Wednesday, April 16, 2014

Down the Rabbit Hole with Mom

Would you believe I haven’t even had my computer on for 3-4 days?  Here’s what’s been going on…  A couple weeks ago I got a call from the Assisted Living Facility where Mom is living.  She had taken to wandering into other people’s rooms. This was not good.  The rooms were in the Independent Living side of the facility and those folks were none too happy to have some stranger looking in on their bedroom!  Something had to be done.
imageFor the first 3 years it was great that the place was so big because she likes to walk, and walk, and walk.  And, she was free to walk outside as well – the property was beautiful and there was a sidewalk all the way around the building.  When the weather was not good for walking outside, she had lots of hallways to wander inside.  Her apartment was on the 4th floor at the end of a long hallway.  She loved the view from her balcony overlooking a quiet tree-filled section of the property, facing the sunset.  And she liked the tranquility at the end of the hall.
But, for about the past 6 months she keeps saying she doesn’t know where her room is, and she continues to walk aimlessly.  We’ve been worried that, at some point, she might wander off the property and, with a busy street close by – that could be dangerous. 
I didn’t want to admit it, but her Alzheimer’s had progressed to the point where she could no longer function where she was.  God!  I HATE this disease!  My beautiful mother, who was a CPA for most of her working life, then ran a computer training center with me for 14 years (she was the Excel expert,) then retired and traveled the world scuba diving and hiking, could now be found curled up on a hallway bench, asleep, in an assisted living facility.
Luckily I got the call when we were still in Florida and planning one last visit to our Fort Lauderdale home base.  As soon as we got here, I hit the ground running and met with staff at her current facility.  They made it clear that something had to be done, they couldn’t have her walking into other peoples’ rooms!  They suggested a private aide to be with Mom every day … I acted on that option for a couple of days, researching aides and calling friends who I thought may be able to help.  But, what were they to do?  Follow her around all day and just see that she didn’t open any doors that weren’t hers?  It became clear to me that this facility was just too big for her anymore.  And, the smaller facility (on the same property) was too confining.  If I moved her there, she would still be allowed to go outside, and she would probably wander back to the original facility – so I would still need to hire an aide for at least every afternoon.  I wanted to find a facility that was “just right.”
I have a lot of friends who also take care of parents with dementia and I surveyed everyone.  Dee M told me about a place in Pompano (quite close) that is one floor and the rooms are built around a courtyard.  Sounds great!  I visited and met with staff and discussed all the details, I hung out and watched the other residents at lunch and other activities, I looked at the rooms, and I was impressed with everything I saw and heard.  I also visited other facilities but I kept coming back to “Grand Court.”  They said that I could use their ‘respite’ program to come stay there for a couple days before making the commitment to move her.  Great!  So I went and gathered Mom, told her to grab her pillow and a change of clothes, we were going for a “Sleep Away” for the weekend!
I really want to know everything, so I stayed for 2 nights, sleeping in the bed with her.  I didn’t get much sleep, but I’m confident I understand how the place works.  I know what lights come on at night, how noisy it is, how the air conditioning works, how they administer her medications, and how they serve breakfast, lunch and dinner.  I picked a room that was just around the corner from the main lobby, and had a glass sliding door out to the courtyard.  I was thrilled the first time Mom left the room by herself and came back without help just a few minutes later.  Actually, she did that several times.  It seemed like she was testing herself!  She was excited that she had a room and knew where it was!
I never told her that she was moving, but we just started making this room be home.  After my 2-day test period, I left for the day and my friend Dee T. visited her.  They walked around the courtyard, then had lunch, and visited the craft room.  Dee sent me a text, “Marilyn says, ‘I’m so glad I decided to move to this place.’”  Tears of Joy!  That was it, the decision was made.  Here’s a picture of Mom walking in her new courtyard:
I needed, and used, the help and support of Jim and several other friends this week.  I’ve been leaning hard on my friends.  Sorry guys, if I talked your ears off about every minute detail of my Mom’s life.  Thanks so much for listening, and helping with the move.  For others of you out there dealing with this insidious disease, please read the book, Creating Moments of Joy.  It’s probably the 7th or 8th Alzheimer’s book I’ve read, but it’s the first one to get inside their confused brains, deliver some real understanding, and offer concrete ideas for improving their quality of life.  I’m now reading “While I still Can” written by a current Alzheimer’s patient with early onset of the disease.  The author, Rick Phelps, also set up a Facebook Group that is very helpful. It is called Memory People.
Jim helped me pick out a nice all-in-one touchscreen computer to put in Mom’s room.  No, she won’t be able to use it – she can’t even use a TV anymore – but, it’s a great way to let other people play her travel videos for her, play music CDs or use Pandora (the Frank Sinatra channel is great) and I plan to use Google+ Hangouts or maybe Skype to video call with Mom over the summer.  It’s running Windows 8.1 and Jim set it up so it comes right on to the tiled Start screen and he set up just 4 tiles: Videos, Pictures, Music, and Call Chris. 

I copied several of her videos onto the computer’s hard drive.  So, all an aide needs to is turn it on, tap Videos and choose one: Borneo, China, Red Sea, Turkey, Australia, Jordan and Petra, Vanuatu, etc. All these are Mom’s videos of her travels, you can see some of them on her website, Marilyns Planet.  Lots of underwater video, but lots of regular land travel video also.  She watches them without recognizing anything, but she sees herself, and hears her voice, and that keeps her pretty interested.  I love it.  I wonder what she would have thought, back when she was shooting the video, if she knew those films would be the only remnant of her memory.

Update 1 Week Later: I knew it was too good to be true.  You expect an Alzheimer's patient to have a tough time with any move.  It was amazing that Mom adjusted so quickly ... she even told me that "The first time I saw this (referring to the courtyard) I knew I wanted to live here."    When I had to leave, she just sat on her bed, waved her hand, and said G'Bye.
Well, a few days later when we visited, she had emptied everything out of the drawers and put them in a duffel bag - she wanted "Outa Here"  This is very common, but it's no fun.  We asked her why the duffel bag was packed, but she just giggled and said "I don't know."  So we put everything back and took the duffel away.
The next day, I took advantage of an absolutely gorgeous day here in Fort Lauderdale and took Mom to the beach after her Doctor appt. "We went to the doctor?" It was a great afternoon, so it really distressed me that she freaked out when I took her home and then had to leave. "What do you mean you're leaving? I thought we were going to be together? Where are you going? Can't I come with you? What am I supposed to do without you?" God I HATE Alzheimers.


marymay said...

Dear Chris, I've been involved in this journey for several years and admire how you've done what needed to be done, all the while preserving your mom's dignity. I hope that she can adjust to this new facility so that you can rest easier. They say, "The victim has the disease but the family suffers with it." I pray for all of you. Love, MaryMay, one of your dive buddies

Paul and Marti Dahl said...

I know how hard this is, I went through this with my mom, too. You've done so well to love and support your mom.

My wife, Marti, is a retired nursing home administrator who has dealt with this issue many times with families.

Please feel free to contact her via our email for our phone number. You can call her and use her knowledge and experience any time. She's always glad to help.

rsanity.dahl-at-gmail-dot-com said...

How lucky your Mom is to have such a caring and devoted daughter.

Marilyn said...

Your a very SPECIAL daughter. This is such an emotional road to travel. You have done an awesome job of caring for your Mom.

Anonymous said...

Two things that are devastating. Alzheimers and stroke. They are so depilating. We pray for your strength and wisdom. My wife Marilou attended your session at FMCA in Gillette.
Don and Marilou Hicks

Unknown said...

Bless you both! You are in my thoughts and prayers.