Category: Assisted Living and Dementia Care

Is keeping Mom at home the right choice?

homesweethomeI know how often I second-guessed the choice of where my Mom lived. My siblings and I often discussed how we could better use the money being spent on their care community that never seemed to be the right fit for them once their dementia really changed their thinking and behavior.

Now that I work with families who are usually not in the metro-DC area and want someone to help their loved one who is still living in their home, I wonder when is it the right time to consider moving them into a community.

In general, the earlier the move for someone with cognitive issues, the better. They can make friends, find activities they enjoy, and benefit from the social activities that can keep the cognitive decline at bay by staying engaged.

However, I understanding viewing the move from their beloved home as a major issue that most older adults decline and often fight against.

I battled with myself the last year of Mom’s life. Should we move her into our home, even though she made it clear over decades that she never wanted to live with one of her children? I knew it would be a major ask of my family to move her into our home. She would have needed someone at the home to help her when we were working. I realized later that she also would not have had the benefit of all of the activities for engagement within the community. I wish I could have played out both options and reported back to you.

Every family needs to make the best choice for your circumstances. Please know that the fact that you are involved and engaged is more than most adults with dementia receive. Many families detach, others fight over the choices, and for dozens of other reasons, their loved ones don’t have the benefits of an advocate who is watching out for them. Weigh your options but be satisfied that you are making the best decision you can with the information you have right now. Considered. 

When off-label use goes bad

SeroquelI remember when they recommended this drug for my Mom a few years back. She had vascular dementia and was getting very agitated. The staff was having a hard time redirecting my Mom. They thought this medication might help.

A recent story in The Washington Post covers some of the issues as it related to off-label use — One of America’s most popular drugs — first aimed at schizophrenia — reveals the issues of ‘off-label’ use. This is just one of a number of stories I have seen about using varied drugs to “temper” (for lack of a better word) the behavior of residents in care communities.

Before this, when Mom was still with Dad in Independent Living, the doctor suggested and prescribed Ativan. It is at least prescribed for anxiety. However, my Mom would refuse to take it so when I knew events might bring on anxiety for Mom, I would put it into her Coke. I must admit that I’m not sure that was any better maybe than prescribing off-label uses for different drugs.

I do know that the one time my Mom freely took Ativan was before my Dad’s funeral. On that one day, she wanted a pill to help with the anxiety she was feeling.

Over time, I learned to better interact with Mom and could usually redirect any pre-anxiety events. After the first year of adapting, I never even considered the need for any behavior medication.

Did I change?

Did Mom change?

Did moving her to a community focused on caring for individuals with dementia eliminate the circumstances to bring on the anxiety?

I will never truly know. However, I do feel that the first year as you and your loved one is adapting to the changes in your relationship, and they are feeling in their lives is the most challenging stage.

Just know that they need an advocate, and the more you know the better. Confessed. 

It’s what you know for sure that just ain’t so.

twain quoteA Financial Adviser shared this saying with me after I reached out to him to help some clients who have dozens of banking and retirement accounts. As a Daily Money Manager, I work to simplify their lives, minimize the money they are spending on things they don’t use, shield them from fraud and predatory vendors, and help connect them with the right resources to best serve their interests. Sometimes it’s an Elder Care Attorney, sometimes a Home Care Aide, sometimes an Aging Life Care Manager, and sometimes it’s a Financial Adviser. In a few cases, it’s been one of each.

The Adviser used this expression in response to a conversation about some beliefs we have about managing money and I think it really applies to the world of caregiving in many ways.

First off, Mark Twain is credited with the complete quote: “It ain’t what you don’t know that gets you into trouble. It’s what you know for sure that just ain’t so.”

I recently had a discussion with a family that was struggling to help their Dad. They wondered when it was time to consider moving him into a memory care community. I have seen over-and-over again what happens to individuals when you wait too long. They have a hard time adapting to their new community.

“But Dad doesn’t like people, he’s always been a loner.”

Everyone needs to do what feels right to them, and to serve the best interests of their loved ones. In many cases, what our loved ones like changes over the course of their dementia. My mother who was a Life Master at Bridge, didn’t enjoy cards once she could no longer keep track of bids. The woman who hated TV would choose to sit and watch it some days over doing a painting activity — and she had been painting since the 70’s.

In the same way it pained me to lose my mom bit by bit, seeing her no longer find enjoyment doing the things she loved to do was a double-whammy.  What I did see was that my mom started to enjoy activities I would have never guessed at her memory care community.

What I thought I knew when it came to advocating for my Mom, wasn’t always so. Give your self the time and space to consider the options. Your loved ones are lucky to have you. Remembered. 

 

 

 

 

Don’t Dread the Move to Assisted Living

I was physically ill the days leading up to my parent’s move from Independent Living into Assisted Living. They fought the move, and would not allow personal care assistants into their apartment in Independent Living which could have allowed them to stay there longer.

The community they lived in forced the issue. They were a danger to themselves and others in the community. They gave them the choice to move out, or move into Assisted Living. Navigating that with my Mom was an incredible challenge, she was ready to hire a lawyer and move out. Thankfully, my siblings all came to town to help manage the move.

My parent’s living space went from 2,000 to around 600 square feet.

We all knew that my parent’s were not happy about the move. However, they also were both in a moderate stage of different dementias. We tried to make the time more of a family reunion and distract them from the reality of the move.

Thank goodness there are 4 of us. It tapped out all of us emotionally.

The big surprise? How happy my parent’s were in the smaller apartment with a view of the front entrance. My parent’s were the happiest I had seen them in a year.

After my dad had his celestial departure, we found that mom needed to be in a memory care community. That move was a little easier. I had someone help move Mom’s things while I took her out to lunch and we drove to her new community. She really liked her new room with all of her things and her habit of wondering when Dad would return to her apartment disappeared. She was now in a community that wouldn’t make her choose a meal off a menu (all the choices overwhelmed her); she always had table mates (the other residents in Assisted Living didn’t want to sit with the woman who couldn’t remember their names); and she always had an activity that would meet her where she was.

dancingMy mom was never a joiner. But her personality and interests changed through her dementia. What I have seen over and over is that the longer you wait for the move, the harder it is for your loved ones to adapt to the new community. I was shocked to arrive one afternoon to see my Mom dancing. She always shooed my Dad away when he asked for a dance.

I know how hard it is to face the decision and be the one to make it happen. You are making the best decision you can with the information you have. They are lucky to have you in their life to be their advocate. Believed. 

Turn on your Long Term Care Insurance Now

LTCinsuranceIn talking with several families recently, there seems to be a reticence to start benefiting from the Long Term Care insurance they own. Whether it’s the idea to save it ’til later when things get really expensive or that they won’t qualify … I’ve seen it too often recently that I want to encourage you to apply for the benefits now.

A few reasons to take it now include:

  1. Once you turn it on, you don’t have to make anymore payments.
  2. Should the individual with the benefits predecease the use of the insurance, or before they have claimed all of the benefits,  you won’t get any of that money back. Exhaust the plan before you exhaust personal savings.

Many of the plans have limits and caps, but there are still a few really good ones that don’t. Do you know what your plan limits are?

Most plans have an exception for individuals diagnosed with dementia versus having to qualify with two or more activities of daily living. First read through the plan to find the qualifications and then call the provider and ask about the policy. Key questions to ask include:

  • Is there an exclusionary period?  Many plans have 90 and 100-day exclusion periods once the individual qualifies for the benefits.
  • How much per day is covered for Home Care Assistance? Most plans have a dollar amount per day for personal care assistants in your home. You can actually set up the billing so they bill the insurance provider directly and you only have to cover any overages. Many cover up to 10 and 12 hours per day.
  • How much does it pay toward Assisted Living; Skilled Nursing; Memory Care? It’s good to know how much will be covered when you are making a decision about a care community.

This truly is a use it or lose it scenario and from what I have seen, there is no benefit to NOT taking it as soon as you qualify … and that could simply be a diagnosis of dementia. Experienced. 

How much money is needed to care for a loved one with dementia?

DMMHouseI wish I could tell you there was an easy answer to this question. But there isn’t. Just like every dementia is different, every support network is different as is every metropolitan area in terms of costs and options.

The Alzheimer’s Association just posted a campaign stating it is the most expensive disease in the United States. They do state that 1 hour of Alzheimer’s costs taxpayers $21 million, but most of the costs are in terms of Medicare and Medicaid expenses. How might your family look at the cost and impact to your family?

Some things to consider include:

  • How much time are you spending each week providing unpaid care? From rides to the doctor to meal preparation and financial management?
  • Is the time you are spending helping a loved one impacting your job in terms of lost wages? Diminished opportunity for promotions?
  • What will be needed to spend in terms of personal care assistance? Is it all out of pocket or is there long-term care insurance that can cover some of the expense?
  • How much does a memory care or assisted living community cost?

The numbers add up quickly. For an example, the year after my dad died, we spent around $40,000 (of her money) in personal care assistance for my mom. She was living in a life-care community, wasn’t progressed enough to live in the Memory Care neighborhood, but needed more assistance navigating her day. Her community costs were $96,000. So in 2014, we spent around $136,000 on her community and care costs. Had she just moved in with us, having a personal care assistant around the clock would have been around $120,000. Had that been an option, we could have probably decreased that costs when we knew we would be at home to help with her care.

The last year of Mom’s life, after we moved her into a community designed for an active woman with dementia, the cost was close to $200,000. While her community cost was a little less expensive then the life care community they chose a decade earlier, her personal care costs were $96,000. After she fell and wasn’t steady on her feet, we needed to pay for a personal care assistant to be with her 12 hours a day so she wouldn’t try to get up and walk on her own.

Frightening numbers! Thankfully, my parents had saved and had the money to cover their expenses.

One thing to consider is that allowing an individual to maintain their independence and purpose as long as they can is something they will treasure. It can also minimize expenses, but shouldn’t be at the risk of other factors. If they are living alone, find a good solution to detect falls since that is the greatest risk for most older adults.

Dementia stinks. It robs us emotionally, and financially. As a Daily Money Manager, I help families develop plans to assess the costs and consider the options. To learn more about how I help families, visit here. I’m always happy to help families navigate these issues. Offered. 

Joy is the Decisive Test

joykidThe path for every individual and family is unique in caring for a loved one. Some families have unlimited resources while others have finite resources and must choose from within the options they can afford.

I’m often asked “When is it time to move into a community?” For some, never, and for others the earlier the better. I have seen with my family and with clients that when there is cognitive decline, it can be hard to adapt to a memory care community. Sometimes waiting longer can make it harder.

I am still surprised when I tell others how happy my parent’s were AFTER they were required to move from Independent Living to Assisted Living. I was physically ill days leading up to the move and my mom was incredibly angry. Thankfully, all three of my siblings came to town to help them move from their very large double apartment in Independent Living to a one bedroom in Assisted Living.

The change in my mom was immediate. The smaller world to manage and the view of front entrance to the community gave her something to watch. I was surprised at how quickly they forgot their old apartment.

I do know that sometimes it cannot be the decision of the individual whether or not to move. Sometimes a spouse isn’t ready for the change, or they feel like it is their responsibility to maintain the prior life.

Whatever the circumstances of your decision, I hope that you can consider how much meaning and purpose factors in to the joy your loved one can still experience. Is trying to maintain the former life overwhelming? Might their be other options to fill their day that will bring them joy where they are?

Just remember that you will make the best decision you can with the information you have at the time in which you need to make a choice. Caregiving is hard. Reminded. 

How do if know if a community is a safe place for mom or dad?

MemoryBanc Daily Money Management Services
MemoryBanc offers practical assistance to age-in-place.

My parents tried to get ahead of having one of us choose a community to help with their care. The bought into a Life Care Community in 1998. However, they never really wanted to live there.

It got comical when they told us they didn’t want to really move in yet because that is where all the “old people” lived. My parents were in the mid-70s and treated the community as a vacation home and went on weekends.

I recently heard a statistic that the average age of those that move into retirement communities are now in their 80s. Most people want to stay in their homes as long as they can. However, I also see the isolation of those who lose a spouse or just withdraw from their network of friends. For those that give up the car keys, it gets harder to stay connected. Those are most of the clients I work with and I understand the tension between aging-in-place and moving to a community. The answer is different for everyone.

As Dr. Gawande simply states in the best-seller “Being Mortal” — many of us want safety for loved ones while those we are helping, want purpose and meaning. However, it’s hard to know if the community you are looking at is right for your loved ones.

A recent news story in our local paper shared that dozens of nursing homes in Virginia were fined for violations. It’s heartbreaking to know that many individuals who are at their weakest are not getting the kind of care their need. Unfortunately, it is a reality of the industry and one that means that family and loved ones need to be vigilant and be the voice for those that can’t advocate for themselves.

When I needed to find a different community for my mom who was a very active woman with moderate dementia, I hired a local aging life care manager from Caring Considerations. They helped narrow down my choices and my siblings and I had the opportunity to tour and select the one we thought was best for mom.

The reason to hire someone to help with this are many. First, online community locators are compensated by the communities they send you for the leads they produce. I wanted an impartial expert to help me find the right place for mom.

I have also referred some families to the senior community advisor that serves my local community. They are compensated by some of the communities they refer to, so I suggest you a schedule a call to learn more about how they can help you and how they are compensated.

You want to know about how the residents and their families have found the community. Most aging life care managers and senior advisors have clients living in the communities and have an inside view.

The final reason is that you will want to know if there are violations. You can search for the ratings on Nursing homes on the Medicare site here.  Unfortunately, this is only for the skilled nursing, so having someone who knows about an Assisted Living or Memory Care community can help offer some additional comfort to a difficult choice.

Even the top communities aren’t able to staff to meet all the needs of their residents. It’s a shame to know that we haven’t figured out how to compassionately meet the needs of our elders. Aging Ain’t for Sissies. Considered. 

How often should I visit?

kayandkittyxmas2014For those who have a loved one in an assisted living or memory care community, this question lurks in the back of all of our minds. There is no right answer, only the answer that is right for you.

I recall several times having voice mail waiting for me asking “When are you coming to visit?” In many cases, the calls came within 20 or 30 minutes AFTER my visit. Why am I visiting when my mom doesn’t even remember it?

I came to realize that I needed to recognize my visits were for me. What was the right balance to not only be her advocate and make sure she was getting the right care, but also ensured that I was also present for my own family. The weekly number of visits fluctuated over the last few years of mom’s life. I always struggled to know what was the right amount, but that was only something that could come from within me.

There were times when mom didn’t recognize me, and other times when she would say something so personal or insightful, I would have to excuse myself to avoid crying in front of her. I missed her even though I was with her. The dementia stole her away bit-by-bit.

There are also those times when your loved one can tell you how much your visit means. The picture is exactly one year before my mom’s death. That day she let me know how much my visit mattered. Appreciated. 

My Top Ten List of Dementia Don’ts

alzheimers-badgeI started this blog to help me deal with all of the changes I was seeing in my parent’s and feeling helpless. Over five years I learned quite a bit, and have poured it into Dealing with Dementia in hopes of making this journey a little easier on the next family.

I’m honored to  have been named one of the Best Blogs of the Year for 2016, 2017, and 2018. To celebrate, I’m recapping my Top Ten Dementia Don’ts.

I wrote these when my mom was living in an assisted living community dedicated to memory care. Some really only come into play in the later stages, but could really just be general life rules if you ask me!

10. Don’t assume because they can’t tell you, that your words or actions don’t hurt their feelings.

9. Don’t assume they can’t answer for themselves.

8. Don’t blame them for the changes in their behavior.

7. Don’t remind them of a death of a loved one or pet.

6. Don’t talk about someone with dementia in front of them like they don’t exist.

5. Don’t think they can’t communicate just because they don’t speak.

4. Don’t assume they can’t understand you because they are silent.

3. Don’t correct or challenge trivial things.

2. Don’t say “Remember when … “

1. Don’t tell someone diagnosed with dementia they are wrong.

What are some of yours?

Revisited. 

** I updated this post in 2018 when I was again awarded this distinction. 

 

 

 

 

 

 

 

My Journey As a Caregiver … in 3 Parts

KaywParents2013I was asked to share my caregiving journey on Healthline. It turned into a three-part series, and might have some information that you find beneficial.

1) The Fight to Become My Parents’ Caregiver

2) What It Means to Be a Caregiver

3) The Painful Choices End-of-Life Brings for the Caregiver

I’m happy to be on the other side of the journey, and can now treasure all the skills I learned, and the moments I shared with mom and dad. Traveled.