Category: Managing Parent with Dementia

The Sneaky Poke and a New Connection

handforpokeI’ve had to make an adjustment to how I visit my mom. The community is dedicated to memory care so on any visit, I could be walking in to find a resident who is frantically searching for their dog and asks for my help, or one that has just decided to follow me and is trying to walk out the door with me when I leave.

I’m slowly getting to know the other residents. A few immediately made themselves known to me, but many of them don’t speak so it takes time to get familiar with the residents. On a beautiful day, we go outside to sit under the gazebo. One resident settles in next to us but doesn’t speak. A second resident walks by and we invite her to come join us. As she gets ready to sit, the first resident reaches out and pokes her right in the behind. I giggle and make eye contact with the woman who did the poking and she winks at me. She tries to speak but garbled words emerge but she continues to smile at her prank.

Thankfully, the second resident doesn’t mention it and joins as we discuss the beautiful weather. I saw how the disease changed my parents in two very different ways. Now I’m seeing a whole new host of behaviors. Some of the residents are delightful and always smiling and others are argumentative and confrontational.

For years, my mom swung between behaviors and I learned Three Go-To Tactics for Dementia Caregivers that served me well. I believe the lion emerges when she’s frightened and confused. We worked with her doctor to find a medication that would help as well as a found a new community that is dedicated to supporting those with dementia.

I grew up moving a lot and learned to take everyone I met as they are and quietly watched to see how they behaved. My habits have had to change and after watching dementia in my parents and in others, I don’t believe that man who repeatedly bangs his walls with his hands had a violent personality before or the woman who will come up and tell me to go sit down was bossy before dementia. It’s such a cruel disease that steals so much from all of us. Acknowledged. 

What to do when you visit the doctor with Mom (or Dad)?

stethoscopeHeartSo, you got mom to the doctor and even went with her. You sat quietly when she told the doctor she had nothing to report. Maybe the doctor even did a mini-mental exam and agreed that mom was fine and set up a follow-up appointment for 6 months or a year. You have noticed issues with her memory or behavior and are concerned, but it doesn’t seem like your mom’s doctor is.

There are several things you can do to help make your visit more productive:

– Contact the office in advance to tell them your concerns and let them know you are coming in with mom. Give specific examples of events.

– Talk to mom about the concerns in advance and share them while you are in the office with your mom.

I tried both of these tactics. My mom would refute or deny examples. She continued to do this with the doctors when they would tell her she had a stroke and later when vascular dementia was diagnosed.

One thing that worked well was to use my dad’s inability to answer his own medication questions as a flag to the doctor. When my dad was asked about surgeries, he would report “none” and I would then speak up to add that he had a pin in his hip as a result of a break within the past year. My dad was also unable to answer any questions about his medications or conditions, he would just reply “none”. I would use his inability to advocate for himself to demonstrate his memory issue, even though the doctor had just administered the mini-mental exam on which my dad would usually score 29 out of 30.

The psychiatrist who initially diagnosed that my dad may have Alzheimer’s told me that I was going to have to be sneaky if I wanted to help my parents. I resisted feeling like it was disrespectful. We have always had open communication, but that was not the case when it came to my parent’s health or help from any of their children.

I had to wait for catastrophic failures in their lives before I was given a window to help. It took several before I was really able to help them, and I proceeded gently.

Knowing what your loved one may be facing will help you and help them be involved in the many choices you will face. I suggest you work to make an appointment with a Psychiatrist, Psychologist or Neurologist and request a neuropsychiatric evaluation (pen and paper tests). Even if to just get a memory benchmark. You may need to present it as a follow-up appointment requested by their doctor, and hopefully, you can get their doctor to help at least make this one referral. If not, you could make the appointment and let them know it was recommended. It’s a little on the “sneaky” side, but recognize that if they don’t remember or recall this request–that is a good reason to consider using this tactic. Advised.

Wells Fargo Continues to Refuse to Accept my Durable Power of Attorney

wellsfargopt2Last Friday I posted Will Wells Fargo Accept Your Power of Attorney? Most people are shocked to hear that many banks will freely, but politely, decline to accept a durable power of attorney (DPOA). This is not the first financial services firm to say no. Three years ago Fidelity told me they would not accept a DPOA more than 2 years old; and a second one declined because it was more than 5 years old. The fact that they are doing this is frustrating and not supposed to happen. It’s complicated. I will continue to recommend you work with an estate lawyer who can help navigate this issue.

My parents did their initial DPOA in 2002. When I started to get the refusals, we worked to update their DPOA. Now that my mom is into a later stage of dementia, I need it to work so I can help continue to get mom the care she needs.

After my post @Ask_WellsFargo responded on April 30 and asked me to private message them my name and phone number. I did that. It’s been a week and no one has reached out to me.

Two days ago, the estate lawyer followed up with a letter asking that they honor my mother’s DPOA and allow me to access her funds so that they can be used for her care.

Dear Wells Fargo, The caregivers journey is already hard. Please don’t make it harder by refusing to accept the tools my mom put in place so that I could help her should she ever need it. Pleaded. 

POSTMORTEM
After getting no response from the letter to legal department of Wells Fargo, I went into my local branch every week to discuss the issue with the manager. Eventually, they worked with me to contact my siblings who were all named in the Trust to confirm that the money was to be used for my mom’s care. While in Virginia, I could have initiated a law suit, having that on my plate was one more task I wasn’t willing to consider. Thankfully, the employees at the local branch worked with me to help serve mom’s interests.

 

 

 

Will Wells Fargo Accept Your DPOA?

wellsfargoAs I began to use the Durable Power of Attorney (DPOA) several years ago, I found out that many banks don’t like them. They would prefer you use the one they supply that doesn’t give you control over when it goes into effect or a way to dictate specific wishes. If and when you need to use one, you will find that getting them to accept it, can take hours in the bank and then possibly weeks to months to resolve issues.

Last month, I went in to clear up two checking accounts and remove my Dad’s name from the accounts. It took over two hours to have it processed and the two accounts cleaned up. I was already listed on my parents major account, so I think they weren’t so worried about giving my access and POA rights over the second smaller checking account.

However, I have hit a major roadblock on an account that was named to my parent’s trust. The DPOA  specifically names the trust and gives me the rights to access it, but the Wells Fargo legal team said “No, we won’t accept it” stating that the sentence giving me the rights doesn’t specifically begin with my mom’s name. The sentence giving me access to her checking account is written exactly the same way. Inconsistent, inconvenient and ridiculous.

If you have done estate planning or are considering it, and your estate lawyer tells you that this won’t happen to you. Please find another estate lawyer. This happens to even the best estate lawyers, most up-to-date DPOA documents, and well-drawn trusts. I live in a state with a statute that was written to ensure financial institutions accepted DPOAs and comes with financial penalties for refusing it. However, doing that is a lengthly law suit and another time vampire I’m not interested in pursuing. Please just accept the papers my parents drew up so that I could use their accounts to help pay for their health and welfare, OK?

When a bank says “no” you need to be able to return to your estate lawyer and they can write a letter to try and clear up the issue. I’m not sure if that will resolve this issue or if I will have to wait until my mom passes away to get access to her account.

The best end-around is to go online. The first time I got a “no” my dad was alive and we went online and created online access to those accounts that were problematic so I could more easily act on my parent’s behalf. That was what they intended. Unfortunately, I didn’t learn about this account until a few months ago when a tax paper got forwarded to me from an old address.

Because of all the places I have found problems, I recommend you get a copy of MemoryBanc: Your Workbook for Organizing Life. This isn’t just an issue for adult children caring for parents, but for every couple that divides and conquers and every individual that wants to make sure a loved one can help you, should you ever need it. Advised.

To find out what happens to the money that is lost in the shuffle of a move, crisis, or death you can read about the $58 billion sitting with state and federal treasurers. This includes tips on how to learn if you might be entitled to some of it.

The Loss of Your Mom Will Just Rattle Your Bones

skeletonI went to find mom some new shirts that could easily fit over her head. We moved a minimal wardrobe with her to the new community back in January, and now find we need some options because what she has hurts to pull over the large lump on her forehead. She got frustrated by the buttons, so we didn’t move many of the blouses and need some options.

I was very excited to find some cotton pullovers with boatnecks that had pockets. My mom likes to have a place to keep her tissues, although up the sleeve is still a popular option. When I’m checking out somehow I come to tell the woman the purchase is for my mom. I didn’t give any more details but she responds with “Love her while she’s here, the loss of your mom will just rattle your bones.”

I want to tell her I know it will, but I also know she did not want to live like this. I still tear up more often than I would have guessed I would over the loss of my dad – and that was a year and a half ago.

Thanks to those of you that commented and sent me notes. It’s encouraging to know that I’m not alone in my thoughts and frustrations and that many have made this journey and survived.

I want to share what Susan, author of My Alzheimer’s Journey, shared with me. She wrote a daughter’s prayer to god last May. So many of her thoughts resounded within me. Thank you Susan.

dear god
please take
my mother
now and
never

I can’t bear to see her
suffer anymore
nor can I bear
to see her go

mothers and daughters
are sometimes
swallowed up
by life god

we push
and pull
and try
to find
our way
to détente

but sometimes god
disease finds
us first and
renders us
unaware

it steals the
things we
hold dear:
thoughts
words
actions
deeds
dignity

what happened
to dignity god?

is it stuffed in your
back pocket
like a forgotten note
with a grocery list
or phone number
scribbled
on it?

go away god
if you can’t
keep track
of the notes
in your pockets

no! wait god!
come back!
i didn’t mean it
i made a mistake

take her now god
all these bits and pieces
and fragments of your daughter
who was once my mother

pluck her quick
from her drug-induced trance
breathe her back to life
on the other side

let her sing and dance
with the angels
instead of
with
me

free her spirit fast god
from the tangled mind
and weakening body
that imprison her

then again, bide your time
a sedated slumber
is better than a
final resting place
where I can’t
see her face
or hold
her hand
as she
sleeps

how can her life
end as mine began
with dirty diapers
tentative steps
gurgles
drooling and trying to find
unknown words?

don’t take her now god
I will miss her
too much when
she goes

leave her
hand in mine
we can shuffle
a little further
on hell’s road
to heaven

we can play a duet
or two

I can read her stories
touch her hair
watch over her
as she did me
when I was
her baby
and she
was not
mine

let her stay
with me
a while longer
before you
take her home
where she longs to go

and when you take her god
don’t take everything

leave a piece
of her within reach
to accompany me
as I have
her

take her now god
but don’t take
her ever
I will
miss
her
so

Appreciated. 

The Caregiving Roller Coaster Twist No. 267

OLYMPUS DIGITAL CAMERAFor those of you who blog, there is a feature that lets you schedule posts. I love it because I know if I have something to say, but already posted for the day, I can push the story forward a few days. I’m hesitant to barrage you with more than one post a day. I’m breaking that rule today … and might not follow it again.

I did that last week with These Sneaks Are Made for Walking! In the morning I posted the story about Palliative vs. Hospice Care and went to visit my mom to find her using a walker to move around her community. I came back, wrote about it, and then scheduled to post. I didn’t think about at all as the weekend unfolded. So now the story is a little out-of-order. I’m sorry for that. I also realize I posted twice on Sunday … but I did sleep between posts so they felt like two different days. ; >

Unfortunately, on my visit today (Tuesday, 3/31), I find mom isn’t doing well. The hospice social worker told me on Monday they were not going to discharge mom after the fall and that she was not interested in getting out of bed.

The PDA I see most texts me this morning to check in after she arrives and reports the same this morning. Just last week she had mom walking all over the community and today, she is unable to even transfer herself. I know she is bummed to see my mom in such a state after she was doing so well. We all are.

My mom still has a very pronounced lump on her forehead and now has a black eye. The discoloration can be seen all the way down to her neck. My mom asks me to repeat almost everything today which is very unusual. After my visit I call back the social worker to ask her when the doctor is going to visit next. She tells me he’s going to see mom tomorrow.

After I’m done reporting what I saw, she tells me point blank “most people don’t recover from a fall like your moms.” I supposed we have all heard how devastating falls are to frail elderly patients, but it just didn’t seem that bad as we sat in the hospital. I was more worried about a concussion given that two of my daughters good friends have just suffered one. Mom didn’t even have a concussion, but the lingering effects are very noticeable and real.

We’ve been to this place before. If this is the beginning of the end, I only pray for it to be swift. However, I have watched my mom fight back from a lot worse. Told.

 

The Reminder to Be a Hyper-Vigilant Medical Advocate When Dementia is Diagonsed

alertThe midnight visit to the ER was long and difficult. I wondered how mom would have managed by herself in a new place alone. Her community put her in the ambulance and gave the EMTs her papers and off she went. I wonder how she would have gotten back had I not shown up. While there, I spent most of the time trying to help get her comfortable and it resulted in only some short cat-naps as we waited for the doctor, the CT scan, the report, and the discharge papers.

There was no bleeding found, but they confirmed that her ear-infection is long-lived since they found fluid behind her ear in the scan. Just last Tuesday, I watched as the doctor checked both ears after I asked about her constantly running nose. He found nothing. Tonight, the doctor immediately tells me on his first look that he can’t even see down her ear canal because it’s so swollen.

My stomach immediately tightens as I recall watching a doctor stick her hands in my dad’s mouth and pull on his tongue when I was trying to find out why he was slurring. She found nothing and within a few weeks he got diagnosed with a tumor on the back of his tongue. He wasn’t diagnosed until after his appointment with a speech pathologist.

I’ve had many discussions with a variety of my mom’s medical team. I’m always told she doesn’t exhibit the tell-tale signs of pain. Most recently, I’ve been following up on her constant foot movement. Both of my parents have proven to me that they will either cloak pain or don’t register it. It makes the job of being the medical advocate so much harder. I’ve been told by a variety of different doctor’s, nurse’s and social workers that the family usually notices issues well before it might be recognized by the medical team. I will continue to use what I know of my mom and ask about those things I see that don’t seem right. It’s all I can do. Advocated. 

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.

 

How much of me is me?

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

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

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

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

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

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

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

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.