Hindsight is a Wonderful Luxury

momsunglassesday2I’m reusing the words Remember Me shared with me because in the cycle of grief and guilt caregivers seem to float through endlessly, hindsight is truly a luxury. We often saw things that should have been a warning sign, but didn’t recognize the significance. We may have been sure something was wrong, but didn’t know how to proceed. We tried to help when we saw things failing, but my parents were not interested in the help and usually appalled at the suggestion it was needed.

I finally started to understand how much the independence meant to them when we had to come in to help because they were unable to manage any longer. Because of the dementia, I wonder if my parents just never recognized, understood, or believed that they were failing to manage in their day-to-day lives. Dementia is torturous in so many ways to both the individual and their loved ones.

I’m a huge advocate of goal-setting and one of the things Remember Me recently posted was a list of aspirations to develop a life alongside being a Care Partner.  As I struggle to direct the ever-changing team in place to help care for mom, I think coming up with a similar list will do me and mom a lot of good. Encouraged. 

When a visit with mom goes bad – Is it me or is it her?

pushI had a terrible visit with my Mom. Things had been going so well and while I was saddened by her decline and inability to remember me, she has been pleasant to me for several months. It made me wonder, was it me, was it her, or a little of both?

She was happy to see me, but started to get contentious over the ice cubes, her laundry, the trash can liner. When I told her I started a load of laundry when she was finishing up her BINGO game, she challenged that I would be so “presumptuous” as to take her laundry and put it in the washing machine. When I told her it was in the laundry basket, she backed down. When she wanted ice cubes and there weren’t any in the freezer, she wanted to know why I took all of the ice cubes. When she saw trash in the garbage can without a liner, she wanted to know why I put trash in the can without a liner. I hadn’t done any of those things, but had simply arrived and started a load of knowing we could finish doing it together.

I recognize how frustrating this disease must be to the sufferer. My Mom has always been independent and resourceful and now she needs help. She doesn’t like it — I know I might not do so well under the same circumstances.

I marvel at her ability to easily and succinctly chide me for a perceived wrong and then be unable to finish a sentence when we are chatting about the family.

As I was leaving, I wondered if somehow, she could feel my frustration today. I thought I left my worries at the door, but did I somehow move too fast or rush her through a task that just made her mad. I remember something Bob DeMarco wrote about his mother Dotty who would say “No Push, Push” when the pace of activity was too rapid for her to process. Had I moved too fast today?

Lurking in the back of my mind, I wonder if she forgets I’m her daughter and just thinks I’m messing in business that isn’t mine to manage. Contemplated.

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

 

Finding $2,500 of my Dad’s in Kansas

treasurechestStepping in to assist a parent is an overwhelming task. Trying to organize my parents medical, financial, personal and household papers was a job requirement. I needed an easy way to collect and document the information so I could easily find it as well as hand it off to a sibling who came to town to give me a break from caregiving. The experience fueled me to launch MemoryBanc

Many people are unaware that $58 billion is sitting in state and federal treasuries — it’s money that got lost in the shuffle of a move, crisis and even death. As a caregiver, you should know about the MissingMoney.org website. You can do one search and see if any of your loved ones money ended up in a state treasury. Every year, I do a quick search to see if anything slipped through the cracks. Last year, we found several accounts – one was in the name of my Grandfather, and the second was in the name of my Dad.

My sister started digging and learned that we could just go right to the state where the money was lost to claim our money. If you use the service on MissingMoney, they will take a cut or “finder’s fee” of your money. See additional information on this topic below. 

We find that my Granddad’s money is less than $100 and requesting the forms we’d need to claim would cost more than we would recoup, so we leave that money alone. However, when we learn that my Dad had money that was left in Kansas — and we have all the forms with the exception of the a proof of residency for their home in 1968 — my sister finds out how to get the old title to prove his residency.

Within weeks, we get a check for $2,500. We moved from Kansas in 1969 and grew up hearing stories about how my parents had to borrow the down payment to buy our home. The idea that there were assets that got left in Kansas more than 40 years ago that ended up being worth $2,500 is a little mind-blowing.

Given the amount of accounts you accumulate today, it’s easy to understand how easy it might be to forget about a stock certificate, utility deposit, or even a small retirement account. Enriched. 

HOW TO SEARCH FOR MISSING MONEY

To do a quick search to see if you are entitled to missing funds, visit MissingMoney.org. Enter your name and state and you will get back a list of possible matches. You can use their services to collect your money, or:

1) Go to the state web site where you believe you may have missing money

2) Search the state web site for “missing” or “unclaimed money”

3) Make a direct claim following the web site instructions.

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MissingMoney does not include all states and not all the information — in particular some very old records. To learn more about this topic, check out Mary Pitman who wrote a book on the topic https://www.facebook.com/TheMissingMoneyLady

Where are you? stings more now

spiralstairA year a half ago, I posted an article entitled “Where are you?” — and I’m still feeling the same guilt — only magnified. At least the last time I went through this stage and wrote about it (it is a recurring issue) my Dad was there with my Mom. Now I know my Mom is by herself. I also know based on my visits and from the staff reports that she is not doing very well in the community.

I get a call two hours after I visited asking me where I am and when I will be arriving and there is something frenetic in her tone.

She will go through these cycles. I imagine her decline is much like a child’s development, but in reverse. When my son was 4, someone shared that kids develop in an upward spiral — two steps forward, one step back. In my Mom’s case, she goes two steps backward, and one step forward.

When she asks me when I’m coming out — I ask her if there is something she needs instead of telling her I was just there and we went to the grocery store. She asks if I can hold on, and I wait as she roots through the kitchen and comes back. By the time she returns she picks up the phone and out comes gibberish. I ask her if she has Coke.”Wait,” she asks. She returns and this time tells me she has Coke. I transition the conversation to tell her I’m on my way to pick up my daughter and what we will be doing this afternoon. 

I fight my logical mind and remind myself of the a poem someone shared with me a few months ago that I renamed the Dementia Request. Each time I gain a little more understanding. Absorbed.  

Dementia Request

Do not ask me to remember, don’t try to make me understand. Let me rest and know you’re with me, kiss my cheek and hold my hand.

I’m confused beyond your concept, I’m sad and sick and lost. All I know is that I need you, to be with me at all cost.

Do not lose your patience with me, do not scold or curse or cry, I can’t help the way I’m acting, I can’t be different through I try.

Just remember that I need you, that the best of me is gone. Please don’t fail to stand beside me, love me ’til my life is gone.

Dad wrote “No Funeral” – Why is there a Funeral?

caissonAt T minus 40 hours to my Dad’s 20-minute funeral service, my Mom’s calls regarding the service begin. Currently, my Mom has two personality modes — the Lion or the Lamb. The Lion is in an uproar.

In the last month of his life, my Dad wrote down on a scrap of paper “No Funeral”. A decade prior, he had updated his documented burial wishes, which was such a gift to us. These were the plans he wrote before he got dementia, and were consistent with what my parent’s had been telling me since my early 20s. I know it seems odd that we had that conversation, but at the time, both my parents were traveling around the globe as part of my father’s job. Before every trip they reminded me where they stored their “written wishes” if something should happen.

Back in October 2012 my Mom talked me through their written burial wishes. My Mom wondered who was going to help her when my father passed away. I asked her why she always started this discussion assuming my Dad was going first. He was sitting in the room with us and was the one to reply “The men die two to three years before the women do.”  Back then, their plans remain unchanged from our previous discussions.

After my parent’s moved into Assisted Living in February 2013, my Mom started to bring up the conversation that they were not interested in having funerals any longer. I supposed it was because they had grown so isolated, they didn’t have many friends left and maybe thought no one would attend their funeral – but that is purely my conjecture. I still try to apply logic to dementia — it is a constant battle I fight and never serves me well. It’s such an easy trap to fall into.

My Dad is being buried with full military honors tomorrow. The service has a caisson with military band and the common practice is to walk with the caisson to the grave site while the band plays. It’s January and the remnants of the polar vortex promise to make a chilly burial.

On each call, my Mom is very angry. She doesn’t understand why we aren’t just going to the “burial site.”  I explained to her that Dad wrote his wishes and that Arlington National Cemetery has them. Logically, I understand her need to manage and bury her husband based on his wishes. However, given the dementia, as their children, we had a brief conversation and decided we should follow the wishes they laid out before the dementia. The problem is, we need to navigate through this with my Mom who doesn’t recognize her dementia and can still manage to engage in a verbal disagreement (she’s a little too good at it now).

My Mom brought this up constantly right after my father’s death but it stopped. It resurfaced a few weeks ago and has now erupted. She tells me that she is getting calls and doesn’t like people telling her there is a “funeral”. I realize that the many friends and family coming to town have no idea about my Mom’s dementia or how to really engage her now. They are wonderful to call but the conversations are setting my Mom off.

My Mom doesn’t understand that the caisson needs a place to pick up the casket and traditionally, the family walks with the caisson and marching band. After going through it once, I tell my Mom that the burial service will start in the chapel and end at the burial site. Due to the cold weather, we are doing some of it indoors so we don’t have to stand in the cold during the entire burial service. She liked that answer. Finessed. 

Please know that some of this is very uncomfortable for me to share with you, however, I wanted to be as open and honest about what we are facing in hopes that it helps you deal with your situation. This is a tough road to navigate. We continue to use the moral compass our parents provided us with to make the best decisions we can while still being mindful of our parent’s wishes. 

For specific suggestions on how to manage a difficult conversation with someone who has dementia, check out Three Go-To Tactics for Dealing with Someone who has Dementia. 

The Care Giving Roles and Working with Siblings

fourkids (2)The number of tasks involved when you are a care giver will change over time. I am one of four children in my family and the only one that lives near my parents.  Being the only local child means there are some responsibilities that are going to be mine — but my siblings and I have figured out how to share the load.

My parents are in Assisted Living and able to speak for themselves on their likes and dislikes. However, I believe our involvement will only enhance the quality of care they receive. Their acute medical issues will be addressed and I know they are safe. However, I visit at least twice a week to see how my parents are managing and how they are doing.

I previously wrote about my Dad and his flirtation with a wheelchair. Neither parent mentioned it to me when I called, but did to my brother. When I called the Assisted Living unit, they said my Dad was not in a wheelchair. However, when I visited the next day, my Dad was using a wheelchair. I made sure they knew of our interest to keep our Dad on his feet. In some cases, individuals with dementia will forget how to walk, and if that happened, we knew it would mean a new level of care for my Dad, most likely, in the Skilled Nursing unit (and separate from my Mom).

I’m extremely lucky. I have three siblings that are involved and will jump on a plane when I need help, or will make phone calls and manage different aspects of helping manage my parent’s estate and needs.

However, I thought it would be helpful to write-up some of the tasks we have broken out and divvied up between us. Shared. 

Care Giving Role Duties  Name of Sibling
Physical Provide or support activities of daily living (dressing, feeding, bathing etc.) and ensure safety.
Medical Manage the medical needs, doctor visits and medications. Coordinate with various doctors and follow-up on issues and concerns. Healthcare directives, Medical Power of Attorney, Do Not Resuscitate (DNR)
Personal / Financial Manage bill payments and cash flow as well as knowledge of legal documents and locations. Will need Financial Power of Attorney, be on bank accounts.
Investment Understand and manage the investments and other financial assets.
Legal Manage legal review of documents and if different coordinate with Personal / Financial to ensure documents in place and timely.
Historian Collect, organize and archive photos, letters, family keepsakes.
Realtor Lead decisions on property and manage vendor selection and transactions.

Please let me know if I missed any or if you family found another was to manage these tasks.

Are you a Giver or a Taker?

givetakeI have revisited this question in my personal life over the last three decades—as I’m evaluating others and as I’m taking a close look at myself—to determine in which group I belong. I remember marveling at how much I seemed to soften after my son was born, but even that was nothing compared to the change I’ve seen in myself as I have transitioned to being the primary caregiver for my parents. In both instances, I think of myself as a giver.

But I’ve realized over the years that so much of what we do to manage our lives and our modern-day habits has unintentionally turned many of us into takers. Our need for independence and privacy, mixed with our desire to keep our online “lives” secure, means that many of us are unwilling to share information that would allow someone else to step in and help us if we needed it, even temporarily. By making it so difficult for those around us to help—and by refusing to acknowledge that we may need their help—we become takers (unintentionally).

Let me use three recent examples from new clients to illustrate my point:

  • A single woman in her 30s and a small business owner has a car accident. Her partner can’t access her email or voicemail because she did not share usernames and passcodes, making it difficult to run the business in her absence. Her friends have to beg the apartment owner for a key to her home so they can get in to feed her cat while she’s in the hospital.
  • A married man in his 60s has a stroke. His wife has never managed their checking account, nor has she ever paid a bill. Their daughter lives nearby and can help mom navigate the banking and cash flow while her dad recuperates.
  • A married woman in her 40s and the mother of two has a heart attack. She did not share the username or passcode to the family’s online bill paying sites, so her husband has to patiently wait for the final bill notices and phone calls in order to pay many of their accounts. Thankfully, her friend knew the name of the family’s pediatrician, so the husband wasn’t worried about caring for the kids’ needs as their mother recovered.

Could any of these scenarios happen to you? When you are the one who steps in to assist someone else in need, you realize very quickly that the lack of documentation and planning has created a very large burden for you. But it seems many of us are doomed to repeat the same mistakes.

The one thing I recommend you do today: document and share the location of your username and passcode to your online bill pay accounts and your primary email account. View this as a simple life maintenance task – just as you would get your teeth cleaned or get an annual physical.

Not sure where to start? I’ve made the process easy with the Jumpstart Edition of the MemoryBanc Register. This will lead you step-by-step through the entire documentation process. I also recommend  speaking with an estate lawyer to get a durable power of attorney for your small business if you own one, and for your family and friends, so that they can step in and help should you need it.

We are more likely to have a temporary disability than we are to die up through our late 80s. To find out your Personal Disability Quotient, visit this site: www.whatsmypdq.org

I’m still working on staying in the Giver category. Focused. 

The level of sneakiness to which I sank

coke offerWhile both of my parents have varying stages of dementia, its my mom that is difficult to assist. Some days she has trouble understanding and comes across as illogical and mean. I finally was able to approach her and be the type of caregiver I needed to be by telling myself she has a head injury that has changed her personality.

When she does not like what you tell her or how you say it, she get’s mean. She squints her eyes, her lips curl into a cruel smile and she will tell you what a horrible child you are, how disrespectful you have become, or challenge you to “prove it.” The only way for me to keep the conversation from escalating is to play smiling possum. I will muster a smile and just do not respond. I can usually find a way to excuse myself, knowing that when I return the conversation will repeat. If I’m challenged to respond, I will often smile, shrug my shoulders and say “I don’t know.”

I learned the “I don’t know” trick from my dad. As the one who has been living with my mom, he found this worked to end a conversation. At times I thought his memory was really bad (he has been diagnosed with Alzheimer’s), but when I would talk to my dad later about the topic, he would know the answer. In many situations, answering my mom’s question would only escalate her anxiety. Instinctively, he adapted.

My mom’s doctor prescribed medication (Ativan) to relieve her anxiety, and she won’t take it. I’ve tried a variety of methods with no success.

Knowing how difficult the coming day will be when we start the physical move of my parents from their independent living apartment to assisted living, I manage to remove all the Coke from my parents home. I decided I would bring her a Coke that includes one dose of Ativan as the doctor prescribed (I offered her a 1/4 of the can mixed with the pill I ground to a powder). Coke is one of the three things my mom will drink.

During this stage of my mom’s dementia, the Ativan seems to help minimize her anxiety and improve her daily interactions with everyone.

The first thing I did when I arrived was to ask “Mom, would you like some Coke this morning?” Outed.