Tag: dementia care plan

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.

Integrating into a Community is a Common Challenge

The topic of when to move and why is a common discussion as our parents are aging and our friends are starting to discuss downsizing. In general, most people want to stay at home. However, there are quite a few issues to address from predatory service providers, socialization, and fall issues.

70% of Assisted Living residents have cognitive impairment making it hard to make new connections.

The issue that concerns me most are the single individuals living at home who don’t consider how long they might go without someone knowing to call for help. I have heard too many personal stories of loved ones being on the floor for so long it creates an open wound (this can be in just hours in an older adult) or another complication develops that radically changes their health. A wearable pendant with a push button won’t help someone who has a head injury so I also ask those individuals to consider the ones that will call you if a fall is detected. Unfortunately, you many find you are getting called more than you would like, but too many calls is better than zero should you need assistance.

However, I also have a dear client who moved into a community and I see how hard it is for her to make new friends. It’s clear to me that she has lost some short-term memory which can make it difficult to form new friendships. A recent news I read cited that “70 percent of residents have some degree of cognitive impairment” in Assisted Living communities.

With the average age of most Assisted Living communities in the 80s, it’s no wonder that the transition can be more difficult if the majority of the residents are unable to make new friends.

My mother who was the ultimate hostess and always taught me how important it is to make the new person feel welcomed had a very tough time connecting with the residents in her community. As her dementia progressed, she was unable to make connections. The hardest thing to witness was how much the other residents in Assisted Living avoided those with cognitive issues. I get it, but still don’t like it. I think because I have cared for two parents with dementia, I will always be sensitive to the isolation that they must feel and will make an effort to connect. What I don’t know is if my own cognitive changes might make me less compassionate when I’m in my 70s.

So now I’m wondering if moving earlier is better for the individual so they can develop new friendships and be more familiar with the community before they reach the critical time when living at home is just no longer an option due to safely issues or the costs of bringing the care needed to you. I wish there was a better way to determine what is the best option. For now, I think we all work to find the best options for our individual needs Wondered.

I’d love to hear what your family did or how you are making these choices. There is no right or wrong answer I don’t believe.

Knowing the type of Dementia Helps Everyone

I didn’t handle the diagnosis of my parents well. I thought that hearing a doctor tell them they had dementia would suddenly make helping them easier for me. I finally realized that it was equally devastating to my Mom every time she was told.

For a large majority of individuals with vascular dementia – the type that comes after a stroke – they are unable to recognize their loss. My Mom had no physical changes, and for the first few months thought I was making up the fact that she had a stroke. The medical term is Anosognosia and I wish I knew and understood this when my Mom was diagnosed. She was medically unable to perceive that she had difficulty with her thinking and memory.

In the years since I lived through caring for two parents with dementia, I have found many individuals that don’t understand why a diagnosis mattered at all.

A recent story on NPR Is It Alzheimer’s Or Another Dementia? The Right Answer Matters reinforces the need to get a diagnosis. Apparently, most people default to the belief it is Alzheimer’s, and having some insight can also help the care partners manage better.

I have had a long-standing discomfort with the share of voice Alzheimer’s has taken. First and foremost is because most people don’t even know it is the most common form of dementia. I didn’t realize it until my Mom was diagnosed with Vascular Dementia, while my Dad was diagnosed with Alzheimer’s.

What I have learned is that the primary types of dementia all come with varied behaviors, risks, possible treatments and care plans. One form of dementia comes with symptoms that present more as a personality change than symptoms of dementia. In general, changes in behavior, mood, and memory should all be discussed with your primary care physician. Knowing more can help everyone and I hope you will help learn more should you be concerned about your own health changes or those in a loved one. Encouraged.