Category: Managing Parent with Dementia

20 Things to NOT Say to a Person with Dementia

20-things-not-to-say-to-aperson-with-dementia-updated-6june2014.jpgThis list comes from Kate Swaffer who after being diagnosed offers a fresh perspective on how to live beyond dementia rather than only die from it, and how family, friends and dementia care professionals can more positively support people post diagnosis to do this. She has lovingly challenged, advised, and counseled me quite a few times on my journey. We even launched a Q&A blog where we peppered each other with questions.

As a follow-up to my go-to strategies for family visits, I plucked a few key tips to consider and am listing my top ten:

  1. Don’t tell the person they are wrong.
  2. Don’t say “Remember when … “
  3. Don’t correct or challenge trivial things.
  4. Don’t assume they can’t understand you because they are silent.
  5. Don’t think they can’t communicate just because we can’t speak.
  6. Don’t talk about them to someone else in front of them.
  7. Don’t remind them of a death of a loved one or pet.
  8. Don’t blame them for the changes in their behavior.
  9. Don’t assume they can’t answer for themselves.
  10. Don’t assume because they can’t tell you, that your words or actions don’t hurt their feelings.

It is easy to read the list, but not as easy to make these part of your actions when you are visiting. I am going to share my individual experiences with each of these over the next month. It time for me to learn and I hope my mistakes will help you learn faster than I did!

Be mindful of the words you use, and forgive yourself when you make a mistake — just build on what you are learning. Recognize that the person diagnosed with dementia still has the same craving for meaning and purpose that is the core of every human.

The changes in behavior are not hidden personality traits. As the brain is changing, so is the person living with dementia. When you have met one person with dementia, you have met one person.

Thank you to Kate who continues to be a beacon of hope living with dementia working to provide us with inspiration, love and truth. Admired.

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. 

The Slow Waltz Into Dementia

waltzanimYears before my siblings noticed the changes in my parents, I knew something was wrong with my mom. She seemed more argumentative and unreasonable about things that didn’t used to bother her. My husband noticed too. I inserted myself into several annual visits with the doctors, but all concerns my mom poo-pooed. We were noticing my mom was repeating conversations, past memories were altered, and that she had a growing concern about my dad’s memory. While Dad was willing to try memory testing, my mom wasn’t.

Then all of us started to notice that our Dad who was quite joker, was less talkative. The home was a little messier, and they were socializing less. I felt like I was in a constant dance that never progressed in any positive direction, nor that I could impact.

Over the next year, my siblings and I tried two different interventions. Our parents were not interested in our concerns. They could never remember any of the times they got lost driving, the dual contracts signed for the same home repairs, and they dismissed our concerns.

We moved into what I still believe is the worst part of the caregiving journey. My parent’s didn’t recognize how poorly they were doing and we were really concerned for their safety as well as the safety of others.  We had to wait for a critical incident to happen.

Waiting for something bad to happen before action was taken wasn’t typical of my parents. They were planners, and had planned well. But the cognitive decline both of my parent’s were experiencing meant they were unable to comprehend what was happening, and even the united efforts of me and my siblings didn’t sway my parent’s beliefs.

Eventually, dad broke his hip and my mom needed my help. She didn’t know how to get to the hospital and had no idea how to really transition dad from the hospital back home. Thankfully, she welcomed my help and I was able to get dad into the rehab wing of their continuing care retirement community.

Things returned to the prior state of disarray once dad had his strength back and began to drive. We waited for the next event. Thankfully, the next issue involved a doctor who submitted the papers to have my parent’s licenses’ revoked. It became a problem when they tore up the letters and refused to turn in their licenses. They continued to drive after their licenses were suspended which caused our next major crisis.

The reality is that there is no easy road. You do what you can. Thankfully, I started this blog so it’s easy for me to look back on the three years that were very difficult. We finally got to a point when my parents welcomed my help, but the road was very steep.Reflected. 

TWO RESOURCES TO HELP CAREGIVERS

  1. This site will allow you to find the local support groups in your area.
  2. For a free guide filled with practical advice for caregivers, visit www.memorybanc.com/caretools

 

 

 

Why a Trust Was Beneficial to This Caregiver

NewYear
My parents and kids celebrating a new year.

Most of us associate “estate planning” with death. I know I viewed it that way when my husband and I did our will the first time. It was right after we had our son and were taking a trip overseas without him. We wanted to make sure we had the plans in place in case we died on our trip. Very unlikely, but it is a big fear for many new parents and it’s usually the first time couples create estate plans. At that time, our plan consisted of a will and a durable power of attorney.

Good Estate Planning is for the Living 

After caring for two parents, my opinion of estate planning has radically changed. In general, lawyers do a terrible job of educating us on the legal documents every adult over 18 should have in place. The failure to communicate the benefits of creating powers of attorney (financial and healthcare) just adds overwhelm to caregivers already working to help their loved ones. Rightly or wrongly, most of us view estate planning as planning for what happens after we die.

If you are on the path to becoming a caregiver, you will need these two documents to be an effective advocate for your loved one:

  1. Durable Power of Attorney (DPOA). Simply stated, a DPOA allows someone to act on your behalf for legal and financial reasons.There are several situations where even a spouse needs to have this document to act on behalf of their betrothed.
  2. Healthcare Directives (otherwise called a medical power of attorney) gives an individual the ability to be your medical advocate and typically includes your wishes if you are severely ill or injured.

These two documents should not cost you more than a few hundred dollars. I recommend you work with a lawyer, because WHEN you run into resistance for the durable power of attorney, you will want the lawyers help.

The Department of Health & Human Services tells us that 70% of American’s turning 65 will need three or more years of long-term care services. That means most of us will need someone who can act as our advocate for our finances, and possibly even need to sell a home or use our assets to pay for our care.

My parents had property and a variety of retirement and investment accounts and set up a trust when they redid their estate plans in 2002. It made several aspects of managing their affairs much easier for me while they were alive and even more so after they passed away.

During my time as their primary adult caregiver, many of their financial institutions refused to acknowledge their durable power of attorney. We have a statute in Virginia that would have allowed me to file a lawsuit, but on top of caregiving, that was the last thing I wanted to add to my checklist of to-dos.

It doesn’t make sense that the trust was more accepted document, but it was and several elder care attorneys have confirmed this response from financial services firms. Luckily, I didn’t have to solely rely on the durable power of attorney that was declined by firms such as Wells Fargo, USAA, and Fidelity.

The trust gives you the ability to define how you want to live your life and for that reason, it was incredibly helpful to me when I needed to be able to help my parents. It also and include a host of instructions on how to use the money.

I’m not a lawyer, just an adult family caregiver who found this legal tool incredibly useful. Let me know if you would like the name of a trusted lawyer to help you draw up your documents. Believed.

 

 

 

 

 

 

When Your Parent With Dementia Wants to Die

kayandkitty
Taken Christmas 2014. After an up and down year, mom passed away on Christmas 2015. 

My mother made it very clear to me that if she ended up like her mom, I was to either “push grannies chest on her” or “put a pillow over her head and take her out.” She was always very matter-of-fact about it. So when mom developed dementia and I watched sadness creep over her, I was pained that I really couldn’t fulfill her request for a wide variety of reasons.

The movement for Assisted Dying for the Terminally Ill doesn’t cover individuals with dementia. A friend once shared that a shot of potassium would do the trick, but which one of me or my siblings would do it?

The coping mechanism that has helped me was to focus on was what I could control. I had to fight to roll-back all the medications and vitamins being prescribed for mom. I was very open in telling the doctor that my job was to make sure we weren’t extending the low quality of life my mom was having. There is a balance. There were some prescriptions that would help avoid the skin tears that started to plague my mom. In her last year, I told the doctor if there was no option for pot brownies, then he needed to find her a happy pill. The reason I asked about the pot brownies is that I’ve had several families tell me this has helped their loved ones, and eating a brownie is something I know my mom would gladly do, while taking a pill was still something she resisted. The doctor was surprised by my request, and being in a state without medical marijuana, he suggested a medication that helped.

After mom broke her hip in mid-December, I was able to work with hospice to make her ending as quick and painless as possible. It has left a mark on my soul that still pangs me every so often. However, I knew that is what my mom wanted. I’m still not sure if the pang is guilt, grief, or just a combination of emotions.

Unfortunately, for those with dementia, there are few options to help.

When a daughter shared that her dad diagnosed with Lewy Body was asking to die, the pang I felt about my mom returned. This is torturous for both the person with dementia and their loved ones.

Recently, I ran across the story of Dennis McCullough in the form of his obituary who was the pioneer of the term “slow medicine.” As a geriatrician, he describes “slow medicine” as not a plan for getting ready to die, but a plan for caring, and for living well, in the time that an elder has left.

Back in 2008, he wrote a beautiful piece about Slow Medicine. I hope this idea can help you find peace on your journey. Confessed. 

Protecting a Parent from Elder Abuse

WEAADEvery year an estimated 5 million older Americans are victims of elder abuse, neglect, or exploitation. And that’s only part of the picture: Experts believe that for every case of elder abuse or neglect reported, as many as 23 cases go unreported. This post is to honor June 15, 2016, which is World Elder Abuse Awareness Day.

While likely under-reported, elder financial abuse costs older Americans $2.9 billion per year (National Council on Aging).  When my parents started to slow down and I noticed they were a little more forgetful, my siblings and I went on high-alert.

Thankfully, when mom signed a contract with two different firms to repair a small hole in their gutter, one for $5,200 and one $1,200 for the same repairs, she called my sister sensing she needed help and we were able to step in and cancel the contracts. It was a major warning signal that someone could take advantage of our parents.

For the 34.2 million Americans providing unpaid care to an adult age 50 or older (Caregiving in the US – AARP 2015 Report) in addition to helping with their care needs, if someone is not helping with the finances, it’s important to be vigilant because of the growing threat of elder abuse. You can download a free white paper designed for caregivers to help you understand and organize the important documents you will need.

Some elder abuse is subtle. I watched as my parents started to send checks to a wide-variety of new charities they had not previously supported. Then I started to see new magazine subscriptions to publications they would never read. These were smaller, more incremental solicitations that played on my parent’s beliefs and forgetfulness. Within a year, both parents were diagnosed with different forms of dementia.

Many adult children struggle to help mom and dad, but there are a few ways families can work together to ensure their parent’s don’t fall victim to a scam.If you are starting to see new spending habits, three things you can do:

  • Offer to help in small ways to support your parent. The fear that a child will take away car keys or put them in a “home” are very real, so make sure they know you will just be stepping in to work side-by-side until they can manage again on their own. For more on this see last weeks blog on the concept of being a “care partner”.
  • Meet with an estate or elder care attorney if you do not have a Durable Power of Attorney (DPOA) or Healthcare Directives in place. You will need these to be an effective advocate for your parents(s) and doing this now will be invaluable should a parent’s health decline.
  • Contact Adult Protective Services (APS) if you have evidence of fraud. While there is little they may be able to do, they should be able to direct you if there is evidence of financial abuse. Before you pursue this option, I hope you will check with an elder care attorney.

The two ways my parents became super subscribers and diligent donors was from phone solicitations and incoming mail. Many of us have heard about the phone scams, but you can’t discount the mail as a potential threat to your parents. Many charities and publications thoughtfully word their solicitations using language that allows the reader to believe they have already pledged money as well as been subscribers. It’s incredibly effective. Warned. 

For a checklist you can share, here is a list of scams produced by the Department of Health & Human Services.

Three Tips to Help with a Role Reversal When Caring for a Parent

Cole&PoppopAs the adult child, when you step in to help a parent, you will notice a shift to your familiar roles. I don’t consider it a true role reversal and believe treating it as such will only make helping your parent more difficult.

Three things I learned as I was stepping in to help my parents:

  1. When you are asked for help, do it and consider how you can work in tandem. While it might be easier for you to do something alone, recognize that an individuals need for “meaning” and “purpose” are two very important needs. Consider your role as “partner” not “parent”.
  2. Being right doesn’t matter. Early on, in what I feel is the most difficult part of the caregiving journey, I tried to point out all the ways my parents were failing to illustrate to them that something was wrong. The truth was that they no longer had short-term memory. When I would tell them I was concerned about them driving because they got lost on the way over, they didn’t recall they got lost and responded to my concern as if I had just made up a tall tale. I learned to focus on how I could help and what I could control. For a period of time, I would call several times a day to see if I could give them a ride or pick up something they needed on my way over. It wasn’t easy, but it was what I could do.
  3. Maintain respect for the parental role. Even into the moderate stages of dementia, my parents still had moments of clarity, felt emotions, and sensed a snub. They are still your parent, even if you are stepping in to care for them in ways that don’t fit your former roles. As the dementia progressed, I grew softer and even more respectful of who they were as they were continuing to slip further away.

I vividly recall the day I was driving my parents to the grocery store and my mom turned to me and said “You didn’t expect to end up with four kids did you?” It was easy for me to share with my parents that I always wanted four, but after having two, re-calibrated my wishes. We all had a good laugh. Reflected.

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

 

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. 

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. 

 

 

 

 

 

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.