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Gaining Mom's trust.

Many of us have been seeing a parent struggle with their memory and ability to manage their own affairs long before there is ever a diagnosis.

It took time for my Mom to adapt to having me pay the bills and help her. She felt that she was managing just fine. My Dad recognized she was having trouble and asked me to help. When I started I had trouble learning how to assist without offending my Mom. My Mom never recognized that the stroke she had impacted her memory or her ability to manage. She would tell me her “brain is bad today” but that wasn’t impacting her ability to manage her life (in her own mind). When I reminded her that she did have a stroke, she would accuse me of making it up.

I slowly worked to gain her trust by doing things in tandem that she asked for help on. I found the less I pushed, the more opportunity to help I was given.

When it came to the mail and the bills, I would take the piles of mail that were lying around and triage issues as I uncovered them. Thankfully, my parents added me to the bank account so I could reverse engineer many of their household finances. I visited with a large purse that allowed me to easily drop in piles that were dispersed around their home.

One day I walked in to visit, and my Mom had created a mail pile for me that included a bill and a check. She even put a label on the pile for me. Earned.

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What you Should Know if Dementia is in your DNA

For those of us caring (or have cared) for parents with dementia, you should know there are a variety of factors that we can control that will reduce our risk.

The first is good news for those of us that worry that genetic factors have sealed our fate.

Association of Lifestyle and Genetic Risk With Incidence of Dementia (JAMA, July 2019) The study sought to determine if a healthy lifestyle was associated with lower risk of dementia, regardless of genetic risk. They found that a favorable lifestyle was associated with a lower risk of dementia among participants with high genetic risk. There is considerable evidence that individuals who avoid smoking tobacco, are physically active, drink alcohol in moderation, and have a healthy diet have a lower dementia risk.

The next study reports that higher levels of daily physical activity may protect against the cognitive decline and neurodegeneration (brain tissue loss) from Alzheimer’s disease (AD) that alters the lives of many older people. This was from researchers at Massachusetts General Hospital (MGH). Exercise offers protection against Alzheimer’s (JAMA Neurology, July 2019)

I noticed what a difference exercise made for my Dad who was diagnosed with Alzheimer’s. I worked to encourage him to get exercise, but it got to the point that the only way it worked was when I would challenge him to play Racquetball with me. He had a group of friends that he regularly met in the mornings, but after he fell on the Racquetball court and broke his hip, he was just unable to return more because he couldn’t manage to plan ahead and would not allow me to help. When I did get him moving he was just more communicative. I do need to add that he recovered from his hip surgery and was still able to beat me. While I could run, I just couldn’t outsmart his crafty shots.

I have also seen this with the older adults I work with. The more they are engaged with others and active, the better they seem to manage when it comes to working on daily finances and household chores. I have many that really want to stay in their homes but also don’t realize how isolating that can be.

The middle stage is hard to navigate as our loved ones think they are managing but are unable to recognize what they are not able to do or follow up on. If there is anyway to incorporate friends who can help them return to an activity they shared it will give them both a social and a physical boost?

The research has proven that we aren’t predestined to the fate of our parents if we have a favorable lifestyle. The good news for our loved ones is that exercise will help them even after a diagnosis. Let me know if you have had some success getting your loved ones that have been diagnosed moving again. Encouraged.

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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.)

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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.

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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

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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 …

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Making the Best Choice Medically for Mom & Dad

One of the toughest challenges I faced when caring for loved ones with dementia were the medical choices for non-dementia care issues that erupted and threatened my parent’s well-being.

A recent opinion piece in The Washington Post by an Emergency Room physician titled Doctors are torturing dementia patients at the end of their life. And it’s totally unnecessary illuminates the reality of the choices families face when caring for aging parents.

My family faced these difficult choices twice.

My father in a moderate stage of Alzheimer’s had a tumor on the back of his tongue. Knowing our parents were doing better together than they would alone, and in the hope that we would eliminate the pain my dad was feeling but could not verbalize sent us on a path to try and treat his tumor. After a week of medical visits we saw that our dad was not up for a fight with cancer. We worked to find him some relief through hospice care. Thankfully, his end came quickly.

When my Mom broke her hip in her Memory Care community and ended up in the hospital, I knew the end was near. The recommendation was to perform surgery but that required we lift the Do Not Resuscitate order. My mom no longer knew my name and I wondered if the stress of the trauma resulted in another stroke. I had to repeatedly ask that we let “nature take its course” while the hospital kept trying to certify my mom for surgery. My mom was clear that qualify of life was more important than quantity, and I knew the surgery would be painful and not provide improved quality to the rest of her life. Thankfully, the medical team agreed that she was able to survive surgery and we moved her into hospice care.

I still end up in tears recounting both of these stories, however I know it is important to make sure other families know that it could be one of the greatest acts of love you offer by taking the path of least medical intervention. I’m glad to see Dr. Geoffrey Hosta share his medical insight that reaffirms the choices my family made. At least I know we did our best to honor their end-of-life wishes. Reflected.

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