Tuesday, August 01, 2006

Alz assist

I know what you're saying, not another Dr. A Alz posting. Can't he just let this go? Well, here's what happened. Yesterday, I got a call from our local Alz Association support group. They were looking for a speaker for their August meeting. So, I said, "Sure, Why not."

It's been at least 2-3 years since I gave a community talk on Alz. Last night, I was trying to find my powerpoint presentation on my trusty Mac. I figured that most if not all of the scientific stuff was still current. And, I knew that a few of my patients and/or their families would be there. So, I would ask their permission beforehand if I could share some of their story with the larger group. I did not want to break any kind of confidentiality.

Then, I thought, what about my new blog friends? This is where I'm asking for your assistance. Here's the question: For those of you out there who have experienced Alz disease, what would you want to tell this support group? Keep in mind, these are people who are going through or who will go through what you have.

If you would rather e-mail than comment here, please feel free to do so. I thank you, and I know this support group will appreciate any insight from those who have been through this tragic disease.


ladybug said...

do i count? i havent had a family member have Alz. wait, yes do --- my aunt.

anyway, not directly a family member... but i was an activities programmer and unit secretary on a moderate-stage dementia unit for about 2 years, and part of my GNA training was on our latest-stage Alz unit.

i am headed out the door to class, but i'd love to share some... :)

Cathy said...

Dr. A., My aid will be in any minute but as soon as she leaves I will answer this.

Cathy said...

I sent email Dr. A.

Fat Doctor said...

This will be long, but therapeutic for me. Feel free to use any of this in your presentation. G-dad is long gone now...

Granddad had Alz. We ignored the worsening dementia until he came over to the house one Christmas Eve, became belligerant, hit my mother and went into my sister's closet to put on one of her blouses. He then insisted we drive him home. Sister decided to just let the blouse go home with him.

Over the next few weeks, he became worse and was kicked out of his senior independent living facility because he was touching female staff inappropriately. This, from a man who was the UTMOST gentleman before the horror of Alz robbed him of his senses.

I was called by security at a local mall several times to pick him up. He couldn't find his car despite their driving him around the mall parking lots for hours each time.

At one point, the family decided to take his car, after his PCP called and told us he though G-dad shouldn't be driving. I was nominated to drive his car to my house while another family member distracted him.

Two hours later, the police showed up at my door. He had reported his car stolen and named me as a likely suspect. Odd that this man who was clearly losing it could think that clearly. I think the police had every intention of arresting me for grand theft auto, but I talked my way out of that. We grudgingly took the car back to him. The next day, we met with a lawyer. My mom had to appear in court, with all of her children there to support her, while she petitioned a judge to make her father-in-law her ward.

The judge questioned G-dad and agreed he was not quite with it, but she committed him to an evaluation in a local psych hospital before making her decision. From there, he moved into a nursing facility, then another, and the illness progressed to the point that he died, about 8 years after that initial horrible Christmas Eve.

I feel so bad about all of this now that I am adult. There was no explaining anything to him, despite our best efforts to tell him why we were ruining his life.

Sorry to take up so much room. I feel better now. Thanks.

Sarebear said...

My husband's grandma died about 4-5 years ago of Alz.

She was diagnosed about 4 months after her husband was diagnosed with terminal lung cancer. He died several months after her diagnosis, but for as long as he could, which wasn't long after the diagnosis, he took care of HER, as sick as he was.

We visited her at several different stages; after a certain point, we didn't visit, which may sound cruel, but the reason will become apparent.

One time we visited her, and she knew we were her grandkids, but not which of her kids we belonged to. And she forgot our names and called us by my husband's brother and his wife's names. Anyway, we were having a nice visit, when she became extremely (and especially extremely uncharacteristically) angry and extremely agitated over something SHE had said/done, but she blamed her caretaker, her oldest daughter, for it. I understood, of course, that she didn't know what she was doing and such, and had no blame or bad feelings at all, even though she was in my face about it . . . thing is, we had our 3-4 year old daughter with us, and she had no way of understanding why Grandma was like that.

It hurt, but we did not visit again in the 18 months following before she passed away. We had no access to a sitter, and we couldn't let our daughter be hurt by Grandma's unpredictable emotional states.

Maybe it sounds cruel that we didn't visit, but I know for our daughter, who was later diagnosed with high-functioning autism, that we did the right thing. She couldn't cope with something being so different, and so upsetting, from the usual, especially from a loved one. I didn't know WHY at the time, but I knew my daughter. Even though she was about 5 1/2 when Grandma died, and some might think she'd be old enough to understnad some . . . I feel guilty, but then again I don't. But then I do.

Sara F.

Sarebear said...

I think that last sentence pretty much sums it up . . .

Cathy said...

Sarebear, I think you did probably the only thing you could have done.

I think it is very important for everyone to realize that when someone has alzheimer's we cannot in any way expect them to behave as their former self. To me thats an imporatnt message to get across to families. Explain what happens in the brain during the course of Alz..Help families understand that they (patients) have no control over how they behave and that yes, there will be behavior that will be shocking. Help them be prepared for those changes.

I once heard a worker in a nursing home (a CNA) who was having some sort of problem with a patient. This patient was not in the Alz. ward but was just on the regular floor. I was sitting outside the lunch room when this worker was trying to get this pt. seated. She had ahold of her shoulder's and just slammed her down in the chair so hard I thought the chair was going to break. Then, I heard her say to her.."You better stop acting like this or your ass is going to the Alz. ward with all the other crazies." Well that was more than enough for me to get up and walk down to the administrators office and immediately report this girl. First for abuse, then for threatening, and then for referring to all alz. patients as crazy! This girl was sent home immediately and fired. But, what if I hadn't heard her and how many times before had she done this? How many other's are out there doing this? I was there evaluating that nursing home to see if I might want my mom to be there. NO! I did not want my mom there.

I know none of this is what I emailed you but I get passionate about this topic.

FD, I'm sorry you had to experience this firsthand. I also was the one in our family who had to take my mom's car keys away. I know what it is like being in that position.

Anyway Dr. A....Families need to be somewhat prepared for what lays ahead. Could you record this meeting and then play it for us on audio player? Just a thought I had.

Sarebear said...

Yeah, she was also swearing a blue streak which is something she NEVER EVER would have done.

It broke my heart, though, wondering if somewhere in there her spirit knew she was behaving in ways she wouldn't choose. I hope and pray not, that it really does seem like they don't know.

And thanks.