Tax Man

Yesterday, the reason for packing her bags is to avoid the "tax man". She said she thought "they" are going to come after her. I know this isn't really funny. It must be horrible to feel the government is after you and you have no idea what to do so you have to run and "catch a train". It was a pretty day so I suggested a walk instead (and of course I assured her that we will make sure everything is taken care of). She seemed fine with that as an alternative. Crisis averted-at least for the moment.

So in light of all of that....

http://video.search.yahoo.com/search/video?p=beatles+taxman

Another temporary distraction:

Is it ironic that Alma likes the movie, 50 First Dates with Adam Sandler and Drew Barrymore? Overall, I think it's hilarious at how funny she thinks it is when they are in the brain injury clinic and the patients are having a hard time with memory. Maybe she relates to that one some level.

I am so grateful that putting a movie like that on still works for her, but I have to sit in the room with her and that is hard for me during the day (at least it's not Dr. Phil-I still don't get him). It's the only way she will just chill out for a bit; forget about packing her bags, running from the government or feeling down about all that has been taken from her. Prior to the movie, we went for a walk and she almost walked right out in front of a car on one of the busy cross streets. I had fallen behind because my silly dogs kept stopping (well, she's also way faster than me). I yelled out her name to stop her, the car slammed on their brakes and swerved and she stepped back. As soon as we crossed the road together, making sure to look both ways (something I probably did not need to point out so adamantly), she began to speed up again and started crying. After we got home, I asked what was wrong and she said, "Someone hollered at me.” I explained that it was me and told her what happened. I don't know if she remembered the walk or not. All she said was that she wished the car had hit her. Of course we would never let anything like that happen to her. I told her it was our job to keep her safe and she looked at me as if I was punishing her even more. It must be torture for her and all I can do is look to those rare moments that give her comfort. That being said, I am hopeful about the work by Marc Agrogin, MD and look forward to reading his book (yesterday's post). I love the idea that even dementia patients can be treated for depression. Now we just need to find the right resources.

Hope

http://whyy.org/cms/radiotimes/2011/03/04/aging-and-mental-illness/

Please try to listen to this if you get a chance. It's wonderful, hopeful and reaffirming.

What is it about Dr. Phil?

Alma took her desire to leave to a whole new level yesterday. We have an alarm on the front door and it’s quite loud. It reminds me of going into 7/11 and is pretty annoying. However, yesterday I was so grateful that Keith thought of that when we moved her in with us. That alarm went off so many times yesterday; you'd think we were having a sale on Slurpees. Fortunately, between our obnoxious little yip dogs and that high pitched ding, it startled Alma into quickly shutting the door and staying inside. Who knows how long it will be before she is no longer stopped by the ding. While Keith was home for lunch, he took out the trash and left the door open. When he came back up, Alma opened the door for him but quickly slipped past him and started down the steps. He asked her to come back inside and she was adamant that she was "going home" and stomped her foot several times. Keith later told me he was worried he would have to carry her back inside. I explained that we would avoid such measures and by following her until she calms down (Another tactic from working with children in foster care: try to avoid any kind of physical contact when someone is agitated. They will only escalate. The same would be true for anyone who is angry). Nonetheless, he was able to convince her to come inside and we spent the rest of the afternoon going back and forth about where she lives.

The only thing that really seems to calm Alma down right now is watching Dr. Phil. Of course I've heard of him but never had the opportunity to benefit from his great wisdom. I saw in some notes that a former caretaker left me once that she likes Dr. Phil. Therefore, when we are home in the afternoon, I make tea and we sit together and watch it. She loves him and laughs and laughs at how silly all of the people on his show can be. Personally, I can't stand him. I think he is pretentious and pompous at best. To be fair, I rarely make it through the entire episode so maybe I need to give old Phil a chance. For now, I am grateful for the diversion and to hear Alma laugh.

Even with an hour of Dr. Phil paired with her favorite cinnamon apple tea, Alma ended up quite agitated by the end of the day. Overall, she repeatedly states that she is frustrated that she "can't do anything" and will begin to stomp her feet like a small child who isn't getting their way. As I was helping her get ready for bed, she perceived that I was yelling at her for taking too many tissues (I wasn't-She grew up Post-Depression and she has related that her mother had a stern policy on toilet paper and tissue usage). I was asking her to please throw away the tissues in her pockets before putting her clothes in the laundry. Honestly, I really don't want to touch the used tissues and I think its okay to ask her to throw them away. She states that I am always taking all of her tissues and started arguing with me. I said (in an overly dramatic tone), "You want to fight with me about it?” And she said, "Yes, but you better watch it or I'll give you a black eye" and started laughing really hard. She went to bed still laughing at her own cleverness and the absurdity of her ever lashing out physically.

Adding insult to injury

I realize that I haven't really been keeping up with the whole purpose here and that was to chart daily behaviors. I am feeling a bit sensitive because I know that there are friends and family of Alma's reading this and I don't want to sound so fatalistic. That being said, the reality here is that this is a degenerative condition and there are more negatives than postives to report on a daily basis. I want to keep all of this real.

We just got back from our walk and I set Alma off again. I try to see if she can find our house on her own. Most of the time she brings us to the right house. Today, she kept walking so I decided that we would just continue down to the cul de sac and then turn around and maybe we'd have better luck from that direction. When we got near the house, I asked her to take me to our house. She wanted to take me to her house across the street (this is where she has wanted to be lately). When I pointed out our house and asked if she knew who lived there with her, she started crying and saying that she doesn't know. I realize now that this is the line of questioning that I was talking about earlier. I want to see where she is at on a daily basis and ask her a series of questions. These questions are getting harder for her and she is reacting. Okay okay, no more questions. I get it now. I will record her state through observation only.

Yesterday (I was being way more minimalistic, remember? You'd think I'd stick with that-duh), Alma's good friend, Ann came over. Alma was pretty out of it but in good spirits for the visit. Ann later e-mailed me and stated that this is the first time that she felt that Alma didn't know who she was. I couldn't really tell but I'm sure Ann would know whether or not her close friend   knew who she was. Alma also didn't know who her grandchildren were without some help. Today, as stated previously, Alma doesn't know who lives in our home. She also belives she lives across the street and said something strange. She said, "They said I can't live alone anymore." I asked her who said that and she said it was "management". It's very odd the way her brain is processing information. Overall, what is so hard to watch is that even when she is out of it, she is aware of the fact that she is confused and that seems to be what is torturing her more than anything.

Ouch, my poor ego

As much as I hate saying this, I have to admit that Keith's hands off approach may be slightly more effective (at least for the moment) than my overly attentive way of dealing with Alma. Yesterday was no different than recent days with lots of crying, packing to leave, standing by the door, and yelling at me, "I have dimentia!". However, as we went through the day without me trying to "fix" whatever was ailing her in that moment, she seemed to eventually slip into a more calm state of being.

I will admit that I modified Keith's approach a bit. While it is obvious to me that many of Alma's actions may be attention seeking, I can't help but feel that she does deserve and more importantly needs the attention on some level. Instead of trying to engage her in talking about what might be bothering her, (something that just might send her spirling further) and giving many open ended choices (my weak attempt to preserve autonomy), I simply redirected her in a way that was somewhat clear and she seemed to respond better.

This is what is turning into a daily routine:

Alma: (walking in the room with her purse, a blanket and overnight bag sighs loudly).
Me: What's wrong?
Alma: Oh nothing. I'm going now...
Me:Where?
Alma: Home
Me: This is your home.
Alma: I know but you don't want me here.
Me: Yes, we do want you here.
Alma: Okay I guess.....

And we repeat that conversation many many times throughout the day. I am finally getting that this may be somewhat "normal" behavior for someone with dimentia  (duh-I should know this). Therefore,  I notice that simply answering is much better than trying to problem solve about where all this is coming from. She still gets the attention without getting being triggered.

Minimalism

Today Keith has challenged me to take his approach towards his mother. I would go into what we've been through the last couple of days, but there really is nothing new to note. The crying spells continue and Keith and I have a debate over the best way to approach Alma and her sensitive state of being.

Therefore, I have opted to take Keith's approach for one day. He challenged me to take this minimalist approach for several days. I'm going to be realistic and committ to one. If it seems productive and helpful, I will continue. Keith's "hands off" way of dealing with his mom feels counterintuitive to me but that doesn't mean he's wrong. It simply involves doing the bare minimum; a lack of engagement so to speak. "Do not give choices or overly explain things", he says. Give her food at mealtimes and just allow her to be. I'm thinking he sees this as a more enlightened approach with his explaining that he fears I will burn myself out if I keep pouring all of my energy into Alma. However, he also makes another good point that I had not thought of. He shared with me that Alma is simply not used to all of this attention and "input" (a kind way of telling me I'm way overstepping with the micro management-it's totally true. I really am). She has lived alone for 20 years and prior to that was quiet and withdrawn. She just isn't used to having someone take care of her. He said it might be too much stimulation. He may be right so I'm going to try this. More on that later...

Vulnerability

I meant to add this earlier. I'm attaching a couple of links to some videos of talks by Brene Brown, Ph.D. My friend, Lizza shared the first one with me via a Ted Talks a few weeks ago. The second one is muh shorter and while it takes place prior to the first one, she does touch on some pieces about empathy that are not shared there. I strongly encourage anyone reading this to take a look. She has done a great deal of research surrounding compassion, vulnerability, empathy and shame. I just found it all to be highly relevant and thought provoking. http://www.youtube.com/watch?v=iCvmsMzlF7o
http://www.youtube.com/watch?v=qQiFfA7KfF0

"I'm on my pitty pot"

Alma is feeling frustrated this morning (nothing new but important to note). She said, "I'm on my pitty pot and that's just the way it is". I said, "you get to be on your pitty pot and that's okay. I spend a lot of time on mine." (I don't think that helped).

A few weeks ago, Alma and I made a poster to hang up in her room. We put butterflies and flowers all over it (her favorite things) and I made a list of the positives in her life. Things that counter all of the negative stuff she says about herself. It went like this;

Alma Martin....

Doesn't Mess up
Deserves to be loved and cared for
Is a great person
Does lot's of nice things for everyone
Belongs in our home with our family.

ect.... you get the picture.

Today she decided that she doesn't like it and tore it off of her wall. She said those things aren't true and that she just "can't do anything!" It's almost as if reading that just made her perception of her deficiencies even more pronounced. She just doesn't agree with the statements. I wonder how you build self-esteem up in someone at this stage who never had any....