1.20.2014

Monday Memories With My Mom...RETURNS!?

The Adventures of Caring for a Mom With Alzheimer's Disease
 It's been awhile... Truth is, this past couple of months have definitely had some ups and downs.  Perhaps more downs than ups when it comes to my mom's health and the quality of care being given to her.  As a result, my energy for reliving them through this blog is, to be honest, it's sometimes the last thing I want to do.  Obviously, recounting happy experiences is a lot more fun!!  
       The good news is that the kindness continues to come from people and places you least expect it.  The emails I have received from several people I had no idea were following along and who understand and share my concerns -- well those surprise connections and words of encouragement help make it all worthwhile! 
     I also realize I don't have to hit  "publish" on all of these Monday Memories.  I chose to do so awhile back to raise awareness from the standpoint of a family caregiver who happens to have three busy kids.  I have been rethinking whether or not sharing all of this is what I want to do.  For now, I have decided to continue...  So without further ado, here it goes.  (If you want a refresher on where we left off, you can do so here.)
 
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    This dates back to the first few weeks of November, 2013.  I was able to getaway for a few days, but before I did I went for a quick check on my mom to make sure she had everything she needed before I left.
     What I discovered was, portioning out snacks and "hiding" them away in my mom's cupboards is probably not going to work.  Every last snack was gone!  You may recall, I was only doing this out of concern that she was not getting escorted or eating her meals properly.  So, at least I know she got some food even if it was snacks!
     I also was excited to find her some new Croc shoes.  She loves the pink ones a little too much!  They are very worn, but still okay for indoor use.  Basically her Crocs have become a glorified slipper at this point.  I found her some nice beige neutral shoes that I thought would be great for Fall and she seemed pretty excited about that.  But, like most things, she still wants the pink pair and, depending on the day, may or may not willingly to wear the newer ones.
     Although my previous post indicated the possibility that my mom's new private aide had started working with her, I soon realized that was not yet the case.

I got her clothes better organized for the weather...pants in one closet and shirts and sweaters in the other.  Also moved the short sleeved clothes to the other room.
 
 
The last several visits were still going like this...  A very tired mom!
 
 
    I returned from my trip feeling more energized and I was (or so I thought) ready to tackle another sleepover on November 12th to again get a better feel how things were going with my mom and her care.  There was to be a Meet and Greet type introductory meeting the next day for the residents and their families.  They were officially introducing Nicole, the new on site Area Agency on Aging representative whom I had already been working with for about six weeks prior.  (You can read more about her and my previous meeting here.
     Not too long after my arrival, I was happy to see my mom was escorted downstairs for dinner.  I also met a new resident, Barbara, who was seated at my mom's table.  Barbara knows what is going on and was able to tell me that my mom barely eats her salad and gave me some other insights which is always nice.  We waited and nobody came to escort my mom back to her apartment.  It's been months since I've seen anyone do that on a regular basis, but they do offer the service and used to provide it during the first year she lived there.

 
    Back in her room I waited to see what kind of care was going to be given.  Around 8:30 pm an aide came and gave my mom her medication.  Then, about 9:15 pm an aide came to give my mom her "PM care".  I listened in the other bedroom.  The aide did not know I was there.  The aide wanted to give my mom a shower.  My mom kept asking why and was not very cooperative.  After several minutes, I intervened and told my mom she should take a shower.  My mom easily gave in.  I also told the aide that showers were supposed to be given in the mornings for a number of reasons.  Nights and evenings are not the best time of day for my mom due to sundowning.   By 9:45 pm my mom's shower was given and she had her pajamas on for bed.  In my view, the aides need to approach with an attitude of "wanting to help" rather than an "I hope she doesn't cooperate so I don't have to do it" approach. 
     Then, as I kept patiently waiting, and waiting...it became 12:30 am.  My mom was still on the couch watching TV.  I was in the other bedroom.  We have requested that my mom go to bed in the 11-11:30 pm range.  Next thing I knew it was 1:30 am and still no signs of anyone coming in.  By then my mom was up and about and busily spent the rest of the night "rummaging" through things.  TV on, all lights on...  She was busy!  
 
     By 4 am or so (I had dozed off myself!), I couldn't take it anymore!  Clearly, my mom was never going to bed on her own, nor was anyone ever going to come to prompt and help her to do so.  The realization that this has likely has been my mom's routine for months was a bit overwhelming to me, and no wonder she sleeps all day!  I put her to bed myself at that point.
     Then, in what seemed like a blink of an eye, an aide came in at 6:30 am the next morning and I could hear her telling my mom to get dressed.  (I recognized her voice and was quite sure I knew who it was.)  My mom kept asking "why".  The aide kept repeating "C'mon Mary"...  My mom said she was tired and two minutes later the aide said "Bye".  (She did not know I was listening in the other room.)  She gave up on my mom without really trying and more importantly not even realizing that her own coworkers never did the job they were supposed to by getting my mom to bed the night before.  It was still dark out and my mom had barely slept.  At 7:15 am another aide came in and gave my mom her medication in bed.  At 8:20 am her weekly laundry was picked up.
      The "Meet and Greet" meeting I had originally came for was to start at 9:00 am.  I decided to sneak out and let my mom sleep -- all the while I was more and more uncomfortable with what I had learned from my visit thus far.  The dining room was filled with mostly residents and only a handful of family members.  There was to be another meeting session later in the day, but I doubt that one had much of a different turnout.  I was a bit disappointed that the meeting did not have much substance to it and was filled with mostly information that I already knew.  I was so exhausted and felt a bit gypped that my efforts to be there appeared unnecessary.  However, towards the end introductions were given -- this is "so and so", the Director of Quality Assurance of the Med Team, and this is "so and so", the supervisor of.....  Well, you can bet I was jotting those names down pretty quickly.  Even though I had already spoken to my share of "managers" and "supervisors", I had never met or heard about their Director of Quality Assurance.  At the end of the meeting, I spoke with the Agency on Aging care manager and briefly filled her in on my night with my mom.  She insisted I speak right then with the Quality Assurance Director and after waiting my turn I did.  She was extremely nice and compassionate.  I felt I was able to convey the situation and problems I've had in a nutshell.  We agreed we would be in touch and that she would get with her staff immediately.
     Many phone calls and updates and less than a week later, my mom finally had the private aide that I was promised.  Although at this point I had not yet met her, I was happy to see her looking more relaxed and well cared for on my next visit...

 
 
 


 

4 comments:

Kim said...

I'm happy to see a new post for you. But sad that you have to schedule these overnight visits to find out what is really happening.
I can't imagine trying to get an Alzheimer's patient to cooperate for a shower at 9:30pm. That is typically their least cooperative time. Sigh......
I just keep thinking how lucky she is to have an advocate for her. There are so many who don't. I am seeing "lots" of things during Mom's extended hospital stay. Wow!

Shirley said...

Good Morning, Welcome back. I was wondering how things were going for your mother. It is challenging I know for you, your family, and your mom. Being a caregiver is very trying at times, I know from experience with be one myself. Just keep on those who are suppose to take care of her, because some doesn't do what they are suppose to. Many Hugs and Prayers from Your Missouri Friend.

Julia said...

Hi Cindy, what a remarkable job you are doing on finding out exactly what is going on with your mom's quality or lack of quality care. It must be so stressful to say the least. I hope that more positive results will come out of this new attempt to get better care.
Some people are such slackers and only care for the pay cheque they bring home on payday.

You can see yourself the difference good care makes. Let's hope that it will bring positive change for your mom and other residents of this special care place.
Hugs,
JB

Christine Baker said...

Such a wonderful yet taxing joy caring for our lovedones, isn't it? I care for my 86 year old aunt who lives at home and she got a bad bug at the end of November and we unfortunately couldn't be there all day with her. We searched around the internet and got her a safeinhome system (www.safeinhome.com) so she can enjoy her independence and we can see if she is OK right from our phones. Such a god-send to see that she is doing well wherever we are..really gives me peace of mind and lowers my stress levels when I can't be there with her.