Leave a comment

Can the Law Keep Up With Our Modern LifeStyle?

After having to step in and use a Durable Power of Attorney (DPOA) to assist my parents, I quickly found so many gaps in its functionality, I devised many work arounds with my Dad so I could help them.

Not only were we surprised to find that a number of financial institutions declined to accept the DPOA, but there are many facets of our digital lives that it doesn’t cover.

moderntechoptionsFor those of us who use online services, email accounts and enjoy the online bill-pay services provided by our banks, what we don’t know can hurt us. If you haven’t stopped to read the “terms and conditions” you accepted, they typically state you can’t share the account and the provider basically dictates the rules. If you are incapacitated, the only way a loved one can get access is if you share your username and passcode.

The Uniform Law Commission helps standardize state laws and recently endorsed a plan that would give loved ones access to — but not control of — the deceased’s digital accounts, unless specified otherwise in a will. Given that at the age of 65, 7 out of 10 American’s will need 3 or more years of long-term care, we must recognize that most people will need someone to have access to these accounts while we are alive.

If you don’t have a list that documents this information for your own benefit and that can provide loved ones with needed information,click here to download a free chapter called “Taming the Internet” from the Amazon best-seller MemoryBanc: Your Workbook for Organizing Life. This free download includes worksheets and details to help you and provide loved ones with the information they may need to help you. Offered.

Leave a comment

When You Start to Feel the Losses

dawnIn the past few weeks, I have had a host of good news personally and professionally. My daughter applied and got into the school of her choice starting in 7th grade. My son just found out he got into his first choice for college and is going to be running for a D1 track team. My book hit the best-seller list before we have even started to promote it, and I received an award from the McLean Community Center for Volunteer of the Year.

My sleepless nights began after all this stuff happened. I have always been a good sleeper, and early on found that the more stress I felt, the more my body needed sleep. My mom’s fall has brought on some new complications, but it’s nothing I haven’t had to manage through before.

When my husband comes home he asks what I was doing up at 5:30 a.m. when he left for the gym. “I don’t know.” I know something is bothering me but I haven’t been able to figure it out.

As I’m driving to a meeting it hits me. I can’t share any of the happy news with my parents. My parents were such a part of my children’s lives growing up since they came over weekly for dinner. They knew them well and we could celebrate all the wins — big and small. I’ve told mom about these life events when I visit and she smiles, but it’s not the type of response she would have given had I shared this news with her years ago. I also feel the sting of my dad’s death. He would have been so proud to know that my son went to Nationals for track as well as will be running in college, like he did.

My Pastor recently talked about how children grieve differently. One of the things she mentioned was that often the kids focus on “She won’t be here for graduation” or “He won’t be here to see me walk down the aisle.” It never hit me until today that even adult children feel this way about our losses.

My only joy comes in knowing that at least my dad is smiling down on our good fortune. Sadly, it will be sooner than I probably am ready to have my mom in that same place. Resigned.

2 Comments

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. 

6 Comments

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.

 

5 Comments

The Sneaks are Made for Walking!

My siblings and I agree that to serve our mom, we won’t pursue things we believe will extend her life. There are so many times when this creates an internal struggle for me. When my mom was declining and refused to eat, I struggled with the notion of giving her Ensure. There were other benefits like avoiding skin tears due to malnutrition so we brought in a variety of flavors to see if mom would even drink these meal replacement shakes. I didn’t want my mom to be hungry so I have used a rule that what she is being offered needs to bring her pleasure. That simple question has helped me navigate several choices recently.

Before my mom was in the wheelchair, she would constantly be walking around her community. Being able to move about as she wished gave her control. It took her a while to adjust to being dependent on someone for everything from sitting up, to dressing and toileting. In the beginning she would yell “Wait, wait,” in hopes of at least commanding the pace of her movement. She eventually began to thank everyone who was helping her move and lamented at the fact of being so dependent on someone else for everything.

One of the benefits of the hospice care were visits from a social worker. She shared with me that my mom has expressed feeling depressed over the loss of control. I was sad, but also happy that my mom confided her feelings with someone. I know she’s lonely and it’s difficult for her to understand what occurred to land in her the current community. I have explained it all to my mom in varied ways different times. First to fulfill my golden rule of always telling mom what’s coming and discussing the options with her, then as she has asked questions.

I saw how much stronger my mom’s been getting and her personal daily assistant (PDA) has been encouraging her to transfer herself giving her back some control. The doctor ordered three physical therapy sessions. I must say, we were not sure mom would comply when it was time to do the exercises and work with the therapist. She did and within two weeks I saw her walking down the hallway supported by her PDA.

On my last visit a walker appeared in her room. On my visit today, I found my mom sitting in the living room of her community without her wheelchair. She then proceeded to use it to go all the way to the Activity Room. She was slow and needed to sit down once, but she did it. 

The choice to move my mom to this new community has brought wonderful results. My mom is adapting and has actually been improving. I never thought I would have good news to share about my mom, but things have been getting better.

The diagnosis is frightening and brings so many unknowns. The only fact that I seemed to latch onto early was “things will never get better.” I am happy to have to eat my own words. Gulped. 

8 Comments

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. 

2 Comments

A Call at Midnight is Never Good News

uberAs I sit in my car from Uber on my way to the hospital, I laugh at my optimism. For the first time in months I’ve been able to respond that moms doing better and then I get the midnight call that mom fell and is at the local hospital. 

She’s happy to see me when I arrive and tells me “You always show up at just the right time.” I knew that a trip to the ER alone would be awful. 

My mom has a big purple goose egg on her forehead. After the doctor visits, it turns out all seems well but we need to get a CT scan to make sure there is no bleeding in her brain. He also reports she has an ear infection. Good to know! 

The ER visits are always long. It is already a constant cycle of questions about when we can leave. My mom tells me she thinks this is “D.U.M.B.” and we should be leaving. 

It’s 1:30 a.m. and I try to get her back to sleep. We wrestle with the sheets, the bed, scooch her butt up, down, then sideways. I’m convinced I will never get her to sleep. 

Just as we find the right position and she nods off they arrive to take her for her scan. Bleary-eyed. 

Follow

Get every new post delivered to your Inbox.

Join 596 other followers

%d bloggers like this: