The indignity of aging: Caregiver Exploitation

stealmemeIn the past few weeks, I’ve been involved with three older adults who have been the victim of fraud and exploitation and it’s both fueling my commitment to serving older adults and whittling away my belief in humanity.

It’s been distressing and discouraging on many levels.

Every year, the National Council on Aging predicts that $17 Billion is taken by businesses, individuals, and charities that use pressure tactics or misleading language to lead seniors into financial mistakes.

CAREGIVER EXPLOITATION: The first older adult lives in an assisted living community. She is unable to manage her affairs now and I pay the bills on her behalf. She’s been declining and a new caregiver coached her through writing a check for $100.  When I discovered it, I immediately reported it to the community and it resulted in the loss of her job.

I’ve been working with this client for more than two years and know that it would have taken at least ten minutes for her to write that check. She would have been unable to complete it without step-by-step coaching. We reported it to the police and hope they will be able to charge her for this crime. What I learned during this process is that she has been working in senior-living communities for almost a decade. YIKES!

Did she start small to see if anyone noticed the check?  Had we not found it, would she have returned for more money every week?

I’m not sure we will ever truly know.  What I do know is that she most likely made my client very uncomfortable and that makes me angry and sad.

I decided that what I could do was to let the owners of the local home care agencies know her name and what she did. Gotta admit that I made A LOT of phone calls. However, I hope that it can help avoid this happening to someone else. None of these agencies would want her on their payroll. I’m sorry that it’s not easier to prosecute those that pray on older adults.

This is just a reminder that being watchful and protective can make a huge difference for those you love. Fueled. 

I’m ready to die

shouldistayMy client just shared this with me today. She’s 92, and the last few months have been difficult. She’s been having hallucinations, phantom pains, and doesn’t quite remember much about her past. While it’s sudden delivery surprises me, I also recognize that I would love for us all to be able to reach this point and gracefully exit.

She is always a delight to visit. She thanks me for helping and she follows along as I lead small talk about her son, her past, and the activities in her community I know she enjoys. So this statement, so definitive and bold, startled me.

She has enjoyed a wonderful life. May we all be able to choose our exit. I know my mom desperately wanted to avoid ever having her kids help care for her. I tell myself I hope I will be able to know when I’m taking more than I’m giving and gracefully end my journey on planet Earth … but I can’t imagine how to ever make that happen. Wished. 

 

Mom is back in the hospital

cargiverburnoutWhen the primary caregiver fails, it’s really hard to quickly pick up the pieces. In this case, Mom has been caring for Dad with Alzheimer’s, but now Mom has health issues that landed her in the hospital.

If the caregiver ends up in the hospital, the mad scramble from Plan B begins.  Most families are totally unprepared and it surprises me how often this happens given all the data available to educate us on how important it is to have a plan in place.

According to the Family Caregiver Alliance nearly three quarters (72%) of caregivers reported that they had not gone to the doctor as often as they should, and more than half (55%) had missed doctors appointments.

More alarming is that elderly spousal caregivers (aged 66-96) have a 63% higher mortality rate than non-caregivers of the same age.

If you have a parent who is filling this role, it’s time to sit down and have a real conversation about how to create a Plan B should something happen to them. Is there some way to help them now before a crisis? What can you do now to be prepared to easily step in if they are unable to fill the day-to-day role of caregiver?

Maybe over dinner or a cup of tea, could you ask:

  • Tell me about your average day. How often and how are you helping mom/dad?
  • If you fell and ended up in the hospital, what could I do to help mom/dad?
  • Have you found any local support groups?

Spousal support groups can really help since many will discuss how to set up Plan B as well as how to minimize the stress of caregiving. In fact, I heard these stats from a support group leader.

The best way to help is to start from a place to help the caregiver be successful. Most of the pushback I see is when the family wants to take over. Start by asking for a job you could do to help them both.

Trying to put plans into place from the hospital or from another state just creates more stress for everyone. I hope you will have an opportunity to discuss this before you may ever need to use what you learn.

If you need to get some immediate help to navigate medical issues, I hope you will look into finding a local Aging Life Care Manager. You can learn more or search for one in your area at www.aginglifecare.org.

If you want a guide to start having a conversation around what you need to step in and help, you can use this list of key documents and information you would need to help manage the finances and maintain the household.

The reality is we should all have a Plan B in place. I hope this guide will help get started. Shared.

A Funny Video on How to Start the Conversation about End of Life Wishes

We avoid this conversation, but I know the guilt caregivers feel when they aren’t sure if they are doing the right thing for their loved ones. It’s time for us to start having the discussion about end of life wishes since 9 out of 10 American’s will need someone to speak on our behalf before the end of our life according to a joint study done by the National Institutes of Health and Veteran’s Affairs.

Watch this funny video from The Conversation Project to get started. 

This Thanksgiving or at your next family gathering, I hope you will carve out some time to start the conversation with your loved ones on how you plan to live the rest of your life. The kits listed below offer some inclusive ways to begin this discussion with your loved ones.

I am lucky my parents shared their thoughts with me. It made a difficult journey a little easier. However, I had many choices to make that were gut-wrenching that we never covered, but the fact that my parent’s made it clear that they wanted quality of life over quantity of life made those difficult decisions easier for me and my siblings.

They have both a general conversation kit, and also one tailored for individuals with Dementia.  

I hope you can find a way to bring these resources to your own family. Hoped. 

 

 

 

When a Credit Freeze Makes Sense

creditfreezeThe credit bureaus just removed all fees from the credit freeze process. To protect myself, I implemented a credit freeze about a year ago. I can unlock it when I need to make a purchase (and now there is no fee to do this), and I am not at a stage in my life where I need to open new credit accounts.

For those of you caring for someone with dementia, this could add a layer of protection against any concerns of fraud.  Before you put a credit freeze on your account, set up your online account with Social Security. Once you implement a credit freeze, you won’t be able to do this online with social security — because it basically freezes the ability to use your social security number. At least that is how they explained it to me because I froze my credit, THEN tried to set up  my online access. I can still do it but have to come into the local social security office. Mea Culpa!

Freezing your credit is free. However, as you go through the process they will try to sell you additional services and notifications. I’m a little appalled that they expect me to pay for a service to notify me when my credit card number is found on the “dark web” since I believe this should be part of the service my credit card company manages to protect me as a card holder.

In general, if you are looking at your bank and credit statements and checking the mail, you shouldn’t need additional services. However, if you have a loved one with dementia who is still managing on their own, putting this in place might be a second line of defense against fraud or scams.

A credit freeze doesn’t protect against fraudulent charges against an existing account (you still have monitor bills and statements) nor ensure that someone doesn’t try to file a fraudulent tax return.  But it does offer a layer of protection against accessing your credit.

If you decide to freeze credit, you will need to unlock it should they later consider moving into a care community.

To start the freeze process, you will need to contact the big three bureaus:

Equifax: Visit this site to start the process: https://my.equifax.com/consumer-registration/UCSC/#/personal-info

Securian: To request your free security freeze, visit Experian’s Freeze Center or call 1 888 EXPERIAN (1 888 397 3742) and provide the required information.

Transunion: Visit this site to start the process: https://www.transunion.com/credit-freeze

I think anything you can do to protect yourself and your loved ones is a advisable.  However, we all have different levels of comfort, and you need to do what is right for you and your loved ones. Shared. 

Driving, Dementia, and the Right to Drive

dementiasherpaAs the adult child who watched the dings accumulate on my parent’s car, and then as they continued to drive after their licenses were revoked, this topic still makes my tummy and heart ache.

However, as a Daily Money Manager, I’m now having these discussions with my clients who have hired me to help with the daily finances and bill pay usually because of health issues, and also hearing them lament over their children’s suggestion they give up the car keys.

This week, a client diagnosed with Parkinson’s and that by self-admission is having issues finding words and managing bills is very angry at her children who are suggesting she stop driving. When I asked her what her neurologist said when she asked about driving and safety, she said the rules tell him he has to write a note to rescind her license only if she is passing out. God Bless America. We have made driving a right you receive, not a right you earn and must continually qualify for.

I shared with my client that her adult children are worried for her safety, while she is fighting for her independence. I gave her some examples about how driving can be challenging because she will have to make split second decisions when she’s behind the wheel of her car.

As we discussed the topic a little deeper, she said she was going to voluntarily give up the car keys, but is now so mad that her kids are demanding she give them up, she is fighting to keep driving. My bent toward logic made me talk that through with her a little, but right now, she’s wants understanding and is devastated at the losses she is facing.

I left hoping I could wave a wand and make this easier for everyone. I can now clearly see how this topic is so difficult for every family.

I recently was introduced to Christy Turner, The Dementia Sherpa. She offers a host of great suggestions on how to better  communicate with your loved ones diagnosed with dementia, including some tips on how and when to navigate the issue with driving. Dementia just stinks. Recommended. 

What to look for in a Memory Care Community

happyincommI still recall the three days before my parent’s were moved from Independent Living into Assisted Living at their Continuing Care Retirement Community.  Because it was a “life care” community, we didn’t have to do the community search. However, the idea of moving them from their 1,800 square foot apartment to about 500 square feet made me physically ill. My Mom was vehemently against the move and threatened to move out. The community forced the move because they were now a danger to themselves and others.

I called in my siblings to help with the move and they all rallied to support this transition.

I still was sick over the guilt I felt knowing my Mom didn’t want things to change. I understood, but also knew I couldn’t keep plugging the holes in their day-to-day routines they could no longer manage. What surprised me the most was how happy my parents were after the move to the MUCH smaller apartment.

What I see today are a host of confusing choices for families to make. There are now at least 10 new memory care communities that are offering hotel and spa-like amenities in our metro-area. They are lovely communities, but the room size and the counter finishes should be the last thing you consider when you make a choice for a Memory Care community.

Here are my recommendations on the key steps to take:

  1. Tour the community at different times.
    Breakfast: How do the residents look? Are they dressed and is their hair brushed? What is the vibe of the room?
    3 PM:  Is there an activity going on and how many of the residents to you see?  How many are gathered around a television? Do you see a lot of the residents sleeping?
    6:30 PM: After dinner when many residents with memory issues might be agitated.
  2. Do the employees know the residents? As you tour, do you see the employees engage with the residents and do the residents respond when spoken too?
  3. Is there a Family Council? Does the community respond to requests from the Family Council? Ask to speak with the President to understand how the community addresses issues. There are always issues, so ask for the President to describe something recently they raised and how the community responded to it.
  4. Ask how they deal with end-of-life and how many of their residents did they lose in the past year?
  5. Find out how many residents they have discharged? We have a community that sends the residents with behavioral issues they are unable to control to the hospital and they decline to allow them back into the community leaving the family in a lurch.

Do you like the soft side of the community? That is what matters when you have someone with dementia who can’t be their own advocate.

You need to do your due diligence. I’m seeing families fall for the allure of the facility and skip the real meat of understanding how the community engages with and cares for the residents. They have a good spiel and the community is lovely, but what you need to learn is how do they care for those living there.  A year later, I see families frustrated and unhappy with how the community is responding to their loved ones needs.

I fell in love with the community representative when we moved my Mom (see link to those postings below). When she moved, I noticed the difference. She had a unique connection with my Mom. Luckily, the Executive Director for the community was engaged and had made a connection with my Mom as well. However, staff changes and it’s a testament to those communities that have employee longevity.

Don’t be swayed by the granite counter tops and larger rooms. In my experience, more space wasn’t necessarily a good thing for someone living with dementia. Look for the communities with good track records, and where you see the staff truly engage with their residents and that have residents that respond. That is the real testament to good memory care community. Advised. 

A few older posts on my journey to find the right community for my Mom. 

Your Mom is Not Doing Well in Assisted Living

What is Right for Mom? Assisted Living vs. Memory Care

Flirting with Normal

How Activities Benefit Individuals with Dementia

Mom Would Never Dance if She Living with Me

Embracing the Suck of Dementia

embrace he suckApparently, this is a term that is familiar to those that have served in the military. As an Army brat with continued ties to my extended military family and familiar legacy, I hadn’t heard this term, but adore it’s simplicity and application for caregivers. In short “embrace the suck” is meant to convey that things won’t be easy, but others have been there and now it’s time to deal with it.

I remember having this sense at varied times during my own caregiving journey.

  • As I took over the finances and was feeling overwhelmed by the task, I recalled when Mom fought to maintain her checkbook and was indignant that we suggested she couldn’t manage.
  • When I found my Dad’s key wallet in my own key drawer, I reflected on how difficult it was to get them to stop driving. The DMV had rescinded their licenses yet they still kept driving. I watched as my Mom tore up the letters notifying them. Neither of them remembered being notified and thought I made it all up.
  • When I brought out a deck of cards to play with my Mom, a Bridge Life Master, and she had no interest in playing.

For all of those times when I feared for their safety and well-being, there was a moment when I recognized they no longer could or cared to try to fight for their independence. Those were the times when “embrace the suck” applied for me. My thoughts moved to new ways to engage with the individual in front of me that I often no longer recognized as Mom and Dad. Embraced.  

The finality of the funeral

funeral (2)

Arlington National Cemetery does a fantastic job of burying those individuals who have served our country. I appreciated the time between the passing of each parent and their burial. However, it was hard to help my Mom who had multi-infarct dementia remember that Dad had passed away.

Her calls asking me to give her a ride to visit Dad were heartbreaking. I broke down in tears on the first few. I eventually found a way to choke out a response that didn’t end in both of us crying on the telephone. I was thankful that for whatever reason, we had taken a picture of us (mom, me and my three siblings) around my deceased dad in his hospital bed. I printed that gruesome picture and posted it in my Mom’s room with a note about the event so she had a reminder that we were all there together. She was ready for the burial service once it arrived.

I was relieved to pass the burial milestone for both parents. I knew it meant I could finally finish the long grieving process that began when I recognized that their dementia’s were stealing them away from me bit-by-bit. The reality that we have to watch as well as care for our loved ones with dementia is a cruel fate for everyone. May we one day have a cure for the sneaky beast called dementia. Hoped. 

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. 

 

What to do if my siblings won’t help?

barney-stinson-self-five
Do what you can to support yourself.

A reader made a fair point when I posted I’m Overwhelmed and my Siblings Are Not Helping (Thank you Monique).

My siblings helped … eventually. I felt very alone the first few years when they didn’t see the issues I was seeing regularly because I was the only one that lived near my parents. I start from the premise that if you try, you may find that your siblings may join you. So first, I hope you will give them the chance to step up by over-communicating and for asking for specific help.

I had given up before my siblings stepped in and bonked me on the head to reengage.

Should your siblings fail you, do the best you can and move on. We can only control what we do, and the job you have is difficult enough. If you are in this place, my suggestions are to:

  1. Find a local caregiver support group. Go online and search and you will be amazed to find support groups for children, spouses, and even by diagnosis.
    • Try the Alzheimer’s Association, they usually offer all types of support groups and you search by zip code.
    • Contact your county Area Agency on Aging. They should know of some local resources.
    • Contact the local retirement communities, assisted living, and memory care communities — they usually host the support groups and know what is offered locally. Usually someone in the sales department can help you.
  2. See if there is a local village that can help your loved ones and provide recommendations for local vetted resources.
  3. Contact an Aging Life Care Manager.  Nurses and social workers by training, these individuals can help navigate health issues and find quick solutions to care needs. While they do have an hourly rate from $150 to $200, they might be able to find a solution to something that might take you days and weeks to navigate. You don’t know what you don’t know and it’s nice to have an expert on aging in your back pocket.
  4. Meet with a Daily Money Manager. They typically specialize, and you will want to find one that serves seniors. I have been doing this service for other families after my caregiving journey ended. I focus on the financial issues like paying bills, reviewing invoices, and maintaining the home and reporting back to adult children who aren’t near mom and dad.  I find that within the first month I find a variety of ways to eliminate robo-calls, save hundreds of dollars on unused services, and even access unused benefits for care services. I can also make a direct introduction to the right solution, be it a personal care assistant, elder-law attorney, or auction house.
  5. Tell your siblings what you are doing and offer a summary of accounts … and oh, yeah, compensate yourself for your time if you are able to do so. The reality is that caregivers on average give up over $324,0044 in lost wages and retirement compensation. My husband and I added in compensation for those individuals who are supporting us a DPOA and trustee — and are working toward ensuring that we can afford to compensate our loved one for stepping up because we know it not only can result in lost wages and opportunities, and is a job that would be compensated if we hired someone to do it for us. Thanks for your comment DW, I can’t believe I forgot to include this!

Whether you are an only child, or your siblings have let down mom and dad and aren’t stepping up to help, find ways to support yourself in helping your loved ones.

I regret not bringing in more help when Mom was alive. Instead of spending time following up with the community nurse, I could have been out enjoying a meal or and event with my Mom.  Hindsight is 20-20. Reflected.