I arrived to find my Dad on the floor

My girlfriend was leaving to visit her parents and asked for a copy of the MemoryBanc workbook to help her mom get a handle on the accounts and finances. I gave her two and suggested she show up to her parents home with the plan that they would work through the book together. Most of our parents won’t appreciate us showing up and telling them we think they are disorganized so make it a project you do in tandem for your individual households.

After her mom picked her up at the airport, they return home to find Dad on the floor. This isn’t the first time.

She shared that there was no way her mom could have helped get her dad up, she is younger and in better health than dad but is now exhausted caring for him and growing frail. Her dad is adamant that he wants to “age in place” and won’t considering moving to a life care community.

If you are in a similar situation, here are some things to consider:

  1. If your parent is falling and can’t get up, don’t continue to run over and help them if you are local. Tell them to call 911. I say this because I was local and kept driving over when this happened to my parents. It finally dawned on me that I was enabling them to stay in their home by showing up and making light of the issue when neither of them was hurt in the process. We were lucky that Dad didn’t fall on mom, but in many cases the caregiver is the one that ends up getting hurt. My parents finally recognized it was a big deal that they had to call 911 and made changes.
  2. Suggest your parents get on the wait list to a community of their choosing. They don’t have to move in, but for those that get on a wait list to a life care community, they usually have the ability to go there if they need Rehab or Skilled Nursing. In general, when you are being checked out of the hospital, you only have a few choices of the stand-alone facilities that have an open bed (versus have good reviews). The Life Care Communities generally have better ratings and most importantly, you are choosing where you would like to go rather than having to go to the bed that is open and maybe further away from family and friends.
  3. Ask the individual who is falling if they realize that their next fall could harm their loved one. Most people think of their issue as something that only impacts them and don’t realize that their next fall could start a chain reaction that puts their loved one in the hospital and will also impact their options for daily living assistance.

Falls are reported as the leading cause of death from an injury for older Americans. One of every five people who breaks a hip after age 50 dies within a year. According to the CDC, three quarters of those with hip fractures are women.

This is a tough situation and there are a lot of ways to assist and manage toward safer choices. Sometimes, our loved ones don’t recognize the risk to those they love if they don’t make some changes. Experienced.

What would my parents say?

KaywParents2013I was surprised to wake up to the news that Donald Trump would be our next President. My husband and kids all agreed we weren’t so happy with our options. This year felt very different because the issues weren’t really around political beliefs, but around personality, behavior and ethics. We found little room to really discuss the political views of the candidates.

I know my mom would have cherished a woman President, but I’m not sure what she would have made of the run up to the election. As career Army, I always guessed Dad was a Republican, but it wasn’t something he was likely to discuss. I’m not sure what my dad would have made of Hillary Clinton as Commander-in-Chief, but I do know he was a quiet leader and Donald Trump’s style would have made him bristle.

On days like this I realize it’s the small moments when I sure do miss them. Recognized.

Prepping for a Family Visit

KidswithparentsSummer is filled with family visits. A clever girlfriend termed these visits “oblivations” since for some, these visits don’t quite feel like a vacation, but require both the planning and money of one. This summer might be the time when you start to notice subtle changes in a loved one, or a time when you are planning to connect with a loved one who is living with dementia.

In terms of the practical visit, a few go-to strategies include:

  1. Arrive with a smile on your face, and calm in your soul. I found my parents fed off of my emotions. When I arrived rushed and task-oriented, the visits generally went very poorly. When I arrived with the mind-set of being in the moment, we had a great time. I realized that my parents would reflect the emotion I walked into the room with and would take time to reset before every visit.
  2. Be prepared to carry the conversation. Typically, short-term memory is one of the first things to falter. Asking about what they ate for breakfast, did yesterday, or even current events might be challenging for them to answer. I would arrive with pictures, a puzzle, and a few stories I could share. When my parents did talk, I would actively listen and join in the journey. I didn’t always do this, early on, I would correct the story or challenge the memory, and even use the word “remember”. While we grew up being able to discuss things and challenge ideas, doing this around my parents after the dementia was diagnosed turned into heated arguments. Even a soft suggestion to “remember” often made my mother anxious because she did not remember. When they spoke, I would stop talking and actively listen.
  3. Learn to hit the reset button. This applied to both my own attitude and my parents. Some days, getting the same question, or having my mom pick the same fight over and over were too much. When I started to loose my patience, I would excuse myself to visit the restroom, grab a soda, or return a phone call. The mini-breaks allowed me to reset my own emotions. Some days, I used the reset tactics to redirect my parents too. Often after I took a break, I would suggest we change location or start a new activity to help get the conversation off the topic that was creating anxiety for one or both of us.

My kids were helpful and willing foils for many of my visits. For about a year, my daughter was a trained wingman who would reset any issue just by being a 10-year old silly distraction. My son would quietly engage with my dad and I still giggle when I think about the time he unwittingly got my dad to return a 1.75 liter bottle of vodka just by asking “Pop-pop, you want that huge bottle of vodka?” My son had no idea I was already plotting on how to get it out of the shopping cart.

Eventually, for both parents, we got to a stage when I recognized it was too difficult for my kids to handle. I wanted my kids to understand what was happening and why it was important that I was there to help them. I knew my parents treasured every visit, but eventually I recognized that my parents in a moderate stage of dementia might be the only memories left of “nana” and “pop-pop” my kids would retain. Thankfully, my husband and I have shared many stories of good times with my parents, and they have gotten to hear my siblings and I endlessly revisit some of the classic family tales.

We all have a different journey and I hope some of these tips will help you. Suggested. 

Don’t Yuck Someone Else’s Yum

cherrypiecokeI’m not sure why I thought a bike ride on this 90 degree Washington, DC afternoon sounded like a good idea. I wanted to exercise and suggested to my daughter that we ride to one of our favorite lunch spots. I knew the route was hilly and after our successful ride a few days prior knew she could easily manage a 5 mile ride. What I didn’t realize is that she isn’t used to riding up hills. After the first hill where she so proudly raced past me and beat me to the top, she asked me to ride home and get the car. I talked her into making it to the lunch spot. Turns out she only had a piece of cake for breakfast and was running on fumes.

My mom is the one that originated the dessert is a fine breakfast idea. I grew up knowing my mom’s favorite breakfast was cherry pie and coke. While I had no interest in it growing up, my husband laughed when I told him the story because he said I have sanctioned cake for breakfast for years. However, I wouldn’t have only eaten cake before a bike ride!

After we eat, my daughter feels better and tells me after we complete the second big hill on the way back that she’s telling herself “Your mom didn’t raise a quitter, so don’t you quit!” I am a pleased to hear it at first, but then share with my daughter that it sounds like negative encouragement or as a sports psychologist once called it “stinking thinking”. I ask her if she might consider another more positive phrase that would encourage her?

That is when she tells me “Don’t yuck someone else’s yum.” I turn that over in my head a few times and realize what a great point she just made. I also realize that I give this courtesy to others, so why aren’t I giving it to my daughter?

I have learned so much on my journey as a caregiver. I learned to watch without judgement, to not let things that I could not control drive me nuts, and to let others find their way. Now I need to learn how to balance those lessons with being a mom. Challenged 

The unmistakable scent of Mom

momsstuffOne of the best gifts my mother gave to us was the summary of her funeral wishes that she wrote up more than 30 years ago, and had revised in early 2002 when they updated their estate plan to include a trust. In her guidance, she mentioned the dress she wanted to be buried in. Had she not done that, I just realized she might have been buried unclothed–or it least not in something she loved.

Over the course of our journey and this blog, I have told you about the two times we have moved mom. First, when we moved mom and dad from their Independent Living residence into Assisted Living. Then after dad passed away and Assisted Living was no longer the best place for mom, we moved her into a Memory Care community. During the first move, we took special care to find and store the dress she wanted to be buried in. Knowing that in advance and being able to plan for it is helping me move toward her life celebration service easier. I don’t have to wonder, squabble with siblings about the choice, or feel guilty because in the overwhelming process of one of the moves, we ended up donating her silk ball gown thinking she would never again wear it again.

Today as I drove mom’s clothes to the funeral home, I realize the car is filled with the scent of my mother.  It has been years since I smelled the mix of Aqua Net hairspray and Charlie perfume. I start to wage a battle of my will over my tear ducts. I lose momentarily and then begin to fill my mind with all the wonderful memories of mom from my 50+ years with her.

My grief over the loss continues to battle my relief and understanding that mom’s journey on this planet had run it’s course. Now is the time to revisit all the great experiences, lessons, and memories that contribute to the legacy of mom. Cherished.

Worried about your Parent, their Forgetfulness, and Money?

Me with my Mom last Fall on our way out to shop at the grocery store.

If a parent or other loved one develops dementia, a risk that grows with age, finances can present a big problem. In fact, you may have to step in to make sure your mom or dad doesn’t  rack up credit card debt or even go broke.

That’s what happened to Kay Bransford, an author and entrepreneur in Virginia, after her mom and dad both developed dementia. When a home contractor tried to charge her parents more than $5,000 for needed repairs, more than five times the going rate, Bransford acted quickly to cancel the contract …

Read more: http://www.creditcardguide.com/creditcards/parents-and-finances/6-ways-to-deal-with-a-loved-ones-dementia-and-debt/#ixzz3pEA0WUAQ

Flirting with Normal

brunchwithmomThis past weekend my sister came to town to visit with Mom. On Sunday, we took her out to brunch. It’s been a while since I have gone to a sit down restaurant with mom. The addition of the wheelchair and mom’s declining health made it difficult for me to confidently have an outing with mom alone. I knew it would be easy to manage with my sister, so we made a reservation for brunch.

After we were seated, we just chattered away. My sister talked about her jobs as a waitress when she was in high school. She remarked that she hadn’t thought about those jobs in many years, it must be the visit home that sparked the memories.

Two of mom’s favorite meals are fried chicken and waffles. We were pleased to find “Chicken and Waffles” on the menu so we could get her both! We were surprised by how much she ate.

While my mom didn’t talk very much, just having all three of us at the table was pleasant. My sister and I could keep the conversation going and my mom was tickled by a few of the stories we could share. Life for a few minutes felt very normal for all three of us. Delighted. 

transportchairDear Ellen: Thank you for loaning me the transport chair. We made good use of it and I know it will come in handy for many more trips. You are a blessing to so many people. <3

Palliative vs Hospice Care?

pileofquestionsI’m still a little fuzzy on the distinction because what I heard (which might not have been exactly what I was told) differs a bit from what I’ve read. I find that there is generally conflicting information on the nuances between these two levels of care and each provider is a little different. However, we are going to move past that sweeping disclaimer and I will share with you how I view these two services and the role they have played in the care of my parent’s.

When my dad, who was in a moderate stage of Alzheimer’s, was diagnosed with a cancerous tumor on the back of his tongue, we pursued treatment options and realized, not only was he not up to the fight, but before we even got to treatment options he would have to be put under anesthesia just to clean his teeth. I saw how poorly he responded after being put under anesthesia to mend a broken hip and that news was the final straw. We called in hospice to make him as comfortable as possible. He was in his apartment with my mom for about a week after understanding his diagnosis. He was in a lot of pain and had fallen trying to get to the bathroom in the middle of the night so we had him transferred to the hospice facility. He passed after the first night in the hospice facility. The team worked to keep him comfortable. We were shocked to have him go from diagnosis of a tumor to death in exactly 4 weeks. For me, I’m glad he didn’t suffer any longer, but I still cry over my loss.

Mom was admitted into hospice care after she complained of back pain, was treated with Tramadol, and for the lack of any other way to describe it, behaved like an overdosed hippie. She could move but not manage to even stand or follow simple instructions. She tried to talk but she only spoke soundless words. I wasn’t really clear that she was in “hospice” until I called to have the doctor explain it to me. It took several weeks for her to interact with me and she required a wheelchair after being bed-ridden for so long. I still wasn’t sure what it meant until as my mom began to improve, I asked if physical therapy (PT) might help get her back on her feet and was told that PT isn’t something you do with a hospice patient.

In short, I believe hospice focuses on comfort when a terminal illness with a near-term end-of-life is expected, and no therapy would be provided to improve quality of life. Palliative is geared toward those who aren’t looking to extend a life, but want to be comfortable. Generally, most with varied forms of dementia are in palliative care since there is usually a longer life expectancy.

It’s all confusing and each bit of information seemed to foster another questions. It has served me well to meet with the medical and care team and explain our goals for my mom’s care. It never hurts to ask. You know your loved one best, so do what you feel is right. Satisfied. 

For deeper answers on this topic, please visit the following:

The Layperson’s Guide to Palliative Care

The Layperson’s Guide to Hospice Care

What Palliative and Hospice Care Mean Are Not the Same!

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.


Managing dementia over the holidays is difficult

christmastreeI feel guilty as we are rolling into Christmas. When my Mom suddenly failed last month and we were advised that we should move her into hospice, I was thinking this would be my first Christmas without a parent. I was both sad and relieved by that idea.

My Moms quality of life is beyond low. She seems constantly agitated and bewildered by the events around her. She still does not understand how she ended up in wheelchair. She never seems to be comfortable. She’s also entirely dependent on someone else to help her do everything, which she bristles about. All I can do is make sure she is as comfortable as we can make her and advocate for her wishes.

Because I didn’t think she would be here, I didn’t order the little Christmas tree for her room she treasured last year. I hurt walking down the hallway filled with wreaths to arrive at her empty door. I fixed that on my next visit and we made a new wreath in the shape of a star for her door together.

The holidays are always difficult. There are new places and faces and a lot of activity. You strive to uphold the cheer of the family gathering, but often find you are managing around embarrassing moments.

We learned to avoid celebrating holidays on a day other than the real day – it just confused my parents when we celebrated Thanksgiving early one year. I have a few posts from the last few years on trying to manage through Christmas. I smile and grimace as I reread these older posts.

My one bit of advice is to simplify activities and enjoy the time and connections you can make with those you love the most. Consider writing them down. My guilt dissipates as I reread my posts knowing I’m doing the best I can. Wished. 

The right place for Mom

longroadFor several months, my siblings and I visited a variety of communities to determine if we might be able to find a better place for my Mom. My Mom is in a very nice Assisted Living facility, but it’s geared to help a variety of individuals manage the activities of daily living (ADLs). When you have dementia, just having help and reminders is not enough. Most of the activities aren’t geared to someone with dementia, and we believe my Mom needs a different environment.

Two weeks ago, my Mom’s current community launched a daytime program to engage her, and five other residents from 9 a.m. to 3 p.m. While my Mom can’t remember her day to share it with me, I have found a very different person when I visit now. On my last two visits, my Mom wasn’t sleeping but was sitting out in the courtyard peacefully on a rocking chair. While we are chatting, another resident walks by and my Mom raises her hand and cheerfully waves to someone I recognize, but have never met. The new program seems to be agreeing with my Mom.

I retained one of the women who we hired to help my Mom when she was going through periods of “unbecoming behavior.”  She has earned my Mom’s trust and offers my Mom companionship at dinner as well as can help ensure Mom’s laundry get’s done. My Mom usually hides her laundry making it difficult for the staff to be able to simply offer her that support. We still have a few gaps in her care (showering and general personal hygiene).

So many of the challenges in my Mom’s care have been to help us address behavior that doesn’t quite fit into the standard care needs for someone in Assisted Living. For that reason, we have put her on a wait list at a facility that is only geared to help its residents who have dementia. The idea of moving my Mom makes my tummy hurt and my heart race. But I was never of the belief the journey would get easier.  Fortified. 

Related posts:

What should a community include for a person with dementia?

Is my Mom in the right place?