Sisters Reunited!

My mother, who has lewy body dementia, hadn't seen her older sister, and only sibling, who suffers from Alzheimer's disease, in 8 years. But for months has been asking how she could reach her to talk to her. I've provided both the phone number and the address numerous, but both are lost and forgotten within minutes.

My cousin advised me a couple of weeks ago that she and her parents would be in the area this week, so we arranged a dinner last night at Coyles. Included were my husband and me, my daughter and toddler grandson, my sister and her 2 daughters, and of course my cousin and her parents.

The entire week before the event I reminded my mother continually about it, although within minutes it was forgotten so the next time I mentioned it, it was new news to her. Yesterday we picked her up in the afternoon from the nursing home where she resides, and told her yet again about the dinner. Within an hour or so, though, my mom was wanting to go back and spiraling down into some of her more miserable (to her) behaviors, wanting to leave "the home" as she calls it, get a job and a car, and once again have her independence. I was able to divert her attention at first back to the evening's plans but it became increasingly difficult to dissuade her as the afternoon wore on. I finally told her - yet again - about the dinner with her sister, and said we could talk about all those things afterward; every time I had to repeat it, that worked!

Fast forward to the restaurant. We were the first to arrive, and at our table. I kept the conversation on the purpose of us being there, that my aunt would be arriving soon, etc...purposely not giving her time to forget. Then my aunt came around the corner. Instantly my mom ran the length of the room, crying, and threw her arms around her sister. My aunt didn't know who my mom was at first, and had to be reminded during the course of the evening, but they sat together and talked and talked and talked!

I don't want to write too much about my aunt, for the sake of her privacy, and I'm also omitting a lot of details about my mother - as I often do - for the same reason. But it was helpful that our waitress used to work in the kitchen where my mom lives, and knew her. (No such thing as a coincidence in the life of a Christian, thank you Lord for that!) I was seated opposite my mom, as she gets anxious when I'm out of sight in public, and was privy to their conversations. Many times the conversation made no sense to me - or to each other - but that didn't matter, because they were together, they were talking, and that's what it was all about. I got a lot of photos - a LOT of photos, and will get prints for each of them, hopefully thereby helping them to remember the evening.

One of the things that I observed was how different Alzheimers and LBD victims are in their responses. For example, my mom was able to showtime for a while, and her animated personality was completely intact even when she was talking about things that only exist in her own mind. My aunt still had the same mannerisms and gestures and personality, but all were "faded" - a shadow of the last time I saw her. It was still her, but in a much more subdued state. Another thing was that, whereas my mom will talk as if everything she's saying is absolutely real, my aunt was much more tentative, as if she didn't quite understand, and constantly looking to her husband and her daughter for help in understanding. Where she would start on one subject and ramble through several more in as many sentences, my mom doggedly stays on a single subject and won't let go.

Of course, I can't say that all of these differences are attributable to their respective diseases. But these 2 ladies have always been nearly mirror images of each other, which heightens even more the opposite behaviors they are now exhibiting. It was an amazing lesson.

The hard part for me to hear was when my mom was begging my aunt and uncle to let her move downstate with them, to live with them while she found a job and got back on her feet. She spoke of "the home" as a place where she's been stowed, and anytime she thought I wasn't listening, would lean in close to them and almost beg them to rescue her from the life she now has. That is, again, one of the cruelties of LBD - the knowledge of what is wrong but the inability to understand or deal with it. Some of the time she's a happy little girl, with all of her friends at "the home", like a big party, and no cares, and nothing could be better. Other times she rages because she can't process anything that's going on around her, except to KNOW that she is the victim of it all, and in danger. And then there are these times, where she knows something is wrong yet feels, thinks, and believes that she is normal and if only she were given her life back (her words) she could put it to right - it is these times which are the most difficult...

But there were a lot of happy tears, and a lot of things that are funny only to the stressed caregivers like my cousin and I. It was a wonderful night, and I only hope that my mom can remember it today. We are hopefully planning another one for next month. Now that my mom has no real concept of time, it will be like another reunion of 2 long-separated sisters, and she can enjoy it all over again :).

Health Update

Today was my endoscopy of my gut. Let me just say that my belly/back pain has continued to increase, along with the size and hardness of my upper abdomen. At times I have been writhing. Add this to my intense leg pain and there are so many times that I don't even know if life is worth living (even while I know that isn't up to me)...

Anyway, hopeful for answers today, none forthcoming. Barrett's still there but doesn't look as bad as it did a couple of years ago - a praise! Doc snatched a bit to biopsy. Hiatal hernia, first seen through a scope in 1992 but considered so small as to be inconsequential then, is much larger now and probably the cause of some pain but certainly not to the degree I have. There is also inflammation in my small intestine - not a surprise, given when I've already got going on...

So for today, no answers yet - just more pain than ever...and another test coming up in 6 days - this one involving oatmeal and isotopes, plus a referral to a surgeon.

While I'm on the subject: 2 nights of reflux so intense that I had to hold back my head and stretch my mouth open to breathe past the acid burning in my trachea - yes, my windpipe - while the pain shooting across my chest and back was searing, and acid burning up into my ear canals and nose. We're not talking heartburn here, this is torture. 2 nights in a row, the 2nd night pounding the bed with intensity of the pain and the difficulty breathing. I have never known such agonizing torturous horrific pain...and this, while I'm taking 2 acid-suppressing drugs (protonix and zantac).

I often think, "I don't know how much more I can stand." Then I realize that I can stand whatever happens, because I have no choice. The inability to even move without pain, to eat properly, to walk without assistance, to not trip, run into things, lose my balance - to be independent and able to simply eat, breath, and walk - I don't even remember what that's like. And so often I despair of ever experiencing those things again. Life under the influence of strong pain killers that only handle part of the job, isn't life at all.

Yet for my online "life" - emails, facebook, twitter, whatever - I can use smileys and make cracks and type "lol" and appear normal. Nobody sees the huge dark circles that have taken up residence under my eyes, or hears me trying to fight the pain just to move, or sometimes just to breathe. The internet is my costume, my clown white, that stands between my reality and how I can portray myself...

But for today, more tests, more pain, no more answers...and that's my update.