Category: My Dementia Caregiver Story

My Mom Hated the Hospital

Ihospital guess I should have realized this years ago. However, it didn’t really hit me until Mom was in the ER after she fell and broke her hip. She was frightened. At this point, she’d had another minor stroke and did not know who I was. Attempts to give her peanut M&Ms to soothe the misery resulted in me digging them back out of her mouth when she didn’t seem to know how to swallow the chewed up candy.

Today is my son’s 21st birthday, and it is dawning on me that I should have picked up on this years ago. On day 2 of my labor, my dad shows up at the hospital wondering what is taking me so long to deliver my son — my mom was no where in sight.  They usually always traveled as a pair.

A decade later when Dad fell playing racquetball and broke his hip and needed surgery, my Mom forbade me to visit him in the hospital. After she got him checked in, she called to have me pick her up and take her home. I thought it was bizarre that she wasn’t staying through the surgery and when she found out I went anyway, she made my sister call and yell at me.

I’d been to medical appointments with her and she was always aloof and dismissive of any medical issues I thought she should be sharing with her doctor. Looking back on all of her reports that she “passed” her physical, I have to laugh at my inability to recognize how much my Mom despised the hospital.

As I approach  what would have been her 87th birthday, I’m relieved she is free of this earth and the dementia that stole her away from us piece by piece. I’m also humbled by my total lack of insight and only hope what I learned will come in handy as I work to give back to others who are engulfed in their caregiving journey’s.

We are doing the best we can with the information we have. Your loved ones are lucky to have you working for their benefit. Keep up the good fight. Admitted. 

 

DealingwithDementia Named a Top Alzheimer’s Blog for 2018

I’m honored to be named a Best Alzheimer Blog for the 3rd year in a row by Healthline.

For those of you that have been reading for a while, you know I kinda have a beef with the use of Alzheimer’s. It is confusing to the millions of families who have loved ones with one of the other forms of dementia … of which Alzheimer’s is one type. I found this diagram a few years ago because I was totally confused when I was told Dad had Alzheimer’s, but Mom had Vascular Dementia.

What is Dementia
Understanding Dementia

I plan to continue writing and hoping I can help make this journey for others a little easier. Encouraged.

I could finally let it go.

keywallet2I have a host of small memento’s to my parent’s lives all over my home. Last month I saw that I still had my dad’s key wallet when I was digging through the key drawer. It’s in sad shape and had been when my Dad still carried it with him. What used to hold seven keys was now only managing two — and one of them was to a storage closet in their retirement community that was no longer theirs, but it didn’t matter so on the key wallet it remained.

That key wallet was part of my Dad’s habits. He never misplaced it, and always picked it up and put it in his pocket when we left their apartment … all the way into a moderate stage of Alzheimer’s. When I saw it last month, I thought about dropping it into the trash, but just wasn’t ready to do it. It brought to me a host of great memories.

It ended up in my key drawer because after my Dad passed away and my Mom came across it in her apartment, she asked me to take it to him in the hospital. The months after my Dad passed away were really difficult for us all, but most for my Mom who couldn’t remember he had died, because she was in a moderate stage of Vascular Dementia.

Why would I want to keep it?

I could still imagine it in my Dad’s hand and then him quickly dropping it into his pocket. When I held it, I could imagine he was still here for a moment. So I put it back in the key drawer. I wasn’t ready to toss it quite yet.

When my husband decides to attack the key drawer today, I notice this is sitting in the odd-ball pile. I pick it up, exhale, and let it drop into the trash. I’m ready to let go of this memento.

I don’t need to hold onto this sad key wallet with useless keys. I have a host of rich memories and traditions that allow me to let go and move on. It’s time. Celebrated. 

Another reason to eat our veggies!

leafygreensResearchers at Rush University Medical School in Chicago found that “one serving of leafy greens a day may slow brain aging by 11 years.”  I initially read the story in The Washington Post that reported “eating as little as one and one half cups of lettuce daily — or a bit more than half a cup of dark leafy greens — may delay the decline in memory and thinking skills that occur with age.”

For those of us with family members with any form of dementia, any and all proven methodologies are gladly received.

The report from Rush states that “cognitive abilities naturally decline with age” which is not the same as the wording in the The Washington Post story that gives you the impression that our memory will decline with age. I see and hear people buy into this belief too often.

In general, our processing speed does slow down staring in our 50s, but memory loss is not a normal consequences of aging. To quote Dr. Green of Total Brain Health, most of us have a “getting problem, not a ‘forgetting’ problem.” There are many things we can do to rev up our recall, and lots of reasons why we might not remember something which doesn’t mean we are showing early signs of dementia.

If you are having memory concerns, go see your doctor. If they don’t take your concerns seriously, ask for a referral to a neurologist. There are many mild cognitive issues that are reversible.

I watched as the doctor’s dismissed the overwhelming number of early warning signs for my parents and hope everyone has a better chance to battle and weather the life-stealing  beast of dementia.

Now off to the store to buy me some greens. Hungered. 

For more on the full report, you can visit: Neural and behavioral bases of age differences in perceptions of trust.  In summary:

“Older adults are disproportionately vulnerable to fraud, and federal agencies have speculated that excessive trust explains their greater vulnerability.

Two studies, one behavioral and one using neuroimaging methodology, identified age differences in trust and their neural underpinnings. Older and younger adults rated faces high in trust cues similarly, but older adults perceived faces with cues to
untrustworthiness to be significantly more trustworthy and approachable than younger adults. This age-related pattern was mirrored in neural activation to cues of trustworthiness. Whereas younger adults showed greater anterior insula activation to untrustworthy versus trustworthy faces, older adults showed muted activation of the anterior insula to untrustworthy faces. The insula has been shown to support interoceptive awareness that forms the basis of “gut feelings,” which represent expected risk and predict risk-avoidant behavior. Thus, a diminished “gut” response to cues
of untrustworthiness may partially underlie older adults’ vulnerability to fraud.”

I’m waking up at night in a state of panic

old-people-couple-together-connected.jpgI visited a couple that has lived in their home for 40 years. It’s obvious they are happy together. The wife called to ask me to come help her understand what she might do if her husband gets ill and can’t manage the finances. “I wake up in the middle of the night in a state of panic”, she shared.

We started talking through the basics. It’s easy to figure out where the gaps in plans are when you throw out a for instance. When I asked “Who would manage the bill payments and mind the Retirement Account if you had a car accident and needed a few weeks of rehab?” The husband didn’t have an answer. They have estate plans with powers of attorney set up, but they are over ten years old and his wife is telling him she doesn’t know where to begin if she had to pick up the reigns of the finances. He has a roster of their accounts and created a file for his burial, but no one has the practical knowledge to step in and manage while he recuperates.

We all need to create a practical back up plan. Just having a durable power of attorney (POA) for finances and a medical power of attorney for health care won’t cut it unless you have spent the time to educate the individuals you have named. Do they have a copy and do they know what to do to help you? If a Trust has been established and assets are named to the Trust that adds another level of complication — your Trustee, not your named POA is the only one with rights to control those documents.

For most adults, the two most important documents for everyone over 18 to have in place are financial and medical powers of attorney. Those powers impact you while you are living. Sadly, the stats from the Dept. of Health & Human services tell us that at minimum, 70 percent us over 65 will need someone to speak on our behalf while we are living.

For a cheap way to get this started, you can:

  1. Download a free copy of “Save or Shred” that includes a checklist of the important documents and details you need to gather, or
  2. Order a copy of MemoryBanc: Your Workbook for Organizing Life that will walk you through the process.  This book was named book of the year by Today’s Caregiver and includes the information your loved ones would need to help you.

It won’t take long to get this together, but you need to start. Encouraged. 

Seven ways to avoid the health scams targeting seniors

fbiThe FBI did a presentation in November for AARP that had some valuable information that can help older adults. In working with seniors now, I often seen many of these scams played out and work to undo and recoup money that has been siphoned away through exploitation.

The majority of senior scams start when the individual offers up their medicare number or credit card information. Nothing was stolen, it was actually given away. For this reason, I suggest that loved ones and family consider how to offer support.

Most seniors will not share the fact that they were exploited due to embarrassment as well as fear that their control over their own life will be taken away … even by well-meaning family. I know, because my family experienced it. We saw a variety of different ploys that impacted our parents financially. I started by trying to work in tandem with mom who was “in charge” of paying the bills. It takes lot more time to do in tandem. Thankfully, my dad helped navigate the issues since he knew mom was struggling.

Eventually, when money just caused anxiety for mom, I started handling the finances and would just give her a quick, positive report to assuage her concerns. If you aren’t local and don’t have the time, consider hiring a Daily Money Manager. They can help your loved one stay independent, but benefit from their expertise to avoid frauds and scams. You can research local resources at the American Association of Daily Money Management here.

In terms of health fraud, the FBI recommends:

  1. Never sign blank insurance claim forms
  2. Ask your medical providers what they will charge and what you will be expected to pay
  3. Review your insurance benefits statement
  4. Don’t work with door-to-door or telephone salespeople who tell you that services or medical equipment are free (check out a related post on the subtle abuse you might not notice that discusses these “free” offers — they are never without a cost.)
  5. Only give your insurance information to medical service providers; if asked for your insurance number in exchange for money report it!
  6. Keep accurate records of your health care appointments
  7. Be weary of rolling labs found at health clubs, retirement homes, and in parking lots.  You are offered a free or low cost tests which may be totally unnecessary and possibly fake. You give them your Medicare or other insurance information which is what they want. Once they have your name, they may bill for services that were never performed. You may not know it, but you’ve participated in a fraud.

I am constantly surprised at the amount of energy and effort, as well as complicity, involved in these efforts to exploit money from older adults. The best defense is a good offense. I hope this gives you an idea on how to help a loved one that needs it. Convinced.

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. 

It’s time to lock our credit.

CreditfraudfreezeIf our lives as caregivers weren’t busy enough, there is one additional step to consider if you are caring for a loved one. Given the number of breeches, especially for a loved one that doesn’t need to open a line of credit, it’s time to either put a FRAUD ALERT or a SECURITY (Credit) FREEZE in place.

Fraud Alert tells creditors they need to take reasonable extra-steps to confirm that it is you asking for credit. It lasts for 90 days and includes a free credit report.

Security Freeze locks your credit and requires action (and for now $10 to lift the freeze or re-freeze it) on your part to access credit. It took me about 30 minutes to do it online for all three. Be forewarned, you will have to be able to bring up past credit history and addresses — which is why I am an advocate of having one place for writing it all down. A great tool (it’s my book) can be found on Amazon.

I choose to use a Security Freeze for myself since I don’t foresee many situations in which I will be applying for credit in the coming years. Here are some links to each of three big bureaus:

Equifax Link to Freeze your credit: https://www.freeze.equifax.com

Experian Security Freeze: https://www.freeze.equifax.com ($10.00 fee)

Transunion Security Freeze: https://www.transunion.com/ ($10.00 fee)

Watch out for the upsell. Many of the sites will try to get you to buy their monitoring services. I don’t recommend those because I have found they just make you more concerned and the truth is that you have the ability to put the protections in place for free or a minimal cost.

To view the story on the report from Consumer Reports, click here.

Please let me know what you chose and what you found if you initiated one of these services for you or a loved one. Protected. 

Sense of Purpose Equals Happier Seniors

BeingMortalEventPicI’m involved in the local village for my town. We hosted an event with Dr. Atul Gawande, the best-selling author of Being Mortal. Over 300 residents joined us to watch Dr. Gawande talk and discuss how we can prepare my home town of McLean, VA for the rest of our lives. There is no simple answer.

Every adult should read his book. Not only does it frame the issues we face as caregivers, it gives us the facts about how to better plan for the rest of our lives.

Story after story discussed how simple things like caring for a pet, a plant, being able to make bad choices for yourself, all enhance the lives of those that need help with the activities of daily living. Just because someone needs help getting dressed, or reminders to help them navigate their day, doesn’t mean they no longer have the need to be needed.

The book delves into how many communities focus on safety, which is what the kids/loved one might want in a community. However, the person that is moving wants autonomy. And often, those interests conflict.

Several papers have recently run the story by Judith Graham “Retirees with a sense of purpose seem to do better health-wise as they age”. Apparently, dozens of studies have shown that seniors with a sense of purpose in life are less likely to develop Alzheimer’s disease, mild cognitive impairment, disabilities, heat attacks or strokes, and more likely to live longer than people without an underlying motivation to “give purpose to their life.” The article goes on to discuss that most often what is lost is the opportunity to contribute meaningfully, rather than the interest to do so.

For those of us caring for loved ones, are their ways we can incorporate more responsibility into their lives? If mom gives up her car keys — can you make sure she can still volunteer at church? If you move dad from his home, can he take his dog and still care for him? Instead of doing it all for them because it’s quicker, are there things you can give them to tackle? Sorting socks, folding towels, watering plants?

For most American’s, “independence will become impossible” (Being Mortal). Unless we have an instant death, someone is going to have to speak for us and the statistics say 9 out of 10 Americans will need someone to speak on their behalf before they die (Veteran’s Administration & NIH Study.) Are we even ready for the rest of our lives?

It’s time we reconsider how to have a good life all the way to the end. Is there a way you can help make this difference in someone’s life now?  Challenged.

** If you are looking for resources to help you, check to see if there is a local village in your area. They not only have social opportunities, and vetted resources, but also might be able to offer some ways to volunteer back into your own neighborhood. You can visit this page to see if there is a village near you. 

Males Most Susceptible to Scams

According to the BBB Scam Tracker Annual Risk Report, Males are the most susceptible to 7 of the top 10 scams they studied. While I think the reports on scams are hard to pin down because from what I’ve witnessed, many people that have been exploited didn’t even recognize it. This report summarized over 32,000 scam reports reported to the BBB with the top scam being home improvement. It might just be that more males report being taken advantage of than females.

BBBTop10Scams

The reality is that there are too many people that make a living by cheating others out of their money. The best way to combat these concerns is to start thinking about how you can protect yourself from becoming a victim. One of the ways I suggest to clients when they find out they were taken advantage of is to reflect back on the offer. Was it too good to be true?  Should an offer for something free require your credit card? Did your gut hurt because you felt pressured into making a decision?

I know it seems silly to suggest using your stomach as a guide, but most often our basic human instincts still exist to protect from all kinds of trouble. Suggested. 

Letting us in.

Driving-Miss-Daisy.jpgOne of my favorite guilty pleasures is watching TV in bed on a Saturday morning. I usually find a well-regarded movie, prop myself up with some pillows, and just watch. This past weekend I landed on Driving Miss Daisy.

Oof-dah. All was well until the last 15 minutes! So much about Miss Daisy reminded me of my mom. She was specific about how she wanted things and fiercely independent. It made it really hard to help in the beginning when we recognized mom was having trouble with some day-to-day tasks. I learned to be softer in my approach and available to help when she might accept it.

The part that took me down was near the end. Miss Daisy, now living in a care community, readily accepts forkfuls of pumpkin pie from Hoke (the man hired to drive her after she backs it out into the neighbors yard and totals her car) who comes to visit her. Hoke was always there for Miss Daisy. She wasn’t going to bend, so Hoke always did. Finally, Miss Daisy recognizes how loyal and helpful Hoke is well before she starts to show signs of dementia. The scene makes my chest tight and leaves me sobbing for nearly twenty minutes. I distinctly remember a few times when my mom let me feed her and looked into my eyes with appreciation. My heart swelled each and every time.

I learned that once my mom was having cognitive issues, I couldn’t expect her to change. I had to change. We (my siblings and I) made life choices for her when she no longer could and she adapted, but she still had a feisty side. It wasn’t until the last year of her life when I saw her soften. I remember recognizing the sea change in our relationship when she gratefully accepted help, and thanked me for it.

Should I end up with a similar fate, I’m not sure I will behave any differently. Will you? Wondered.