Whatever it Takes to Keep Our Loved Ones Safe

COVID frustration and fatigue. I am most frustrated that we don’t have clear information, guidance, and an understanding of what is safe or uniform protocols for managing the risk of spread. I don’t go anywhere without a mask because that much seems clear to me. I can’t fathom being the reason someone else is exposed to COVID.

Zoom and phone calls have had to do to stay connected with family, friends, and clients. Given the uncertainty, I’m gonna fall on the side of caution.

I know … I look MARVELOUS in a hair net.

I was happy to finally get to visit my client in person in their new community. During the screening process at the front of the community, I was asked if I had left “Virginia” in the past 14 days, I shared that I had been in Washington, DC — which is less than one mile from my home. It’s also less than 7 miles from the Adult Community I was visiting. Because I had been “out of state” I was given a hair net and a plastic smock.

I had never heard of these “covid precautions” but was fine to do whatever I needed to do so I could visit.

I’m a rule follower but find it hard to understand the rules. If it means it will keep someone else safe, I’m gonna do what is asked of me.

I hope you and your family are finding ways to stay connected and support your loved ones. I’m seeing how the isolation is impacting several of my clients and hope we have a clear way forward soon. Prayed.

A Quick Way to Ensure You are Well-Represented

When my parents health started to fail, I was the adult child that was local and stepped up to help. While my parents had planned well, what I needed was information on their accounts, the locations of their personal documents, and access to their online accounts to help reset codes and update account information.

While I wrote a book that will walk you through this process, I am happy to give you a summary of what you need to collect and organize so you can do it yourself. Having a summary of this will help your spouse, partner, and loved ones that will step in to help should you need it.

Every adult should have a Durable Power of Attorney. It gives someone the ability to step in for you and pay bills, and manage your financial affairs if you are unable to do this — even temporarily. We did this for my son when he turned 18, and I used it to file his taxes one year when he was traveling.

For those of you caring for someone, you know how important, frustrating, and necessary it is to have this document in place. What many people don’t know is how difficult and time-consuming it can be to have a financial institution recognize the document. Many couples don’t realize until, it is a problem, that being married does not give you instant access to a spouse’s account if you are not named on it.

In hopes of giving you a simple guide to organize this information for yourself, I am releasing this free download.

Get a free copy of this guide at http://www.MemoryBanc.com/POA

Feel free to share it with everyone you love. Offered.

Dreamwork Makes the Care Team Work

Caregiving was already hard, but I feel like Covid and the isolation has made things twice as difficult. I hope you are all managing to adapt and have resources and options to help best serve those you are caring for now.

So many things seem to go wrong and fall through the cracks. I have two clients that are alone in their homes and the effort and care of the team is the only way they can safely stay in their homes. These clients are lucky to have the money to afford these resources. I don’t think most people really understand that aging in place brings with it different costs that can be as much (and even more) than a care community.

I’m lucky to have passionate individuals on these care teams that contribute insight and truly care about how we can best serve their needs.

My Aging in Place Dream Team includes:

  • Aging Life Care Manager: Someone needs to be the lead on medical appointments, follow-ups and health care needs. I tried to manage all of this for my parents and wish I had brought them in sooner than her last year to help. I regret the lost time managing her health care needs when I visited her memory care community versus just being able to sit and spend time with her as a daughter.
  • Friendly Visitor: There are a variety of individuals who are able to engage, help, and guide through hobbies, shopping, and setting up and helping with Zoom calls to socially distant friends and family.
  • Home Care Team: Whether it is an individual or an agency with a deep bench, having someone that can help with the activities of daily living as well as ensure they are safe in their home 24/7 has been a necessity.
  • Daily Money Manager: Someone to pay the bills and manage the home maintenance.

In the past two months, we have experienced an Identity Theft (he gave his banking information to someone that he thought was Apple Support even through he has a Dell); a flooded apartment; phone service outage; a failed car inspection (he has a car that family can use when visiting that was his wife’s and is important to him); yard care needs (this rain has really helped the kudzu grow).

There are many handoffs and follow ups needed to keep the team in synch. We share a digital calendar for one client and the other one has 24/7 in-home care that updates the schedule of visitors.

For both clients we have talked about having them live in a care community. Right now it’s a hard transition with required 14-day isolation and difficult to decide to move someone into a care community where we know Covid wreaked havoc. We recognize that we are the ones helping them lead their lives in spite of all the Covid barriers.

The reality is that you will make the best choice with the information you have. I just realized how much I valued the team of individuals helping support these individuals in their homes lead the lives they had planned. While we are all feeling so isolated lately, I am happy to be part of these thoughtful care teams. Appreciated.

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.

After the Alzheimer’s Diagnosis: A Simple Checklist

Kate Swaffer who was diagnosed with dementia over a decade ago, and before she was 50 sent me a link to a story she wrote Diagnosed with Dementia: What’s Next? wrote back in 2015. I hope that one sentence shares the many ways that even after a diagnosis, there are years, and even decades of productive life — she was diagnosed in 2008. See the bottom of this post for links to her books for purchase.

In the hopes of making this simple, I am going to summarize and layer in some thoughts from other readers, and the research, on things you can do to help drive your future. For several tasks, I hope you will collaborate with loved ones who will listen, support, and follow through on the plan you are working to create. Creating an action plan early can help you feel more control, and provide the tools to those around you to feel confident that they are doing what you want.

Ask your doctor(s) for and collect the following:

  • Your diagnosis. You should get this information from the physician who made the diagnosis. What is it? What are some symptoms? What are effective symptom management techniques? What might you expect in 1 year, 5 years, 10 years? What changes might you expect and how might you address them?
  • Clinical trial resources. Because so little is known and we don’t have a cure, would participation in a study offer benefits to you physically and emotionally?
  • Referrals to local support groups, programs, and day-programs for engagement. Learn and ask your doctor(s) about staying engaged both physically and intellectually and it’s impact on brain health maintenance.
  • Is there rehabilitation that would benefit you? From Occupational Therapy (OT), Physiotherapy, Speech pathology, Walking/mobility rehabilitation, Dietician, Psychologist, Social worker, Specialised fine motor skill rehabilitation, to counselling, including grief and loss as well as support groups.

Create your own care plan based on the recommendations and discuss with your loved ones:

  • How to help. Make it clear to those around that it’s important they recognize you in meetings where your health, your assets, and your living choices are being discussed.
  • What you like. Do you like walking? Playing games? Going to Yoga? What are some physical activities that you enjoy doing. If you stop driving, is there a way to help you maintain this activities?
  • What do you want to be known about your diagnosis? If you are still working, how might you discuss and how do you continue in a job if you have noticed some of the symptoms of dementia are presenting in your personal and professional life?
  • Who do you designate as your personal/financial and medical advocates. They may not be the same person. While many people designate a spouse, you need to have a plan B since the spouse could very-well predecease you. Sorry, I know that is a little grim. : <
  • Would you be open to engaging in local classes, workshops, and programs knowing that exercise and engagement can help minimize your cognitive decline?
Try out the Alzheimer’s Navigator (See Red Arrow).

I found this site that can help you navigate a host of questions and issues related to Alzheimer’s, but it will help with other forms of dementia. I was surprised to find an action plan they offered that was for the caregiver … not the individual diagnosed. However, the toolkit may be a great way to have a conversation that is difficult to begin. You can do the General Assessment as a “guest” — just look in the bottom right corner of the page (see red arrow) for that option.

One of things Kate Swaffer has done is help advocate for the rights, and abilities, of those diagnosed with dementia. Now is a good time to understand what you can do to best advocate for your future. Encouraged.

What the Hell Happened to My Brain? by Kate Swaffer (Amazon)

What the Hell Happened to My Brain? by Kate Swaffer (Google)

You have been diagnosed with Dementia. Now What?

I am guessing that many of you share my fear of dementia. For those of us with loved ones who have lived with it, we know how devestating it is for the individual as well as the loved ones that surround them. But it doesn’t have to be. Once diagnosed, you have so much opportunity to direct, manage, and guide your life.

When the outcome wasn’t quite what you wanted.

I believe that the numbers reported are low because many people just don’t pursue a diagnosis. It is important to get a diagnosis for many reasons. The first is planning. If you know what you are facing you will be better prepared to plan the rest of your life.

As a Daily Money Manager who works mostly with individuals who have cognitive impairment or dementia, I know that not planning ahead or documenting personal wishes about future care and life choices most often results in guilt for those around you that will help. How will they know what you want if you are not explicit?

I know this after being the local adult child caregiver to my two parents with dementia. My parents had advanced care directives, but the most valuable guide for me in their care was the conversations we had around the dinner table. I knew that my parents wanted QUALITY of life over QUANTITY.

When my Dad was diagnosed with a tumor on the back of his tongue and in a moderate stage of Alzheimer’s, nothing in his care directives spoke to such an unusual situation.

When my mother broke her hip and the Doctor wanted to lift the Do Not Resuccitate order at the hospital to operate on her, I knew she would want me to tell them to let nature takes it’s course.

Ohhhh, but I still have guilt plaguing me about my decisions. I made the best decision I could at the time with the information I had.

The best way to ensure you get the care and support you want as you are living with dementia is to provide written (or video) of your specific care wishes. Use real-life sceanarios around you to tell someone what choice you would make if you were in a similiar situation.

Even if you have estate plans in place, now is the time to visit an attorney to update your plans. There are a variety things you can do to be an active driver for the rest of your life.

There are a wide variety of adults living well with a dementia diagnosis. Check out my favorite champion (who has gotten 3 advanced degress since being diagnosed more than a decade ago under the age of 50) Kate Swaffer https://kateswaffer.com/. Awed.

Moving into a Care Community that Matches Your Current Need

The move discussion is difficult for many couples and families. I did a three-part series on the topic to help provide a quick overview into some of the key learnings I have discovered. Here are the first two:
1) The Angsty Discussion About Moving: Life Care Communities
2) Moving Choices: Aging in Place – Part 2 of 3
and today is a final consideration on planning.

I do recommend you consider hiring a local Aging Life Care Manager to help navigate these choices and the current community options near you or your loved ones. I worked with one to help with my Mom and have seen them help with this discussion and process over and over with many clients.

The One Client Story That Illustrates How This Can Work

I started to work with Marge when she was living in her home. She had missed some bills, overpaid others, and was giving out her credit card number over the phone to charities daily.

After a year, it was time that she moved into an Assisted Living Community because living at home was just no longer a safe choice at 89. The new community was a combination of Assisted Living and Memory Care residents. She initially moved into an Assisted Living apartment but after about a month would wake up in the middle of the night and wander the halls in her nightgown worrying and sometimes tried to leave. They moved her into the Memory Care community so she would have more support and she would be in a secure section of the building. However it was hard for her to get integrated into a group of women and eventually she managed to actually break out. The community was just no longer a good fit so the Aging Life Care Managers searched for a better fit.

In addition to not really finding companionship with other residents, Marge had to pay for additional personal care assistance. Her monhtly community fees with the extra staff support now rang in at over $20,000 a month.

Six months ago she moved into a residential setting. She lives in a home with 5 other women with moderate stages of dementia and it’s a great fit for her needs. While this was not the right place for her initially, it is right now given how her dementia has progressed and the type of personal care that is best for her.

There is an Aging Life Care Manager who has been helping the family along the way, and while everyone thought the first community move was a great choice – and it was a great fit for a while – eventually it just wasn’t the right place for her needs.

Now at 93, we hope that she has made her last move. However, considering a move to a better fit is still an option and if she ever needed Skilled Nursing care. Her new community is now a third of the cost and she has found a loving group of residents and caregivers that are helping her find some happiness daily. It is the ideal fit for her right now.

I’m in the metro-DC area and we now of dozens of choices. I’m amazed at how many communities are still arriving.

Please know that you will make the best choice you can with the information you have at the time you need to make a decision. It will be easy to look in the rearview mirror and second guess choices made. I hope this has given you some insight into how to look at living options if you have loved ones living with dementia. Hoped.

Moving Choices: Aging in Place – Part 2 of 3

The first in the series The Angsty Discussion About Moving: Life Care Communities is a general overview of of how they are structured, the reality of the choice, and some things to know and consider if you are looking into this option.

I’m not gonna nove and you can’t make me.”

Now it is time to share some of the common issues and themes I see when a spouse is working to stay in the home with their loved one who needs more care as well as when adult children are helping a parent live at home alone.

In the beginning, it can be less expensive to layer in the care to support staying in their home. However, especially for a spousal caregiver, the care needs and isolation can become overwhelming in addition to the drain it takes on the health of the caregiver. According to the Family Caregiving Alliance, spousal caregivers ages 69 to 96 have a 63 percent higher mortality rate than noncaregivers in the same age group.

Often, the individual living with dementia doesn’t understand why their spouse is hiring outside help. Many living with dementia cannot recognize the necessity that someone help them through their day or the need for their spouse to be off the clock. The caregiving spouse starts to lose their outside connections and support in addition to skipping their own medical appointments and care needs.

Even though the couple is together, I am seeing that they both begin to feel isolated. The loss of a partner can also be more devestating since their partner might be their only engaging social connection. I saw this with my parents.

For those that choose to stay in their homes either with or without a spouse, there are engaging adult day programs for the individual with dementia. Isolation can actually lead to a faster cognitive decline and studies have likened the health risk to smoking a pack of cigarettes a day.

Generally, I see many couples and individuals supported by an adult child living at home alone resist outside support. Unfortunately, about half the time a critical incident occurs and blows up this option and a scramble to employ support occurs. If no prior plans are made, the available options are usually not the best fit. A little support layered in early can be an ounce of prevention and provide more options should care suddenly be needed after an event.

Living at home can also end if an individual living with dementia starts to wander or becomes combative.

The successful couples and families managing a loved one living at home have been able to integrate supports for daily engagement through personal care assistants or the use of an adult day program for the individual with dementia. I know how challenging it can be to start so just ask them to try it out for a few hours and days. Forced changes usually are met with solid resistance.

As a security measure, individuals and families that plan ahead have also selected at least one community that might be a fit if they need to make a change and gotten on the wait list. You can always decline the space when it becomes available but remain in the queue.

PROS:
– Familiarity in the home environment can help someone living with dementia stay independent longer since they have long-term patterns established.
– Expense. If you only need some part-time support or help, or even sign up for an adult day program, the total cost of living is less expensive.
– The individual with dementia wants to stay in their home.

CONS:
– Isolation impacts health and cognitive function in negatives ways. Even introverts (like me) will benefit from social engagement.
– Spousal caregivers have an increased risk of death.
– When something happens, there is no quick solution to provide support (unless you have already planned ahead or gotten on a wait list at a local community).
– Moving after dementia has been diagnosed usually means that learning new things will be more difficult. It can be tougher to make friends and engage within a new community.
– Expense. There is a tipping point when bringing all the services to you can be more expensive.

RECOMMENDATION:
– Make a plan for social engagement and find ways to make it happen. Call your county Area Agency on Aging to find out what resources in your community are availble to help.

There is no right or wrong choice when it comes to choosing the best option for your loved one and their primary caregiver — Just the best option for them and the caregivers when you need to make a choice. Advised.

Up Next, Moving As Needed

The Angsty Discussion About Moving: Life Care Communities

The discussion about if to move, when to move and where to move is an inevitable topic if you are caring for loved ones with dementia. Most people want to “age in place” and view a move as a huge negative … initially. However, there are many times when moving is better for the individual living with dementia as well as their caregiver — especially for a spousal caregiver.

What I have seen playing out with my family, friends and their families, and clients is that the “move” that created so much angst and difficulty is generally not the last move.

My hope is that knowing that may help you discuss what is really just the best move to make for now.

I’m going to walk through some scenarios in hopes that it will help you and your family make better informed decisions about caring for a loved one. There are no wrong or right choices … just the best choice for your loved ones RIGHT NOW.

Buying Into a Life Care Community

My parents bought into a “Life Care Community” and handed over nearly a half a million so they would “never be a burden to their children.” The Life Care Community model typically offers Independent Living, Assisted Living, Memory Care, and Skilled Nursing options all on the same campus. The idea is that you moved through the system as needed.

The community helps with the activities of daily living (eating, bathing, walking, dressing …) but they do not help pay bills, manage lifestyle desires, cater to medical choices and preferences, or act as personal advocates. Because my parent’s had the belief that moving in meant their adult children would never need to be involved, caring for them was actually harder than it should have been.

At one point the community asked us to petition for guardianship because my parent’s were a danger to themselves and others. We refused and worked hard to manage through their needs while allowing them to retain their personal dignity.

My parent’s were eventually forced out of Independent Living and had to either move into Assisted Living or move out of the community. The smaller apartment and proximity in the community to the action was a big bonus and my parent’s were actually happier than I had seen them in years.

After Dad died my Mom struggled. In this community, the section for Memory Care only had people in very late stages of dementia. My Mom was always moving and needed a community that would give her space indoors and out to move. We moved Mom out of the community they bought into and oddly enough actually paid less monthly for a better care model for her needs.

The good news is that the “buy in” model is fading away. However, before you plop down a stack of money know that the community may not be the right fit for your loved one as their care needs change. In many communities, Assisted Living is filled with many individuals who have mild to moderate dementia. I watched as those that just needed help with dressing and bathing avoided my Mom who couldn’t remember their names or hold a meaningful conversation any longer. For a variety of reasons, the next level of care needs for your loved one may just not be a strength of the community care offered in a Life Care Community.

There are a lot of positives for these communities. Make sure you met with your Financial Advisor or run through the numbers if you can choose to either “buy in” or just pay a monthly rent. The unknown is if an when you may need to leave the community you are moving into. I know it’s a horrible wrench to throw into this difficult decision… but it is a very likely scenario that should be considered before a large financial investment is made.

PROS:
– Integrate and build friendships in Independent Living and have a place and connection for the rest of your life
– Some communities are now letting you move into your apartment and bring the varied level of care to you versus having to move through the different communities.

CONS:
– Have to move when your care needs change and the community doesn’t have the best fit for your needs.
– Expensive. Many now don’t require a lump sum payment. In our area we have a lot more choice and now they have different models for payment.
– It’s often hard to make new friends when you move into an established community.

RECOMENDATION: Ask if the community has a trial period so you can move in and see if it is truly the right fit for you now and can serve needs into the future.

I hope this helps you and your family as you are starting to have these discussions. Witnessed.

Up next, Aging in Place …

Talk to your Children about your Healthy Aging Choices and Listen to What They Say – Habit #22

funnyquotesagingparent

As an adult child that lived through caregiving for two parents over 5 years, and as a parent of two children, I have been very open about how I believe families should function in terms of support and care.

My parents planned well thinking that they would never “be a burden” to their children. However, when they both ended up with dementia, a family member needed to be intimately involved in their care and well-being. The hard part for me was that my parents firmly believed they never needed any help and half of my caregiving battle was managing around their inability to see how they were failing.

As my children grow and one now has flown the coop, I plan to be open with them when it comes to discussions about our care and well-being. If and when they are managing their own careers and raising their own children, I will make sure to regularly check in to listen to them on how and if they could help. I want them to have their lives, but I do also hope that I can rely on them to at least have general oversight if my husband and I should we need it. There are options for us if they can’t help.

I know that I can hire specialists to help with the day to day needs. I don’t expect my kids to do it for me. But I also know that family knows best and would prefer if one or both of my children would be a POA or Trustee for us when they are ready to step into that role.

What I find most interesting is how many adults with children over 30 are reporting that their kids won’t listen to them when they try to share their plans or discuss their finances. Maybe for many it feels like a weaponized conversation about inheritance or their adult children just aren’t ready to have it.  What I do know is that you better have had this conversation with the people you are counting on to help you before the help is needed. Experienced.

Tour the Local Adult Communities – #21

50plusadults

In my role as a caregiver, I learned that my own community had very few aging life care, memory, or assisted living communities. I toured all three at the time to understand what they had to offer. I learned that the one we liked the most had a really long wait list.

Now that I work with older adults and their families, I have seen that most of my clients are only moving in AFTER there is a critical incident. Sadly, that limits the choices since many of the best communities have long wait lists.

When I start to work with an individual and family because they need help with the day-to-day bill pay, medical care or home upkeep, I always suggest they tour and select one. You can get on a wait list and you never have to move in, but should something happen, YOU or YOUR LOVED one got to choose the place.

For many communities, the individuals on the wait list have the ability to use the community for any short-term rehabilitation or skilled nursing needs.

It is reported that one in three working Americans will become disabled for 90 days or more before age 65 (TMA) and the U.S. Department of Health and Human Services reported that at 65, 7 out of 10 American’s will need long-term care services. That information means that most of us are going to need some help and what we do know gives us more control over future events.

You may find a local 50+ community in the area that might be better suited your lifestyle. There are now a lot of choices you can make for living well.

You have probably received a postcard inviting you to a local community or heard about a nearby senior fair. It’s worth an hour of your time to get familiar with the resources for when someone needs them. Suggested.