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When we can’t find the right words …

Cole&PoppopYesterday was my son’s college graduation. As I drove up, I struggled to shake the feeling of loss that swept over me as I faced another big event without my parents. Since they both battled different forms of dementia, it is a blessing they are no longer on this earth, but how I miss them being able to celebrate another Engineer in the family bloodline. My Dad and Cole always ended up in giggles when the two of them got together and he would have reveled in the graduation. 

As I sat at the ceremony listening to the Valedictorian, it became clear that no matter what your age, education, or beliefs, we are all struggling to find the right words to enter into civil discourse. As she and her classmates are preparing to continue their quest to make our world a better place, the things she shared with her peers felt immediately valuable to me as I work with many who have lost the ability to handle the complications of balancing a checkbook, negotiating a contract, or even planning a meal.

The added complexity in helping a loved one is that there are the familiar habits and patterns that may put your assistance out of the realm of ‘normal’ and cause discomfort. The best way for me to start a fight with my Mom was to ask if she wanted help with the bills and the checkbook. She didn’t sense any short coming in her abilities so my words felt like a betrayal when I reminded her of the missed water payment or the fact that she signed two contracts for the same home repair with two different vendors.

 

“Approach with humility and a desire to understand,” suggests Kate Hill. Give ‘space to silence’ and ‘don’t lock the doors’ — two ideas that I think can be applied simply to the role of caregiving.

I know the impatience I felt when I was working, raising two young kids, and also trying to help out my parents. I wanted to just take over and get things done. I needed to allow more time to cross the item off of the task list and include them in the process. So too must we apply this same approach to problems we are facing in our communities, states, and country. 

When our loved ones are already losing so much, the last thing we need to do is to add to the list of losses. I’m excited to see what this generation will do for all of us and appreciate the on words she used to suggest how to be better citizens, friends, colleagues, parents, children, and caregivers. Impressed.

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Lying to the ones we love.

Two things that should be a part of every caregiver bootcamp:

  1. An introduction to the medical reality that our loved ones may not be able to recognize that they are having cognitive issues. It’s called Anosognosia and if someone in your life has had a stroke, or been diagnosed with dementia it is something you should understand. The individual is not purposefully dismissing you as I thought of my mother. I assumed she knew something was wrong but decided to ignore it and dismiss my concerns. However, the reality is that most likely she really had no idea that she was failing cognitively. One report cited that a “categorical diagnosis of anosognosia was made in 42% of patients with mild AD” (Alzheimer’s Dementia). Another report cited that over 80% of those diagnosed with varied dementia had anosognosia.
  2. There are times when honesty is painful for everyone when a loved one has dementia. When my mom wondered when Dad was coming home from the hospital, I initially walked her through his death and how we were all surrounding him. I still puddle at the memory of these conversations and it’s been more than five years since I had them with Mom. She relived the pain as did I. Why didn’t I just say that he would be home in a few days? I had a fixed belief that honesty was the best policy … but there were many times when it didn’t serve my Mom.

I wish I had learned and understood this much earlier in my journey as a family caregiver. It will take some time to understand and adapt. However, being armed with this information can help you be a better care partner.

When I finally learned this information and how to apply it, I promised myself that I would tell the truth once and after the initial conversation would find a kinder way to respond to Mom’s questions or demands.

Once I learned how to change, life for both of us got better. Shared.

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Giving Back the Checkbook

You know the feeling of helplessness when you don’t have any cash in your pocket and the thing you want requires cash? Well imagine if your loved ones took away your ability to buy things when you feel like you are making good choices?

In my job as a Daily Money Manager, I work for individuals who have usually been diagnosed with mild cognitive impairment or even a specific form of dementia. Usually, at the request of a family member they call and invite me to come meet. They don’t understand why the family is concerned.

I start by asking them how they feel things are going. The response is usually more of “I am managing” and then they usually confess they know they have made “a few over/under payments.” I explain how my job is to help them feel confident in their bill payments and cash flow management. Ultimately, I work to help them feel empowered by continuing to pay bills together.

If I see there is a big concern over exposure to fraud or predatory service providers, I will set up a new checking account. It allows the individual to have a checkbook but the amount of money that is at risk is limited to the money in the account. NOTE: Do not set up overdraft protection but allow the checks to bounce.

A second option is the TrueLink Card. It is basically a funded gift card that you can apply protections too like turning off the ability to charge fees for jewelry, liquor, or phone charges (there are over 20 categories you can tweak). You can see what has been purchased. It does has some complications and limitations as I have seen. One client has had the card fail when he was trying to buy a watch battery (deemed as jewelry) as well as was not able to get his favorite local cheese at the Farmer’s Market because they were using a portable pay device (deemed as a phone charge). I have been able to customize the options and pre-approve that favorite cheese vendor, but when he is at the market, he needs the card to work and it doesn’t always.

At the end of the day, what we want is for our loved one to have meaning and purpose and often, taking away the money can strip them of some independence they deserve.

Is there a way for you to give back that power to a loved one and help them regain a sense of self? Hoped.

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How often is a Doctor Available?

As the primary family care partner for my Mom, I was often taking her to a variety of medical appointments. While both of the communities she lived in had visiting doctor’s, they usually were unable to see her in a timely manner or did not have the type of expertise needed. For instance, after a fall sent my mom to the Emergency Room with a goose egg sized lump on her forehead, we were told we would need to schedule a visit to an Ear/Nose/Throat specialist. For that we needed to travel to a local provider.

A story in The New York Times, Where There’s Rarely a Doctor in the House: Assisted Living, dove into this topic and it is worth reading if you are in the process of looking at a community.

Getting to medical care can be both a time and monetary issue to manage for loved ones that are not addressed by many Assisted Living Communities.

The current communities are having to adapt to the changing demographics and health issues. Most of the Life Care Communities planned on having their residents span a few decades and start moving in when they were in their 60s.

Today, the average resident is over 85 and 70 percent of them have some form of cognitive issue. The community did not plan for their residents being unable to manage their own medical care needs due to cognitive issues. On top of that, there is a cost to get the resident to a doctor in both terms of staff time and transportation. In the metro-DC area, a trip to the doctor for just the transportation averages $110 and this is for individuals who can walk.

When you are visiting, be sure to ask how they deal with the minor health issues like a cold or flu. Do they have regular visits by a doctor and how often? What types of doctors visit? Most communities are going to be unable to handle these issues but it’s better to know before you have an issue than learn about the advocacy and transportation needs after you have made the move. While you may still need to leave to get to a specialist, it is helpful to know they have a robust option for on-site medical care for many of the minor issues that may faced a loved one. Advised.

P.S. Ask to speak with the families of other residents and ask them to share how they have found the doctor. One reader reminded me that you may need to verify what the community sales person tells you.

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The road is rocky for all the travelers.

I remember the moments of joy when things felt normal. Whether it was taking a walk on a nature trail or having a conversation in which my mom shined through.

I also remember the moments when the loss was so noticeable I had to leave the room to avoid puddling into tears.

I was the daughter. I can only imagine the intensity of loss with a spouse. Finding a way to manage the journey for everyone is the most difficult challenge for both those diagnosed and those acting as care partners.

It’s easy to get distracted by trying to reach for a destination, but as I learned, I needed to be in the moment, not charting out what’s next. That can be difficult in our world that has evolved to an “always on” mentality. I still have to remind myself of this with my friends and family.

This is just a note to be kind to yourself. I made many mistakes, and most likely, you will too. However, there are many individuals that have no one by their side helping them. It’s not an easy road and your loved one is lucky to have you on this journey with them. Be kind to yourself. Reminded.

Be Kind to Yourself.
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Named a Best Alzheimer’s Blog 2019 by Healthline

It’s nice to get recognition. For a fourth year, Healthline has selected Dealing With Dementia one of the Best Alzheimer’s Blogs. I started this blog for many reasons. One was to provide my siblings with insight into the issues I was facing as the only adult child living near my parents. But then it became a way for me to digest what was happening and dissect how I was dealing with it. I have lots of “mea culpa” blog posts. Turns out I finally figured out I learn by doing and I made a lot of mistakes.

Since I’m not one to miss a golden opportunity, I will use this to remind the readers that Alzheimer’s is just one of the five primary types of dementia’s — as shown in the image. It is the most common based on the number of diagnosed cases, but I also know that many individuals are never diagnosed.

Its been more than two years since I cared for a family member with dementia. Today I work with a variety of individuals and families who have been diagnosed and continue to learn how to be a better care partner.

For a full list of the winners, You can visit Healthline. I am honored to be recognized again for this honor. Encouraged.

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Integrating into a Community is a Common Challenge

The topic of when to move and why is a common discussion as our parents are aging and our friends are starting to discuss downsizing. In general, most people want to stay at home. However, there are quite a few issues to address from predatory service providers, socialization, and fall issues.

70% of Assisted Living residents have cognitive impairment making it hard to make new connections.

The issue that concerns me most are the single individuals living at home who don’t consider how long they might go without someone knowing to call for help. I have heard too many personal stories of loved ones being on the floor for so long it creates an open wound (this can be in just hours in an older adult) or another complication develops that radically changes their health. A wearable pendant with a push button won’t help someone who has a head injury so I also ask those individuals to consider the ones that will call you if a fall is detected. Unfortunately, you may find you are getting called more than you would like, but too many calls is better than zero should you need assistance.

However, I also have a dear client who moved into a community and I see how hard it is for her to make new friends. It’s clear to me that she has lost some short-term memory which can make it difficult to form new friendships. A recent news I read cited that “70 percent of residents have some degree of cognitive impairment” in Assisted Living communities.

With the average age of most Assisted Living communities in the 80s, it’s no wonder that the transition can be more difficult if the majority of the residents are unable to make new friends.

My mother who was the ultimate hostess and always taught me how important it is to make the new person feel welcomed had a very tough time connecting with the residents in her community. As her dementia progressed, she was unable to make connections. The hardest thing to witness was how much the other residents in Assisted Living avoided those with cognitive issues. I get it, but still don’t like it. I think because I have cared for two parents with dementia, I will always be sensitive to the isolation that they must feel and will make an effort to connect. What I don’t know is if my own cognitive changes might make me less compassionate when I’m in my 70s.

So now I’m wondering if moving earlier is better for the individual so they can develop new friendships and be more familiar with the community before they reach the critical time when living at home is just no longer an option due to safely issues or the costs of bringing the care needed to you. I wish there was a better way to determine what is the best option. For now, I think we all work to find the best options for our individual needs Wondered.

I’d love to hear what your family did or how you are making these choices. There is no right or wrong answer I don’t believe.

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