Am I Done Grieving?

Kay w Chaplain
Thanks Max for the photo!

I still tear up when I think about my Dad. He died nearly two and a half years ago. As many of us who have a loved with dementia, we also recognize how much me miss them while they are still here. We buried mom a few weeks ago (Arlington National Cemetery takes around 3 months from death to burial) in what she wanted to be a life celebration. I think we did a pretty good job of following her wishes.

The weeks after her death turned me into a swirling dervish. I spent more than a week polishing nearly every piece of silver she had given me or that I purchased with her when I tagged along with her to an estate auction. I polished the corner display cases my parents gifted when they down-sized. I reorganized my work room.

About a month after my mom’s death, I had a dream of the mom that I spent the most time with. She was funny, tart, driven, and opinionated. I had a great adult relationship with her. When I woke up, I quickly recognized that I hadn’t had a dream about mom before the dementia for years. It was wonderful and sour simultaneously.

I’m moving through the stages. I’m starting to recognize how different this journey could have been for all of us had we known the ending. I spent nearly 5 years entrenched as a sandwich generation caregiver. It was so overwhelmed that I needed to roll out of my corporate job to stay sane. I found a healthy outlet in building MemoryBanc, but I also sacrificed 5 years of an executive income. According to AARP Public Policy Institute, the average female caregiver loses $324,044 in wages and benefits. My inheritance simply turned into a replacement for the compensation I would have made. I recognize how lucky I am that I even had that benefit–most caregivers don’t.

Had we known the timing, I probably would have hired more help for mom in her final year. I wish I could have just visited her as a daughter. We believed Mom’s money needed to last possibly ten more years. Most visits included follow-ups with the nursing staff on a nagging issue or concern, or a request to the community for a door-lock, painting classes, or just to get a sense of how they felt she was doing. We still have many voids in our system to care for loved ones. I hope to find a way to bring those services, and information about the options, to the families that need them. Focused. 

3-5; 5-40 – I will never give up. Why would Mom?

nevergiveupFor those of you that play tennis, as the person who was serving at 5-40 when the game score is 3-5, you know I’ve dug myself a pretty good pit. Sadly, this type of situation is a bit of my tennis game calling card. With my partner, we went on to win the set 7-6.

I love competition and in this situation, all I can say is “never give up, never surrender” which is just a silly line from the movie Galaxy Quest. I will focus on just playing that point and plod my way on. I won’t recognize a lost match until the final score actually has me losing. I am a little worried that is not always a good thing.

I recognize, the apple doesn’t fall far from the tree. My mom is a fighter and has rebounded through issue after issue. In my last conversation with the hospice care team, I again requested that we consider something for mom’s depression. She seems infinitely sad on most visits. It’s easy to find ways to brighten her day, but I know that she’s dealing with the loss of freedom, understanding, and independence as her cognitive abilities decline.

The doctor has approved a new medication that should help her depression as well as will increase her appetite. All things considered, who doesn’t want to die fat and happy? Questioned.

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

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

it steals the
things we
hold dear:

what happened
to dignity god?

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

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

how can her life
end as mine began
with dirty diapers
tentative steps
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

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

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


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. 

If I’m not me, I don’t want to be.

imnotmetshirtDementia and end of life wishes don’t mesh. In a story I previously shared of Jerome Medalie that appeared in The New York Times last month, he was quoted as saying “If I’m not me, I don’t want to be.” His words linger in my brain as I follow-up with my mom’s caregivers to share that we should only focus on activities that give my mom pleasure. She’s never been a great eater and there is renewed concern over her eating habits.

My mom was very clear about her wishes. It was a gift that she shared them with me so I have no doubt about what she wants. However, I am struggling with how to fulfill her wishes. While I do not want to belittle this issue, I do feel like I had more compassionate options for my cat than I do for my mom. The story about the woman with cancer in Oregon who chose to end her life on her terms has helped elevate the issue into the national news. However, individuals with dementia don’t have the rights to choose to end their lives in those states that offer it. You can dictate advance directives, but dementia isn’t considered a “terminal illness” so it doesn’t fit into the legislative efforts to provide options being done by Compassion & Choices.

I wonder how I can help change this. I think the first step is to build awareness that we don’t have it right. I’ve navigated so many caregiving issues, but watching my mom progress into this disease without a way to really fulfill her wishes confounds and depresses me. I refuse to believe I can’t make a difference. Maybe not for my mom, but for those that follow.

My mom had completed medical directives and my husband and I were very specific when we completed our estate plans. If you don’t, Compassion & Choices does offer a Dementia Provision but as the article in The New York Times points out, “older adults themselves have begun a quiet debate about whether people who develop dementia can use Voluntary Stopping of Eating and Drinking (VSED) to end their lives by including such instructions in an advance directive.”

The only thing I have come up with was to launch a site that let’s people order shirts, hats, bumper stickers to bring awareness to the issue – cause I know how to do that. It could be a non-profit in which all the proceeds would be donated to help bring more awareness to the issue. If you have ideas on something positive we could do to offer more finite choices for those with dementia. I hope you will share them with me. Determined. 


It’s not so easy to honor your loved ones wishes when they have dementia

NYtimeslogoToday, an article appeared in The New York Times echoing some of my laments in honoring my mother’s wishes titled Complexities of Choosing and End Game for DementiaMy husband sent it to me after listening to me last night talk about some of the choices I have to restate in moving my mom to a new community.

The subject of the article, Jerome Medalie, states “If I’m not me, I don’t want to be.” My mom has been saying this to me since I was in 7th grade — in different terms, but her meaning was the same. After her mom came to live with us, and wasn’t able to do more than stare out the window, I began to hear my mom tell me what I was supposed to do if she wasn’t doing well. She either told me to push over a big chest of drawers on her or hold a pillow over her head. Two very horrible choices that I would never perform. She would say them sarcastically, but it continued even into my 40s. She said it enough, that even my husband knows this about my mom. Because my mom shared these thoughts with me for so long and was so consistent, I understood her beliefs about how she wanted to live and age.

Here I sit and she doesn’t know what to do from moment to moment. For the past month, she has recognized me, but we have gone through periods where she didn’t know my name and was shocked to learn I was her daughter.

Now that she is in palliative care that was recommended by three different attending physicians, I struggle sometimes with questions like:

  • Do we give mom a flu shot?
  • If she skips a meal can we offer her Ensure or another form of nutritional shake?
  • Do we send her to the dentist?

My mom was very clear and has even at times shared her frustration at living with her “bad brain.” She’s had to learn to accept help to dress, toilet, and just move across the room now that she is in a wheelchair. She will still ask for my Dad and is disappointed when he doesn’t appear.

My measuring stick is if it “gives her pleasure.” However, I pause at the dentist since my dad ended up dying of a tumor on the back of his tongue that went undetected. But exactly where and when does this begin and end? Conflicted.

What are you going to be doing in your 60s and 70s?

questionsignUSA Today just reported that life expectancy in the U.S. hits record high. Ladies who are 65 are expected to live to 81 and the gentlemen to 76 years. What are you going to do with your time?

I’m obsessed with ensuring that I continue to exercise, contribute to my community in meaningful ways and stay engaged socially. Many studies report that these are the three most important elements to aging well. The tough part is making sure that I have the wealth and health to afford these luxuries.

Have you begun to envision your future? A great book I recently found is Roadmap for the Rest of Your Life: Smart Choices About Money, Health, Work, Lifestyle … and Pursuing Your Dreams. There are many life stories interspersed and you quickly understand how many people find that the typical american dream of retirement doesn’t suit their abilities or their interests.

The time to start planning is best done in your 40s and 50s … when it feels far away. I hope you will hit your local library and check it out. Recommended. 


Mom and the PJ Puzzler

fuzzyFor several months, I’ve been trying to get a second pair of PJs for my Mom. It’s been quite a challenge. The first roadblock was my Mom’s belief that she had more than one pair. I would ask her to show me and she couldn’t find them, so she would agree she needed a pair. By the time we got to the store, she adamantly insisted she had more than one pair.  There is no winning that argument.

My second attempt to accomplish this mission was to get my Mom to write “Pajamas” on her shopping list before we left her apartment. This is no short matter — first you will have to sit through the search for the second pair, then the acknowledgement that a second pair would be useful. I did this several times and for a while she insisted that she only needed one pair. Her lone pair is fuzzy winter pajama’s and as Spring arrived, she finally decided she needed some lighter-weight pajamas. However, we spent several trips where she was unable to find a pair that she liked. If they were the style she liked, the color was wrong. I kept trying. In the hopes of saving time on the search and list making — I kept a copy. However, my Mom would not accept the list “That’s old – of course I have more than one pair of PJs” and we would just start over each time.

I was very pleased with myself when she finally purchased a pair two months ago. When they didn’t show up in the laundry, I learned from the personal assistant that my Mom told her they were not her PJs. I was never able to find them.I had suggested she put her name inside because I knew this might be a problem. However, she had refused and wryly asked “I’m not going to camp am I?”

The new medications are helping and choices don’t seem so difficult these days. My Mom recently purchased a pair of PJs three weeks ago. I was curious if she was wearing them — or even had them. Today when I collected the laundry, she asked if I want the pajama’s. She thinks they are “too heavy.”

In reality, it would be ideal for her to have at two of the same PJs. Sometimes she will go two weeks before she will allow me to launder her clothes. If she has an accident, she’s still trying to hand-wash, but given her inability to remember, I would feel better if we could just provide her with an endless pile of clean PJs to pull from each night.

I’m going to just order a pair and see if I can find ones that she will accept and use. I have a feeling that I’m going to have a whole new pajama wardrobe of my own before summer ends. Perplexed.


The Two Stinky Options for Dementia Care Givers

marie marley
Marie Marley

I am thankful that my parents choose their retirement community. It alleviates most of the guilt I feel, however, it doesn’t mean you aren’t involved or acting as a care giver. Helping my parents has been and continues to be a part-time job. The community works with me and my siblings — we are actively involved as advocates and care givers — and have been for more than two years.

Right now my siblings and I are struggling to know if my Mom is in the right place. With dementia, the transitions are the trickiest and I’m not sure one community will always be the right place for everyone. The set-up of the Assisted Living community is proving to be very challenging now. We are possibly going to have to find her a new place if the place she selected confirms that they are just unable to help my Mom any longer.

I enjoyed reading this article in Huffington Post by Marie Marley who speaks to The Pros and Cons of Placing Your Loved One in a Facility.

It’s a good read, and a good reminder that both choices stink. Conflicted.

Medical Colonialism: The New Aging Option?

thailandAs my siblings and I watch the impact of the choice my parents made, we grapple with the realization that we don’t want to follow in their footsteps. For more than twenty years my mother told me they would make sure they did not do to us what their parents did to them. Unfortunately, because of the dementia, my parents had no idea how difficult my life became when they failed to follow the plans they had made.

I came across this story today: Some with Alzheimer’s find care in far-off nations. The husband, who is from Switzerland, shared he is considering a community in Thailand for his wife who suffers from Alzheimer’s because it is “not only less expensive but more personal.”

This statement is something my siblings and I are facing. My mother is safe and cared for, but we know the staff does not have the time to spend with those in Assisted Living that their families believe would occur.Many are very loving and well-trained, but we are all struggling with how to squelch the loneliness and isolation my Mom is facing. She won’t join in the activities they offer and without short-term memory, it’s difficult for well-meaning friends to help. My Mom’s always been a lone wolf.

I shared the story of the woman who fell on the way to change her television, and recently there have been other incidents that are disturbing in that on the surface, they illustrate the inability to provide vigilant and personal care for each resident. I truly can’t imagine that a business could really provide the type of care each resident deserves. It’s why I consider myself a caregiver, even through my Mom is in an Assisted Living facility.

I’m not sure sending off a loved one to another country is the right answer, but I’m not sure I’d mind aging in paradise. Conflicted.

Other Related Stories:

Having a Medical Advocate from fellow blogger Butch

Five Steps for a More Affordable Retirement (Huff Post)

The Roller-Coaster of Hope and Anguish

rollercoasterfearFor a few days, we felt hope that we could get my Dad comfortable. We could at least give him some more time to enjoy eating, drinking and talking.

We quickly realize that the road to get my Dad to Radiation is too long and difficult for him to travel. We knew the feeding tube option was horrible, but had hope he might have another good year or two with my Mom.

My first thought when my Dad’s speech was funny was that he was having the swallowing issues seen with Alzheimer’s – but it seemed really early for that to be happening.

We recognize that putting my Dad through general anesthesia, possibly twice, then 7 –weeks of Radiation, will not only be incredibly painful, but will also further accelerate his symptoms.  Might we possibly cure my Dad of cancer to move him into the Dementia Ward?

My brother and I discuss the reality and decide that we are on the wrong path. We request that the Assisted Living facility refer my Dad for Hospice palliative services. Nauseated.