Category: Managing Parent with Dementia

Am I Done Grieving?

Kay w Chaplain
Thanks Max for the photo!

I still tear up when I think about my Dad. He died nearly two and a half years ago. As many of us who have a loved with dementia, we also recognize how much me miss them while they are still here. We buried mom a few weeks ago (Arlington National Cemetery takes around 3 months from death to burial) in what she wanted to be a life celebration. I think we did a pretty good job of following her wishes.

The weeks after her death turned me into a swirling dervish. I spent more than a week polishing nearly every piece of silver she had given me or that I purchased with her when I tagged along with her to an estate auction. I polished the corner display cases my parents gifted when they down-sized. I reorganized my work room.

About a month after my mom’s death, I had a dream of the mom that I spent the most time with. She was funny, tart, driven, and opinionated. I had a great adult relationship with her. When I woke up, I quickly recognized that I hadn’t had a dream about mom before the dementia for years. It was wonderful and sour simultaneously.

I’m moving through the stages. I’m starting to recognize how different this journey could have been for all of us had we known the ending. I spent nearly 5 years entrenched as a sandwich generation caregiver. It was so overwhelmed that I needed to roll out of my corporate job to stay sane. I found a healthy outlet in building MemoryBanc, but I also sacrificed 5 years of an executive income. According to AARP Public Policy Institute, the average female caregiver loses $324,044 in wages and benefits. My inheritance simply turned into a replacement for the compensation I would have made. I recognize how lucky I am that I even had that benefit–most caregivers don’t.

Had we known the timing, I probably would have hired more help for mom in her final year. I wish I could have just visited her as a daughter. We believed Mom’s money needed to last possibly ten more years. Most visits included follow-ups with the nursing staff on a nagging issue or concern, or a request to the community for a door-lock, painting classes, or just to get a sense of how they felt she was doing. We still have many voids in our system to care for loved ones. I hope to find a way to bring those services, and information about the options, to the families that need them. Focused. 

Understanding My Choices When Mom Ends Up in the Emergency Room

Caring ConsiderationsMy mom had fallen and as a precaution her memory care community suggests we send her to the Emergency Room because she is complaining of leg pain. When I arrive, I immediately understand that everything for mom has just changed. Her leg is propped up but she looks uncomfortable. Any attempt to move her leg results in “wait, wait, wait.”

When they take her for the X-ray, I use the time to unravel. I know that she has broken her hip and know that the next 24 hours is going to result in some difficult decisions. Mom is 84 years old, described by her doctor’s as “frail” and well into a moderate stage of multi-infarct dementia. When the doctor comes in to confirm a broken hip, she gives me two options: Surgery or No Surgery.

Because I already experienced the consequences of a broken hip with my father who was in excellent physical condition, but never really cognitively bounced back after anesthesia, I cringe at the idea of what would happen to my mom.

The doctor explains that we would be doing surgery for pain management, but the Do Not Resuscitate (DNR) order in place would have to be lifted if this option is pursued. Now it’s mine turn to say ”wait, wait, wait.”

I realize it’s time for me to call in an Aging Life Care™ Professional. I need help navigating the choices for my mom and making sure I follow her wishes for end of life care.

I called Caring Considerations and by morning Debbie Aggen, RN, CSA® meets me in the hospital room. I explain to her that for pain management they suggest surgery, but are telling me I have to lift the DNR in place for my mom. My mom was very clear that should she lose her cognitive abilities, I should put a pillow over her head. While that isn’t really an option, when the doctor and I discussed it two years ago, the doctor put into place the DNR. Should mom have a critical medical emergency, she did not want extra measures taken to sustain her life. I don’t understand why the doctor is insisting that if mom has an issue during surgery that they be allowed to resuscitate her. I can only imagine a weaker and battered mom coming out.

Debbie listens to me and reviews my moms charts. She recognizes what I could not, my mom was most likely not even going to be able to qualify for surgery. She gives me some language to use and suggests that I ask for a geriatric consult. When the geriatric doctor arrives, I get to have a real conversation about my choices and my moms wishes. Eventually mom is discharged into hospice after it is determined that she has too many other health issues to withstand surgery.

Debbie visits my mom when she returns to her memory care community, She counseled me as I watched my mother lie in pain in her bed and felt helpless to soothe her. Debbie helped me understand the choices, and use the right language to help convey to her hospice team my mother’s wishes and ensure she was comfortable during this last stretch of her life.

It wasn’t easy and I had a host of engaged siblings. However, none of us knew how to best navigate mom’s condition and having Debbie by my side and a phone call away was a lifeline for me as I struggled to help mom. I hope more families will begin to understand the value of professionals certified in aging life care / geriatric care management, which is a holistic, client-centered approach to caring for older adults or others facing ongoing health challenges.To learn more about Aging Life Care, you can visit the website for the association of dedicated to supporting these professionals. Benefited. 

Caregiving and Siblings: It’s Important to Make it Work

kaywithsibs
Photo credit: Guy Browning (thanks for letting me boss you around to get this photo)

Dementia has taken our parents from us incrementally and cruelly*. We faced many hard decisions through the journey.

The most notable legacy my parents left behind was adult children that could work together. We had to overcome a host of challenges as my parent’s health was declining. We are like many families, we’ve got baggage from childhood and we problem-solve differently. Our parent’s estate plans named my sister because she was eldest and a lawyer. But my sister lived on the other side of the county, so it wasn’t really the most practical solution. It was one of the first things we had to discuss and addressed. I am the only local adult child, so it only made sense for it to be me. As the youngest, it brought in some expected issues like why would anyone listen to the “baby” of the family–with my parents in the lead. It took time to develop this new relationship.

I’m crazy for process and clear-cut solutions. When we began to have disagreements, I proposed some working rules for working together and that we adopted. They were:

  1. Spouses are invited to participate, but only direct descendants vote.
  2. It’s okay to disagree, but not okay to be disagreeable.
  3. Majority rules on any vote unless it impacts any of us financially. If the outcome of the vote impacts us financially, the vote must be unanimous.

We were blessed to be raised by parents who taught us how to communicate, even when we disagreed. We weren’t always in agreement, and noticed different things at different times. But we needed to work together to help our parents, so we did.

I hear the same issues from many other adult children I have talked with over the years. Most often, I hear how the conflict tore the family apart. I’m thankful that it really brought us closer together. We used an online site for free teleconferencing called TalkShoe. Putting us all on the phone together had a positive impact. We could hear the tone of the voice and ask questions of each other. It also allowed us to listen how our siblings communicated with each other. We eliminated the “he said/she said” misunderstandings.

When my siblings realized how much time a week I was spending to help, they suggested I get compensated. It wasn’t a huge amount of money, but it was recognition that I was spending a good portion of every week visiting, advocating, and assessing mom’s needs. My husband and I actually built the idea of compensation into our trusts because we have experienced it first hand and understand the toll caregiving takes on not just the primary caregiver, but the caregiver’s family.

My siblings were engaged, supportive, and I know many other families blow up on this road. As hard as this journey has been, I recognize how many blessings it has also brought to me, my family, and my siblings. Humbled.

*I don’t know if someone else said this first. Over the last week I wrote it on a post-it note when contemplating our journey. Please let me know so I credit you for this statement which felt very apropos to this post. 

 

 

23% of Adults Between 45-64 are Caregivers?

CaregiverTableAccording to Pew Research Center, adults ages 45 to 64 are the most likely to be caregivers. In fact, about a quarter (23%) of adults ages 45 to 64 cares for an aging adult.

Then, for those over 65 – 17% – serve as caregivers for another aging American. Many in this group are caring for a spouse or partner (29%) or a friend or neighbor (33%).

When I see that 40.4 million American’s are caregivers for adults 65 and older, I wonder how we are going to manage as a society. What concerns me most is that most American’s do not have basic estate plans.

To be clear, I really don’t care about wills, I want you to understand that every adult over 18 should have a Durable Power of Attorney which is the legal document that names someone to act on your behalf financially; and a medical power of attorney that allows someone to be your medical advocate. These two documents will impact your life when you are LIVING.

We all need these, even in our 20s. By 65, seven out of ten American’s will require three or more years of long-term care. Someone in your life will need these legal powers to help you. Please contact a local estate attorney and get these done, they cost as little as a few hundred dollars. Please know that being married doesn’t mean you automatically have someone that can fill these roles for you. They may not be named on your account, they may not know where to find your account information, they may not know your wishes.

As the person who was the caregiver for my parents financial, medical, and personal needs and wishes, having the information to help them was so important I launched a business to help every American get their own information organized.

After caring for both parents through death, I recognize how much having this information organized made this difficult emotional task easier. I wasn’t worried about account details or where to find documents. I could focus on fulfilling my parent’s wishes for end-of-life. Nothing makes that easy, but at least it was all I really needed to address when that time came. Recommended. 

Making Lemonade out of Lemons

agewyzI was interviewed by Jana Panarites about my journey as a sandwich generation caregiver and shared my dream that MemoryBanc would help millions of families avoid the difficulties my family faced. My parents did everything the estate lawyer, financial planner, and insurance adviser suggested–why wasn’t that enough? Find out by listening to this broadcast.

“Author and innovator Kay Bransford left her corporate career because she couldn’t work full-time, be a mom AND an effective medical advocate for her parents, who both had dementia and were in denial about their condition. In this episode, Kay shares her tough yet at times comical caregiving journey with mom and dad, and how it affected her relationship with her siblings and her kids. Caring for her parents not only changed Kay’s perspective on life, it led to a new career: the organizational book she created to manage her parents’ lives—and her own sanity—became the basis for MemoryBanc, an award-winning system Kay created to organize and protect documents, accounts, and assets.

To learn more about MemoryBanc, winner of the AARP Foundation’s “Older-Adult Focused Innovation” prize, click here: www.memorybanc.com“

Navigating Care with Your Siblings

Family2004Every family has some conflict. When my parent’s health started to fail, it took time for my siblings to catch up to me. I was the local one who spent a lot of time with my parents as an adult. I noticed changing behaviors and memory issues. Every attempt to help my parents was poorly received, even when they called me to ask for it. By the time my siblings started to see the issues, I was resigned to silently watch and would respond when the hospital or the police called me. When my siblings started to see how poorly my parents were doing, they had to talk me back into trying.

Together, we set up interventions. All four adult children brought in lunch at my parent’s home and we shared our concerns together. Both times, our parents were polite but rebuffed the suggestion that they should consider any lifestyle changes. During this time, we set up monthly phone calls to touch base on issues. We used a free conference call site called TalkShoe.

When the retirement community threatened to terminate my parents continuing care contract, we moved to weekly calls as we prepared to navigate a very difficult period. We have had disagreements over everything from care choices, the disposal of assets, and even the menu at my dad’s burial. Early on, we set up rules of the road to help us. We agreed that:

  1. Spouses are invited to participate, but only direct descendants vote.
  2. It’s okay to disagree, but not okay to be disagreeable.
  3. Majority rules on any vote unless it impacts any of us financially. If the outcome of the vote impacts us financially, the vote must be unanimous.

With four of us, you would think we would have had issues with voting. If we found the topic got a little too heated, we would table an issue and plan on date and time to reconvene to discuss it.

I had already stepped in and had collected information (using the MemoryBanc Register) on most of their accounts after they signed two contracts for home repairs and one was predatory. I was on the bank account and was monitoring cash flow and bill payments in the background to ensure they were not victims of fraud. We had to prepare and sell their second home, down-size furniture, sell cars, distribute family heirlooms … and figure out how we would manage and share the load because it was too much for one person to bear.

We made up a list and assigned roles. Here is the guide we used to help:

Care Giving Role Duties Responsible
Physical Provide or support activities of daily living (dressing, feeding, bathing etc.) and ensure safety.
Medical Manage the medical needs, doctor visits and medications. Coordinate with various doctors and follow-up on issues and concerns. Healthcare directives, Medical Power of Attorney, Do Not Resuscitate (DNR)
Personal/Financial Manage bill payments and cash flow as well as knowledge of legal documents and locations. Will need Financial Power of Attorney, be on bank accounts.
Investment Understand and manage the investments and other financial assets.
Legal Manage legal review of documents and if different coordinate with Personal/Financial to ensure documents in place and timely.
Historian Collect, organize and archive photos, letters, family keepsakes.
Realtor Lead decisions on property and manage vendor selection and transactions.

We were able to work through a host of issues that could have shattered any family. Luckily, we were able to use this to build stronger bonds. We still schedule regular calls to review finances, mom’s care, and discuss any ongoing issues, but now we are all on the same page and able to focus on doing what is best for our mom.

This breakdown and how we navigated won’t work for every family, but I hope it will give you some idea’s on what might work for yours. Shared. 

Hindsight is a Wonderful Luxury

momsunglassesday2I’m reusing the words Remember Me shared with me because in the cycle of grief and guilt caregivers seem to float through endlessly, hindsight is truly a luxury. We often saw things that should have been a warning sign, but didn’t recognize the significance. We may have been sure something was wrong, but didn’t know how to proceed. We tried to help when we saw things failing, but my parents were not interested in the help and usually appalled at the suggestion it was needed.

I finally started to understand how much the independence meant to them when we had to come in to help because they were unable to manage any longer. Because of the dementia, I wonder if my parents just never recognized, understood, or believed that they were failing to manage in their day-to-day lives. Dementia is torturous in so many ways to both the individual and their loved ones.

I’m a huge advocate of goal-setting and one of the things Remember Me recently posted was a list of aspirations to develop a life alongside being a Care Partner.  As I struggle to direct the ever-changing team in place to help care for mom, I think coming up with a similar list will do me and mom a lot of good. Encouraged. 

The Lingering Nuisance of Tax Issues

taxesI have seen several reports that discuss that symptoms of dementia can be present up to ten years prior to any type of diagnosis. I know that it took our family several years to finally get my parent’s diagnosed officially. That was well after my siblings and I held two interventions to share our concerns around our parent’s living and driving arrangements.

We noticed behavioral changes, witnessed problems handling home maintenance, and a growing number of dings on their car bumpers. We were primarily concerned for their health and welfare.

Today I had to follow-up on an state tax notice about returns not being filed. The notice is for returns related to my mom’s antique repair business. It’s also covering the period of 2005. I know in the past my sister had to chase down tax issues for my parents.

Two weeks ago I placed the first call. After navigating the phone system, I finally reach a person who tells me they can’t help me because they need a copy of the Durable Power of Attorney giving me the ability to represent my mom. I faxed it in and followed up today to resolve the issue. After 40 minutes in a variety of queues and in speaking with two different divisions of the state tax department, I finally reach the person who can help me resolve the issue.

When she starts asking me for my mom’s address and phone number, I let her know my mom is in the care of a dementia community and is unable to speak on her own behalf. I also tell her I have only been doing mom’s taxes for 2 years and never gotten a notice until now.  I tell her that we no longer have copies of the 2005 taxes because we followed the guidance that says you keep them for 7 years. I just ask her what I need to do to resolve the issue.

The representative is very kind and asks a few follow-up questions. She tells me she is going to resolve this issue. Apparently, mom was sending in the money, but never sending in the Sales and Tax Use reports that were to be filed with her payments.

I wish there was something I could have done when I first noticed problems, but I’m not really sure it would have changed the outcome. I am just glad this was a relatively easy lingering tax issue that is now resolved. Completed. 

Dementia is a family affair

KayandCarlyMy daughter and I were recently interviewed for a show called We Choose Respect. We shared our story about how to watch, care, and manage through life when you have a loved one, in our case, my parents, with dementia. This is the second interview I have had in the past month in which sharing this journey with my kids seems out of the norm. I didn’t really recognize it, but I know I made this decision purposefully with my husband.

Many parents choose to shield their children from adult topics and issues. In this case, I just don’t know how I would have managed. We spent a lot of time with my parents and my kids witnessed some bizarre things. They also lived through mom running out of the house to help my parents late at night, supported me through visits when things were really wacky and my parents were fighting to maintain their lifestyle, and they have overheard discussions with my husband and siblings about what is going on with “nana” and “pop-pop.”

I believe that having my children understand this journey, helps them understand how to be a loving, respectful, adult child, even when the roles start to reverse. I sure hope my kids won’t have to help us. However, knowing that 7 out of 10 adults that turn 65 will need 3 or more years of long-term care means that the odds are not in our favor. As a country, and a culture, we really don’t know how to address the fact that most of our parents didn’t want to linger, but the reality is that we really don’t have any choice but to keep them safe and comfortable.

I’m humbled by my daughter’s ability to absorb and incorporate what we have all learned on the journey to deliver loving care with grace and humor. As she so eloquently stated, “If someone you love forgets you, well, you remember them, and you can love them as long as you cherish those memories” Cherished. 

To hear this interview, you can find it on itunes, or listen from your computer at http://www.wechooserespect.com/

The benefit of a memory care community

I am currently in Belize with my daughter and our church Youth Group. I can’t imagine trying to manage a week away if mom were living with my family. As a sandwich generation caregiver, I want to make sure I don’t short change my daughter and miss the opportunity to be a good mom to her. She is pictured below being silly and showing me how to have fun with he “panoramic” picture feature on my iPhone. We are spending the week painting the 4 room schoolhouse in the Cayo district of Belize as well as getting to know the many children that attend the school.  
Thankfully, my parents saved and told us they never wanted to live with us. It would have made things simpler had we had a conversation years ago with the amount of care they have needed and the complications that dementia brought as we worked to transition them into a safe environment.

Right now I’m happy that my mom is in a community and we have the extra care she needs in place so I can also have the time to focus on raising my kids. Pleased. 

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. 

If you are interested in scheduling me for a radio interview, use the form provided and my office will contact you:

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