Tag: caring for someone with dementia

End-of-Life Directives and Dementia

I lived the reality of managing end-of-life wishes for individuals with dementia. It is hard to navigate a medical system that is trained and geared to sustain life.

If you are in a position to care for loved ones with dementia, this article in The Washington Post is a good overview of how complicating things can get even when advanced medical directives are in place.

After witnessing many family, friends, and clients live through dementia, I am always hopeful that things will change in the coming years. The idea of assisted suicide doesn’t include individuals without capacity. For inviduals with dementia their gradual loss of capacity impacts their ability to advocate for their medical wishes.

There are now “advanced directives for dementia” but for a variety of reasons, many legal, they may not be followed.

The reality is that just having the legal documents in place and all the planning in the world is just not enough in many cases — and especially when there are cognitive issues. There is the need to have someone advocate for your needs and manage your affairs that goes beyond living in a continuing care community that provides a play to stay and food — but does not help protect and manage your finances or manage your healthcare to your personal wishes or advance directive document.

The woman in the story requested VSED – voluntary stoping eating and drinking – to end her life. She has been diagnosed with frontotemporal dementia and the continuing care community she bought into to manage her care needs has now told her they will not be able to follow her directives. Apparently, many states have ruled that food and water are basic care and can’t be withdrawn.

There are ways to find trusted resources to help manage these needs for you. I became a Daily Money Manager or basically “a professional daughter” after losing both of my parents to dementia. I work with Aging Life Care Managers that can help navigate the health issues and advocate for your health care wishes.

There are options and as these issues come to light, many more options will be forthcoming. Hopeful.

Please tell me what you have done or are doing to address these concerns (and if you have seen the in action.)

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 …

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.

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.

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.

There is a Statute of Limitations on IRS Refunds

timemoneyIt physically pains me to find someone, through oversight or because of overwhelming life events, failed to do what was needed to get the refund to which they were entitled to receive from the IRS.

I just learned this when a client was told by the IRS that the 2014 and 2015 returns she eventually filed were submitted too late to allow her to receive the nearly $12,000 she was entitled to receive. She thought her life partner had filed these when we started working together. Unfortunately, he never did file them or ask for an extension.

According to I.R.C. Section 6511(a) “Claim must be filed within 3 years from the time the return was filed or 2 years from the time the tax was paid, whichever of such periods expires the later, or if no return was filed by the taxpayer, within 2 years from the time the tax was paid.”  There are things like extension requests that help your timing. Check with an accountant to learn more about this if you might be in this boat.

At least half of the families I have worked with find out that taxes didn’t get filed. The early signs of dementia are subtle and the individual may believe they are doing all the right things. It usually takes a couple big financial mistakes before people realize their loved one is unable to really manage their financial affairs.

If you are not sure if the taxes have been addressed, you can request transcripts from the IRS here.

Caring for a loved one can be overwhelming. If you need some help looking into this and no one is able to help, you could find a local Daily Money Manager who can help out. If you have a lot of medical expenses, the few hundred dollars it might take to hire them to help will more than be repaid when you receive your refund. If you can’t find one in your area, let me know. There are several members of my team that can assist with this remotely.  Recommended. 

 

 

Sort your Postal Mail Daily PLUS … Healthy Habit 27

stackofmail

I am the WORST offender of the first part of this habit.

Sorting mail daily for clients has made me akin to the cobblers children with no shoes. I usually let it pile up and go through the pile weekly.

It’s annoying to friends and family that have sent mail because I typically prioritize the bills and statements and leave the “fun” stuff for that period of the day when I have a bunch of free time. That usually means I won’t see it until the weekend.

I keep trying to remind myself to “touch it once” and now I am at least reviewing it daily and culling out all the junk mail when I bring it up from the mailbox.

Do what you can. I am just recommending you sort it daily, at least weekly, and be sure to REVIEW your statements.

I find people decide to set up their credit cards on autopay and they truly set it and forget it. They STOP checking the itemized purchases. When I start working with clients and  we do this together for the first time we find HUNDREDS of dollars that have crept into their monthly charges they either didn’t know about or are not using.

The paperless setting lures you into this habit. I hope you will at least add a monthly reminder to review your charges if you have electronic billing. If you find you are not doing this, maybe you can go back to mailed statements? Suggested. 

Organize your Finances and Accounts – Healthy Habit #19

Everyone who has had to step in and help a loved one knows how difficult it is to make sense of someone else’s finances.

Most couples can remember a time when they needed to access an account but were unable to because it was in the other person’s name. The phone and utility companies don’t care if you are married or on the home title or mortgage.

It will take some time and organization to make it easy for someone to access, but the reality is that for every adult I have worked with, all of your important information can fit into a 2” ring binder. Filing cabinets become organized dumping grounds for our personal papers and most people will admit they often have trouble finding their own information in the system they set up for themselves.

You can download a free guide to walk you through how to organize your binder here. If you want a workbook that will walk you through this process you can find it on Amazon (it’s less than $17).

Having it organized will save you time, and once it’s done, it’s easy to stay on top of the organization. One of the most important things you can do, is to create a simple roadmap of your finances. Many households have multiple bank accounts and often those people who would step in to help don’t know which account the income drops into and which account is step up to pay the mortgage, long-term care insurance, or even auto-pay utilities or other services on which you rely. Here is a simple example:

financialMap

It’s very basic, but can easily provide you with an easy way to understand your account set up and the interconnections between your financial assets.

Getting this done will benefit you now by saving you time in the long-run, and benefit you later if someone does need to step in and help you.

I started doing this organization when I was caring for my parents. It took me over a year to get a handle on all of the accounts and finances. I wanted to make sure that when my siblings visited, they could easily step in to help me. It was the origin of my business MemoryBanc. I  hope you will access the free resources to set up a system that will benefit you and your family. Shared.

Write or Print out Your Usernames, Passcodes, PINs, and Security Questions and Answers – Healthy Habit #18

digitalkey

Passcode keepers and your browsers’ ability to save access codes are time savers. However, should you have a shared household, need to step in and help someone, or have someone step in and help you – without this information the inability to access your online accounts can be a huge roadblock.

I know we have been told NOT to write down this information for years; I get that for employers who have IT departments who can reset your access. At home, we don’t have that system and having this written down will save you time and frustration.

How many times has your answer to your own Security Question been rejected? Every time I do a public speech on What to Save and What to Shred, this question always gets an uncomfortable laugh as half the room raises their hand to admit this has happened to them.

Have you ever needed to contact your phone provider or the power company and the account is in the name of your partner, roommate, or spouse?  If so, you will know that you will be unable to make changes or service specific account needs if the person to whom the account is titled is not on the call with you. For the variety of accounts that fall into this category, I learned long ago to login as the owner of the account and handle our service needs in the portal. Saves ME time and allows both me and my spouse to fill in for each other should we be traveling or unavailable.

I have a book that my husband and kids are familiar with that includes all of my usernames, passcodes, security questions/answers, and PINs. I use the book every week to quickly look up or update my online accounts. The average consumer has 90 online accounts, and as a business owner, I have closer to 150 accounts.

My husband and kids also have documented and shared their information in case I ever need to step in and help them. For my kids I told them to put it in a sealed envelope I would only open in an emergency. It was an easy ask since they knew I had already provided them with an option to access my accounts. Parents have no online access rights to their children’s accounts.

The good password keepers have an option to print out a summary and I hope you will do that. In many cases, I have families that have shared this information in a document on their computer only to find out that no one knows the passcode to get into the computer. So I just recommend you have one option be paper access that can be stored in a safe or even hidden in plain site.

I guarantee having this will save you time and angst and be a huge help to those that may need to access your shared accounts when you are not home, or provide them with the keys to your digital legacy should they want to protect it and you are unable to do so. Advised.