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.

Dealing with Dementia in the Family

I was interviewed about how to deal with dementia in the family and how to prepare for the worst on Profit Boss® Radio with Hilary Hendershott. What I failed to mention was that helping your loved one maintain purpose and meaning maybe the most important consideration.

It was posted on the anniversary of my parent’s marriage. I was the primary adult family caregiver to my two parent’s who were nearly simultaneously diagnosed with vascular dementia (mom) and Alzheimer’s (dad).

There are many things to know and consider if you have a parent with dementia. Recent studies continue to promote that:

  1. Be physically active and enjoy regular physical activity. Cardio helps both mind and body.
  2. Consider following a mediterranean diet and eat healthily.
  3. Don’t smoke.
  4. Drink less alcohol.

I believe the MOST IMPORTANT element is to consider your brain a muscle you need to exercise. Meaning and purpose and working toward a task and goals is a great way to exercise your mind.

You can hear the interview and some simple tips on how to navigate this phase of life if you are facing this situation here. Shared.

High Blood Pressure and the Increased Dementia Risk

Untreated high blood pressure is linked to an increased risk of dementia. Taking medication to lower your high blood pressure can reduce the risk of dementia. If you have been diagnosed, it could slow the progression.

Someone in my life who I dearly love has been diagnosed with mild cognitive impairment and has chosen not to take medication that will treat her incredibly high blood pressure. She is brilliant, curious, and didn’t like how it made her feel after a few days so she stopped taking it.

I understand pill aversion and I am guessing I might be on that side of the fence when it’s my turn to start taking medication.

If you are a logical person and you know that:

  1. Taking high blood pressure medication can reduce the risk of dementia;
  2. Once diagnosed, taking high blood pressure medication can slow the progression of dementia;

…. shouldn’t you work to find a high blood pressure medication that works for you?

Ask your doctor for a different option is the one you took made you feel different.

I can only imagine how a diagnosis of mild cognitive impairment and dementia may feel. I do see how many things seem to be taken away and life changes for the dozens of clients I have worked with over the years. I understand the feeling of loss as well as witness the inability to understand the impact of dementia on an individual’s ability to manage (Anosogosnosia).

What I hope is that I will find a way to help the person I love reconsider their choice because it could lead to a devastating impact should she have a stroke. It will also put the health of her husband at risk since caregivers often predecease the person they are caring for. It is not my choice to make, but I do hope information can help. Doing nothing in this case actually seems to me to be the worst choice.

However, I was told “It is an act of love to offer the compassion & love for another’s journey without enforcing your own judgement & viewpoints.” And that I will do. Tried.

Research from the NIH National Institute on Aging published in December 2019 reported “Treating high blood pressure with medication not only improves older adults’ cardiovascular health, but also can reduce their risk of dementia and Alzheimer’s disease, according to a thorough examination of long-term data from four countries.”

If someone has already been diagnosed Johns Hopkins Medicine reports “… if you didn’t have Alzheimer’s and you were taking blood pressure medication, you were somewhat less likely to develop dementia. And if you had dementia from Alzheimer’s disease and you took certain antihypertensives, the disease was less likely to progress.”

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.

What’s the best option now for my Mom with Dementia?

Everyone is growing stir crazy and the news seems to be so varied. I’m wondering how other families are navigating care.

My clients that have been aging in place either shut out all caregivers and have been managing on their own, or supported by hand-picked caregivers. The others that live in communities can’t leave without agreeing to a 14-day quarantine when they return — even my one client that had and survived covid-19.

I wish all generations grow old as magnanimously as the Silent (or Greatest) Generation. They are not complaining, but do look forward to regaining the ability to get out of the home. Many have shared this isn’t their first pandemic.

In both cases, it has been really tricky to close the gaps on those things that the family and the rest of the care team worked to smooth over. It’s given us a lot of new challenges to rise up to meet.

If covid-19 is now a regular part of our lives, how do we best manage to keep our loved ones at home, engaged, and supported? Some things that seem to work include:

  • Having select caregivers live in the home who are following social distancing guidelines (wearing masks out, avoiding crowded locations, washing hands frequently);
  • Minimizing outside services and vendors from entering the home and when they do taking the right precautions;
  • Layering in outside engagement with visits that occur outside;
  • Investing in new technologies to test to offer some additional engagement (Zoom calls, Alexa).

For my clients in communities, several of them are getting options and engagement which is a positive. Their biggest complaint is the limits on family visits (outside a window or through a plastic partition) and their ability to leave even through they know restaurants were not open and the grocery store was an adventure until itself.

Now that many states are reopening, and we know they are the most vulnerable population, how do we manage forward? These are a few things we are working through, what is your family doing? Asked.

The value of multigenerational family living $$$

For twenty years, my Mom told me she never wanted to live with her children. They bought into a Continuing Care Retirement Community (CCRC) also referred to as “Life Care” Communities so they would “never be a burden” to their children. For those of you that have seen the first few years of my blog … helping my parents was a very complicated affair. I won’t say it was a burden, but we could have done it way better had we not tried to directly follow my Mom’s wishes.

I’m going to first share the cost of their care using the CCRC.

Non-refundable deposit to get into the CCRC $500,000 (1999)
This was in 1999 when that was how it worked.

Annual “rent” for their Independent Living apartment $ 38,400
This was the average cost from 2000 to 2012 for a total of $499,200.

At the end of 2012, the community required they move from Independent Living into the Assisted Living community. These were their “discounted” rates for their community since they paid the half of million to move in.

Annual cost for Assisted Living (for two) $117,600 (2013)
Dad passed away in 2013.

Annual cost for Assisted Living (for one) $ 94,800 (2014)
Annual cost for the required personal care
assistant for my Mom $ 98,208

Assisted Living was not the right place for my Mom with dementia. The residents didn’t want to eat with my Mom would couldn’t learn their names and my Mom stopped going to the dining room for meals. As you may know, there is no kitchen in Assisted Living and my Mom was unable to prepare her own meals. She became very agitated and so they required we hire a personal care assistant for 12 hours. The memory care community in the CCRC was only for end-stage individuals with dementia so neither the Assisted Living or the Memory Care were the right fit. We made the choice to move her to a Memory Care community outside of their “Life Care” community. So much for the HALF A MILLION they paid to move into this community.

Annual cost of Memory Care community $ 81,600 (2015)
Annual cost for the necessary personal care
assistant for my Mom $111,600

My Mom was unsteady on her feet after a medication put her in a state of delirium in 2015. She kept falling and ending up in the Emergency Room (ER). We hired someone who could help her use her walker and assist her and keep her out of the ER.

So at the end of this journey, my parents spent over $1.5 million. They saved and invested well so they had the money to pay for their care. But knowing what I know now, we could have used that money better to manage the last fifteen years of their lives.

As I sit here today with many of my clients in communities cut off from family and at a higher risk of getting covid, I realize I need to start having a discussion with my children. When we or one of us needs help, I hope my children will be able to make the best decision for us at the time they need to make it. No preset conditions because our world and how we will care for older adults is also changing.

For $1.5 million, I would have preferred to have a home where my parents could have lived with us, but still had the freedom to be independent. When they needed care, we could have arranged to bring it in. Thankfully, our community has gobs of ways to stay engaged and active and we could have used that money to pay for the personal care assistants to help them lead their lives when they needed it.

From 2012 through 2015, I was spending more than 20 hours a week helping them in one form or another. The last three years of my Mom’s life cost over $500,000. Had she been living with us, I could have spent more time being a daughter instead of a family caregiver, bill payer, medical support and care manager. I now know how to bring in the support to help fills these roles and that would have been much less expensive and I believe more joyful for me and my Mom.

This is the first time I sat down to add it all up. What I do know is that the current care solutions, whether in their own home or in a community, are not ideal for most of my clients right now. They are all very isolated and we don’t see this ending any time soon.

The reality is that things change and what is important today, may not be important tomorrow. So leave some space for adaptability.

Might it be time for us to move back to multigenerational homes and return to a personal model of caring for our loved ones? Advocated.

Aging in Place and Covid

We are all looking and finding silver linings to Covid where we can. I believe we will see a leap forward in the coming years on how we care for aging adults.

Third visit by Emergency Services for my neighbors in one day.

I’m seeing the many ways the current systems are failing older adults who are “aging-in-place” in their home and the independent living section of their Life Care communities.

I have watched as the Ambulance and Fire Engines have come and gone from our neighbors who have recognizable cognitive issues. One neighbor has been in contact with the son, but as I know from being the daughter, there is little you can do to help your parents when they believe they are managing just fine on their own. Our neighbors now have a host of caregivers around the clock which has slowed the calls for emergency services, but now puts them at a higher risk of getting covid since a variety of different caregivers are arriving, who are also working with several other families.

My client who has two full-time caregivers in her Life Care community has been coerced by one of her caregivers to demand some financial changes that have triggered a guardian petition by her family. No one but her caregivers have been allowed in the building for over two months.

Whether it is a matter of safety or dignity, both of these scenarios have put these older adults at risk for things on top of all the other issues older adults face to aging well.

Ultimately, as someone who is employed to manage the daily finances , I see the risk to their financial security.

We just don’t have a practical solution to address the need to:

  1. Maximize personal dignity.
  2. Compensate caregivers living wages.
  3. Provide affordable options that address the health and financial risks of older adults.

I have a few clients with mild cognitive issues that I’d love to pair with a young adult that would benefit from a reduced rent and could provide general support and companionship. Maybe now is the time to test this out.

It doesn’t eliminate the need for caregivers, but maybe the way in which we use and provide caregiving needs to change.

I’d love to hear from those of you in the midst of managing and caring for loved ones in their situations. Is there a way you think this would be a beneficial option for your loved ones? Queried.

Top Resources for Dementia Care

I started this blog to keep my family and friends up to date on my caregiving journey and primarily to avoid having to tell the same story over and over. I quickly realized it was a great way for me to digest and analyze how I could be a better caregiver. I started to include some practical solutions to common situations.

Today, I work with adults diagnosed with dementia and their families and continue to learn and navigate the caregiving journey.

This year is the fifth year this blog has been named to Healthline’s list of Best Alzheimer’s Blogs. Check out the list of winners and find a host of valuable resources. You don’t have to figure this out on your own. Those of us walking this journey are more than happy to help. Believed. 

Alzheimers-best-blogs-2020-1200x628-facebook (1)

 

Managing Medication and Pill Aversion

There seem to be two kinds of people in this world. One that uses medication and appreciates the benefits, and the other that has a general aversion to taking medication.

I fall in the second category and was happy when the one prescribed medication I was taking (a baby aspirin/day) fell out of favor. Well, I suppose there was the science to it, but when my doctor said to discontinue taking it, I was happy to comply.

I see many people struggle with medications, including those with no cognitive issues. I think it’s too easy to miss a dose and think pill caddies are helpful solutions.

A reader asked if there were any simple books for medication management for someone diagnosed with Alzheimer’s. While I’m not trained in health management, from the brain health training I have done, I do know that starting a new habit is difficult for someone diagnosed with any form of cognitive issue, include all dementias.

The bubble packs are dated and have time stamps that are easy reminders to follow and track.

There are two simple options to help manage medication as well as see if and when someone has missed a dose. The first is the pill caddy and the second is bubble packs. For anyone with more complicated medication scheduling or a lot of pills, the doses are packed with dates and times and come on a roll or in a blister pack.

I always consider options that give an individual more control over their life. I think those two options are helpful in managing medication and provide simple cues on when to take and if a dose was missed.

For those that are averse to medication, but diagnosed with something that medication can prevent or abate, I hope family and loved ones will speak up and help the individual understand the choices they are making and the potential risk to their health. One of the entitlements of being American is that we are given the opportunity to make really bad choices for ourselves. However, when it comes to our health, sometimes our spouses, siblings, and friends need to recognize that someone diagnosed with a cognitive issue might be unable to make a reasonable choice. The act of not taking that medication might result in a need for a higher level of care or other health complication that requires medical intervention or nursing care.

I hope if you have someone in your life in this second category, you will at least share your concern and give them the opportunity to explain their choice. Once diagnosed with any form of dementia, I see many deal with loss after loss. They have lost friends who fell away, the ability to perform at a job they loved, and even just manage the simple act of cooking a meal. Is the refusal to take the medication one place that gives them a sense of control? Wondered.

Dementia and Covid

I think we all know that this experience will change how we live, work and play. For many of us that work primarily with older adults, we are seeing how some of the changes may make growing older better for all of us. I look forward to these changes with hope, even though right now, things are more challenging to manage as we adapt to physical distancing.

In the past two weeks, my neighbors and I have all realized that a couple living on our street is in dire need of support. The woman has been knocking on my neighbors door (she is a doctor) at all hours of the day asking for her to check her heartbeat. There has been an EMT visit (the man fell down the stairs), and someone also called the police.

The reality is that none of us can help someone who doesn’t want or recognize they need help. There have been calls to their son who at least helped them set up support from a home care service. There is only so much you can do for your parents who believe they are fine and decline help. The son lives states away.

Yesterday, the home care assistant didn’t know when the woman left the home. When my neighbor took her back home, the home care assistant yelled at her about leaving.

For those of us who are caring or have cared for someone with dementia, we recognize that while they may not remember a conversation, they do seem to hold onto emotions. I am guessing it won’t be long before my neighbors insist the home care assistant gets fired. Who wants someone coming into their home and yelling at them?

We are in a difficult time and many of those performing the duties of home care are not paid well and are putting their lives at risk. However, we also need to find ways to ensure the person in our loved ones homes are trained to help them and I’m afraid that some families are not getting the right support.

So what can you do if your family is in this situation?

  1. Randomly call your loved ones and even have them just leave the call with the line open* so you can hear what is going on in the home and how your loved one(s) are being treated … and how they are responding. If you hear something of concern, reach out to the home care agency and ask for them to address it with the caregiver. I cycled through a variety of individuals before we found the right fit for my mom.
  2. Contact an Aging Life Care Manager. These professionals are trained to help find the right care and be the onsite advocate if you are unable to travel to your loved one. They are not inexpensive, but when it comes to the service and support, I have found they are worth every penny.
  3. Move your loved ones in with you, or move in with your loved ones. There are a few families that have made this choice because they felt it was the best decision for them. This can be a huge hardship and commitment.

    Just know you will make the best decision you can with the information you have. Be at peace with the difficult choices you are and will be faced with. Your loved ones are lucky to have someone in their life watching over them when they need it. Reassured.

*Your loved one doesn’t understand your request? You could ask them to put down the phone and go get something, like an Aunt’s address or phone number because you want to send them a note. Be creative.

Tips to Organize Your Personal Information / A Loved Ones Information

There are many of us that have lived or are still living as a caregiver for someone with dementia. Lori La Bey who founded Alzheimer’s Speaks invited me to her radio show to discuss getting organized as a tool to help give more control to caregivers as well as a how to get it done and connect with your loved ones.

You can view the interview on YouTube, or listen to the podcast on blogtalkradio, or visit her blog that includes the video and many other resources.

It took me a year to get a handle on all of my parent’s information so I could be a good advocate. While your loved ones may not be able to recite the information, now that we have more time on our hands … I hope you might use it to connect with your loved ones who may need some help getting organized. Here is a free copy of a collection checklist and guide to what you need to save and what you should shred. Shared.