Tag Archive | Dementia

Light

I try so hard to focus on the good…there is so much. But on days when mom is seeping in grief from old hurts that have resurfaced…like thinking her mom just died that day (it’s been 13 years), or my dad just left today (even though it’s been 8 years) it is so hard. Dementia is a lot like reliving a nightmare…over and over again. That is the hardest part….yesterday becomes today, and not in a good way. I do feel comfort that I can help her through it, as best I can. But many days, the pain lingers…and so I cling to my faith and the goodness in my life. And continue to let go of the pain, anger, and sorrow….one day, one minute, at a time.

I wish I could switch

a light on in your head
to chase away
the fears
that you so dread

To feel your mom is not well,
“How is she now?”
“Have you heard, you ask?”
I reply, “She’s well mom, don’t worry
she is well.”

You miss her so,
As I miss you,
Slipping away
More & more
each day…

Perhaps one day soon,
you’ll see her again,
waiting to greet you
with her outstretched
loving arms…

Lifeline

 

How do you let go of someone who is still here?

How do you make peace with all the lies and fears

that have persisted all these years?

 

The bed bugs are all just in your deteriorating mind.

It’s just the very slow progression of this disease,

so very cruel and unkind.

 

The extreme dryness sets in

as you tear at your tender skin,

frantic and in pain.

 

You’re still searching for a Savior, or someone to blame.

On most days, it all just looks the same.

 

Afterall, if we focus long enough on the external,

we’ll never have to look within.

And we’ll still be stuck wondering

what could have been….

“Lifeline”

You’re watching everything you ever held on to
Slip away from you
And all you’re running from
Well it’s catching up to you Got you looking for a lifeline
Swimming in the high tide
Waiting for the daylight
To bring you home The world is too big to never ask why
The answers don’t fall straight out of the sky
I’m fighting to live and feel alive
But I can’t feel a thing without you by my side
Send me out a lifeline You’re watching everyone you ever belonged to
Walk away from you
Maybe all along you’ve been running from the truth Got you looking for a lifeline
You’re swimming in the high tide
Waiting for the daylight
To bring you home The world is too big to never ask why
The answers don’t fall straight out of the sky
I’m fighting to live and feel alive
But I can’t feel a thing without You by my side
Send me out a lifelineThere’s nothing I would change, I’d give it all away
For you again and again and over again
Everything I own is in your control

I’m looking for a lifeline
Swimming in the high tide
Waiting for the daylight
To bring me home

The world is too big to never ask why
The answers don’t fall straight out of the sky
I’m fighting to live and feel alive
But I can’t feel a thing without You by my side
Send me out a lifeline
Won’t You send me out a lifeline
Send me out a lifeline

“I will hold on hope, and I won’t let you choke on the noose around your neck….I will find strength in pain” ~Mumford and Sons

Dear Tears

I wrote the poem “Dear Tears” about 15 years ago, while my grandma was suffering with vascular dementia. She had the same type of dementia that my mom has. My mom’s mom, whom we called “Nana”, had dementia for about seven years, until she passed away in 2000. My husband and I got married just a few months after she passed.  By the end of her illness, she did not recognize most of her family. Occasionally, she seemed to have fleeting glimpses of recognition. Sometimes she seemed to remember my mom, and bits and pieces from her old life.

I have vivid memories of visiting Nana at the Care Center, which was situated not far from my parents home. At the beginning of her stay, she would beg and beg me to take her home in my “red car”. It was heart wrenching to leave her there and witness her sad, forlorn, and confused eyes, with her never understanding why we were keeping her there. I would visit often with my mom, taking Nana for walks in her wheel chair around the property.

Many times Nana mistakenly believed that my mom was married to her first boyfriend, John, whom she had dated before my dad. She hadn’t seen or talked to John in over 30 years, but my grandma would often ask how he and his family were doing, and what he was up to. Mom and I would sometimes joke about that, and I would tease her for once throwing an engagement ring John had given her into the snow, when they had gotten into a fight one night. Nana also sometimes believed that her parents were still alive, and she wondered why they never visited her. It was painful explaining to her over and over again that they were in fact, dead and gone and now in heaven.

We would often go and visit the song birds down the hall from Nana’s room, where they nested and flitted about in their wall sized enclosure. Some days Nana didn’t mind going to sit with them and listen to the tiny bird’s sweet tweeting and chirping. As time went on though, she frequently rebelled at having to see those birds. On some level, I imagine that she understood that those tiny little things of beauty were stuck and trapped inside, just like she was.

Mom and I were at Nana’s bedside when she passed peacefully to her new life with God. I remember praying the Rosary, and my mom later told me that she had felt “a strong wind” blow across the room just after Nana died, even though there were no windows in the room, and the one and only door in the room was tightly closed. We both firmly believed that her angels took her, and that the gush of wind could’ve very well been them leading her on to her next life.

I remember having emotional conversations with my mom, where she would plead with me saying things like, “Mary, if I ever end up this way, you can not put me in a nursing home. I’m serious Mary, your father and I have enough money to get full time nursing care and that is what I would want. Promise me that.” I am sure that I promised her. I probably said something like, “OK, OK, OK mom, geez…do we really need to be talking about this right now?” Little did I know then, that less than 10 years later, I would be needing to do the very thing that she made me promise her I would not do. No wonder I had severe anxiety attacks while searching for a suitable care center for her to move into. I have since gotten help for that, thank God.

In many ways, caring for my mom feels so similar to how it felt caring for Nana. They both have the same witty humor, inquisitive natures, and stick to it stubbornness. My children call my mom Nana, just like I called her mom Nana. Sometimes it’s uncomfortable, because I have such clear memories of being with Nana, and I get a sort of shock or “twilight zone” type of feeling when it sinks in that yep, it’s deja vu. I’m here again with dementia. Only it’s not Nana. It’s my mom. I am thankful for the kids in those moments. They are perfect for sucking me back into the now, and for helping me to appreciate the joy and innocence again, which they exude so well.

Dear Tears

Deep within,

my soul cries.

 

Tears and sadness

for the one,

who can not shed.

 

Tears for the one,

who knows not

what’s in her head.

 

Tears for the one,

who’s so alone,

in a world so

mangled and twisted.

 

Crying out my pain

for the precious and the dear,

who one day awake,

and know not

the face in the mirror.

 

These tears

which fall

will rest,

knowing that in the end,

His will

is what’s best.

 

This is a beautiful song written about the singer’s grandma, who had dementia. It is written and sung by the Dixie Chicks. (I don’t know the people in the photos)

This beautiful song, written and sung by Jon Foreman (lead singer of Swicthfoot) reminds me of my long journey of caring for my mom, and of all the years I spent trying to help her get better. It also helps me remember to unite my sufferings with Christ, who holds us close in our pain and deep fears.

 

The Long Goodbye…

I love poetry. I love it for its simplicity and depth. I love rhyme, metaphor, and alliteration. So often, poetry can capture thoughts and emotions that other types of writing can not. I love the idea of using just a few words to say so much.

Dementia is often called “The Long Goodbye”. That is because hour by hour, day by day, month by month, and year by year, we watch our loved ones with dementia very slowly fade away before our eyes. There are so many moments of letting go, deep grief, and also countless opportunities to embrace the “now” of those moments. A person with dementia primarily lives in the present moment. They have no choice. They can not remember specific experiences from the past, and when they do, they often get the realities of those moments confused or misplaced. Sometimes, the act of remembering hurts them, as they forget long-held, precious memories. On the other hand, not remembering certain painful moments can be a nice relief. I wrote this poem a few nights ago.

The Long Goodbye

You reach out

your frail hand

unsure

alone

on this unforgiving,

precarious land.

 

Wishing you had built

on sturdy rocks,

instead of unsteady

sinking sand.

 

Your synapses

fire at random.

At times, there is sense.

We never know what

we will get.

 

Your illusions

confuse you

“Is Nana still alive?”

“Did we have a funeral?”

“Did Bapa go before her?”

 

I answer the best I can.

“Nana passed 12 years ago, mom.

She had a beautiful funeral.

I spoke part of her eulogy.”

“You did?”

You seemed surprised by this.

I wonder why.

 

I will hold tight

to this frail

hand and mind.

Leading, as I try,

through the darkness,

on a road slowly fading,

a bitter-sweet journey

The Long Goodbye…

The following clip is of Bono, the lead singer from U2, reciting a poem titled “The Mother of God” written by William Butler Yeats. It is beautiful.

 

 

 

 

Somebody’s Baby

I wait for weeks,

months,

to fill out your annual guardianship renewal forms.

Almost to the point

where I’m forced back to court

for you.

Avoiding the hurt and the official proof

of just where

all of your dark desires

have brought us to.

 

I don’t give you a copy.

Maybe I should, but I don’t.

Because I know you won’t understand.

 

Somedays I feel stuck in this mud

of thick, dark

suffocating despair.

Wondering where we would be

if you had just held on

to the hands

reaching out to help.

 

But then I crawl up

and remember all that I have gained

despite all of the darkness.

 

I cling to His promises of

Hope

Comfort

Love

Mercy

All of which can never be taken from me…….for they are eternal……

“Do not abandon yourself to despair.

 We are an Easter people,

and Hallelujah is our song!”

~Blessed John Paul II

]

 

Groundhog Day and My Mom’s Birthday

Last week was Groundhog Day, which always falls on the day before my mother’s birthday. Dealing with Dementia feels a lot like you have stepped into the movie,”Groundhog Day”, which is a funny movie about a guy who repeats the same day over and over again. Sometimes I try new lines in the old conversations with my mom just to mix things up a little. But most of the time I repeat the old lines, because I know familiarity brings comfort to her. I wanted to give you a glimpse into a day of what dealing with Dementia looks like. This was my visit with my mom today, and some of what we talked about are among the top 3 conversations that we have on a regular basis. The words in parentheses were things that I thought out in my head, and were not actually said. Although, believe me,I would like to say them at times!

Conversation # 1.

Mom:  “When am I going to get out of here?”

Me: “Well, mom, you know we need to wait until your legs get stronger so that you can walk on your own.”

Mom: “Well, I was doing physical therapy and now they don’t give me that anymore, do you know why?”

Me: “Well, they seem to think that if you would practice walking with the walker more often to meal times, that this could greatly improve your walking. So why don’t you give that a try more?” “Physical therapy is $100 a week (on top of the $8,000 a month that it costs for you to live here) and they don’t seem to think that it does anything positive to get you closer to being able to walk again.”

Mom: “Did you tell them to cancel that?” Because that was none of your business, and I want you to tell them to start it again because I want to walk again someday.”(I am strongly tempted here to tell her that, actually, IT IS MY BUSINESS BECAUSE I AM YOUR LEGAL GUARDIAN and YOUR DAUGHTER, WHO HAS LOVINGLY CARED FOR YOU FOR MOST OF YOUR ADULT LIFE)

Me: “OK, mom, I will talk with them, OK? (therapeutic fibbing here, which is a dementia term that means you tell them what they want to hear, so you can “meet them where they are at”)

Conversation #2

Mom: “Aren’t those flowers just gorgeous over there?”

Me: “Yes, they are! I gave them to you last week for your birthday!”

Mom: “Oh, that’s right, it was my birthday, wasn’t it? Those flowers are beautiful, and your brother gave me the most beautiful outfit that he said he picked out himself!” (yes, I know you have told me and shown it to me 5 times already!) I think that he is making up for his father’s behavior.”

Me: “Well, maybe, but I think that it’s just because that he loves you a lot.”

Conversation # 3

Mom: “Did you know that your father left me? Can you believe that?”

Me:. “Yes, mom, he left about 5 years ago now.”

Mom: “No….it hasn’t been that long, it’s only been about 2 years”

Me: “No, mom, actually it has been about 5 years or so since dad left. Do you know why he left?”

Mom: “If you say it is because of my drinking, then I am going to bop you one.” (well, then I guess you can bop me one then) (I am silent here, and just stare at her) Because, you know I remember the day that I decided to stop, and it was one day I was doing the dishes (interesting, I haven’t heard this one before), and I thought to myself, “I just don’t need to do that anymore, so I just won’t do it. It wasn’t because I went to AA (because you never actually did?) or Hazleton or anything, I just knew I didn’t need it anymore.” (UH HUH….and pigs can fly now?)

With this tired conversation, I usually switch the subject, because typically my kids around, and it’s just not “kid friendly conversation” you know what I mean?

Conversation # 4

Me: “So I have been thinking I want to surprise Eric and get a dog this spring.” (I tell her all about a breed I talked to a pet shop worker about and how much the kids want one)

Mom: “Oh, that would be so fun for the kids! We had Benny (our awesome St. Bernard) before you were born! And we loved having dogs with young kids!

(Here, we have a great conversation about the past with our old dog Benny, who was the best dog in the world.)

Mom (5 minutes later): “So, when are you going to get a dog?” (SIGH) (I pretty much repeat the whole last 5 minutes) (my experience with working with young kids comes in handy with this disease!)

Conversation #5

Me: “Well, mom, I need to get going…I have a therapist appointment (where we mostly talk about you over and over and over again)

Mom: “Oh…does that help you?” Tell your therapist that your dad left your mom and she would like to know what she can do about it.”

Me: “Well, She (me) TRIED to get you to go to Mass with me today, down your hall in the chapel, and you wouldn’t go…so she (me) is working on it!” (this is where I think, “God, you sure want me to persevere don’t you?….oh, and develop my patience!” I’m workin’ on it!)

Mom: “Oh…I know, I just didn’t want to, I just don’t feel good! But, thanks so much for coming…and next time bring the kids. You know, most grand parents don’t enjoy their young grand children as much as I do.”

Me: “I know, mom, you adore them, and they adore you, and so do I (I kiss her and give her a hug) “Good bye, love you, I will see you in a few days!” (Which will be on Sunday)

Fly Away Angel Friend

Good friends are our angels on earth…helping us along, supporting us, and loving us for who we are, with all of our strengths and our shortcomings. This week my mom’s best friend in the Care Center is going to lose her battle against a fast acting cancerous brain tumor. Three weeks ago, mom’s friend, Signe, started to act out with anger and other uncharacteristic behaviors, so her daughter brought her in to get a MRI. They found a huge brain tumor, that had grown so fast and big, that there was no longer any hope for a successful surgery. Signe became an angel for my mom in many ways, and I know mom was one for her, as well.

Mom got to know Signe well early last fall when mom began to start eating out more in the dining room with the other residents. She clicked with Signe right away, as they were both very personable and friendly. Signe was closer to my mom’s age. She had strong conversational skills and was very inquisitive and cheerful, much like my mom. When I talk with mom about her friend passing soon, she sadly says, “Now who am I going to be friends with?  She was the only one who has their wits about them!” A funny quirk was that my mom thought her name was Sydney, instead of Signe, even though I tried to correct her many times! Signe never seemed to mind mom calling her by a different name 🙂

Signe’s friendship was very instrumental  in helping my mom get acclimated and comfortable there. They ate 3 meals a day together, and often spent times in between meals sitting at the table talking and sharing tea together. It got to the point where if we were with mom taking a walk, and it was close to dinner time, she would get anxious and say, “we need to hurry and get back, because Signe and I are eating dinner together, and she will wonder where I am if I’m not there!” I would sometimes get annoyed that she seemed to want to be with her friend more than me, but I also thought it was sweet, and I was very grateful that she was finally finding some happiness there.

My young kids and I got to know Signe well. She loved to see their joyful spirits and talk and visit with them. In many ways, my kids have become like grandkids to her and the other residents. They all just light up when they see us coming down the hall. I think we remind them of their own kids and grandkids and it helps to cheer them up. It is very rewarding to spread that kind of love and energy to people who desperately need it. 

Yesterday I talked to Becky, Signe’s daughter, who told me with much emotion how grateful she was that my mom came in to her mom’s life, and what a good friend she was to her. She said that my mom was like her mom’s guardian angel, & that she was always so friendly and sweet to Signe.  Signe was up sitting off in the living room when my daughter Anna & I got there. She was unresponsive, yet awake &  staring off.  I told her that we were praying hard for her.  Becky said that her mom wanted to get out of bed to see Donna (my mom).  I felt so sad for her and her family, yet very grateful that my mom was able to be that kind of friend to her during her last months on earth. 

I thank God for sending Signe into my mom’s life.  They were both so blessed to get to know each other when they did. I truly believe that God sends people into our lives exactly when we need them the most. We will miss you Signe….our special, one of a kind angel friend.