An Open Letter To My Mother’s Hospital and Rehab

My 89-year-old mother had a stroke in May 2014.  She was taken to your hospital and received treatment.  She had been on the floor of her apartment for two days and was severely dehydrated.  The CT Scan showed a stroke in two lobes.  She couldn’t talk or move her right side.  She was scared.

I called the ER as soon as I found out.  Everyone wanted to know if she had dementia or Alzheimer’s.  I repeated so many times that my mother had been independent, vibrant and very social.  But still you wanted to know when her dementia had started. 

You were very surprised that within 24 hours, she had started to regain use of her right side.  When I arrived, you were surprised she was making such progress.  She still couldn’t speak well or make sentences.  She was still scared.  She tried to tell me how loud it was in her head.  You still asked me when she first showed signs of dementia.  You rolled your eyes when I told you she was vibrant and independent.

My Mother was inpatient for five days where the fear held her.  She tried to speak to me.  I held her hand.  She couldn’t walk, talk, and feed herself.  She was scared.  And still I was asked when the dementia had first started.

We had a case meeting and you said she would benefit from rehab.  I knew this.  Everyone, being professional colleagues and friends, said that the hospital rehab was the best.  If we could get her in, it would be the most beneficial.  I did everything I could to facilitate the process.  I knew rehab was the only possibility for recovery.

We got accepted to the hospital rehab and I felt very grateful.  I thought, here she will be able to gain some of herself back.  They won’t treat her as someone who has “always had dementia.”  They will understand her stroke and help her to make sense of it.  They will help her start to come back.

If only the above had happened.  From the onset because my mother’s brain injury caused cognitive deficits, she was labeled as now having severe dementia.  I was told repeatedly she was not cooperating.  She would not do her hour-long sessions of PT, OT and speech.  She was tired.  She was too weak.  She wasn’t cooperating.  I was told Medicare wouldn’t keep her if she won’t cooperate.  We are being nice and splitting up the hour and still she is tired.  What do want us to do, she has dementia.

I want you to look at my mother and say, here is an 89 yr old woman who was independent and is now scared.  Have you ever been scared?  Do remember what it is like? I want you to accept she is tired as after she had a major stroke.  I want you to stop telling me she will never recover because you are using inappropriate assessment tools. I want you to understand the stroke caused my mother’s senses to be heightened and that scares her. I want you to understand my mother spent two days on the floor and is traumatized.  I want you to be compassionate and non judgmental.  I want you to not worry my mother will somehow skew your overall institutional results. And finally, I want you to be just the slightest creatively kind in how you approach my mother.

You never tried to find my mother.  You never tried to know how it was for her.  As with me, you did not communicate. You forgot the importance of family.  You did not show up for the doctor’s conference and then took five days to call me.  You said she would never get better.  She has dementia.  She is a fall risk.  She won’t regain use of much.  She is stubborn and not cooperating.  Medicare won’t pay.  I need to discharge her.  We will send her to the medical center at her community, El Castillo and order home care services.  She won’t get better, maybe you should move her closer to you, since her dementia will progress.

You sounded so knowledgeable and professional and I knew not to believe you. 

It is August and we approach my mother’s 90th birthday.  She has fought back through the noise in her head as she describes it.  She has refused some services and righted the ship.  Her strong Irish inner core continues to fight the damage and find ways to heal.  I can’t say it has been pretty or easy.  She is not always the same person.  Her words remain jumbled and sentences hard. She swears more than I heard in my entire life. But she communicates.  She is recovering.

I look back at her outbursts, tantrums and episodes of extended swearing and now see a woman trying to get the world to hear and understand her.  I see now, there was an intuitive sense of people and events she knew were insincere and uninterested in her recovery. 

Because you labeled her with dementia, I still have to fight.  She almost got denied acceptance to Assisted Living because of the label.  No, I was not going to put her in the locked unit.  My mother is in Assisted Living now, and doing well, thank you.  I fought for her and she fought for herself and the woman I have known all my life has come back.  My mother was always there and you had an opportunity to excel but chose the path of professional expediency.  Shame on you.