Category: My Dementia Caregiver Story

Helping Care for Loved Ones of All Ages

marymelissashow-297x300Recently I was interviewed on the Mary and Melissa Show which is led by two mothers who share the hurdles of raising kids with disabilities. While I walked into this business out of the need to help manage and support aging parents, I have learned of the ongoing needs to manage and organize a host of information for families who have children with disabilities.

Most people find the U.S. Department of Health and Human Services figure that reports at least 70% of Americans turning 65 will need three years of care frightening. As a country, we will struggle to care for loved ones in many ways. I have focused my experience on helping families avoid having to deal with the simple things that a little organization can solve. To learn more about how you can make sure you and your loved ones are ready, I hope you will listen to this show. Encouraged. 

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Can the Law Keep Up With Our Modern LifeStyle?

After having to step in and use a Durable Power of Attorney (DPOA) to assist my parents, I quickly found so many gaps in its functionality, I devised many work arounds with my Dad so I could help them.

Not only were we surprised to find that a number of financial institutions declined to accept the DPOA, but there are many facets of our digital lives that it doesn’t cover.

moderntechoptionsFor those of us who use online services, email accounts and enjoy the online bill-pay services provided by our banks, what we don’t know can hurt us. If you haven’t stopped to read the “terms and conditions” you accepted, they typically state you can’t share the account and the provider basically dictates the rules. If you are incapacitated, the only way a loved one can get access is if you share your username and passcode.

The Uniform Law Commission helps standardize state laws and recently endorsed a plan that would give loved ones access to — but not control of — the deceased’s digital accounts, unless specified otherwise in a will. Given that at the age of 65, 7 out of 10 American’s will need 3 or more years of long-term care, we must recognize that most people will need someone to have access to these accounts while we are alive.

If you don’t have a list that documents this information for your own benefit and that can provide loved ones with needed information,click here to download a free chapter called “Taming the Internet” from the Amazon best-seller MemoryBanc: Your Workbook for Organizing Life. This free download includes worksheets and details to help you and provide loved ones with the information they may need to help you. Offered.

When You Start to Feel the Losses

dawnIn the past few weeks, I have had a host of good news personally and professionally. My daughter applied and got into the school of her choice starting in 7th grade. My son just found out he got into his first choice for college and is going to be running for a D1 track team. My book hit the best-seller list before we have even started to promote it, and I received an award from the McLean Community Center for Volunteer of the Year.

My sleepless nights began after all this stuff happened. I have always been a good sleeper, and early on found that the more stress I felt, the more my body needed sleep. My mom’s fall has brought on some new complications, but it’s nothing I haven’t had to manage through before.

When my husband comes home he asks what I was doing up at 5:30 a.m. when he left for the gym. “I don’t know.” I know something is bothering me but I haven’t been able to figure it out.

As I’m driving to a meeting it hits me. I can’t share any of the happy news with my parents. My parents were such a part of my children’s lives growing up since they came over weekly for dinner. They knew them well and we could celebrate all the wins — big and small. I’ve told mom about these life events when I visit and she smiles, but it’s not the type of response she would have given had I shared this news with her years ago. I also feel the sting of my dad’s death. He would have been so proud to know that my son went to Nationals for track as well as will be running in college, like he did.

My Pastor recently talked about how children grieve differently. One of the things she mentioned was that often the kids focus on “She won’t be here for graduation” or “He won’t be here to see me walk down the aisle.” It never hit me until today that even adult children feel this way about our losses.

My only joy comes in knowing that at least my dad is smiling down on our good fortune. Sadly, it will be sooner than I probably am ready to have my mom in that same place. Resigned.

Purpose is a Robust Predictor of Health and Wellness

A growing trend amongst us boomers is that we have been steering clear from the word “retirement.” Personally, watching the decline in my parent’s when they “retired” is why I’ve been planning on working, in some form, as long as I’m able to contribute.

I recently stumbled on an article from The New York Times called “Living with Purpose” that reports:

So not only is my wish to have meaning and purpose in my life and contribute back to my community, but that need is also a factor to help keep me healthy.

While my journey as a caregiver has been long and impacted my life, it’s also fueled in me what I believe to be my purpose in life. Driven. 

If I’m not me, I don’t want to be.

imnotmetshirtDementia and end of life wishes don’t mesh. In a story I previously shared of Jerome Medalie that appeared in The New York Times last month, he was quoted as saying “If I’m not me, I don’t want to be.” His words linger in my brain as I follow-up with my mom’s caregivers to share that we should only focus on activities that give my mom pleasure. She’s never been a great eater and there is renewed concern over her eating habits.

My mom was very clear about her wishes. It was a gift that she shared them with me so I have no doubt about what she wants. However, I am struggling with how to fulfill her wishes. While I do not want to belittle this issue, I do feel like I had more compassionate options for my cat than I do for my mom. The story about the woman with cancer in Oregon who chose to end her life on her terms has helped elevate the issue into the national news. However, individuals with dementia don’t have the rights to choose to end their lives in those states that offer it. You can dictate advance directives, but dementia isn’t considered a “terminal illness” so it doesn’t fit into the legislative efforts to provide options being done by Compassion & Choices.

I wonder how I can help change this. I think the first step is to build awareness that we don’t have it right. I’ve navigated so many caregiving issues, but watching my mom progress into this disease without a way to really fulfill her wishes confounds and depresses me. I refuse to believe I can’t make a difference. Maybe not for my mom, but for those that follow.

My mom had completed medical directives and my husband and I were very specific when we completed our estate plans. If you don’t, Compassion & Choices does offer a Dementia Provision but as the article in The New York Times points out, “older adults themselves have begun a quiet debate about whether people who develop dementia can use Voluntary Stopping of Eating and Drinking (VSED) to end their lives by including such instructions in an advance directive.”

The only thing I have come up with was to launch a site that let’s people order shirts, hats, bumper stickers to bring awareness to the issue – cause I know how to do that. It could be a non-profit in which all the proceeds would be donated to help bring more awareness to the issue. If you have ideas on something positive we could do to offer more finite choices for those with dementia. I hope you will share them with me. Determined. 

 

If you are active on social media, do you know what happens when you die?

facebookThe owner(s) of the online site(s) you accepted the “terms and conditions” to before getting access dictate your digital rights on their service. Our world moved faster than the laws and after years of frustration, many of the online giants are starting to do more to address the issue of digital asset rights for their users. Google created an “Inactive Account Manager” but it is only a very broad safety net. The shortest term for inactivity is 3 months.

As a caregiver, we know how many issues surface for those who are unable to manage their own lives. Imagine if the person you were caring for was an active blogger or a great photographer and sold rights to their images online. Would you have what you need to access their accounts? For most of us, we might just need to get into email to be able to respond to friends of the person you are caring for. The power of attorney doesn’t cover this realm, yet.

Given that more people face a crisis or permanent disability before they die, the only way to ensure your loved ones have access to help you is to hand over a list of your usernames and passcodes. For a free tool to better understand and document you information, you can download a copy of “Taming the Internet: Keeping Track of Online Passcodes.” 

According to Slate, Facebook is rolling out an option that lets users choose to have their account wiped out upon death. The other option is to designate a hand-selected “legacy contact.”

I’m glad Facebook has done something, however, since 7 out of 10 Americans that turn 65 will need 3 years of care before they die, we must recognize that someone needs to be able to assist us long before we leave this planet and this isn’t just an issue for older americans. At the age of 40 nearly half of Americans will face a disability lasting 90-days; are you prepared to let a loved one step in and help you when you need it?

I encourage you to set up a system to be able to share the digital keys to your estate, should someone need to act on your behalf, if even only temporarily. As a reader, you know there are so many things you don’t have access or information about, even for those of us with durable powers of attorney. I hope you will take me up on the offer to download a free copy to at least get your digital house in order. Offered.

 

What the death of Robin Williams can teach us

robinwilliams
photo credit: nbc.com

By all accounts, Robin Williams had his estate plan zipped-up. He had a will and trust and even named professional trustees, so why is the family at odds over things after his death?

Grief impacts everyone very differently. As a suicide, it’s not just sudden but the nature of the death can complicate the grieving process. As caregivers, we know that many of these family issues surface well before a death.

From the latest reports, there is disagreement about how items are defined. A colleague of mine who is a professional appraiser has shared how contentious items with personal meaning but little value can wreak on a family. She commented that it’s interesting that so many parents who raised kids that argued over the last cookie expect their adult children to behave any better when it comes to settling their estate.

It seems Robin Williams put immense thought into his plan, but it sounds like there is some ambiguity and now both his wife and children who are still grieving are arguing over his things.

What Robin Williams Can Teach Us: It’s not enough to create the perfect estate plan. You have to tell those people who are impacted about your plan. Make it a part of normal conversations and allow your loved ones to ask questions and understand your wishes. You might not be around to appreciate it, but they will. And for those of caring for loved ones with dementia, we know that someone may have to make many decisions for us and our assets well before a death.

Robin  was known for his improvisational skills. As caregivers, we are required to improvise–and approaching each interaction with humor is a handy tool on this journey. Reminded. 

The decision to move mom

WreathatGrave2014On Monday, we drove mom to her new community. I had help moving her things and before she arrived, her room was filled with her favorite paintings and family photographs. The staff at the new community immediately welcomed her and got her involved in activities.

We didn’t make this decision lightly.

My parents and my grandparents both lived in the community mom just moved from. They have lifelong friends who live there. However, my mom doesn’t remember or recognize them anymore. I know many people in the community and the change is a little scary for me too.

When my dad died, I received books on managing grief from some volunteers. In December, a group of volunteers went to Arlington National Cemetary and laid a wreath at my dad’s headstone and sent pictures and a note to my mom. My godfather would often deliver my mom’s mail and many of the residents knew her from the years of bridge groups that she ran. Several adult children of other residents would stop by and visit my mom. I will miss these things.

We were asked to let the community help mom make the transition and told that we shouldn’t plan on visiting the first week. Two of the women that supported my mom as personal daily assistants (pda’s) in her old community are on site and helping her make the transition. I feel like I did when my children went to camp. I hope my mom’s doing well and adjusting and that she is finding enjoyment in the new community. Wished. 

 

It’s not so easy to honor your loved ones wishes when they have dementia

NYtimeslogoToday, an article appeared in The New York Times echoing some of my laments in honoring my mother’s wishes titled Complexities of Choosing and End Game for Dementia. My husband sent it to me after listening to me last night talk about some of the choices I have to restate in moving my mom to a new community.

The subject of the article, Jerome Medalie, states “If I’m not me, I don’t want to be.” My mom has been saying this to me since I was in 7th grade — in different terms, but her meaning was the same. After her mom came to live with us, and wasn’t able to do more than stare out the window, I began to hear my mom tell me what I was supposed to do if she wasn’t doing well. She either told me to push over a big chest of drawers on her or hold a pillow over her head. Two very horrible choices that I would never perform. She would say them sarcastically, but it continued even into my 40s. She said it enough, that even my husband knows this about my mom. Because my mom shared these thoughts with me for so long and was so consistent, I understood her beliefs about how she wanted to live and age.

Here I sit and she doesn’t know what to do from moment to moment. For the past month, she has recognized me, but we have gone through periods where she didn’t know my name and was shocked to learn I was her daughter.

Now that she is in palliative care that was recommended by three different attending physicians, I struggle sometimes with questions like:

  • Do we give mom a flu shot?
  • If she skips a meal can we offer her Ensure or another form of nutritional shake?
  • Do we send her to the dentist?

My mom was very clear and has even at times shared her frustration at living with her “bad brain.” She’s had to learn to accept help to dress, toilet, and just move across the room now that she is in a wheelchair. She will still ask for my Dad and is disappointed when he doesn’t appear.

My measuring stick is if it “gives her pleasure.” However, I pause at the dentist since my dad ended up dying of a tumor on the back of his tongue that went undetected. But exactly where and when does this begin and end? Conflicted.

How will I not become my mom?

wheelchairI vividly remember my husband once accusing me of being just like my Mom when we were in a disagreement. He knew quickly afterward that it was one of the meanest things he could say to me and has never repeated it in a derogatory manner. I think every daughter has some of this baggage. My Mom did a million wonderful things, but for some deep psychological reason, when used as a slight, there are some things about our Mom that we vowed we wouldn’t become I suppose.

I know my Mom never wanted to be in this place, in a wheelchair, with little memory, and an inability to do most things for herself. As a caregiver, I wonder how to avoid the fate of my parents.

I was encouraged by Dr. Oz when I appeared on the show, and have read many articles that equate dementia more to lifestyle than to heredity. One of the coolest things about the show was meeting Dr. Cynthia Greene who was the expert during my segment. She founded Total Brain Health that offers brain fitness toolkits for senior care, healthcare and fitness settings. She also is the author of Your Best Brain Ever that was named a “2013 Top Guide to Life After 50” by The Wall Street Journal. She, along with Dr. Oz encourage fish oil supplements, which I was doing before, but has now become a daily habit.

The major things I have done to help my loved ones if any illness or disability strikes is to complete my estate plans, written down my answers to The Conversation Project questionnaire, and continue to use MemoryBanc to organize our documents, accounts, and assets. Together, these will give my loved ones a treasure map on how to manage and follow my wishes should they need to step in and help me.

I’m excited to share that a new version MemoryBanc:Your Wookbook for Organizing Life is hitting bookstores this March for just $17.95. To pre-order at a discount, check out any of these popular retailers:

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Excited. 

Dementia and Holiday Reminders

nutcrackersTo get ready to trim our tree, we unpacked the ornaments and table decorations and I was unexpectedly reminded of the loss of my father. The grief is much softer now, but arrives at the most unexpected moments.  Two years ago at Christmas, my Dad added funny notes to my nutcracker candles. I cried when I opened them last Christmas because I had already forgotten about his notes. Last year was the first Christmas without him. I’m wondering as I pull them out this year if I can shellac the notes in place so they will now be a permanent fixture to our holiday decorations.

Holidays are always a challenge and my memories are filled with sad and funny stories–some I shared–and others I didn’t dare mention. We have had some doozies. At first, I’m surprised that I can’t find a post about the year I had to go find my parents who got lost driving to my house–something they had done hundreds of times. I realize that this happened a few months before I started blogging about my journey (it was November 2011). When they didn’t arrive for Thanksgiving dinner, we were worried. My husband worked to save the meal from ruin while I just worried. An hour after they were to arrive I get a call from someone telling me my parents are on their way. They were lost in his neighborhood and he redirected them toward our house.

An hour later, my parents call me from a pay phone and give me their address so I can come get them. They were 20 miles away and scared. I have them follow me home and no one mentions them being late. I don’t bother to ask why they didn’t have the cell-phone with them, my Dad just never got the habit of carrying a phone around with him. I knew it was another alarming signal that they should be changing their lifestyle that they would soon forget. This happened at least seven months before their licenses were revoked.  It’s scary to realize how many people, including themselves they jeopardized driving. There are many sudden decisions that need to be made behind the wheel.

Two years after this happened and my parents were required to move into Assisted Living and we were packing up my parent’s apartment, I found a bill for over $2,500 in repairs for my Mom’s car. I didn’t press my Mom when she told me she no longer wanted to drive a few years earlier. This bill made it clear that something pretty major had occurred and they got the car repaired without breathing a word of it to any of their children.

Dementia changes not just the person it afflicts, but all of the loved ones they are surrounded by. As hard as this journey has been, I’m thankful for all that my parent’s have given me, and all that this journey has taught me. The nutcrackers will forever remind me and be a treasured holiday decoration. Changed.