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Making the Best Choice Medically for Mom & Dad

One of the toughest challenges I faced when caring for loved ones with dementia were the medical choices for non-dementia care issues that erupted and threatened my parent’s well-being.

A recent opinion piece in The Washington Post by an Emergency Room physician titled Doctors are torturing dementia patients at the end of their life. And it’s totally unnecessary illuminates the reality of the choices families face when caring for aging parents.

My family faced these difficult choices twice.

My father in a moderate stage of Alzheimer’s had a tumor on the back of his tongue. Knowing our parents were doing better together than they would alone, and in the hope that we would eliminate the pain my dad was feeling but could not verbalize sent us on a path to try and treat his tumor. After a week of medical visits we saw that our dad was not up for a fight with cancer. We worked to find him some relief through hospice care. Thankfully, his end came quickly.

When my Mom broke her hip in her Memory Care community and ended up in the hospital, I knew the end was near. The recommendation was to perform surgery but that required we lift the Do Not Resuscitate order. My mom no longer knew my name and I wondered if the stress of the trauma resulted in another stroke. I had to repeatedly ask that we let “nature take its course” while the hospital kept trying to certify my mom for surgery. My mom was clear that qualify of life was more important than quantity, and I knew the surgery would be painful and not provide improved quality to the rest of her life. Thankfully, the medical team agreed that she was able to survive surgery and we moved her into hospice care.

I still end up in tears recounting both of these stories, however I know it is important to make sure other families know that it could be one of the greatest acts of love you offer by taking the path of least medical intervention. I’m glad to see Dr. Geoffrey Hosta share his medical insight that reaffirms the choices my family made. At least I know we did our best to honor their end-of-life wishes. Reflected.

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Where I'm giving Today to Honor our Veterans

In honor of Giving Tuesday, I have made a donation of 5 wreaths to Wreaths Across America. It’s a quick way to thank and honor our veterans. They offer several ways to help beyond donating. Please visit the website to learn more, but in short your can:

  1. Sponsor a wreath ($15) that is made in the USA.
  2. Volunteer to lay wreaths.
  3. Invite friends and family to participate.
  4. Step up to become a Key Volunteer where you commit to organizing and leading a team and other public volunteers on Wreaths Across America Day .

This is one charity that is deserving. Suggested.

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Managing Giving and Mild Cognitive Impairment

Early on, I started to notice a lot of mail waiting to be posted to a variety of charities every time I visited my parents. This was unusual since it was a different pattern of giving than the habits my parent’s held for the decades leading up to this shift.

When I read the mail, I started to see that charities were using language that said “Thank you for your pledge!” or “Can we count on you again this year?” Being of the greatest generation, my parent’s were going to follow up on what they perceived to be an obligation. Unfortunately, they didn’t remember if they did or did not pledge and just believed what they read.

I did start to realize that I was getting very similar donation requests at my own home from charities I never gave to or pledged money to previously. It is actual exploitation because they are using misleading language to trick people into giving them money. Some estimates put this figure at over $36 Billion annually. YUP, that is with a B for Billions.

I see this with the clients I work with when we sit down to pay bills. They enjoy writing checks and giving to charities. However, when I ask, they typically can’t tell me anything about how the charity will use their money, and when we look at prior giving never previously gave to them.

I addressed this with my Mom by giving her a check book that had a limited amount of cash in it so she could write checks and give to the charities she choose. Within a few months the check writing stopped. After a while she just got overwhelmed trying to manage the register and balance the checkbook. We continued to give annually each January using Charity Navigator as had been their giving habit. We recycled all the donation requests that came in the mail.

For individuals that continue to enjoy writing the checks that we work with, we build a master charity roster. We make it easy for them to see when and how much they already have given.

In general, once you give to a charity, they send you solicitation requests monthly. They also sell your name to affiliated charities. Sadly, there is no real way to stop the mail. The Do Not Mail list never worked for me, my parents, or any of my clients. Now they actually charge a $2 fee if you want to get added. The only effective way to have them stop is to no longer give. They will eventually drop your name from the list.

For charities those charities to which you want to contribute, contact them directly to give. Make your giving contingent on that fact that they won’t sell your name which is your right.

For many who are starting to feel the loss of their memory, helping them enjoy the things they can do is positive for everyone. Given.

Best wishes for a Happy Thanksgiving.

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Memory Loss is Normal for Older Adults (FALSE) … so WHY get tested?

First, Memory Loss is not normal as we age and is something you should discuss with your primary care physician if you notice it in yourself. There are several reasons why someone may have memory loss and many of them can be reversed. If you don’t pursue testing you will never know if your (or a loved ones) issue can be treated, slowed, reversed.

What is normal is slower processing speed. Our brain processing speed slows down generally at 50, but we should still be able to retrieve the information. If you believe you have short-term memory issues, speak with your primary care physician and request a visit to a neurologist for an evaluation if you don’t find a cause.

Understanding if you have a form of dementia can help you know if there are trials or treatments, as well as better plan for the future. It is also valuable to family members to know if and what form of dementia a relative may be diagnosed with.

I’m writing this as I am waiting for a client who is going through neuropyschological testing right now. Halfway through we shared lunch and she asked why she is bothering with this test since “memory loss is normal in someone my age.” We had a lively conversation around her believe that memory loss was a normal consequence of aging.

When she was losing her checkbook and couldn’t find it, ordering new checks and not recalling that she did it, and sending off money over and over to a friend, I asked her if she recognized she was having some issues with her memory. She said yes and she actually mentioned it to her primary care physician. He recommended she get a blood test, MRI, and neuro-psychological testing.

So here we are.

What I do know is that the testing was invaluable to me as the primary family caregiver for my parents. It helped me better understand the gaps in thinking for their different types of dementia (vascular and Alzheimer’s). I was able to attend the reporting session and what I learned help me realize that I was going to have to change because in all reality, my parent’s thinking was very different than it was previously. How they processed, and even recalled information had changed.

It also helped us understand how long they might live, and the type of care they were going to need.

For me, knowing was better than not knowing. I know everyone is different. Shared.

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Use It or Lose It Applies to your Memory Too

I have three clients all with Memory issues that have shown a noticeable uptick in their engagement and activity. Unfortunately, it isn’t all of them so I started to see if there was any patterns that applied to all three.

In the past one to two months, all three of them have had more social engagement. They are all widowed, and live alone. None of them had previously had much social interaction due to giving up car keys, moving into a new community, or even just because for the last year they were giving care to a loved one.

When you visit with them, initially you may not even notice they have any short-term memory issues. However, if you try to have a longer or deeper conversation with them, you quickly recognize they have some memory issues. Due to changing circumstances, all three of them have had a lot more social interaction and I think that has helped them in a variety of ways.

I have noticed it in their activity, spending, and in my direct conversations with them.

Memory loss is not a normal consequence of aging. Our brains still produce new brain cells. However, once we hit 50, there is a slowing down of brain processing which we usually equate to memory loss. Eventually, you should be able to recall information, but it just takes longer.

However, we must remind ourselves that just like muscle-strength, we need to continue using our memory skills and engage in activities that stimulate our brains. It’s why I am afraid of the traditional concept of retirement and am often day-dreaming about how best to age, enjoy life, and stay engaged in meaningful ways that will challenge my brain.

After seeing this anecdotal result, I believe that every person needs to have some form of meaningful social engagement several times a week. For many older adults who want to age in place, managing this if they live alone can be a bigger challenge. In general our friend circle may be smaller and it might be harder to visit if we are no longer driving.

The answer on how to get more social engagement will vary for everyone but most communities have senior and community centers that offer ongoing classes and exercise programs for opportunities to make new friends. However, step one is to help us all recognize that your brain is a use it or lose it muscle we all need to work on continuing to stretch. Witnessed.

If you have a loved one in this situation, can you:
– Find local classes where they might meet a new friend (senior centers, community centers, and community colleges are easy places to start)
– Connect them with a local “village” that works to connect neighbors and offer both social engagement and help around the house
– Encourage them to look at moving to an adult community be it 55+, a condominium or apartment, as well as a Life Care Community
– Look at AARP that often offers a variety of social events in your community — if you are a member you will get mail or you can also download their app that features local events that are usually free
– Have friendly visitors come to the home to take them out or have a lively discussion at home about topics they love.

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Just because I’m having trouble with my short-term memory doesn’t make it OK to exclude me from discussions about me

I’m writing this post recognizing that I’m really kinda angry. I know I can get a little “righteous” but I’m seeing families work around their loved ones instead of with them.

I know often, it’s easier to to just do things for someone. Please imagine how you would feel if you suddenly found yourself on the outside when choices about your health and finances were made for you?

Maybe you had a discussion about the topic, but for someone with short-term memory loss they won’t remember that, so are there other ways to help include and remind them of the discussion and decisions made? A notebook, email or texts?

I’m working with a new client and she told me she went to the bank to get a copy of her last statement and her daughter and POA had changed her statements to paperless. She knows she can’t recall the amount of money in the bank and is having trouble managing the finances, but I could only imagine how awful it would make me feel if my loved ones were doing this around me. To be fair, they may have had the discussion and she didn’t remember. However, she was expressing how frustrating it was to be left out. She can still make good decisions and had managed to care for all these things for more than five decades. She wants her daughter to help her do it, not take it away from her and manage it for her. Short-term memory loss on it’s own doesn’t mean you can’t make good decisions or understand their consequences.

Don’t discount your loved ones ability. It is their life and if you love and respect them, assisting them when they need help navigating difficult choices is how you can show it.

I know I didn’t do this well when I started to help my parents. However, now that I have worked with so many families and individuals with varying stages of mild cognitive impairment and diagnosed dementia’s, I see a how devastating it can be to suddenly lose so much for the individual with a memory issue.

For those individuals just starting out, I always talk about us working in tandem. I will help with them organize and schedule, and they will review the bills and sign the checks. Usually, by the end of our first meeting they are breathing a sigh of relief. They see they are still involved and have control, and now have help to manage the components of paying their bills that was challenging.

You can apply this to the scheduling of medical appointments and follow ups as well.

Walk alongside, support and give your loved ones the opportunity to be involved. You might be surprised how much better things can progress when you do it together instead of “for them”. Advocated.

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What I Wish I Knew When Dementia was Diagnosed: Find Joy in the Journey (#3)

journeyjoyThe last of the three things I wish I knew when my parents were simultaneously diagnosed with dementia was how important it was to find joy in the journey for everyone.

The care aspect for me, unfortunately, eclipsed my recognition that my time would have been better spent enjoying my parents. I spent a lot of time managing medical appointments and follow-ups, and I wish I would have instead used it to take Dad to a movie, or play cards with my Mom.

My parents thankfully had the means to pay for me to bring in an Aging Life Care Manager, but at the time I didn’t even know they existed. What I do know is that once I finally learned and recognized how they could help, I had already spent weeks of personal time trying to manage medical issues for my parents who could no longer be their own advocates.

After bringing in an Aging Life Care Manager, I saw how they could find a solution or resolve an issue that was taking me hours to troubleshoot. They are typically social workers and Nurses who are trained and certified experts in aging well.  You can search for one in your area here. 

I still remember the ache of missing my parents when they were sitting in front of me. The dementia had changed their personalities and behavior but often glimpses of the parent I knew would shine through.

There were hilarious and devastating moments.  I learned how to laugh and bring my parents in on the humor and worked very hard to shield them from the moments when my grief would bring me to tears.

You don’t know what you don’t know (and I certainly didn’t at the time). I hope my three wishes can help better serve you and your loved ones after a diagnosis of dementia. Refected.

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