After she was first diagnosed, and after her meds were adjusted (this took several months), she was fairly high functioning. She had short-term memory issues, but was able to carry on a conversation without repeating herself most of the time; she took care of herself, including using makeup and doing her hair on a daily basis, plus she did her nails, dressed carefully, and continued on as she always had in her personal habits. We went out several times a week, and she loved getting her hair done or going out for lunch or shopping.
As time has gone on, naturally her level of functioning has decreased with the progression of the disease, with severe dips when she has a UTI (these are VERY common in LBDers) or when she needs a med adjustment. These are addressed as quickly as possible, to restore her to a better state of mind as well as level of functioning. However, the LBD marches on, stealing more and more of her abilities. She no longer wears makeup, and will wear the same clothes for days at a time if allowed, although she does do her nails, and we get her hair done twice a month or so.
Now, 2 years after her initial diagnosis, she has longer and more frequent periods of confusion and frustration. The cruelty comes into play when she is in her lucid periods, and has no memory of the things she says and does when she's not lucid. She doesn't feel or believe she needs to be in a nursing home, for example, and believes she is well enough to drive a car, get a job, manage her own finances, etc. She strongly believes that, if she can't do these things, or live independently, she has no reason to live - so suicide is a recurring topic, though less so when her meds are more precise.
She's approaching another med adjustment now. In the past, she's only had them adjusted after she's become so paranoid and having such severe delusions and hallucinations that she needs immediate intervention. This time, I am seeing the signs and would like to see if all of that can be avoided. Her meds typically have needed adjusting every 6 months or so; right now, it has been 7.
Just as an example, here is a recent conversation I had with her:
Mom: I am going to leave the home and move to Florida
Me: Will you go back to the same area where you used to live?
Mom: Probably, there are a lot of jobs down there and all of my friends are there.
Me: You will stay in touch though, won't you? And let me come and visit?
Mom: Oh of course I will, and you can visit me anytime!
Me:
Mom: Where am I going? Where do I live? Where am I going to sleep tonight? Sherry, will you make sure I get home ok?
Me: Yup, we always get home ok don't me?
Mom: Oh that's right, I remember now! By the way, where is all of my money?
Me: You remember, I told you before, it is paying for your home, your medical expenses, your food...
Mom: Well I am so much better now, I can take care of those things myself, I just need a job and a car.
Me: OK, well I'll let you know if I hear of anything...
Mom:
Me: I wish I remembered all of the details, mom...that was so long ago and I don't remember much since my stroke...
Mom: Oh that's right, don't worry about it honey, I can take care of it...where do I live again?
And so it goes. A couple of things I always have in mind when I'm talking to my mom: The first is that She cannot join me in my reality so I must join her in hers. There is NO WAY that she would understand reasoning or logic anymore, her brain is simply not capable, and in trying it creates frustration that quickly escalates to agitation and even combativeness in her - which is obviously counter-productive. The second is that she never remembers these conversations. I realize that she might, however, so I never say anything that can be construed as an agreement to help her in her quest for independence. Typically I will ask her about her plans, or to keep me in the loop, and she agrees to do so, but I don't tell her I will help her.
(It should be noted here that I had a "cerebrovascular event" - according the official diagnosis - in the fall of 2008. She can't understand that, or what it means - heck, I don't even know exactly what they mean by that - so just saying "stroke" is easier, and gives me a way out of a discussion that has no place to go but down.)
The biggest consideration for our mom, my sister and I agree, is that she be kept as content as possible. Early on in the disease, she was told the facts about LBD, her home, her car, her finances, her massive collection of beautiful clothes about which she was so proud, etc. There is no sense in repeating all of it continually, as it only brings her pain and sadness. And many times she's not able to understand it anyway. (ie, there is no room for thousands of pieces of clothing in her half-closet space - she still thinks she should have ALL of her clothes with her, and can't comprehend that there simply isn't space there.) So we have stories that we tell her - "Mom your clothes are all at Gwen's, carefully packed and stored, and they are safe" - about each of her concerns. Whether 100% truthful or not, these are words that keep her more calm and therefore content, and that is our goal throughout the course of this disease. The same with her meds. It is our goal that they promote tranquility over lucidity. Since there is such a fine line with meds in LBDers, when there is a choice between cognition and calm, we will choose calm every time. She is gradually losing her cognition anyway; trying to hang onto increasingly shorter periods of understanding for a few more weeks is futile. But we don't know how much longer she will live with LBD - it could be years - and we don't want her in misery from ANY cause during that time, if it could possibly be avoided.
I hope that in sharing my experiences with my mom on occasion, you will gain some understanding of the unique challenges of LBD. In my next LBD-related post I will share some more resources for more information.
Thanks for reading, and thanks for caring :).
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Sherry, how awful. I guess I'm blessed in a way that I missed this with my mom. In her last few weeks, she began to think that she was living somewhere else and she begged to see her mom and dad who've been gone for many years now. She grew paranoid and afraid of my own brother who was caring for her at the time. I don't know how you handle this, other than with the help and prayers of family and friends. I'll pray for you!
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