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Mom walking – what a beautiful sight!

black KedsWhen I arrived to visit my mom the personal daily assistant (PDA) was working with her. My mom was on her feet and walking along the hallway hanging onto the railing. I feel excitement being able to witness such a noticeable improvement in mom. After years of living with dementia, I have not expected to see any improvements in her quality of life. We had hoped that getting her out of the wheelchair and back on her feet would return to my mom a sense of control. For several months she’s had to rely on someone to help her toilet, change, shower and simply move.

We are working with a therapist to get mom’s legs stronger and work on her balance. That is a tall order, but given how tenacious mom has been through many other set-backs, I’m starting to feel hopeful.

Within hours of returning home I get a call from her care manager with hospice. She touches base with me weekly and we chat through mom’s status and outlook. She tells me that mom is really low and wonders if that is normal for her. I explain that since my dad’s death, my mom has told me she is unhappy and doesn’t know why she’s still here.  I’m relieved to hear that my mom shared her feelings with the care manager. My mom has always been a very private person, and the wall she kept up has been in place even though her dementia has progressed. It seems like the wall is falling. I explain to the care manager that I discussed this with the doctor and wondered if we could find a “happy pill” for mom. While I would like to find a solution, I’m also concerned given how the pain medication Tramadol affected my mom. Would a mood pill come with the same risks? They were going to try something, but she doesn’t see that anything has been prescribed and will follow-up with the doctor.

I share with her my wish that we were in a state with medical marijuana laws. I’ve heard many reports that pot brownies have been very successful supplements for individuals suffering from dementia and feeling low. I know my mom would not refuse a brownie … ever.

I won’t let this news minimize my mom’s progress in a positive direction.I still believe getting my mom back on her feet will bring a mood enhancement for all of us. Celebrated

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My mom had a stroke, what do I do?

stethoscopeHeartOver the past month, I have had several friends tell me a parent is having trouble medically and they are unsure of what to do. In the midst of a crisis, having the conversation about how to help often comes across as gloomy, as if you don’t expect them to get better. It’s why I suggest that you have the conversation early and often. If it’s part of general conversation, exchanges of ideas, hopes and wishes, it is not gloomy. When you discuss your options before there is a crisis, you have a lot more choice.

Many of us realize that after mom or dad had a medical issue and now needs more care. Your options are limited if you are doing your selection from those facilities that can take you; or interviewing those caregivers that are available.

While I was frustrated by my parent’s unwillingness to share or curb their life based on limitations that came from the aging process, I totally understand it now. I crave to give my mom activities that would fill her with meaning and purpose. Now that I am managing everything, I sure wish I could share some of the duties with her. It would make both of us happy.

After the critical incident, you do what you can, as best you can. Take a moment to consider how many people are aging without the help and support of a loved one. I am proud of how I’ve worked to help my parents. As difficult as my job has been, it’s infinitely easier because my parents were quite clear about their thoughts on life and living. We watched two grandmother’s fade with dementia, and we discussed it. My siblings are also supportive and we used this to bring us closer together.

My hope is that you don’t repeat the mistake that put you in this position. Your job is to:

  1. Get your stuff organized
  2. Define your wishes using The Conversation Project to get talking or Five Wishes to create a plan that is legally binding in 42 states.
  3. Work with an estate lawyer to get at least  a durable power of attorney and medical directives in place (if you don’t use Five Wishes)
  4. Discuss your wishes and plans with those people who would be the ones to step in and help you.

The U.S. Department of Health and Human Services reports that 7 out of 10 people turning 65 need long-term care services averaging 3 years. To me, that confirms that most American’s will have to accept that another person will be making choices about their healthcare, finances and living arrangements. Have you made sure those who will fill this role know what you want?

My siblings and I have made many decisions for my parent’s. The most difficult was having to opt not to start cancer treatments for my dad who was in a moderate stage of Alzheimer’s. Just the thought of this decision still brings tears to my eyes. However, I know we made the right choice for him because we had conversations about quality of life for years leading up to this event.

Four products to help you navigate these choices include:

Five Wishes lets your family and doctors know:

  • Who you want to make health care decisions for you when you can’t make them.
  • The kind of medical treatment you want or don’t want.
  • How comfortable you want to be.
  • How you want people to treat you.
  • What you want your loved ones to know.

The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care

The Roadmap to the Rest of Your Life by Bart Astor will help you hone in on the options and the choices that you need to consider.

MemoryBanc: Your Workbook for Organizing Life is a practical system to help couples share account numbers, usernames, and medical and household details so that they can stay on the same page; it also provides individuals a solution to easily share this information should they ever need a loved one to step in and help them.

 

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How much of me is me?

teacupsWhen we moved mom into the new community, they warned us about her teacup collection. They were worried that residents would be attracted to the cups and saucers. My mom has a lovely collection that has been in her primary living residence for at least the last two decades. I wasn’t moving mom in without them. We also left on her rings. My mom didn’t need anymore changes and we felt the symbols of her possessions were worth more than protecting them from loss.

When they called last night to tell me there has been an accident and a resident knocked one of the display shelves off the wall, I wasn’t surprised. However, I was somewhat alarmed. What was someone doing in her room at 9:45 PM? My mom is usually asleep by 7:30 PM and her PDA leaves at 8:00 PM.

When we first moved mom, my sister mentioned that I should ask for a locking door. I asked the first week and it dawned on me that I never got an answer. Today I was told they won’t put locks on doors for residents that can’t remember how to open locked doors, could my mom do that? I am not sure.

As I’m looking at her cup collection, it dawns on me that a few missing cups won’t really change the collection. She will still have something to look at. However, it makes me envision my mom as the collection. How much of her is missing now?

I recently posted my internal struggle with how to manage mom forward and consider the options in front of us. The slogan “If I’m not me, I don’t want to be” rattles in my brain. I don’t think we have the right options, but I really don’t know how you would measure “me-ness.”

My mom doesn’t recognize me on most days now, but she is pleasant when I visit. She would prefer to nap and eat cake, but I can’t really fault her for that.

I know a day will come when I visit my mom and no teacups are left. I will cross that bridge when I come to it and enjoy the collection that is left for me to visit. Foreshadowed. 

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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. 

 

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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.

 

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Others step in when you need it most on the caregiving journey

amymessageI was recently asked about my caregiving journey. It’s been long, strenuous, challenging, rewarding, heart-breaking, fulfilling, and relentless. We recently moved mom to a new community focused on caring for those with dementia. I immediately lost one of our long-term caregivers, and then a second regular within the first two weeks. My mom’s not integrating into the scheduled activities. I got enough calls about it that I met with the Executive Director who suggested we consider new caregivers. This week we are trying out two new assistants to help get mom in synch with her new community. I know the change isn’t good for her, but for the short-term, I know if we get her to participate in the scheduled activities, we can get the extra-assistance out of her room.

She is now in a smaller room and the caregivers are with her from 8 a.m. to 8 p.m. She doesn’t like that others are with her. In her old community, they could sit in a connecting room and she didn’t know they were there. Now they are within a few feet of her during the day and she’s choosing to sleep more.

My golden rule with mom: If it doesn’t make her happy, don’t do it. I am trying to figure out how to get her more independent so we can eliminate the personal daily assistants (pdas). To do that, we need her to engage in the community. This challenge is weighing on me. Thankfully, I have very engaged siblings and my brother and his wife are coming to town to visit with mom this weekend.

Yesterday, a volunteer with the hospice company called me to ask if she could stop by and visit my mom? YES! I call her back to share more information about my mom and she tells me she will stop by to visit mom at dinner. I know my mom with enjoy company for dinner. She sends me a nice text after her visit and tells me she will visit her again on Friday.

This woman is a ray of sunshine to me. She has no idea that for decade leading up to the early signs of dementia, I ate dinner with my mom every Tuesday night, and then my parents came to my house for dinner every Friday night. The reconnection to this memory brings a smile to my face and the idea that someone else will stop by to visit mom in her new community and have dinner with her every Tuesday and Friday night brings joy to my heart.

The journey is long, but there have been and will continue to be so many people who have walked with me it makes it easy to continue on. Appreciated. 

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Taming the Internet: Keeping Track of Online Passcodes

The average adult has more than 28 online accounts and passcodes to manage. Most of us keep this in our head, on our mobile phone, under the keyboard … which does not make it a fool-proof system for you to manage. What many of us don’t know is what would happen to our online accounts and assets if we were incapacitated as well as when we pass away. Even those with estate plans are surprised to learn of the limitations.

As the primary adult caregiver for my parents, my Dad helped me set up online access to several of their accounts so I could help them. It made my job managing their money and paying bills infinitely easier. As a backup, I created a copy of the list for my siblings. I have also shared the location of my list with my loved ones where they can find it should they ever need to step in and act on my behalf.

My goal this year is to help 250,000 individuals take at least one step toward getting their information more organized. To do that, I’m giving away a free excerpt from MemoryBanc: Your Workbook for Organizing Life, which is available from a variety of online and retail bookstores.

tamingtheinternetMemoryBanc is an award-winning system to manage your documents, accounts and assets, and you can download the chapter covering your online assets “Taming the Internet: Keeping Track of Online Passcodes” that includes:

  • a worksheet for documenting your important usernames and passcodes
  • a worksheet for recording your online security questions and answers
  • information on why documenting this information is important for you and your loved ones

Click here to download this free chapter and get started now. Shared.

 

 

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