Tag: caregiving

Dreaming of Mom

momandkayI was so happy when I woke up from a dream where mom didn’t have dementia. They started after mom died, and I hadn’t realized that for the last few years of mom’s life, she always had dementia in my dreams.

For the first time since mom passed away, I had a dream about her with dementia. Oh, it was awful and when it flooded back into my brain in the shower, I spent a few minutes crying it out. It’s been ten months since she passed. As sad as it was to absorb her death, I was also thankful.

Yes. I tell you that with some guilt. However, I know that my mom had hoped she wouldn’t have to live with dementia as she watched happen to her own mom. The odd thing was as my mom moved deeper and deeper into dementia, how hard she fought to live after each set-back. She never really bounced back and with each issue became more frail and in need of more care.

I’m perplexed by how we will get better at this as a society. The right to life movement doesn’t apply to people with dementia. It’s important to have those individuals who would step in to help you understand your wishes and beliefs completely because they will have to make choices you can never imagine nor can prior guidance cover. Statistically, 9 out of 10 of us will need someone to make choices about our last days on this earth.

I had choices to make and am thankful my siblings agreed with the final choices we needed to make on mom’s behalf. We knew she didn’t want to extend the qualify of life she was living so worked with the medical team to offer her a comfortable ending. I still carry some baggage and know much of it is still part of my grief.

I still miss her and I know that while the pain may subside, the loss will never truly heal. Changed. 

 

 

 

 

 

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. 

How the Game of Thrones Soothed my Caregiving Guilt

downloadMy son got me hooked on “Game of Thrones” a few seasons ago. When he left for college, I realized I would no longer have a viewing buddy. My daughter quickly volunteered which meant there would be hours of TV getting her up to speed on the show.

During the 4th season, there are a few scenes in which people were dying and out of mercy, someone put a knife through their heart, or slit their throat. My daughter wondered why they would do this, it struck like violence, but in reality they were exhibiting mercy. It was the only way to help them avoid lingering in pain. As my daughter expresses dismay, we start to talk about it and I immediately recognize the complexity of mercy.

For anyone who has managed the hospice journey for a loved one, you understand the conviction it takes to be bedside and demand more comfort medicine.

You watch as your loved one’s body fights, even against what you know to be their end-of-life wishes.

I still feel conflicted about the last week of my mom’s life. She broke her hip and surgery was not an option; she had a stroke and no longer recognized me; she was unable to enjoy chocolate and would pack it in her cheeks; she was frightened and uncomfortable. We did what we could to bring peace. Now it’s time for me to find my own. Battled. 

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. 

Got a Question? Let’s Ask the Hundreds of Readers.

pumpkinsThis year, I realized how thankful I am for the thousands of individuals that have been reading this blog. It has become my own digital caregiving support group. I would like to try to share the power of the support network with all of the readers.  If you have a question, please send it to me at Kay @ MemoryBanc . com and I will post it to the blog for other readers to weigh in.

Since it’s Thanksgiving, and we are moving into the time of year where we spend a lot more time with family. You may be noticing new issues and want a place to turn to ask a question or three.

The feedback and suggestions I get through this blog and the other social media postings are invaluable to me. Keep them coming … and I hope you will consider using what you’ve learned to help the dozens of new individuals who are just starting on this journey.

I will post questions anonymously, and hope you all will take the time to share your thoughts, give some words of encouragement, and even consider asking a question. Thankful. 

Caregiver Alert: Are you experiencing “Compassion Fatigue?”

splatterDid you know that the feeling of anger, poor self-care, substance abuse, and hopelessness could be caused by “Compassion Fatigue?”

Today, I heard Stephanie Chong, LCSW-C discuss this term. I immediately felt a bit of relief knowing that it’s quite common within the caregiving industry.

Compassion fatigue, also known as secondary traumatic stress (STS), is a condition characterized by a gradual lessening of compassion over time. That is a very basic definition and Stephanie went on to discuss what this fatigue can lead to which includes symptoms of isolation, preoccupation, apathy, substance abuse, poor self-care, hopelessness, physical and even mental exhaustion. Now that I’m in about my 5th year of being the primary adult caregiver to two, then one parent, I’m concerned I am exhibiting some of the symptoms.

While I don’t feel less compassion to my mom or those who care for her, I’m feeling more anger around the need to constantly provide those in her care circle with insight into how my mom wanted to live out her final years. Because the job for caring for others can cause both compassion fatigue and burnout, there is a steady stream of new faces over the course of a year that help care for mom.

My last post “When More Translates to More Options for Failure” sure sounded a bit hopeless. Many of you have helped turn this into a digital caregiver support group for me. Thank you readers and comment-ers alike! Keep it coming.

What has been weighing on me is the constant need to advocate for my mom. I feel like I’m constantly telling a new member of her care team that mom wants to be happy and comfortable, but doesn’t want measures taken to extend her life. It gets uncomfortable when I need to follow-up with specific things to not do for mom, but also make sure they know I appreciate their help.

My mom was quite specific about not wanting to be spoon fed. Telling someone the thing they are doing as an act of care, is not what my mom wishes is painful to both of us in the conversation. While I don’t want to have the conversation one more time, I know I will need to because it is what my mom wanted. I need to be her advocate.

But it’s painful and I’m tired of having the conversation. The last time it happened I didn’t say anything. I started to doubt myself and wondered if I need to let them feed her because she hungry. However, she is totally capable of feeding herself.

I’ve used quite a few of the healthy coping mechanisms. But now that I have an awareness of this I also now have some other tools to help me the next time I need to have the strength to ensure mom’s wishes are being fulfilled. Soothed.

When Change Becomes a Downer

leafchangeAs an Army brat, I learned to embrace change. While I hated leaving good friends, I could quickly jump in and find new friends in our new location. It has never really been a scary concept for me and when it doesn’t happen, I quickly find I grow restless. I love to learn new things and challenge myself, and change helps foster that environment for me. However, caregiving brings a host of change for everyone. Sadly, it’s now mostly un-positive changes.

For the first time I’m recognizing how much the changes are depressing and discouraging me. My mom is now in a wheelchair full-time and too weak and unsteady to ever get back on her feet.  While she was in hospice and “graduated” out, it just seemed to bring on the need to change equipment, medications, doctors, and her schedule. While my mom is not rapidly declining, she is withdrawing and less-interested in doing the community activities as well as the little arts-and-craft activities we would do together.

She’s moving in and out of varied issues from temporary blindness to mid-dinner regurgitation. We never seem to find a root cause. When she woke up one morning with a very swollen and bruised hand, we just focused on treating for comfort since mom could never really report what occurred and it did not seem to be broken.

Change used to come with the potential for something better. Unfortunately, I recognize that almost ever change I’m facing comes with something less-better than it was before. I recognize what I can’t change, I’ve taken a huge leap with MemoryBanc to change the things I can and help other families on this journey, but I admit that some days, managing as a caregiver can be  incredibly discouraging. Confessed.

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. 

It’s YOUR turn to visit!

fingerpointAs the primary family caregiver, I will fess up to thinking and possibly even saying this to my siblings. I know when they visit, I have usually taken the opportunity to escape from the day-to-day and ongoing management of mom. It’s freeing to know that someone else is in town to run down an issue with the nurse or could drive over if something needed to be addressed immediately. I couldn’t even begin to count the amount of times I have visited mom on my own. When my siblings visit, I have used it as an opportunity to take a mini-break from caregiving.

However, what I learned on my sisters visit, was that going with my sibling was a way to reconnect with mom and my sibling. Not only did we have a great visit with mom, we had a great visit with each other.

Thank you to Belledelettres who commented that instead of  “it’s your turn to visit” we should think instead “let’s go and visit together”. Just maybe, they will visit more often. Wondered.