of women, as opposed to 11 percent of men, took a leave of absence from work.
• Eleven percent of women versus 5 percent of men gave up work entirely.
• Ten percent of women compared to 5 percent of men lost job benefits.

To read the full story, visit Women Are Hardest Hit by Alzheimer’s Disease. Believed. 

To get some ideas on how to fight back, visit the Dr. Oz show from April 1, 2014. That’s me in the blue shirt talking with Dr. Oz.

 

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Dr. Oz Focuses on Dementia and Alzheimer’s Today (4/1/2014) Tune In!

drozlogoA month ago I went to New York and was part of the first-ever segment where Dr.Oz discusses dementia and offers some solutions for those of us with a familiar history on how to avoid the fate of our parents. The show is airing today, April 1, 2014. My Dad would have enjoyed knowing the segment I participated in would air on April Fools Day. To find out when and on what channel it airs in your area, check out the station finder.

The good news is that if you miss it, they will post it online to view later. I hope this is the first of many for Dr. Oz. He has the power to educate and build awareness as well as share with us tools for prevention. Gratified.

 

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Medication Roulette and Dementia

rouletteMy Mom is sliding into the deeper grasp of dementia. It is surprising to many people (and often to me) how one moment she can be so lucid, and the next, totally disjointed. She continues to try and join in the activities of the Independent Living community she was a member of for over a decade. Now, she’s confrontational and many of the residents are complaining. It’s sad that the community can’t deal with her, but even those that are well-trained are having a hard time re-directing her when she gets aggressive.

In my Mom’s community, Assisted Living is a hallway away from Independent Living. Now that my Mom’s full-time companion, my Dad, has passed, she is alone and really having a hard time finding a footing. The dementia is making it impossible. She’s very lonely, but on top of her grief, she is unable to make new friends and her friends are finding it hard to engage her now too.

Mom founded many of the bridge games and loves to play, but she can’t remember, nor does she recognize that she is no longer running the games. She’s short-tempered and rude with most of the other bridge players — a concept that would horrify the woman who raised me. However, this is the woman most of the bridge players see and don’t know the caring woman that formerly inhabited my mother’s being.

The doctor changed her medication and added the Exelon Patch (to help cognition) and Risperdal (to minimize anxiety and paranoia). They also asked us to hire personal assistants from 1 to 9 PM daily. The first two weeks went well and then things fell apart. The doctor is increasing her dosage and we have replaced the assistant that worked on the days I noticed my Mom having the most trouble. Risperdal is an off-label prescription and when we first got the recommendations, we did our research and gulped as read the side-effects. We have to try something new, because now, she is not doing well.

The current options outside of increasing her medication:

  • Move her to the section of Assisted Living and put on a Wander Guard. This prevents the doors from opening and the elevator from working. I can just visualize my Mom banging on the doors and confronting anyone that tries to use the doors if they don’t work. Both the AL staff and I don’t think this is the right solution.
  • Check her into a psychiatric facility so they can treat and manage her dosage and find the right mix. This could be a 2 to 3 week visit. The change is living arrangements alone will confuse and frighten my Mom and my biggest fear is that they will medicate her into a submissive state and she will return to just be admitted into the lock-down memory community.
  • Find a new facility that is dedicated to memory care and move her from the community she choose. This seems like the most logical next step for us to pursue.

Please let me know what your experience and suggestions maybe as we try to navigate this new transition in my Mom’s care. Pleaded.

Prior Related Topics include:

The Benefit of a Continuing Care Retirement Community

Your Parents Agreement with the Retirement Community is being Terminated

We are Ready to Move into the Retirement Community

 

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The Two Stinky Options for Dementia Care Givers

marie marley

Marie Marley

I am thankful that my parents choose their retirement community. It alleviates most of the guilt I feel, however, it doesn’t mean you aren’t involved or acting as a care giver. Helping my parents has been and continues to be a part-time job. The community works with me and my siblings — we are actively involved as advocates and care givers — and have been for more than two years.

Right now my siblings and I are struggling to know if my Mom is in the right place. With dementia, the transitions are the trickiest and I’m not sure one community will always be the right place for everyone. The set-up of the Assisted Living community is proving to be very challenging now. We are possibly going to have to find her a new place if the place she selected confirms that they are just unable to help my Mom any longer.

I enjoyed reading this article in Huffington Post by Marie Marley who speaks to The Pros and Cons of Placing Your Loved One in a Facility.

It’s a good read, and a good reminder that both choices stink. Conflicted.

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