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Named to Top Alzheimer’s Blogs of 2016

topblogsMy first blog post was on February 1, 2012. I had been a watchful daughter and knew something was wrong, but even after two family meetings (all of my siblings flew in and we shared our concerns together over dinner), my parents were not interested in making any changes to their lives. At one point I had given up, but my siblings convinced me to keep trying. I started to try different tactics, which in the beginning was just finding more ways to engage with my parents on a daily basis. My first blog post is about my dad who got lost driving to my home, a drive he had taken hundreds of times previously. Looking back, my blog really doesn’t start at the beginning, but it does start at the point when most families and friends realize they need to help.

Healthline, a consumer health information website with 65 million monthly visitors, named DealingwithDementia one of the best Alzheimer’s blogs for 2016. That is quite an honor. The editors shared the list of carefully selected blogs were chosen because they are actively working to educate, inspire, and empower their readers with frequent updates and high quality information.

After caring with two parents with different forms of dementia (vascular & Alzheimer’s), and facing very difficult end-of-life choices for them both, I will continue to blog. I hope to return to the community the guidance and support so many offered me. I hope that some of the many topics I discuss can help you and your loved ones on their journey. Gratified. 

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When Should I Share Digital Assets?

digitalkeyWhen I hear people raise concern over sharing their passcodes with a spouse or loved one, I immediately feel a pang in my gut. I don’t understand and too often loved ones have to deal with the consequences.

There was a period early on as I was stepping in to help, when financial institutions refused to accept the Durable Power of Attorney (DPOA). USAA and Fidelity were two of the first refusals I faced. We didn’t have an ongoing relationship with the attorney who drafted the DPOA and I didn’t think we could update it because my parent’s had both been diagnosed with different types of dementia. Both firms said they wouldn’t accept a DPOA that was more than two (Fidelity) or five (USAA) years old. Ummmm. What part of “durable” did they not understand?

Later, when we looped a geriatrician in to help with mom and dad’s care, he documented that both of my parents had decisional capacity to update their DPOA. We did update it, but I still ran into financial institutions (Wells Fargo and Commonwealth One) that refused to accept them. We could have had our estate attorney initiate a law suit — there is a statue in Virginia that was created to help — but in the midst of caregiving — who wants to start a law suit?  I just wanted things to work as planned.

My dad willingly worked with me to set up online access which allowed me to act on his behalf digitally. It was his intent for me to help and this was an easy way for us to solve the roadblock the financial institutions were creating. It is one of the reasons I write down and show my family how to access all of my online accounts. I want to make sure they could easily step in should I be unavailable.

I must be boring, I am not worried about my husband reading my email. I set up my son as my legacy contact with Facebook, and have used the Google+ Inactive Account Manager options.

What I do know is that the online tools helped me immensely when I was helping my parents. I also have enough friends who unexpectedly lost a loved one and didn’t know how to access the online bill pay, or login to the gmail account where all the digital statements and bills were being delivered. I don’t want to ever do this to my family.

For a quick toolkit containing worksheets to capture your usernames, passcodes, and security questions, click here to download this free chapter from the best-selling MemoryBanc: Your Workbook for Organizing Life.

For specific details and a good how-to guide on the policies and recommendations visit this story on CNET. Followed. 

 

Related posts:

Will Digital Data Ever be Secure?

The Digital Keys to your Estate

Don’t Forget to Document your Passcodes (or have your kids document theirs)

Taming the Internet

 

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When Someone With Dementia Looses a Spouse

momanddadWhen dad died, my mom who was in a moderate stage of multi-infarct dementia, had a hard transition to a new world without her constant wing-man. There were really six difficult weeks and then he was gone. Cancer took his life, and not Alzheimer’s.

Managing through this time was difficult.

  • My mom would call to ask me when dad would come back from the hospital.
  • I would find my mom wandering the community looking for dad when I visited.
  • Mom would call me frightened and ask me to come over … at 11:00 PM.

On top of my own grief, I was not really sure how to help mom. This change, however, allowed me to reassess what might be best for mom now that she was alone.

Grimly, one of the smartest things we did right after dad passed away and we were all bedside was to ask the nurse to take a picture of the family together … one last time. It allowed us to provide mom with a reminder that we were all with dad in the end. She taped the picture on her dresser mirror and it helped reassure her that she had been there with dad through his final days.

After dad’s death, my mom started to become very combative. She was arguing with every one and even getting physical. The staff told me that we would need to bring in additional support to help mom or she would have to consider a new community. Assisted Living wasn’t really the right place for mom, but in her Continuing Care Retirement Community, she wasn’t really a fit for the memory care unit yet–she was still way too active.

We hired the personal care assistant to help mom. While it seemed like mom was still refusing to accept extra help, what I learned was how important it was for mom to feel meaning and purpose and guide her own day. She needed help finding the offered activities as well as someone who could answer her questions about where dad was. She didn’t need help doing things, she just needed a gentle guide who would be there to help redirect her toward positive activities and to reassure her when she was feeling anxious. It took almost two months to find the right person and integrate them into mom’s life.

In the beginning, there were days when she didn’t understand who these people were who were showing up in her apartment. One evening a family friend called to tell me that my mom was upset that a strange woman was following her around. No one really understood the issues and choices we were faced with.

I realized I needed to help with the transition. When a new caregiver was assigned, I would meet them with mom and get to know them. I found that re-framing them as a friend who would stop by when they were in the area was acceptable to my mom*. We eventually found a woman with a calm demeanor and permanent smile who earned my mother’s trust. However, it was clear mom needed a different community. Helping mom live in her Assisted Living community was becoming a full-time job for me.

Be kind to yourself. Allow the time to move through the grief. It could be that new options for the care of one might serve your loved ones needs better in the long-run. Reflected. 

*As I have shared over the years with this blog, I quickly learned that the truth in every instance wasn’t always the best way to help my parents. I would always have a discussion with them about what was happening once and address questions, absorb their anger, and then move on. Telling my mom daily that the community required that she have a personal care assistant failed to help my mom transition to the new level of care she needed. 

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80 Percent Want It. 10 Percent of Us Get It.

endoflifecounselingAccording to The Washington Post, 8 in 10 people of all ages think it is important to talk to their doctor about their end-of-life wishes, but fewer than 1 in 10 report having had these discussions. After having to sit bedside for two parents in the past three years during their end-of-life, this makes me both angry and sad.

I was blessed that I knew my parents as an adult and we often discussed all kinds of things, including views on incapacity and death. Both were in hospice care, and we had time to say our good-byes.

However, there are many aspects of this issue that only a loved one may understand. I recommend you take some time to read the article When a doctor and a patient disagree about care at the end of life (The Washington Post, April 19, 2016). The article lured me in because my mother’s doctor said we had to lift the Do Not Resuscitate (DNR) order before she would consider mending my mother’s broken hip. I was speechless and overloaded by the idea that to abate my mother’s pain, she might return with broken ribs and move into a deeper realm of dementia after surgery. What kind of choice is that?

I called in some help from an Aging Life Care Professional and was advised to request a Geriatric consult. The doctor spent time with me to understand my mom’s mental status and health care wishes. In the end, her health was deteriorating and she would never qualify for surgery.

End of life choices aren’t for sissies. The earlier you start talking about the real choices your friends, colleagues, and loved ones are having to make, the easier it will be for you to be clear about your choices with those that will step in to speak for you should you need it. Recommended.

A good option to help start thinking about this topic and choices that might have to be made is The Conversation Project. Get your free kit here. It’s much easier to do this when you are healthy and no medical concerns are looming. 

 

 

 

 

 

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When Parents Refuse Help

noFour years ago, I wrote about how common it is for parents to refuse help from their children.

We all noticed that mom and dad were failing and very concerned for their safety as well as for the safety of others. Twice, all of my siblings flew in and we had a meal and shared our concerns with our parents. They deflected, delayed, and ignored our concerns.

Just last year, I learned that there is a medical term (Anosognosia) that describes the inability for someone with a cognitive issue to recognize they need help. Looking back, there are several things I would have done differently, but it took time to understand and adapt. Ultimately, I learned that I had to change because my parents could not.

Know that the first thing to recognize, especially for a mature individual, is that meaning and purpose is vital to their feelings of self-worth. While it might be easier to do something for them, can you do it with them?

Ultimately, I spent the first year plus being watchful and helping out when I could. I had to wait until their was a critical incident to be able to cultivate the change in my relationship with my parents so I could help. There was a broken hip, a stroke, and then the threat of being kicked out of their retirement community.

As a sandwich generation caregiver, I was constantly trying to plug the leaky holes in my parent’s life boat while raising two kids at home. I hope you will find this blog and the services of MemoryBanc can help make this journey easier for you.

If you have a question or hit a roadblock and want a suggestion, I’m happy to help make your journey easier. Use this link to see my schedule and set up a free 30-minute phone conversation. Offered. 

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The Caregiver Hangover: Stress

stressfreezoneFor almost a week, I’ve been managing my “stress-belly.”  It’s the term I have used for decades to describe the stomach discomfort I get that never coincides with poor food choices, but does seem linked to intense periods in my life.

My mom passed away over 4 months ago, and her burial was last month. I have been able to be more focused on my business, and am now working through my own medical and personal chores.

When I share with my friends my tummy issues wondering if I could suddenly have a gluten, lactose, or other intolerance, they remind me that sometimes stress shows up when you least expect it.

WHAT?  I don’t stress! It’s why I could say for years that the 4-hour tummy ache was my way of working out my worries. As things started to get complicated in my life most notably when my parents started to exhibit concerning behaviors, I hired a life coach. She helped me recognize that worrying about my parent’s, my kid’s, my job, didn’t change anything. I learned to focus on how I could improve things that were in my control.

While I’m sad that my mom is no longer here, I am still working out life after being a caregiver for so many years. The last think I would expect is for me to be stressed about it.

Within a day of my girlfriends reminding me that stress can happen after you face a crisis, my symptoms disappear. Cured.

 

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Even Doctor’s Struggle to Help Their Aging Parents

heartOnce you find yourself on the caregiving journey, you will be introduced to a network of individuals who spend hours helping others because they know how difficult this journey is to walk alone. They see the holes in the safety nets being put around our loved ones and stay involved to make things better for the others.

One women I met when she was caring for her mom is Ellen. She was near the end of her caregiving journey, and we were just getting started. She shared this story with me which not only brought tears to my eyes, but filled me with relief to know that even a doctor recognizes the huge need for a bedside advocate, as well as the confusing nature of the medical system and how even small details can make a huge difference when it comes to care.

In the final weeks of my mom’s life, I was in the hospital after she broke her hip. I was lucky to have a colleague that is an Aging Life Care Professional and a nurse who was able to help me navigate mom’s hospital stay and guide me on how to ask for and get the right resources.

For some insight that may help you in the future, check our Dr. Moss’s story: 6 Medical Breakdowns in My Mother’s Care. And 1 Close Call  Experienced. 

 

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