Managing End-of-Life Wishes and Caregiver Suggestions

carveouttimeWe hired extra assistance (personal daily assistants or PDAs) for my Mom so she has someone with her and working toward her comfort daily from 8 a.m. to 8 p.m. even though she is in an Assisted Living community. She has also been moved into “hospice” care so there is a second doctor, social worker and nurse monitoring my Mom. I have found that having more people and organizations involved in her care has created more complexities to my family caregiver role. I spend a lot of time on the phone and meeting with her caregivers.

What’s become both a blessing and a challenge is that I’m getting advice and recommendations from a variety of caregivers. The three women who are with her the most continue to suggest we add vitamins to her diet. She eats very little and I understand their concern, but then feel guilty when I explain to them that my Mom doesn’t like vitamins and we feel like it would be the choice she would make if she could.

My Mom made it clear she would not want to extend a life of low-quality. I shared my angst over the idea of even having her drink Ensure. After speaking with the Social Worker from hospice and the head nurse in her Assisted Living community, I moved past my concern when I watched her enjoy the shakes and they helped sate her hunger. My bench-mark is to know that what we give her brings her pleasure. I know the vitamins would not bring her pleasure.

My siblings and I continue to struggle to know what things keep her comfortable and what things may just extend her life. It’s not such an easy black and white choice. I’m thankful that I have involved siblings that come to help, call to ask how they can help and bring varied perspectives to our journey to care for our Mom in this last phase of her life. I was lucky my parents told me how they wanted to live, as well as how they didn’t want to live. Because they started this conversation so early in their lives, it never felt uncomfortable.

This Thanksgiving, 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. I’ve included two great resources below, and hope you might start by sharing with friends and family your ideas about how you will spend your time in your 60s and 70s; where you plan to be living and how you will be spending your time.

I am lucky my parents shared their thoughts with me. It has made a difficult journey a little easier knowing that we did or are doing what we can to honor their individual wishes. Thankful. 


AARP Roadmap for the Rest of Your Life: Smart Choices About Money, Health, Work, Lifestyle … and Pursuing Your Dreams by Bart Astor
Life after 50 isn’t what it used to be. The rules have changed. No more guaranteed pensions, retiree health plans, or extensive leisure and travel. It’s time to forge new paths and create innovative models. That’s where the AARP Roadmap for the Rest of Your Life comes in. Bart Astor, author of more than a dozen books, offers a comprehensive guide for making lifestyle decisions, growing your nest egg, and realizing your goals. It’s a positive read I highly recommend.

The Conversation Starter Kit
If you want to be the expert on your wishes and those of your loved ones, not the doctors, nurses, or end-of-life experts, check out this free resource (donations accepted) that includes easy discussion starters for the coming holiday. This doesn’t have to be a gloomy conversation. I was lucky my parents shared their wishes with me.

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The 2014 Brain Health Gift Guide: MemoryBanc #1Gift

MemoryBanc RegisterI’m honored to be named the top gift this year on the 2014 Brain Health Gift Guide.

When I appeared on the Dr. Oz show, I got to meet  Dr. Cynthia Greene. Both Dr. Oz and Dr. Green encouraged me by explaining that dementia is more from lifestyle than it is from heredity. Having two parents with dementia (multi-infarct and Alzheimer’s) along with two grandmothers with dementia made me feel like I was doomed to repeat history.

Dr. Green 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.

Each year Total Brain Health creates a gift guide of items that foster brain health. The MemoryBanc Register is a life preparedness tool that is best done when you are in good health. It helps:

  • couples coordinate their financial and household details,
  • single adults provide a road map to those that would step in to help if they needed it and
  • parents record the location of key documents, accounts and assets along with their personal wishes.

As a gift, it not only is a simple solution to help someone get organized, but it also conveys to the individual that in the event they should ever need help, you’d be honored to help. Honored. 


* I continue to recommend you work with an estate lawyer to determine which legal tools you need. In my opinion, the most important document everyone over the age of 18 should have in place is a Durable Power of Attorney. 


AARP’s Caregiving Story Campaign: Kay from Virginia



Kay020AARP is running a campaign “I <3 Caregivers”. I shared my story and hope you will consider sharing yours.

I am your classic sandwich generation caregiver. A few years ago, my parents started to change, subtly at first. My Mom didn’t recognize an old family recipe I made (my cooking is not THAT bad) and my Dad’s humor dimmed. Over the course of the next few years, there was a stroke (Mom), broken hip (Dad) but they recovered and remained independent. We now recognize that both parents were walking into dementia together and we were very worried for their safety. Our parents were in a Continuing Care Retirement Community (CCRC), but they were unwilling to change their lives as their health changed.

Our parents drove even after their doctor submitted papers to revoke their driver’s license. My siblings came to town to help hide cars and manage through this change. Then my parents would jump into cabs and arrive at their destination with no money. One evening our parents broke into their own home–then called the police to say someone broke into their home. They fought hard to maintain their independence and didn’t want anything to change, but it needed to change.

Last year my father died of cancer that was undetected until he could no longer move his tongue. It was a hard choice to make–do we put a man with Alzheimer’s through chemo? Four weeks after his diagnosis he died in hospice care.

Having your Mom call and ask you why you never told her that her husband died is heartbreaking. The hardships she faced being alone and not remembering were difficult to navigate. She is in an Assisted Living community and we are facing a steep decline that landed her hospice care two weeks ago.

Thankfully, my parents were very open about discussing their wishes for end-of-life care. Knowing what they want and making those choices is still difficult.

The experience was so overwhelming, I ended up leaving my full-time job in an executive role at a Fortune 500 to launch a business (MemoryBanc) to help other caregivers organize all the papers and documents needed to support a loved one.

In 2013, MemoryBanc won the AARP Foundation Prize for “Older-Adult Focused Innovation.”  It turns out, everyone over the age of 40 should use the system to get their documents, accounts and assets organized.

I don’t wish this path on anyone, but the journey has made my life richer, my bonds with my siblings stronger, and my path and choices for the rest of my life clear. Accomplished.


Are Ensure Shakes and Hospice Compatible?

ensureMom has been moved into hospice care. We’ve not been told her death is near, but there is little hope her condition will improve. When it was suggested, The idea was to have a doctor who would focus on keeping her comfortable. She’s been more communicative than she was two weeks ago, but those moments are sporadic and unpredictable.

I realize what a gift my Mom gave us when she told my brother and I that if she were in a poor health situation, with little hope of improvement, we should “push grannies chest on her.” Since we don’t have a legal or moral option to help fulfill our Mom’s wishes, we are being very vigilant about how to best navigate this final phase of my Mom’s life.

I’m currently fixated on the figures released by Health & Human Services that share 7 out of 10 Americans over the age of 65 will need some form of long-term care services. Women on average need it longer (3.7 years) than men (2.2 years). Most of us hope we will die in our sleep or at least swiftly. That just isn’t the reality of our current world. A colleague that focuses on helping individuals put together their health care wishes M. Jane Markley reminded me of a tool that individuals can use to start thinking about and discussing what they might want to happen in their final years. It’s called the The Conversation Project. It was very easy for me to complete my copy. If you are caring for a loved one, how valuable would this have been to help guide you through the tough decisions you must face/faced?

I know that I have been aiding or managing matters for my parents for nearly 5 years. I was fortunate my parents talked about end-of-life issues before they were needed. It wasn’t dark or gloomy, it was just something that came up as dear family friends became ill or passed away. I was fortunate that I spent a lot of time with my parents as an adult so I knew them. Knowing what they believed didn’t make the decision on how we supported our Dad and managed his cancer any easier, but looking back, I’m confident we did the right thing for him.

Yesterday I was asked to pick up some Ensure for my Mom. I immediately confirmed that I would, but I started to feel a fracture in my belief that I was fulfilling Mom’s wishes. We have the DNR in place and is giving her nutritional supplements the beginning of the slippery slope?

When my brother was visiting he said he witnessed those caring for her working very hard to get her to eat. We spent an entire evening talking through this and felt that our Mom wouldn’t want to be coached so vigorously into eating. For several years she has bristled at any who commented on her food choices or lack of appetite. We want to follow her lead, but also recognize she has dementia and don’t intend to have her starve. It could just be that she’s having trouble swallowing the pureed food.

I reach out to both the Assisted Living Community and my hospice care case worker. “Help!”  The head care manager calls me to share that as long as my Mom’s eating half of her breakfast, which she’s doing, they don’t see the need to provide supplements unless she is saying she is hungry. The hospice care manager shares that many of the individuals in their care use these supplements. If drinking them provide enjoyment, don’t hesitate to offer it. The best reason she gave was that the nutrition provided would help her skin which is now started to get red and threatens to tear. The reality is that when she’s ready, she will just stop eating and drinking. I realize the shakes might be a better option than the pureed food and dropped off a variety of flavors.

This is just another complicated issue we are facing as we want to make sure our Mom is comfortable, but not do anything that might unknowingly extend the poor quality life she is now living. Considered. 


The Merry-Go-Round of Caregivers

merrygoroundAs soon as my Mom became bedridden, we brought in extra Personal Daily Assistants (PDAs). In the course of two weeks, we have had more than half of the caregivers assigned removed from the case due to other issues having nothing to do with my Mom’s care. It’s frustrating. I have called the agency several times to express my concern with all these new faces to a woman who has dementia.

Not only is my Mom trying to cope with fact that she can’t get out of bed and walk around the community, but we have additional new faces coming in from hospice. This is a lot of change for even me to handle. My Mom does not manage change well and each caregiver has a bit of a learning curve in working to find the right way to work with my Mom.

Thankfully, my brother came to town this past weekend. He’s a Human Resources executive, so I consider the timing a blessing. I ask him to meet with the caregivers and determine which ones we should keep. I also call in a new agency. We initially used the one care agency recommended by my Mom’s community. Since I was concerned about all this change, I called in a new agency to fill in for the weekend care. Before I can call to cancel this coming weekend with the old agency, they call to tell me the caregiver from last weekend can’t return. Really … what part of “no more change” got lost between my mouth and your ears?

This is hard enough and now we are faced with finding the right agency/caregivers to best help my Mom. I’m glad I opted for Plan B. It’s difficult to realize that even the best-intention-ed individuals and agencies fall short of what our loved ones deserve. Frustrated.   


No one cares about me

threeringcircusMy caregiving journey has moved from tasks I can manage by myself to a three-ring circus. Under the three tents we have:

  • The Assisted Living Community: The center ring that has the overarching task of care, but also has the least amount of bandwidth with very busy employees who care for many residents with a wide variety of needs.
  • Hospice: The second ring that is our resource to help my Mom be comfortable as she moves through the final stages of her dementia.
  • Personal Daily Assistants (PDA): Now that my Mom is unable to leave her bed, we have hired additional personal assistants who can be with Mom from 8 a.m. to 8 p.m. to keep her company, comfortable and cared for.

As we move through this change, we are hitting a few bumps in the road. Today an adjustable hospital bed arrives  and I start getting calls from all three parties. I was told I would be called when it was scheduled, but was not contacted. In the course of one hour, I speak with all three and we put a plan in place to manage the simple task of removing one bed and inserting the new one until I can drive over.

When I arrive my mom is half asleep. The morning PDA tells me Mom has been up most of the morning with all the bed-moving activity. I sit by her bedside and wait for her to stir.

I made a pledge when this journey started that I would always tell my parents what was going on at least once. I wanted to not just repay them with respect, but treat them as I would want to be treated.

When my Mom wakes I ask her how she’s doing. She starts to ask questions. It’s hard for her to speak now; her voice has changed and she has trouble forming words. She asks where her bed went and what happened to require this new bed.

I tell her that her back hurt so much she didn’t want to get out of bed two weeks ago. All tests came back negative and they tell me it’s osteoporosis. I let her know they ordered this bed in hopes of getting her comfortable. We spend the next hour cycling through her asking to get up but being unable to stand any movement. As soon as we get ready to help her move she yells “Wait a minute, wait a minute.”  We never have the chance to really help her move out of the bed, she seems to be afraid that moving will hurt too much. The PDA is with me and we try to arrange the bed to get her more comfortable. She is frustrated at this new development and just wants to do things for herself. She keeps asking how she ended up this way.

In the midst of all this, she states “No one cares about me.” My brain stalls as I imagine how lonely and frightened she must be even now when I’m sitting next to her. She doesn’t always know I’m her daughter, she doesn’t remember that her other daughter just visited and spent three days with her, she doesn’t know that her two sons immediately made plans to visit when I told them that hospice was recommended. My first instinct is to put my hand on her hand and I lean down to give her a kiss on the head and tell her I love her and that all of us care about her. I immediately walk out of the room before the tear falls from my face. Juggled. 



You know but you are never ready: Dementia stinks

steepdeclineI have mentioned how often I’m asked about my Mom and I never seem to have a positive answer. I try to remind myself just to thank the person for asking instead of sharing any one of the negative thoughts clouding my mind.

I knew my Mom was going to decline, but as we were on the brink of moving her into a memory care community, her sudden change has thwarted the one positive thing my siblings and I were working toward. She is now unable to move on her own and is mostly bedridden. That is a stark contrast to the woman who was walking the halls just two weeks ago.

Thank you for the kind notes from my fellow bloggers: Mrs. Hsg with Before I forget who has been diagnosed with early onset Alzheimer’s; Joy Johnson with The Memories Project who started her blog as a tribute to her father who suffered from dementia and then needed to care for her mom who was battling cancer; Hallie Swift with A Swift Current who artfully shares her tales of caregiving and loss;  Mariarose of With and Without Her who recently lost her mom to dementia; Sandra Ross with Going Gentle Into That Good Night who shares her knowledge and experience generously; and the many others who aren’t bloggers but reached out. THANK YOU. This journey is tough and hearing from those of you who have gone through it, know it’s coming, or shared encouragement reminds me how much I benefit from this blog emotionally.

We know they are declining, but you never expect the sudden drops that unfortunately, are all too frequent. We also have seen some moments of clarity over the last few days, but know that the inability to manage for herself is gnawing away at my Mom’s will to continue. Shocked. 



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