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Your Mom used to be so nice

MomandkayhatsMy Mom has a new tempo to her days. Her Assisted Living community recently added a program for residents with cognitive issues from 9 a.m. to 3 p.m. daily. Instead of arriving to find my Mom sleeping in her room, now she is out in the community when I arrive — even when it’s outside of the program hours.

The daily activity has given my Mom more energy and it’s nice to see her engaged with the others in her community. Yesterday I arrive before lunch and join in to paint with my Mom before we walk down to the lunchroom. When we arrive she suggests we go sit with a woman who is not in her activity group so we join her.

I introduce myself and she says “Yes Kay, I know you, You got into a little trouble with my daughter once.” I recognize her instantly and ask how her daughter is doing. The one unique aspect to this community is that many of the residents were classmates of my Dad’s at West Point or were friends made during an assignment over my Dad’s long military career.

When I was 16 (34 years ago), at a sleep over at a mutual friends house, we snuck out to go swimming in the pool on base. We were caught before we got in by the MPs (Military Police) and each of our father’s was called at 2 a.m. to come pick us up at the police station. It was determined that I was the ring leader in the ploy (which was probably true) and I didn’t see much of either girl after that incident. I do remember that the MPs tried to infer that we had been drinking, which was not true. I remember begging my parents to take me to the hospital for a blood test. I accepted my punishment, but didn’t want to be punished for a crime I didn’t commit.

I then learn how after this incident, my Mom and my now estranged-friends Mom would play bridge together. Apparently my Mom hosted social bridge at our house when I was in high school and then went off to college. After sharing this with me, she tells me “Your Mom used to be so nice.” My Mom is sitting at the table with us and it surprises me that she says this so freely in front on my Mom. I assume she doesn’t realize that my Mom’s feelings can still be hurt. She goes on to comment that “she’s just not here anymore.” I want to tell her that I still get glimpses of the woman who raised me and I wonder how soon the day will come when I can no longer find her.

I witness on a daily basis how little people know about dementia or how to interact with someone with cognitive impairment. It took some time for my siblings and myself to adapt. I hope that I can help others learn that the conceptual id Sigmund Freud identified is still intact and as I have witnessed, even someone with moderate dementia recognizes the slight. My Mom starts to turn into the lion after our lunch mate makes these comments. When my Mom is threatened or confused, she becomes very combative and I haven’t seen her this way in several weeks. I quickly find a way to excuse ourselves and get back to painting to I can spend the rest of my visit with the lamb. Escaped.  

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The right place for Mom

longroadFor several months, my siblings and I visited a variety of communities to determine if we might be able to find a better place for my Mom. My Mom is in a very nice Assisted Living facility, but it’s geared to help a variety of individuals manage the activities of daily living (ADLs). When you have dementia, just having help and reminders is not enough. Most of the activities aren’t geared to someone with dementia, and we believe my Mom needs a different environment.

Two weeks ago, my Mom’s current community launched a daytime program to engage her, and five other residents from 9 a.m. to 3 p.m. While my Mom can’t remember her day to share it with me, I have found a very different person when I visit now. On my last two visits, my Mom wasn’t sleeping but was sitting out in the courtyard peacefully on a rocking chair. While we are chatting, another resident walks by and my Mom raises her hand and cheerfully waves to someone I recognize, but have never met. The new program seems to be agreeing with my Mom.

I retained one of the women who we hired to help my Mom when she was going through periods of “unbecoming behavior.”  She has earned my Mom’s trust and offers my Mom companionship at dinner as well as can help ensure Mom’s laundry get’s done. My Mom usually hides her laundry making it difficult for the staff to be able to simply offer her that support. We still have a few gaps in her care (showering and general personal hygiene).

So many of the challenges in my Mom’s care have been to help us address behavior that doesn’t quite fit into the standard care needs for someone in Assisted Living. For that reason, we have put her on a wait list at a facility that is only geared to help its residents who have dementia. The idea of moving my Mom makes my tummy hurt and my heart race. But I was never of the belief the journey would get easier.  Fortified. 

Related posts:

What should a community include for a person with dementia?

Is my Mom in the right place?

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The financial costs of aging in place … are you sure?

retirementfundsAs I face the reality of the high costs of my Mom’s care, I’m working on creating my ideal aging story line. What I realized as I have watched my parents was that while most of us bought into the traditional concept of “retirement” with open schedules and the pursuit of hobbies, that model undermines healthy aging. We all want to live a life with purpose and that doesn’t stop in retirement. The idea of free days conflicts with staying engaged, accountable and productive. I decided I needed to change my life so that my pursuit of purpose didn’t feel like work. I found it when I launched MemoryBanc.

To help me plan better for the rest of my life, I’ve been reading up on as well as attended an event recently hosted by AARP on what to consider if you want to “age in place.” The real number is much more complex than just adding up the changes you may need to make your home more livable. As I recently mentioned, my Mom is living in a Continuing Care Retirement Community (CCRC) that involved a very large sum of money that was used as a down payment and considered “pre-payment” toward needed services. Even with that she’s paying a base fee of around $7,500 a month to be in Assisted Living. As I recently shared, some months have been closer to $12,500 as we have had to hire extra assistance since typically Assisted Living is not designed for individuals with cognitive loss.

If you want to stay in your home, you should consider how it might suit you should you develop mobility issues. However, my parents only temporarily faced that issue when my Dad broke his hip and needed a place to rehabilitate. Thankfully, one of the benefits of the CCRC agreement was that my Dad could move into their skilled nursing until he was able to manage on his own. My Dad was able to recuperate and as soon as he could manage stairs, they were back in their 3-level town home.

I believe there are other factors more important to consider than the cost of adapting your home for your aging lifestyle. In our case, both my parents developed memory issues (Vascular Dementia and Alzheimer’s). They were unable to recognize their inability to manage. Had they not been in a CCRC, my siblings and I would have had to petition the court for conservator and guardianship of my parents. If you know someone with dementia, you know that while they might not remember if they just ate dinner, they will know that their child has taken them to a public court proceeding and is charging that they are unable to manage their own affairs. None of us could have foreseen this scenario, but we were days from filing the petition when their CCRC acted and helped us manage a move into Assisted Living. Even with estate plans in place, we were faced with this difficult choice.

I haven’t gotten very far but do know that now, there are no perfect answers. What I hold true is that having your family members involved and having these discussions early are the key to making the most of the rest of your life.Studied. 

 

Related stories.

The Financial Costs of Aging in Place

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Life Regrets? Seems many are toting some baggage!

50isNiftyUSA TODAY just shared a recent survey that showed life regrets can shape later years. As someone who has been caring for a loved one, I’m focused on not repeating history.

I have been reading the studies and have made several changes in my life in an effort to build a new and improved aging storyline. In 2012, I shared the 5 ways I planned on aging better than my parents which included cultivating meaningful friendships, documenting the little but important things, questioning and understanding my health state, finding work I enjoy and continuing to work as well as exercising and eating right.

I am a very competitive person and once I set my goals, I work to knock them down and make them part of my life. I have accomplished my goals and will add that after I appeared on Dr. Oz, I have incorporated more fish (or fish oil) into my diet.

While watching and caring for two parents with dementia would never be the path I would choose, it has changed me in many positive ways and helped me find work I enjoy and something I will continue to do for as long as I am physically and mentally able.

I was a little saddened that the study revealed that for older Americans:

  • 48 percent have the support of friends and family
  • 32 percent are happy about their living situation
  • 30 percent are well-prepared financially
  • 29 percent are in good health

Those all seem like very low percentages to me since you can easily flip them to say 52% percent don’t have the support of friends and family, 68% are unhappy with their living situation … you get the point.

Of the regrets, in the top 5, Americans included “keeping legal documents organized”. My parents had done the financial and estate planning and I had the legal documents. The legal tools don’t always work, and they don’t include all the information you need to assist someone if they need support.

As I celebrate my 50th birthday today, I’m proud to have launched MemoryBanc in order to help others organize and protect their important papers and documents. The recognition from AARP Foundation as an “older-adult focused innovation” fueled me to pursue my upcoming book with AARP. For any of you looking for a solution to collect and organize your personal papers, please take advantage of a 10 percent discount using coupon code “GRACE” to order the MemoryBanc Register. Celebrated.

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The high cost of dementia care

bag of moneyI have been acutely aware of the cost of caring for my Mom who has multi-infarct dementia. The average monthly cost just for her Assisted Living community is $7,500. When she was exhibiting episodes of unbecoming behavior, we were required to hire additional assistance which cost $5,000 a month. That translates to $90,000 just for the community. Some months totaled $12,500. We are in the metro-DC area.

Thankfully, my parents planned well and my Mom has money to cover these expenses — for now. However, I don’t think they expected that the funds would have to be used to pay these kinds of fees. They bought into a Continuing Care Retirement Community (CCRC) believing they were buying into discounted care fees.

When we were told a few months ago that we might need to find a new home for my Mom by her community, we started to look around. We realize there are a wide variety of community options as well as range of fees. Given what I’ve found, I am not clear on what the very large down-payment did for their finances. I do know that the community support saved up from having to pursue guardianship of my parents when they didn’t recognize the impact of their changing cognitive abilities.

There is no perfect answer, but we can validate the reality of the high cost of dementia care. We are fortunate my parents planned — I can only imagine how much more difficult it would be if my Mom didn’t have the financial resources to find the right care. Wondered. 

Related articles:

The High Costs of Caring for Someone with Dementia by CBS News

 

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Here come the health complications …

momsleepingontableFor some time, my siblings and I have wondered if my Mom is in the right place. When we had to hire personal assistants for my Mom who is in Assisted Living, we started to look at other communities. We were having to spend about $5,000 a month on top of the monthly Assisted Living fees of $7,500. GULP! We are blessed because my parents saved the money to be able to cover these expenses — but it doesn’t make them seem any less gargantuan. For those of you familiar, this is a Continuing Care Retirement Community (CCRC) and that is a “discounted monthly rate.”

Our goal is to find the right care for my Mom as well as be a good fiduciary representative of her money.

I hired a firm to help us find the right community for my Mom. We have dozens in the metro-DC area to choose from. My siblings have been coming to town to visit the final communities. We decide that one dedicated to dementia care would be the best fit for my Mom. However, during this process, my Mom had some health issues.

I took my Mom to the doctor because the Assisted Living community suggested we follow-up the initial tests from her primary care physician. Her general diagnoses is “Congestive Heart Failure” which is apparently very common in anyone over 80 years of age.

My Mom is sleeping most of the day now and I have to wake her when I arrive to take her to the Cardiologist. A few weeks ago, my Mom started walking very stiffly. As we walk to the car, she lets me hold her hand for support. She doses off in the waiting room and when we reach the examination room, she just wants to lie down and sleep. She actually sleeps through the EKG. I feel a sense of deja vu back to my Dad’s final doctor visits.

The Dr.diagnoses her with Diastolic Heart Failure. There is really nothing to do since she is not complaining of any symptoms or pain. He tells me what to watch for (swelling feet, weight gain). Last time the swelling self-resolved, but if it doesn’t, they can put her on a diuretic to help her eliminate the retained water.

We now have to weigh our decision and hedge our bets that Mom won’t need Skilled Nursing if we move her to the community dedicated to dementia care. Their goal is to have our Mom live the rest of her life in their community, but more complex health care issues may mean that she would need Skilled Nursing at some point moving forward. Just when you think you have a clear path, the choices get muddied. Befuddled. 

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Making Good Decisions When Managing Someone Else’s Money

Many of us who are caregivers, are also managing finances and bill payments. I was the child who lived the closest to Mommanagingsomeoneelsesmoney and Dad when their health started to fail, and although my siblings wanted to help, they were separated by too many miles to realistically play an active role in paying our parents’ bills, acting as their medical advocates or managing their household. Those responsibilities naturally fell to me, and the amount of information I needed to manage quickly became overwhelming when it was added to all that I was already doing for my family.

Desperation is the mother of invention, and I decided to create an organizational binder that would help me collect and catalog my parents’ information. I created a one-stop-shop reference resource that helped me save time finding information. Perhaps most important, it allowed me to easily hand over all of our parents’ information—in the form of one, easily transportable book—when a sibling came to town to provide some much-needed caregiving relief. The system launched MemoryBanc.

In addition to managing a lot of new information, I ran into several unexpected roadblocks along the way: During my parents estate planning process, I was given and held their Durable Power of Attorney (DPOA). However,  despite the validity of the DPOA,  it took many phone calls and in some cases several months for the DPOA to be acknowledged and processed.  When some financial services firms refused to accept it, my father and I set up online access to the accounts so I could help them by directly acting on my parents behalf online.

In talking with friends about my experiences, I also realized that planning for future, life-changing events is something all of us seem to recognize as being important, but it’s one of the first things we put on the back burner. There are a million excuses, and I’ve lived many of them. But we need to change our attitude that doing it “later” is okay:  According to the 2011 Disability Insurance Statistics Bank: JHA Disability Fact Book, “43 percent of all people age 40 will have a long-term disability event prior to age 65.”

For these reasons, I strongly urge every adult to work with a lawyer to create a Durable Power of Attorney. It should only cost a few hundred dollars.

If you are named as the fiduciary in a DPOA, you should download the free publication called “Managing Someone Else’s Money“. It includes great recommendations as well as good information on steps to take if your run into a roadblock using a valid DPOA. Recommended.  

 

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