Monday Memories With My Mom

The Adventures of Caring for a Mom With Alzheimer's Disease
     I'm determined to not let these posts slip away again like I did during the holidays this past year....so I'm a day late which is better than weeks late, right!?
     Sadly, my news is not great.  After last week's post about my mom's second ER visit and head injury I was hoping we were done.  We were not.

Scenes From The ER
     Ironically, last Monday (after my post) I received another emergency call from the Med Team around 5:30 pm.  I was shocked...  I had been in communication with the Med Team staff throughout the day to put in place a home health nurse and some physical therapy for my mom. So, when I saw they were calling again I was really hoping it was a return phone call.  Instead, I was told that when they went to get my mom for dinner she was on the floor and then I was told she was "limp" when they picked her up.  They said they had to send her to the ER.  When I asked, they said they did not think she cut her head again. Unfortunately, the person on the phone is not usually right there with my mom and not always the staff member who found her.  So, after being in the ER on Friday, we were back again on Monday -- except I asked then to take her to a different hospital -- the one from recent ER trip #1.  This time, I called my husband and asked him to meet me at the hospital on his way home from work.  I just can't keep doing this alone.  He was there a couple minutes before me.  The ER was crazy busy.  More than any other time I've been there.  My mom seemed okay and was on a gurney in the hallway of the ER...with many others.  Not a pleasant experience, nowhere to really stand staff all over running back and forth.  A very nice young doctor came to evaluate my mom (with two interns).  I gave him the latest and my mom's medical history.  We waited and waited.  Another CT scan was done.  Some blood work was ordered.  My brother stopped in.  My husband and I went for a quick dinner.  They started an IV (which I quickly realized was crimped and had to have it fixed).  Me and my brother waited and waited, and finally got in an exam room.  Tested for UTI with negative results.  

Our Part of the Hallway
     The doctor expressed concern with my mom's decline and recent falls.  He strongly suggested she be in a nursing home setting.  I am not sure he understood that my mom was getting a lot of extra care in her current senior living situation.  I did not have the energy to break it down for him.  My brother agreed about getting her in a nursing home.  I cried.  The doctor sent in a social worker with brochures.  I cried.  He said he had no reason to admit her to the hospital.  He conferenced with another doctor by phone.  He said he could keep her overnight if it helped (clearly we were not going to find a nursing home at 12 am?).      No, no, no, and no!  This doctor was very nice.  He went out of his way.  He showed me the CT scan of my mom's brain as compared to a "normal" brain.  It is clear a lot is not working.  None of this is new information to me.  The only thing new is three falls -- one of which resulted in an injury.  Two of the falls, I probably would have picked her up, put her in a chair, got her some water, got her vitals checked and told her to make sure she uses her walker!

My Mom Liked the Sign "Call Don't Fall"
  My brother helped get my mom back to her apartment.  I decided to spend the night, terrified of another fall.  After watching Jimmy Fallon, my mom went to bed and stayed in bed. By 2am she was probably asleep.  I set my alarm for every hour through the night to make sure she was still in bed.  
Laughing Away at Jimmy Fallon
      At 8am Sheri came.  I filled her in while my mom was still sleeping.  I wanted her to sleep until at least 9 am which she did.  Sheri then got her ready for the day.  She had breakfast in her apartment.  She was tired but seemed okay.  I made lots of phone calls.  My concern was how am I going to leave her alone and not worry about another fall???  I can't afford and insurance does not cover round the clock care just because my mom fell.

Found Out Sheri Brings My Mom Treats!!!

White I Was There I Washed Muffin Again

I Went Back and Put Signs/Reminders All Over the Apartment

I Also Turned The Ringer Off on Her Phone to Reduce Her Fall Risk
(She rushes to the Phone Even When She is Across the Apartment)

Kristin Did Her Homework and Grandma's Nails

Are We at a Crossroad????
     Eventually, I went home, got a decent night sleep, and quickly realized that no matter what the doctor said, or what my brother thinks, the reality is that I cannot afford to privately pay for nursing home care for my mom (it's a minimum of $6,000/month).  I also do not think she requires it at the moment.  I know my mom and spend more time with her than the ER doctor or anyone else.  I am quickly finding that I may be in a situation of waiting for something worse to happen before she can get more help.  "The system" stinks.  I had a friend sit with my mom for two afternoons for my peace of mind.  Kristin and I stayed with her for four hours Saturday afternoon.  Sheri said she would sit with my mom, but when I checked with her supervisor I found out she is not allowed in the building unless she is under contract during working hours. There's a home health nurse checking in on my mom for a couple of visits, she is back in physical therapy three days a week, her staples will be removed soon, and I am trying not to worry.  It wasn't long before I realized I can't be there watching over my mom 24/7 to make sure she doesn't get hurt.  I am also realizing that I can't live from one emergency phone call to the next wondering and waiting, watching the clock when the phone rings.
     Meanwhile, that's exactly what I'm doing.  That and praying my mom isn't more seriously hurt while I wait, worry and wonder if we are at a crossroad...


Kim said...

Oh Cindy,
This is all so familiar to me :( Mom spent several days on a stretcher in the hallways of the ER during her last visit to the hospital. And her doctor also showed me comparison brain scans. I cried when I saw hers, compared to a normal brain.
I wish there was some way I could help you but all I can do is offer you support. I have walked your path and it isn't easy but we just do the best we can.

kelley said...

I am right there with you Cindy, the hardest walk I've ever known...my Mom had to go to skilled nursing for a broken knee/Alz and won't be able to return home...it is so heart breaking...

We are in the process of getting her on to Medicaid which will pay for her stay...along with her money from Social Security and retirement...you have to spend down her assets to $1500...

Wishing your Mom the best...and no more falls...those trips to the ER are awful for all of us...

Arlene - Caregiver ordinaire said...

I'm checking in after a few weeks and I'm so sorry to hear that your Mom has been falling. What a heartbreaking struggle. I do know what it's like to wait for the other shoe to drop and how scary the phone calls can be.

Recently, my Mom got approved for 'supervisory protective' care. What a Godsend! I don't know if there is something like that there or not. The supervisory care is in addition to the Aide hours. It takes forever to get help. And you are right. The system is totally broken when you have to wait until something drastic happens to get help.

A temporary route: Our dept of aging here offered that they have volunteers to sit with elderly folks. I don't know how dependable that is, but it's a thought.

I'm thinking of you and hoping the dr appointments will shed some light for you. You've made GREAT decisions all along, you've had a WONDERFUL attitude and you are an INCREDIBLE daughter!
Don't forget...
Sending thoughts and prayers to you and your family, Arlene

yaya said...

I'm so sorry your Mom has taken another fall, but I'm glad she didn't get a fracture. I can't imagine the stress and worry you're going through. You have her best interest at heart and I'm sure you will know when or if the time for additional care will be needed. All I can offer is my support and prayers for you and your Mom and family.

Jennifer said...

Sheri sounds downtime fabulous. Hopefully this is the last fall for awhile.

And seriously, $6K/month? That is insanity.