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I'm not sure where I left off, but I'll start with posting this email that I faxed after hearing more scary info from the staff about Mom. Another phone call from the Doctor, and talk of hospitalizing Mom at a different facility - one that is better equipped. Falling to me, I fear for Mom's "sanity" and stress level if she goes for an overnighter after our experience at admittance, and how St Clair could not be with her as much as she needed, how they had no clue as to who Mom is or her needs, and it was horrific and that stress alone will create /exacerbate heart issues. So I wrote the following note after meeting with Waite and talking things over with him, and he and Dr K spoke and then Dr Waite explained things to me and Gordy. I can always have a physical, but this was a GCG crisis. We're pretty lucky that Dr Waite is willing to help out. My note I faxed:
11-15-2007 Dr. Khalighi, I really appreciate your speaking with Brian Waite, MD this afternoon. It proved very helpful and enlightening. Thank you. During our subsequent discussion, I realize that a blood transfusion will likely mean an overnight stay in the hospital. Mom's inability to speak clearly and be understood, her fears, dementia, et al, are basically challenges that she faces daily. Before I can feel comfortable saying yes to the procedure(s) outside WSH, I need to find out what sort of care Gerry will receive which addresses Gerry-specific issues. For example, Mom does not stay still, seated or resting, for long, nor does she sleep in her bed at WSH.
It is difficult to envision her staying put during any procedure.
Mom also has already pulled her IV out while at WSH and under supervision, I can only imagine what damage being left alone in hospital might bring.
Another "stand-out" issue, is her need for attention, and subsequent anger and frustration when alone or inactive.
Gerry is also known to be very vocal when she isn't understood. She is still unaware that it is her not speaking clearly, vs the "listener's" fault. Historically, Mom has always been upset when not acknowledged when she talks. The staff can speak to the above issues and more. They also have become quite adept at understanding her needs and vocalizations better than even Gordy and myself. Hopefully they can offer some suggestions to allay the issues that would likely arise with an overnight stay in the hospital. Personally, the two things that come to my mind, is having one or more people from E-8, go with her, even if it means in shifts, to offer a level of familiarity, and a better chance at communicating and calming her. The other thing that might work in conjunction with staff, would be considering medication to calm her. The last time she was in Hospital they tied her to the bed -- this would not be acceptable. I hope we can address, and be prepared for this challenge together, along with the appropriate people at E-8 who know my Mother best. I believe I mentioned before, that I would be willing, if necessary, to pay out of my pocket, for the staff's time if they accompanied Mom during the procedure(s). I want the stress level to be as minimal as possible for her. She is precious to me and I hope to make sure that if she has to go, she will be as comfortable as is humanly possible. Regarding the actual procedure(s) being done, I'd first like to wait a bit to see if time and care at WSH can offer the necessary improvement in her health. To that end, I would like to keep Mom at Western State Hospital for now, and have her condition monitored and myself kept in the "loop". If her condition worsens sooner rather than later, I will seriously consider approving the blood transfusion and a tap for lung fluids during the same time. I am hoping for the best, and relying on Mom's strength of character to help in the healing process. But, if the tests you order prove that she is getting worse, then by our discussing her care for a stay at the hospital, we will have a plan prepared and can act on the hospitalization in a timely manner. Thank you for your continued care Tonight, we brought food to Mom for our visit, and while we were setting the table, Nicole said to me that she had read it, and she and Tammy and a few others would offer their time if WSH won't commit someone, or if they won't commit someone overnight. She said they'd do anything to help Mom get better, or have a procedure that will help her feel better - they offered their services off-line. WOW. Also, I finally met with Dr Khalighi (about 7:30 PM) and he's truly kind and caring. We talked, and we're on the same page about doing what it takes to help Mom, and preferably not have her go to Hospital. Tomorrow she will have more tests, and despite her mixed results, and how it conflicts with her temperament (today she was very amiable and willing and philosophical and talkative) and we'll see what the tests show. It was brilliant watching how Dr K interacted with Mom -- he teased her some, and he also held her hand and stoked her ego. He wins points in my book. People honestly love and respect my Mom -- so much more than she ever got at HomePlace (except from a few caregivers). Our talk also is going to have us come 3 times this week in hopes of her eating and drinking food instead of just once a week when we come. Let's hope this works -- she looked very dehydrated and pale, but again she was lovely and engaging and "cruise director". But, despite her loving and caring, it truly felt like there was a huge disconnect on a new level, and I miss her in a different way. Let's hope that she will stay strong, and upbeat, and not need to go to hospital.
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12:23 AM - link - |
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Thursday November 15 2007
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And I thought things were tough before... no one can prepare a person for each step of this insidious disease, and the responsibility that is impressed on the DPOA [durable power of attorney aka moi for Mom]. The past few weeks has been pure hell; one crisis after another with little to no breathing room. I can only thank the powers that be that Mom's journey has brought her into the care of some wonderful and amazing people at WSH, specifically Ward E-8. They are perceptive, and caring, and have absolutely fallen under Mom's charm. Mom's survival methods have done her well, even throughout this horrible ordeal where so many pieces of her have been suppressed and repressed and eaten away. Mom's survival mode is the way she combines the pieces parts of her that are brilliant, smart, savvy, intuitive, orderly, her physical beauty, her zest for life, her ability to make people feel good about themselves [..my what amazing skin you have...], her bursts of anger coupled with it blowing over just as quickly and forgotten by her [I would hang on the the echoes of her scathing tongue or loudness.. but that is MY issue, not hers], and her fear blanketed by her pacing, her shmoozing, her being "cruise director", her love of life and observing people. These qualities translate to a vital, funny, woman, who doesn't complain lightly, and her beauty - dang, she's 83 and toothless, no makeup, no hair style per se, and she's estimated to be 70! And 70 is prolly the new 50's. Her wanting to be clean about her person, and wanting to have order and cleanliness surrounding her also speaks to her living in the present, and not defeated, nor aware she has reason to be. Whenever I phone, they go on and on about Mom's virtues, and how they enjoy her. They also speak to the fact that if it's quiet, they all immediately ask "Where's Gerry" and seek her out. If she's too quiet and sleepy, it means Mom is not well, and they work with her to figure it out. They are tireless in trying to make her comfortable. If she yells, they know she's frustrated at not being understood, and that she probably is in pain, or has some basic need that has to be tended to. They love that Mom "hugs back". They enjoy her teasing them, and they tease her right back. They laugh at her "jokes" and sense of humor, and they like to be with her. Mom clearly believes she's "the boss" and despite the outbursts, and trouble she may stir up, they embrace all of her, and can't wait until she is laughing and happy again by their figuring out what caused her distress. Mom is charming, funny, alive, and loving. And these people appreciate what she has to offer. At the private facility she was in, they wanted "sheep", quiet sheep that were seen, maybe, and definitely not heard. Not so here at WSH. They embrace all that Mom is, and understand the intricacies and various "monkey wrenches" alzheimer's throws her way. I had noticed 2 visits ago that they appeared to truly have Mom's meds pretty level so that her pain was minimal, and her mood pretty level, and her ability to walk still strong, with just a few tremors, or the occasional slip and fall. But now, with the onset of not only the Pneumonia, and it's continuation, her very very swollen lower legs and feet, and the fluid not leaving one of her lungs, despite the additional round of 2 different, concurrent, dosages of antibiotics, and what they found in her most recent blood draw, they are goig to have to mess with her current medicine and dosages. The latest blood work found that there may have been a heart episode. The fluid in her lung may also be from the pnemonia, congestive heart failure, or even cancer. They will be taking more blood tomorrow. They have talked to me about her going to the hospital. This scares me for many reasons. WSH, is mostly geared towards mental health, hence, Alzheimer's and dementia patients. Therefore, many procedures must be done outside WSH. Thus talking about her going to another hospital for some assorted procedures. This falls to my discretion as DPOA, and will also get them off the hook for any liability issues down the road. So, I have to research them myself, and ask for many opinions of the staff, beyond the MD, to try to get a broad picture, as well as a very accurate look at the pros and cons. Peeling through the layers is not an easy task. Asking the right questions, balancing what I might instinctively do, v. what Mom may want. To speak for her is so hard--Mom is a complicated woman even before the disease invaded her body and mind. Her life is literally in my hands, as is the future quality of life. There was another attempt by the physician at WSH to reach me to talk about her going to a different hospital for 2 very different procedures. We spoke today, and he didn't want to commit, and he couldn't answer the questions I needed to be answered so I could make a more sound and reasoned choice. I phoned and left a message with the Social Worker who, after my going over it with him a few times, finally understood the dilemma I was having, and the seemingly contradicting things he was telling me about the procedures and what it the ramifications might be. He was sort of a "moving target", and I was not satisfied with the answers I got. He, also became frustrated, and tried to push choices before I had the data I needed to give him a specific answer. Also there were discrepencies with the information I was getting form different people that work there. One person said that he suggests, since he tends to err on the side of caution, I be there, now, with Mom, intimating her time is very short now, until he learned I saw her a few days ago, and then he said, well, sure, you can wait until you come this weekend as planned -- that Mom actually was perkier this afternoon, and walking around. A truly scary and mixed message. Someone else said, with vehemence, "you don't want to torture this poor woman do you" regarding doing a procedure that he was recommending, indicating that if we did it, it would "torture" her. When I speak with the other people, the ones that see her regularly, and work with her, they indicate that the urgency isn't as bad as it may have sounded, and assured me that they absolutely would let me know if, or when, Mom's health started to fail quickly, so I could be with her. So that was reassuring, as another person indicated that it had to be stated. Another mini roller-coaster calmed somewhat, when I spoke to another person who is with Mom quite frequently, when I ran my thinking about the procedures and my understanding of them, and my approach to reconciling what is best for Mom, when she affirmed that what I told her is well reasoned and sound <*phew*>! So, tomorrow I should be talking to the doctor again, and hopefully I will have the information I need, and can make a choice that would reflect what Mom would have wanted, and I can live with, and know that I did all I could do to reach my decision. I hope and pray that Mom is comfortable as she can be emotionally, spiritually, physically, and that my actions may even elevate her health and comfort. I love her so very much. Again, I am trolling for good vibes and healing for Mom, and wisdom for myself. [posted without re-reading and /or editing - sorry in advance ..]
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01:24 AM - link - |
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Crap! The "universe" sure has a sick sense of humor. But for Jim, my brother, not being allowed to speak to Mom today because WSH E-8 ward told him he wasn't on the list [this after over a year of his and Mary's phoning them almost every weekend...;p~~~~~~], and Jim then phoning Gordy and leaving a message of frustration on his voice-mail [apparently he added Joan and SuSu has been trying and not being allowed either, but I hadn't heard this from them earlier] I would not have phoned WSH scant hours ago. By phoning, I heard that not only did they not have the record, but it was prolly lost through the fact that Mom now has 2 charts, and it is with the other one. They added the names for me on the front of the chart, and I faxed a note over to them. BUT, here's where I get shaken up to the core. Apparently they put Mom on IV for fluids and whatever for a few days already, and they never phoned me!!! That is so atypical of them as they usually are so careful to keep me involved. Mom is literally not eating or drinking anything. And she has a UTI which is not good; I can't imagine her system being able to fight it with no "fuel". I am scared to my core. I can not stop shaking, literally. Gordy cancelled his appointment with his customer tomorrow, and we will be heading down to see Mom. I want to go now, but with the weekend staff on, I won't get much help, and Mom will prolly be dozing. They prolly can't even reach the MD to talk to me later on if they tried. During the day tomorrow, if it seems necessary, I'm sure someone is on call for the ward, and Mom specifically. SHITSHITSHITSHITSHIT!!! I can't lose her. I need her. I need her to feel well. I love her so damn much. Pray for her to be ok. I want her to have no pain or discomfort. But I hope it gets resolved by her regaining her appetite for food and life. I love her so much. She is brightness and joy. This is so scary. I phoned Marilyn, but didn't put an "urgent" on it, 'cuz I'll be there tomorrow, not home...so the "universe" will have to intercede for me here if I'm to speak to her. Let's hope it is a gentler method than earlier today, with my Brother being frustrated and upset about reaching Mom.
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06:48 PM - link - |
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Fear strikes re: stomach again. I know that I have had more nausea and stomach issues since I came from CA. Last night I felt like I was going to "whoops" -- pain with it too. Then, this AM when I awoke early with G to get ready for, insert drum roll here, breakfast OUT , I whoopsed pure bile. Shit. Fear. I hope I didn't "break" the run of no ERtummy trips....send healing light y'all. Also, Miz Olivia has been growling a lot of late. It had calmed down a bit, after starting with our baby boychik moving in, but she's almost nonstop, and I fear it's not just stress, but maybe possibly pain. Si methinks it will be a vet trip in her future. Please send healing light her way, 'smatter o' fact, if you have to choose where to send it, then please send it to my little girl-cat. I've been going through personal meltdowns of late, prolly the huge pain all over, and the lack of energy, and the hopeless feelings regarding failure and a dismal outlook no matter how hard I try to get to point b from point a; my current state of body, mind, soul and spirit. I didn't write about my last visit to Mom. She was in such agony, and she didn't eat, and she was very disoriented. One time she did know me, she had fallen asleep at the table, and I held her hand. She roused from sleep, and groans in her sleep, and upon feeling my hand, and her following it to my face, she perked up, and seemed to have said she was happy that she had been dreaming of me there, and voila, I really was there, so she smiled, cried some, and kissed and kissed and kissed little butterfly kisses my hand, and then allowed a hug and a kiss from me. But even that caused pain for her. She loved seeing Gordy each time she aroused herself from sleep, even though she was in pain, and barely ate. We did get her to down her meds though. But she was in pain, and her pain was so horrible to witness. I started to lose it at the nurses station, but was encouraged by the caregiver who talked to me some, as she, too, has fallen in love with Mom. They do care, and they do think Mom is special and enjoy her. Mom always has been a charmer and shmoozer and had an amazing blue twinkling eyes, and also an innate joi de vivre. She is surviving because of her, not anything I am able to offer her. She's amazing. I'm going to nurse my pain now, and drink tea and nibble on dry toast. Maybe fall asleep? Hope hope, escapism is good.
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10:23 AM - link - |
"walk this way..."
Igor [prnounced Eye-gore] from "Young Frankenstien" [pronounced Steen] --
there's more!
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We salute the Grammy nomination of the late great
Dave Van Ronk's final concert album: 
