Tag: adapting to dementia

Yes, And …

It took me a while to adapt to how best work with my parents and support them through Vascular Dementia (Mom) and Alzheimer’s (Dad).

My Dad got quieter, and my Mom grew suspicious.

I participated in a program recently and our trainer discussed how using the simple sentence starter of “Yes, and …” can help validate the person you are speaking with and help create a collaborative solution to what that person just told you. It was a general business training … not one for caregiving, but I immediately saw the value in how it might help me work better with my clients and loved ones.

I’ve already used it with a client diagnosed with dementia and it has been a helpful tool to manage through some conversations that could create fear, suspicion, or worry.

As an example, here is the conversation I had with a client who has a broken front door that we are in the midst of getting repaired. While it is still minimally functional, we want to keep it closed, locked and use it as little as possible. It is possible that the handle breaks and we won’t be able to keep the door closed … or lock it. The homeowner is ignoring the note that is posted on the door and using it to let in cats and visitors.

When I mentioned the next step for the repair, he commented that “The door has always been this way. It’s alright if I keep using it.” So I responded “Yes, it has been tricky to use for several years, and the last time we got it fixed, the locksmith said if it fails again, we will need to get replacement parts. Until they arrive, we need to keep it locked and use it as little as possible. Can you help me make sure that happens?” He answered “Yes” in response and we talked through how to best do that (update signs on the door and a note to the next few days of visitors). I let him know I would help communicate the door issue to the rest of his care team visitors.

Together, we came up with a solution on how best to move forward that we both believed would work. Solved.

Savoring Your Time as an Adult Child

I had a conversation today with a woman who is a Certified Caregiving Consultant named Bobbi Carducci. She and her husband Mike cared for Rodger Carducci (Mike’s father) for 7 years. Bobbi and Mike host thought leaders on their weekly podcast who share invaluable insights and helpful tips on the challenges caregivers face.

It’s easy to look back on your time as a caregiver and imagine all the places you could have managed differently. I let that baggage go in the middle of my own caregiving journey because I wanted to keep moving forward. The second-guessing of my choices started to paralyze me.

Today, I can freely admit the one thing I wish I had done, and considered, was how to better be the daughter. I spent countless hours of my time in my parent’s community chasing down medical team members, making calls about insurance, banking or tax matters.

I wish I would have used that time to just hang out with my parent’s.

Thankfully, my parent’s had planned well and had the resources for me to hire these individuals. Maybe the additional interaction with others would have also provided them with more engagement. I will never know, and can’t change the past for myself, but I can share with you now how I look back on my time as the primary family caregiver.

You don’t know what you don’t know. Trying to figure it out is exhausting. You can start by listening to a few episodes of Bobbi and Mike’s Podcast Rodger That.

I frequently and adamantly recommend you schedule a call* with a local Aging Life Care Manager. In minutes they can help you navigate the maze of medical options and choices for your loved ones. Lastly, if you need help figuring out how your loved ones finances are structured, or if you have concerns about fraud or abuse, contact* a Daily Money Manager. Encouraged.

* Please use the tools on the sites to find these professionals to INTERVIEW them and make sure they are a good fit for you and your loved one. Some people like high-energy while others find a calm demeanor a better fit. The best place to start is to ask your Estate Lawyer, Financial Advisor, and even your Accountant. They will most likely have other clients who have used these resources.

Helping Celebrate the Important Life Dates

My parent’s got married 67 years ago today. When I was the adult family caregiver, I worked to find unique and fun ways to celebrate with my parent’s when they could no longer plan or manage these life events.

I went back to read my post from 7 years ago, I openly admitted that slight effort felt overwhelming to me at the time. What I recognize now is that I didn’t have to manage everything. I could have asked a sibling to help, but none of them were local which brings some extra hurdles to both financial and medical task management. (I recognize I’m still making excuses for not giving up CONTROL ; > )

Celebrating 60 Years of Marriage

What I learned on the journey was that there are resources that I could have hired to help manage the medical needs of my parents (Aging Life Care Managers), and handle the day-to-day finances (Daily Money Managers).

What I regret now that both of my parent’s are gone was that I didn’t focus on being the daughter and find the joy in planning and celebrating these events with my parents. I got mired in the management and coordination of their care and finances. If I could do it again, I would manage things differently.

On their 60th anniversary, I did enjoy a nice visit. At this point they were in a two room apartment in Assisted Living. We had all dreaded moving our parents from their 3-bedroom apartment in Independent Living just a few months prior, but the community said we either moved them into Assisted Living or they would be moving them out of the community.

My parent’s were so happy with their new, smaller apartment. Neither myself or any of my siblings would have believed this to be true until we witnessed it.

I noted on this day we talked about how few couples make it to their 60th wedding anniversary. My Mom shared how lucky she felt they made it this far and was with their current life. At this point, both of my parents were living with dementia that was progressed enough that they could no longer manage their daily activities without assistance and cueing.

I’m honored I was able to celebrate this day with my parent’s. I hope you are able to find the joy when they are still on this earth here with you. Reflected.

Help with Healthcare is a Great Place to Start

Staying at home has given me a lot of time for Spring Cleaning. I finally went into the last box of my parent’s papers this weekend and found this note from my Mom.

When my parent’s were still coming over for dinners on Friday and we recognized something was amiss, but were unsure what, my Mom asked if I would join her for the annual physical. She had mentioned that they were having trouble keeping up with the medicines and she was worried about my Dad … would I join? This was the note she gave me summarizing all of their medications. I attended and sat quietly and watched as concerns were raised and then mostly dismissed.

Within a year, my mom had a minor stroke and she readily accepted my rides to the doctor. However, this was the beginning of the trouble in some regards. My Mom was in disbelief that she had a stroke, and started to challenge that I was making it up. She began to debate me on the way to the appointments when I would simply report that we were going to see the neurologist. When she asked “why” and I reported it was because of her stroke, she would guffaw in disbelief. At the appointment, she argued with the neurologist. Good times. ; <

I wish I had know about Anosognosia. From the Stroke Connection: “Anosognosia (pronounced an-a-sog-NO-sia) refers to a person’s lack of awareness of their own motor, visual or cognitive deficits. It can happen in people with stroke, traumatic brain injury, multiple sclerosis, Parkinson’s disease, Huntington’s disease and Alzheimer’s disease.”

Looking back, I realize that even just stating that she has a stroke created an emotional response in my Mom that left her feeling like I did not have her best interests. She became very protective of her information and in return, insisted that she could manage her own affairs.

I learned over time that my parent’s responded with emotion to information or events. Any information citing they were unable to manage their own health and welfare pushed them into a defensive mode. If I arrived for a visit stressed, they would absorb my anxiety and we would have a terrible visit.

During this time my siblings and I watched as:

  • Their licenses were revoked and they continued to drive their cars;
  • They failed to pay their bills regularly and ran into issues with water and electricity;
  • Ultimately, their retirement community threatened to kick them out if they would not move from independent into the assisted living community.

I was ready in the wings when it was time to act, but it was more than two years before I was allowed back in to help. When I did re-enter I had learned a lot about how best to support and respond to my parent’s needs.

The current state of affairs may be a bridge that opens to invite you in to help. While many families are isolating themselves from their loved ones to protect them, others are including them in the shelter in place orders.

May you and your family find peace, joy, and common ground on which to move forward. Wished.

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.

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.

Shining through a dementia diagnosis

A recent photography contest awarded three winners for their self-portraits. All of the contestants have dementia or Alzheimer’s and was organized by the Bob and Diane Fund.

demenitaphotowinner
Elia Luciani’s self-portrait from a mirror on a dresser covered with family photographs. (Elia Luciani). Please make sure to check out the photo behind Elia in her self portrait.

As I poured over the image, I immediately broke into a laugh when I saw the portrait she has hanging on the wall behind her. Not only is family an obvious piece of the photographers sense of self, but I have to assume that is her with her hands above her head making a silly face in a similarly set-up self portrait by someone else … maybe even a husband.

I savored the moments when my gracious mother shined through her dementia. There were days when she immediately knew me and would talk about the family, or reflect on what my dad would have said if he were still alive about something fantastic in my life that I shared with her. She wasn’t able to ever perceive her cognitive loss, but just knew that “her brain was bad.” I missed her terribly when she was alive, and that loss carries on with me now that she is gone.

I hope you will take the time to view the winners and honorable mentions. It’s inspiring to see how many are living with, adapting and shining brightly after their diagnosis of dementia or Alzheimer’s. Awed.

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.