Tag: caregiver

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. 

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.

 

 

What the death of Robin Williams can teach us

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photo credit: nbc.com

By all accounts, Robin Williams had his estate plan zipped-up. He had a will and trust and even named professional trustees, so why is the family at odds over things after his death?

Grief impacts everyone very differently. As a suicide, it’s not just sudden but the nature of the death can complicate the grieving process. As caregivers, we know that many of these family issues surface well before a death.

From the latest reports, there is disagreement about how items are defined. A colleague of mine who is a professional appraiser has shared how contentious items with personal meaning but little value can wreak on a family. She commented that it’s interesting that so many parents who raised kids that argued over the last cookie expect their adult children to behave any better when it comes to settling their estate.

It seems Robin Williams put immense thought into his plan, but it sounds like there is some ambiguity and now both his wife and children who are still grieving are arguing over his things.

What Robin Williams Can Teach Us: It’s not enough to create the perfect estate plan. You have to tell those people who are impacted about your plan. Make it a part of normal conversations and allow your loved ones to ask questions and understand your wishes. You might not be around to appreciate it, but they will. And for those of caring for loved ones with dementia, we know that someone may have to make many decisions for us and our assets well before a death.

Robin  was known for his improvisational skills. As caregivers, we are required to improvise–and approaching each interaction with humor is a handy tool on this journey. Reminded. 

A ride on the caregiving roller coaster

rollercoasterfearWhen I was touring new facilities for my mom, I recall seeing several residents with soft-looking padding around their arms. One of my tour guides saw my perplexed look and explained that the resident suffered from skin tears and the thing that looked almost like a soft-cast protected her tear from worsening as well as getting a new one. I’d never heard of these.

In the course of two weeks, my mom has suffered two skin tears. It seems they are just a new complication to my mom’s health. My mom continues to be a poor eater. I keep nutritional shakes in her refrigerator, along with cans of mandarin oranges and pears for snacks. Every choice is guided by the comfort and pleasure it would deliver to my mom.

I met up with the women who helped me find a new community that would be better suited to my mom’s needs. They knew we were days away from moving my mom when she suddenly declined after receiving pain medication and the swift move into hospice care. When I report that my mom has improved and has just re-qualified to move into the community, a comment is made about the roller-coaster of emotions the caregiver experiences. I was not expecting for my mom to be around for Christmas. However, she has steadily improved in the past few weeks and is surprisingly alert and even recalling appointments for her hair care.

I love a good amusement park, but this is one ride I hope to never find there. Experienced. 

AARP’s Caregiving Story Campaign: Kay from Virginia

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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.

Making Good Decisions When Managing Someone Else’s Money

Many of us who are caregivers, are also managing finances and bill payments. I was the child who lived the closest to Mommanagingsomeoneelsesmoney and Dad when their health started to fail, and although my siblings wanted to help, they were separated by too many miles to realistically play an active role in paying our parents’ bills, acting as their medical advocates or managing their household. Those responsibilities naturally fell to me, and the amount of information I needed to manage quickly became overwhelming when it was added to all that I was already doing for my family.

Desperation is the mother of invention, and I decided to create an organizational binder that would help me collect and catalog my parents’ information. I created a one-stop-shop reference resource that helped me save time finding information. Perhaps most important, it allowed me to easily hand over all of our parents’ information—in the form of one, easily transportable book—when a sibling came to town to provide some much-needed caregiving relief. The system launched MemoryBanc.

In addition to managing a lot of new information, I ran into several unexpected roadblocks along the way: During my parents estate planning process, I was given and held their Durable Power of Attorney (DPOA). However,  despite the validity of the DPOA,  it took many phone calls and in some cases several months for the DPOA to be acknowledged and processed.  When some financial services firms refused to accept it, my father and I set up online access to the accounts so I could help them by directly acting on my parents behalf online.

In talking with friends about my experiences, I also realized that planning for future, life-changing events is something all of us seem to recognize as being important, but it’s one of the first things we put on the back burner. There are a million excuses, and I’ve lived many of them. But we need to change our attitude that doing it “later” is okay:  According to the 2011 Disability Insurance Statistics Bank: JHA Disability Fact Book, “43 percent of all people age 40 will have a long-term disability event prior to age 65.”

For these reasons, I strongly urge every adult to work with a lawyer to create a Durable Power of Attorney. It should only cost a few hundred dollars.

If you are named as the fiduciary in a DPOA, you should download the free publication called “Managing Someone Else’s Money“. It includes great recommendations as well as good information on steps to take if your run into a roadblock using a valid DPOA. Recommended.  

 

Have you heard of The CARE Act (Caregiver Advise, Record, Enable Act)?

CAREAARPI attended a caregiving support group at my Mom’s retirement community. One of the members was sharing the horror story about the release of her husband from the hospital. I immediately relived the story of my Dad’s hip surgery and the doctor’s discharge plans.

After breaking his hip on the racquetball court, the doctors were going to release my Dad into the care of my Mom. My Dad had surgery and was in the hospital for 4 days. He was in terrible pain and was unable to get himself to the bathroom unattended. At this time, my Dad was around 200 pounds and my Mom was around 105 pounds. My Dad insisted they release him so he could get back to their 3-level town home. As I sat with my Mom listening to the discharge instructions, I stopped the doctor and told him there was no way my Mom was going to be able to care for Dad. Thankfully, my parents were in a Continuing Care Retirement Community, and they had the ability for my Dad to be cared for in skilled nursing while he rehabilitated.

I thought it was derelict for the doctor to release my Dad into the care of my Mom given his needs. At the time, my Mom was initially unwilling to admit she couldn’t care for my Dad. However, at a glance, it seemed very obvious that my Mom would be unable to help my Dad get out of bed and to the bathroom and ridiculous that he would be able to climb two sets of stairs so soon after his surgery.

While my Dad was angry and hated being in skilled nursing, he needed to be able to get himself to the restroom at minimum. Then he was able to finish his recuperation in their one-level apartment.

I’m not sure the new act if implemented will help, but I’m glad to see some light brought to this topic many of us have already faced. Finally, Some Help For Family Caregivers After Hospital Discharges Interested. 

 

Additional Related Stories:

Support Seniors and their Family Caregivers AARP

Thank you Gov. Fallin, Legislature for Support Marjorie Lyons

 

The Ultimate Mother’s Day Gift

redpresentI recently finished teaching a course for adults over 50 to help them gather their important papers and document their personal wishes. An important statistic I shared with them came from The National Clearinghouse for Long-Term Care Information, which reports that by the age of 65, 70 percent of Americans will need long-term care—and the average term is a little more than three years!

Several of my students were widows with grown children, and during the class, they approached me to ask about services that could help them manage if they needed support. They didn’t want to burden their children, and the isolation felt behind that simple question hurt. I know my Mom felt the same way, yet I believe most children would prefer to have this discussion with their parent rather than struggle through the issues my family faced (visit the first post on this blog if you are unfamiliar with our challenges in caring for two parents with dementia). I can imagine the hurt I would have felt had my Mom hired someone and not discussed her choice with me or one of my siblings.

While we have just celebrated Mother’s Day, I hope those of you in great health with vibrate families will consider celebrating your mom with the ultimate gift — your time. When you need this information is always a bad time to start the discussion. Every day is a good opportunity to let your mom or dad know that you are there and would like to help SHOULD they ever need it.

Good times to raise your offer include:

  • When they ask you to be their executor or share their estate planning documents with you.  Let them know you are honored to be asked and request that they schedule some time to sit with you to share the information you would need to fulfill this role.
  • When something has happened to a family friend. These are the best times to warmly ask how your parent might want you to help if your family was faced with a similar situation.
  • At family gatherings when you are all sitting around a table. You can ask open questions like “Have you noticed any changes or had to give up things you love since you have gotten older?” Once you find an opening to the discussion in a positive light, you should be able to build on that discussion.
  • If a parent has cognitive impairment, there may never be a good time. It could be that they don’t remember much of the information and are afraid to share it with you. In this case, you will have to work on finding mailings and checking files to collect the information. A cell phone with a camera can be an easy way to gather information without mom or dad feeling like you are sneaking around and taking their papers.
  • In general, you will need to be patient, take it slow and look for windows of opportunity to raise these issues.

When you are ready to sit down with Mom or Dad to gather this information, please use this list to identify the information you need. If you are interested in using the MemoryBanc Register which prompts you through the collection of all the needed information, any order placed in the month of May will receive a 20 percent discount when you add in the coupon code of “Mother”. Gifted. 

 

Finding ways to work through the stress of caregiving

tennisI wanted to improve my tennis game so my husband and I joined the local gym that offered tennis. It took me a while to get into lessons, flights and play with others who would help me be able to improve my game.

Several women welcomed me and invited me to join their weekly groups and even join into their lessons. Tennis has been an incredible way for me to find new friends as well as work off the stress of caring for my parents.

Most of my tennis friends know what I’m dealing with. My parents have come to watch matches. When my father died, I actually volunteered to step in and play if someone needed a sub as soon as the day after his death. I find the rules that require you to turn off your phone and dedicate uninterrupted time therapeutic. I can shut off my brain to life outside of the court lines.

A friend shared an article that was recently posted in The New York Times called “Walking the Talk” and I love the idea. After the winter we have faced, the story is compelling and makes me wonder if there are local groups like this to help move through the stress of caregiving.

What are you doing to work through the stress of your caregiving experience? Asked. 

 

 

 

Beauty in the Breakdown – You Sure?

letgoMusic uplifts my mood. It helps me focus and makes me happy. I will typically be listening to techno-pop — it’s better than caffeine if I want a pick-me-up.

I first heard Let Go by Frou Frou when watching Garden State (I thought it was on at the closing of an episode of Gray’s Anatomy — a show I never really watched, but Internet sources won’t validate my recollective memory on that point). It’s been in my head, but never on my iPod, so I finally downloaded it last week. I like the tune and the focus on “letting go and jumping in.”

However, today this song brought me to tears as the words hit me very differently. For a few weeks I’ve noticed a decline in my Mom. When I arrive at her community she is in the living room playing bridge with a new group of residents. Now that she has spotted me, she wants to leave the game, but I encourage her to return – they can’t play without her. She insists we go to her apartment while the bridge group is taking a break. Within a few minutes there is a knock on the door asking her to return and she is really rude to bridge player that has come to invite her back to the game. I decide I have to walk her back to the game and I stay within eyesight so she knows I won’t leave until we can spend some time together. 

We visit after the game is over and she is having trouble talking with me today. I’m confounded and amused as she complains that they were beginner bridge players. She can’t remember what day it is, so I wonder how she can remember her bids and those of her table mates. I’m told long-term memory hangs on and she is a bridge life master. There are so many aspects of her day that are mysteries to me.

After my father’s death, I realized that much of the grieving and acceptance I did as my parents were moving into dementia allowed me to manage while they were still on the planet, but I have been humbled by the depth of loss I have felt over my Dad. If he didn’t have dementia and I was not his caregiver, would his loss be as profound? I shall never know.

As I’m leaving the Assisted Living community today, I play my recently downloaded song. I knew the gist of words, but today I hear there is “beauty in the breakdown” and burst into tears.

This experience has changed me in many ways. I recognize that I’m a much kinder, gentler version of my former self. For that I’m grateful. However, I can’t find any beauty today in the loss of my mother. Searched.

So, let go,
Jump in
Oh well, what you waiting for?
It’s alright
‘Cause there’s beauty in the breakdown
So, let go, yeah let go
Just get in
Oh, it’s so amazing here
It’s all right
‘Cause there’s beauty in the breakdown

Helping someone with Dementia find Meaning and Purpose

helpinghandMy daughter and I visited my Mom yesterday and as we were leaving my 11-year old turned to me and said “She’s a lot worse.” I have noticed that instead of one or two odd-ball comments, she now has whole sentences that don’t make sense.

She is also doing things that don’t seem very nice, but I know under her actions there is good intent. My Mom is a life bridge master and created and directed games around Northern Virginia. Several of them were in the Retirement Community where she now lives. I was told that she has been very disruptive at the games and have visited and seen the resistance to find her a partner lately. About a year ago, she tried to willingly turn over the games to a woman who volunteered. My Mom was having a hard time getting the bridge boards together. I know the woman had a very hard time because my Mom would forget she turned over the game and try to take it back over. Apparently, she still forgets which causes trouble.

A few weeks ago, the woman who was running the games got ill and has been in the nursing unit. My Mom went to go take her “boards” back from the community room. When I asked her why, she couldn’t tell me.  She is having a hard time putting her ideas together and communicating her intent — the first week she told me the story, it just sounded like she felt like this was her opportunity to steal back the equipment she turned over to the new volunteer director. Yesterday, she finally told me she was getting them ready so they would have boards to use so they could still have their games.

What I do see when I visit my Mom is how many things she can still do. My daughter hurt her foot and is now using crutches. On our trip, I would stop by the front door to let out my daughter and my Mom. My Mom would hop out of the car and get the door open to help my daughter. She was attentive and tried to assist with small tasks during our entire visit.

That is the missing component now for my Mom. She has been a tinkerer her entire life and having small tasks or someone to help would do her a heap of good. The Assisted Living community can keep her safe, but they just aren’t staffed or designed to keep her mind engaged doing activities she is interested in joining. They do offer bingo and movies and Zumba — but those aren’t things my Mom is interested in. I bet she would be interested if they offered activities that would help others. My Mom was a caregiver for my Dad, but now that he is gone, I know with the right guidance, she could still help others. Wondered. 

Please let me know if you have suggestions or are familiar with programs or facilities that offer more purposeful activities.