“Still Alice” speech

I recently finished reading the book, “Still Alice” by Lisa Genova. It is also now a nominated film, which is currently playing in theaters. It is a moving story, and is told through Alice’s voice, which gives one a very interesting perspective on what it may feel like to be living with dementia.

The following excerpt is my favorite part of the book. It is a speech that Alice gives at a dementia care conference. It is real, raw and powerful and relates how above all, those who live with dementia have a soul and spirit that transcends the ravage effects of this horrible disease.

“Good morning. My name is Dr. Alice Howland. I am not a neurologist or general practice physician, however. My doctorate is in psychology. I was a professor at Harvard University for 25 years. I taught courses in cognitive psychology, I did research in the field on linguistics, and I lectured all over the world. I am not here today, however, to talk to you as an expert in psychology or language. I’m here today to talk to you as an expert in Alzheimer’s disease. I don’t treat patients; run clinical trials, study mutations in DNA, or counsel patients and their families. I am an expert in this subject because, just over a year ago, I was diagnosed with early-onset Alzheimer’s disease.

I’m honored to have this opportunity to talk with you today, to hopefully lend some insight into what it’s like to live with dementia. Soon, although I’ll still know what it is like, I’ll be unable to express it to you. And too soon after that, I’ll no longer know I have dementia. So what I have to say today is timely.

We, in the early stages of Alzheimer’s are not utterly incompetent. We are not without language or opinions that matter or extended periods of lucidity. Yet we are not competent enough to be trusted with many of the demands and responsibilities of our former lives. I no longer work at Harvard. I no longer read and write research articles or books. My reality is completely different from what it was not long ago. And it is distorted. The neural pathways I use to try to understand what you are saying, what I am thinking, and what is happening around me are gummed up with amyloid. I struggle to find the words I want to say and often hear myself saying the wrong ones. I can’t confidently judge spatial distances, which means I drop things and fall down a lot and can get lost two blocks from my home. And my short term memory is hanging on by a couple of frayed threads. I’m losing my yesterdays. If you ask me what I did yesterday, what I saw, and felt and heard, I’d be hard pressed to give you details. I’d guess a few things correctly. But I don’t really know. I don’t remember yesterday or the yesterday before that.

I have no control over which yesterdays I keep and which ones get deleted. This disease will not be bargained with. I often fear tomorrow. What if I wake up and I don’t know who my husband is? What if I don’t know where I am or recognize myself in the mirror? When will I no longer be me? Is the part of my brain that’s responsible for my unique ‘meness’ vulnerable to this disease? Or is my identity something that transcends neurons, proteins, and defective molecules of DNA? Is my soul and spirit immune to the ravages of Alzheimer’s? I believe it is.

Being diagnosed with Alzheimer’s is like being branded with a Scarlet A. This is now who I am, someone with dementia. This was how I would, for a time; define myself and how others continue to define me. But I am not what I say or what I do or what I remember. I am fundamentally more than that. I am a wife, mother, and friend. I still feel, understand, and am worthy of the love and joy in those relationships. I am still an active participant in society. My brain no longer works well, but I use my ears for unconditional listening, my shoulders for crying on, and my arms for hugging others with dementia.
Through an early-stage support group, through the Dementia Advocacy and Support Network International, by talking to you today, I am helping others with dementia live better with dementia. I am not someone dying. I am someone living with Alzheimer’s. I want to do that as well as I can possibly do.

Please don’t look at our Scarlet A’s and write us off. Look us in the eye, talk directly to us. Don’t panic or take it personally if we make mistakes, because we will. We will repeat ourselves, we will misplace things and we will get lost. We will forget your name and what you said two minutes ago. We will also try our hardest to compensate for and overcome our cognitive losses. I encourage you to empower us, not limit us. If someone has a spinal cord injury, if someone has lost a limb or has a functional disability from a stroke, families and professionals work hard to rehabilitate that person, to find ways to cope and manage despite these losses. Work with us. Help us develop tools to function around our losses in memory, language and cognition. Encourage involvement in support groups.

My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I’ll forget that I stood before you and gave this speech. But just because I’ll forget it some tomorrow, doesn’t mean that I did not live every second of it today. I will forget today, but that doesn’t mean that today did not matter.

I am no longer asked to lecture about language at universities and psychology conferences all over the world. But here I am before you today, giving what I hope is the most influential talk of my life. And I have Alzheimer’s disease. Thank you” – Alice Howland

This is a beautiful song written for those with dementia…

Lifeline

Phone conversations with mom have become almost impossible. She refuses to wear hearing aids and she tends to accidentally push the mute button, so you can imagine the result.

So I brave through another wave of grief. Back in the day, mom and I talked on the phone almost every day. We would chat about everything and nothing. A friend to confide in, who was always ready for some loving advice. She was a positive person, always trying to find a bright spot to any issue. I wrote this last night to help me “just keep swimming” in the grief. Poetry always does that for me.

Attempting
To reach me
Across
The line

Feeble, rushed, and
Stuck
On the buttons
You can’t
Find

You mumble,
“Are you coming to get me?”

Among other
Disjointed imaginings
Floating
In your head

“That’s what the Dr said”
“Tomorrow, you take me home”
“Speak louder! I can’t hear you!”
Again
and
again
And
Again

Like trying to
Save a drowning
Swimmer;
Muffled requests,
Urgent pleas,
Save me
Save me
Save me

Screaming
“I love you, mom!”
“I’ll see you soon!”
Knowing
And seeing
It’s a I can do

A lifeline
To hold her up
So her fears
Don’t choke her
To soon

Just enough
To keep her afloat
another minute,
Or until
I’m with her again
In her
room…

Strength for the Journey

We needed to move mom to a new room in a different wing in the care center this weekend. Ironically, it is the exact same room that they wanted to move her into when she first arrived five years ago. It is a very small room at the far end of a hallway, so back then I worked to have her moved to a larger room right away. She has been in the newer, larger room, & unlocked wing since then, until yesterday.

She has had a few incidences these past couple years of escaping her floor to other floors. Last week she was found upstairs (she had taken elevator) and was found at the far end of the assisted living section. The director suggested that we move her as soon as possible, since it is a huge liability and safety issue for her as her dementia progresses.

Change can be very upsetting and disruptive to a dementia patient. When I went yesterday and today, mom began crying right away, exclaiming that she was so happy and relieved to see me. She hates her room, and thought she was in a new building. She has no idea where she is or why we had to move her. I don’t explain that it is because she needed to be in locked unit, so I say that they have her on a waiting list for a bigger “apartment” style room upstairs. I try to be as upbeat and positive as possible, trying to point out the good in the situation.

I feel strong today, thanks to my deep faith getting me through. As with other challenges throughout this journey, I try to focus on the positive, even amidst the rough moments. That mindset greatly helps me to recognize the wonderful moments throughout. For instance, today while wheeling mom down her new hallway, there were two very sweet & friendly ladies who just beamed when they saw my kids. One reached out to my oldest and complemented her and said sweetly, “I just love you!” We just laughed and smiled and knew we made her day.

Sometimes it seems as if the residents haven’t seen kids in years, and with some, I think that is the case. It warms our hearts to bring that kind of meaningful joy to those who are so lonely. It is those gifted moments that help illuminate the dark times, and gives me hope and a reassurance that God is always near.

I found this prayer tonight and it was just what I needed to hear today:

Beatitudes for Caregivers

Blessed are those who sleep poorly because they’re worried about their loved one or because their loved one wakes in the middle of the night and needs help, for theirs is the kingdom of heaven.

Blessed are those who mourn because their loved one, though still alive, is slipping away because of dementia, for they will be comforted.

Blessed are the meek who force themselves to speak up and speak out to make sure their loved one receives the help he or she needs, for they will inherit the land.

Blessed are those who hunger and thirst for answers to why this is happening to their loved one and how much longer it will go on, for they will be satisfied.

Blessed are those who show mercy, kindness and compassion to their loved one, for they will be shown mercy, kindness and compassion.

Blessed are those who keep clean a loved one who is physically or mentally unable to keep himself or herself clean, for they will see God.

Blessed are those who help their loved one find moments of peace, for they will be called children of God.

Blessed are those who are misunderstood, not appreciated and taken for granted in their role as caregiver, for theirs is the kingdom of heaven.

Blessed are you whose caregiving efforts are unjustly criticized — or who are falsely accused of not caring about others — because of your love for your care-receiver and your love for God, who has asked you to help his beloved son or daughter.

Rejoice and be glad, for your reward will be great in heaven.

A Caregiver’s Prayer

Heavenly Father, help me better understand and believe I can do what you ask me to do.

Forgive me for the times, even now, when I question your judgment.

As I go about the many daily tasks of caregiving, give me energy.

As I watch my loved one oh-so-slowly walk across the room, give me strength.

As I answer his/her repeated question just one more time, give me patience.

As I look for solutions to whatever is the most recent concern, give me wisdom.

As I reminisce with him/her about the “good old days,” give me a moment of laughter.

As I get to know my loved one in a new way, seeing both his or her strength and frailty, give me joy.

As I sit beside my loved one’s bed waiting for his or her pain medication to take effect, give me comfort.

Lighten my burden, answer my prayer, and give me the strength to do what so often seems impossible. Give me a quiet place to rest when I need it and a quieting of my anxieties when I’m there.

Change my attitude from a tired, frustrated and angry caregiver to the loving and compassionate one I want to be.

Remain my constant companion as I face the challenges of caregiving, and when my job is through and it’s time for me to let go, help me remember that he or she is leaving my loving arms to enter your eternal embrace. Amen.

From Catholic Herald.

This entry was posted in Caregiver Stress, Caregiving, Caring for Self and tagged Caregiving, Caring for self on October 7, 2014 by LifeFone.

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Rising up

There are days when life is unbearably hard. We carry around our old burdens like sacks of boulders, unwilling to set them free.

I know that I don’t need them,
but without them, how can I be me?

For most of my life, I have been my mother’s caregiver. Her guide…hoping, willing, trying…to set her free. A role I know I was never meant to play…or was I?

I have been strengthened &
refined by
these trials.

The other week I went to visit her feeling so weighted down & heavy with resentment, going to see her mostly out of duty. As we go up to the deli, I see printed on the board:

“Be thankful for the obstacles in your life…they give you strength on your journey.”

Yes…Ok, God…you are right. It is something we hear again and again, isn’t it?

“That what doesn’t kill you, will make you stronger”

I sometimes get stuck in the old lies and hurts of the past. I even get angry at God, so I avoid him for awhile. But all that serves is to cause me more pain.

I get so tired of trusting in a plan that I can’t always see. I suppose it’s my old need to stay in control. When I struggle to surrender my control, I pray for Him to help me trust:

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” ~Jeremiah 29:11

“We do not look at the things which are seen but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal. ”
~2 Cor. 4:18

“Trust in the Lord with all your heart, 
and do not lean on your own understanding.
In all your ways acknowledge him,
and he will make straight your paths.” ~Proverbs 3:5-6

This song, Rise Up, has gotten me through this tough week. It reminds me to keep my eyes UP, focused on Him, His word, His light, His mercy, His ever present grace & love.

“When you don’t know how to surrender
Cause your whole life’s been a fight
When the dark holds you and you can’t break through
Cause you haven’t seen the light.

Open up your eyes…

You’ve got to rise up, rise up
When this life has got you down
You’ve got to look up, look up
When you search and nothing’s found
My eyes have seen the glory of the love that’s here and now
It’s coming down
So rise up now.
Yeah rise up now,
Oh rise up now.”

A poem I wrote this summer:

Forsaken,
Alone,
And
Misunderstood

Uniting
Your sorrows
With All,

When
No one else
could

Following you
on the road
To Calvary,

Wretched,
Aching,
& Unforgiving,

This heavy cross
Of wood

Clinging to you
for dear
Life

Your promises
And
Hopes

Holding on…

We were
Made for You,

We were made
For good…

Burn Out Brightly or “Just Keep Swimming”

The news of Robin William’s tragic death by suicide yesterday has left me reeling. He was a favorite actor and comedian of mine, as he was for countless others. 

This loss hits so close to home for me. My mom’s story is very similar, only her life isn’t ending as abruptly or as brutally. But, it is just as tragic. She too, has suffered for years with severe depression and addiction.  She too, could just never get that damned monkey off her back…always wanting more of her…no matter the cost.

You want to know the hardest part of my journey right now? My mom has no memory left of the path of destruction her abuse of chemicals created. Her world of denial, in which we always dubbed, “Donna World” is now permanent. She is now trapped for good, living in a prison that she helped to create. So each time she so desperately looks at me with those confused eyes and says, “Why am I here? Why can’t I go home?” I have such polarized internal reactions, that sometimes I literally feel physically sick from the intensity of my emotions. 

A part of me wants to scream out at her, “YOU PUT YOURSELF HERE, REMEMBER MOM? YOU FUCKED IT ALL UP, REMEMBER?” (which is cruel irony, since she can’t remember) In those crazy feeling moments, I need to make a conscious deliberate choice of taking a very deep breath, counting to 10, and praying to God for HELP to control myself, so that I don’t actually yell those things out loud.

At the same time, another gentler, forgiving side of me wishes to whisper, “Don’t worry, I will be your memory and eyes. I will guide you to the peace you’ve sought after for so long. I will be your angel.”

Each time I hear of a death of a much loved actor or celebrity from addiction or depression, it feels like a bandage is being savagely ripped off of a healing wound (my grieving heart), leaving it bloody, gaping and rawly exposed once again. That may sound a bit exagerated and dramatic to some. And I suppose it is for those who have never experienced the hell that is the world of addiction and severe depression. 

For most of my life, (since I was about 10 years old) I have suffered on and off with severe depression. I am not talking about the “oh, I feel sad” feeling that leaves the next hour or day. I am talking about the “can’t get out of bed, or face another day of debilitating blackness and sorrow” kind of feeling that persists for days, and sometimes even weeks or months. 

Much of it stemmed from the turmoil I was surrounded by as my mom struggled to stay sober and the helplessness I continually felt as I watched her spin out of control again and again.

As other 13 year olds were thinking about what dress to wear to the dance that weekend, I was busy consoling my dad after mom yet again fell down the long flight of stairs in her drunken stupor, as he clinged to me pleading, “What do I do, Mary?” What do I do? Tell me what to do” I thought at the time that I was supposed to know the answer to that question. When I didn’t give him an answer, I felt even more helpless.

When it got really bad, I remember hiding behind the chairs in the living room as mom and dad fought about her drinking and lack of control. I remember all to well the one and only time that I confronted mom in her rage, begging her to “please stop doing this to us”. She responded by slapping me very hard across my face, leaving it very red and burning. And, like many codependents do, I remember being preoccupied by finding her bottles and pouring out her liquid gold. But I was careful not pour out all of it so that she would know… just enough that she would wonder when she had drank that much of it. Call it tricks of the enabler’s trade.

When I was a teen things got so bleak, so helpless, so dark for me that I locked myself in the bathroom one Saturday night when mom and dad were out for dinner, with a serrated steak knife, a towel, and a bottle of tylenol. People wonder how a person could ever DO something so horrific as cutting themselves. What they don’t understand is that in some odd twisted way, the searing, hot pain of the cut is in some way a relief from the intense overwhelming dark emotional pain going on inside. It numbs the intense pain inside for just a minute, and provides a sort of release, even though it is a deep pain of a different kind. 

I chickened out, thank God, and didn’t take it to far. I listened to my inner voice of truth telling me to stop this destruction, that it will not really solve any of my problems. I still have the scar today that reminds me of my deep deep pain, yes, but it also reminds me of my strength. It reminds me that I have been through so much, but I have made it so far. 

I told my therapist in a session that next week of how low things had gotten, and she, by law had to tell my parents. Opps, I thought, now I really blew it. They would probably freak. My mom’s reaction, even today, after all these many years later, still makes me so angry that It is hard for me to recall. Because she was so enmeshed in her world of denial, mom was angry with me for days and was disgusted that “I could ever do something so disrespectful to myself”. She hardly talked to me for a few days she was so upset about it. I remember feeling so flawed and ruined and misunderstood that it just made my depression worse. I like to think that maybe she was just so scared of how bad things had gotten, but I will never know. We have never spoke of it again after that week. 

Severe depression feels like you are swimming under water. Things start to move more slowly, like in slow motion, and you feel heavy and isolated. You look around at the others next to you through murky lenses, and wish that you didn’t feel so distant, even though they are standing right next to you. You get frustrated both because you don’t have the energy to try to clearly express how you feel, and because no matter what, they just never seem to see you or really “get” you. You are so close, yet so far away, and so stuck.

You look up, and see the sun shining, but you can’t feel it because you are hidden beneath the cloudy blueness. You hope you can reach it some day. You wish you had the energy to reach for it, but you are just so tired and you don’t know how. Now you have stopped swimming, and you don’t know what to do, or where to go, because the pain of keeping up the pace of your swim hurt almost as much as where you are now.

So, you think, maybe it’ll just be better if I just lie down here…it will make it easier for those I love who worry about me and easier for me…because it is just to hard to keep it all going. 

I think for many who struggle with mental illness/and or addiction, the pressure of living the way one is “supposed” to can sometimes become just to much. The race of always staying above the water, and stay in control, becomes suddenly just to exhausting. You start to lose the will to even care.

It takes a tremendous amount of will power, self discipline, emotional, physical, spiritual, and mental strength to fight these battles every day. Many lack one or many of those strengths, for many different reasons. Many, like my mom, are just not cut out for the long haul battle. It takes constant honesty, self-reflection, and commitment to overcome the obstacles these diseases bring. Many can maintain that level of balance and health, through determination, practiced faith, and accountability. But, it takes a lot more understanding and awareness from us and the world. 

And until we get there as a society, there will sadly be more lives who will burn out not so brightly. And we will be left striving to focus on the light that they emanated, instead of the darkness that overtook them. 

Letting go…

Lately I have been reflecting on when my mom last admitted she was powerless over her addictions, which was a few months before she landed in permanent nursing home care. This was in 2009. By then, she had 24 hour at home care for 3 years already. She called me late one night, about 10:30, which she often did when she was drunk.

She started with the usual niceties and small talk, asking about our day and the kids. Then, I gently confronted her, as I often did when she was in that state. She almost always denied that she was drinking, and would get defensive and angry, sometimes causing her to hang up on me.

For some reason, this phone call was different. Perhaps I was more gentle in my approach than usual (it was always a struggle), or maybe she had just finally had enough with it all. She began telling how she wanted to be done with this life, and how painful it all was. My dad had left, not able to cope with her addictive behaviors and the constant lies and game playing.

She had been dealing with hydrocephalus, memory loss, and various aches and pains related to her chemical abuse for a few years . In her stupor, she finally confessed that she was in real big trouble this time, “I think I am in big trouble with it, this time. I think I may need to do something about it. I might need help again.” It was one of the only times in 20 years that I heard her so clearly admit that she needed real help. The other times were when she was about to go into rehab, in rehab, or after she had just gotten out of rehab.

Looking back, I know I did all that I was expected to do, and more. Sometimes, you can do everything in your power to help those in trouble, and they still won’t choose it.

My mom was and is one of the best people I will ever know. She is smart, sweet, kind, funny, beautiful, charismatic, affectionate, and loving. The one thing she could never be enough was honest with herself. She had deep fears and insecurities that she tightly held on to, and probably will until the very end.

I suppose that is why I have such strong convictions, and why I have deeply committed myself to always be honest about who I am, and to keep striving to do so in my life. It isn’t always easy. Addictions can have all shapes and sizes, and almost always start innocently enough.

The key, I have found, is to try to always be mindful of keeping a healthy balance of everything good in my life. If a certain activity or situation starts to consume me or I am obsessing over, then I need to back off a little, and give my time to other things. With prayer, and the help of those around me, I can then push through those heavy feelings of loss, dread and stress. I always take it “one day at a time”, and try to never listen to the negative self talk that creeps into my head from time to time.

I get stuck sometimes…in my anger, in my resentment, in the sadness of it all. Dealing with dementia in a loved one is hard, yet it is harder still, when THEY DID IT TO THEMSELVES.

I am reading the book “Codependent No More”. It’s a great one (one of the BEST) for knowing your boundaries of loving those with addictions and those with dysfunctional patterns of behavior. It is basically about how to take responsibility for your own reactions to people and situations. It’s about knowing that it’s OK to let go of the guilt and anger of those who consistently try to drag you into their drama and patterns of dysfunction.

It’s important to try to not let their drama and chaos rob you of your peace and joy. It is about living in the moment, and attempting to detach from the tendencies to control people and situations, which were habits learned after years of living in uncontrollable situations.

I have had this blog for about 4 years now, and I feel like I’m almost ready to let it go. I started it as a way to help myself, and hopefully I helped a few people. I know what I need to do to be healthy and I have lots of tools to help me create the happiness I have always yearned for in my family. I will continue to rely on my deep faith to help me get there.

God bless

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I’m sorry

I’m sorry mom.

I don’t always return
the many calls
you make when
pacing those halls

I should reassure you
that I’m OK,

You’re worried
& not sure
of where I am,
or if I’ve found my way…

You’re surprised
I’m now married,

“You better not be!”,
you exclaim on
our machine

All those 15 years
just suddenly vanished
like the breeze…

I’m sorry,
It just hurts so much
to hear you lost
and wanting out.

It may be a selfish reason,
and feels a bit like
a cop out…

I pray your angels
keep you
close
& free of fear,
at least Until
the day
we can be near…