On went my plan. I found cabinets that I liked, used and affordable. I bought used ones at 1/4 of the price of new ones. Nearly perfect condition. The only comment I heard: "As for me, I don't mind the ones we have." When I tore out a wall: "As for me, I don't understand why the wall bothers you." No more. Dang! This is almost too easy.
Then I started noticing some boils on my body. Some very deep and big, some smaller. At first, I didn't think much of it. After all, I had had boils as a child. I was probably a little low on some vitamins. But it spread and hurt more and more. AND K told me that he's been having the same issue for a little while, too. That scared me. I started thinking that MRSA might be a possibility. So we went in and had ourselves tested. He was tested a week before me and was negative for MRSA. But he did have staph aureus. Good grief! But I was worried a little less. Mine didn't go away and spread more.
I had scheduled a public ritual. I work in a doctor's office. I am around people I deeply care for. I had to know, so I went in and luckily there was a lesion that was testable. 3 days later, the results came back: MRSA. I couldn't go to work. I couldn't partake in the ritual. Friends were afraid to touch that which I've touched (rightfully so). I became a social pariah. And while I understood that it had to be that way, it still felt terrible on my end.
At home, I went on a rampage. Everything was wiped down with either bleach, or Lysol or Isoprophyl Alcohol. I washed 3-4 loads of laundry a day. By the time I was done with all the extra work, there was no time or energy left to work on the kitchen remodeling. Over Valentine's we went to New Orleans as previously planned. The doctor had said that I could travel as long as I observed hygiene rules. I was very afraid to be out in public too much. While in New Orleans, things became more resolved and I was now able to start the final decolonization regime. All of this was a perfect excuse to not go out too much among the public. Instead, we went walking around the Garden District quite a bit and I got to explore a bit. Our hotel was in the Garden District. How wonderful and how perfect. K was happy to tag along. He really didn't want to spend all the money it costs to go into each attraction, such as museums and tours. This stuff is expensive. And he was very mollified when we found a set of 3 catholic churches, which he loved and I photographed.
When we returned to the Bay Area, I called my boss to see if I could come back to work. She said she wanted t see a nasal culture to make sure the MRSA was gone. I called Kaiser and the doctor told me that it wasn't something that was definitive and so Kaiser wouldn't do it. I was upset. 10 minutes later she calls back and tells me that after looking over the test results once more with an infectious disease specialist, they came to the conclusion that there was NO MRSA in me, but rather staph aureus. I cried and cried when I heard the news. I felt all kinds of feelings. Sadness, anger, relief, etc, Now I would be able to go back to work.
It's been a couple of weeks now since then. I'm still struggling with the fear that came along with the MRSA scare. I'm still using disinfectants much more than I was before. I am still carrying alcohol pads with me and wipe my hands down, when I touch some public surface. I want this fear gone. I want to feel safe again.
Other than that, I'm peachy, actually.
- Current Mood: cheerful
- Current Music:it's a beautiful day in the neighborhood
|Come and join us for the NROOGD Public Ostara
11AM to 2PM
Oakland Humanist Hall
390 27th St., Oakland, CA, 94612
Something to share for the Pot Luck Lunch
This generally means a serving for everyone in
your party and four more people.
Your favorite cleaning implement
A prize will be given for the most creative
but we warn you that a demonstration may be
required and that this is a family gathering
plate cup and flatware which may be washed
A basket to gather eggs in and if you wish a few
colored, hard boiled eggs to hide would be
A real desire to have fun
Owl Moon wishes to cordially invite you to a NROOGD Beltane
Come my friends and journey
back to the days of yore
All the way back to the
1980s! Where great battles ensued and great merry making abounded!
Come one come all
The Oss awaits you!
Live Oak Park, Berkeley
Saturday April 28
Gather at 1:00pm Ritual at 1:30
Suggested Denotations: $10-20 As always, no one will
be turned away for lack of funds.
Any contributions of food for the after
the ritual, is also greatly appreciated
Dark Forest a NROOGD Coven, will celebrate Samhain on October 29th, Saturday Night at the Palo Alto Unitarian Church.
The Palo Alto Unitarian Universalist Church
505 East Charleston Road
Palo Alto, CA
Gather at 7:00 pm. Ritual at 7:30 pm.
A ritual to celebrate Life in the midst of Death.
A celebration and rememberance of what we honor in our ancestors.
A celebration and recognition to honor what we choose to live.
A celebration and gratitude to honor those that travel with us.
To that end we ask those who wish to participate, to reach out to a person that you have not seen for sometime, simply miss, or who haven't been seen in community for a while and invite them to join us. The point is the reaching out, not whether someone can or will participate in the ritual. Tradition or Creed doesn't matter, again we wish to honor those who travel with us even if paths diverage.
Public ritual, all welcome who are respectful and tolerant. Children are welcome, but there are not specific activities for them so we ask that they be circle trained. Donations requested, but no one turned away from lack of funds.
Please bring food to share in the feast that follows the ritual. Because of the hall set up, finger food is preferable.
There will be an alter for the honored dead. You are welcome to bring tokens to place on the alter - however be sure to take them home with you. We can not be responsible for lost or left behind items.
This notice may be distributed to the public.
If you have questions, please contact us though dark-forest.org or at email@example.com.
Blessings of the Season on all.
Last Monday K had a cognitive test, the first since his surgery. There are some distinct problems for him, and there is something distictly right: They took off his dementia diagnosis and now have him in the 'mild cognitive impairment' category. Who knows, maybe the surgery worked and I was wrong. Maybe I just noticed more than before.
His impairments are still very pronounced. He has trouble sequencing, delayed recall, calculation issues, and he scored 13 out of 15 on the geriatric depression scale. And they can't tell me that in a test like that they can measure his forgetfulness after a week. I see it - they don't.
Still all in all good news. I'll udate more when I'm not working so many hours.
If I had to be completely honest, I'd have to admit to a glass-half-empty kinda life. I have tried valiantly to make it different, but often I get swept back into my own patterns. This hasn't changed with K's diagnosis. I have been all over the map with my feelings, fears and worries.
Is his "Normal Pressure Hydro Cephalus" diagnosis correct? After all, the neurologist said that truly, we would only know if the dementia didn't progress after the shunt surgery. Since then, we have gone in and out of CT scans. The ventricles in his brain haven't gotten any larger. So, if that is the way to measure things, then we may have beaten it. Yet, I can't allow myself a breath of relief. I'm afraid I always have to stay vigilant, because if I don't I might get blind sided again.
So then, the next question that arises for me is: How else does one measure progression? Since his diagnosis a little over a year ago, I have paid a lot closer attention. And I see things that I didn't notice before. Does this mean that there are more symptoms or am I just being more vigilant? Maybe even paranoid? Will I just have to learn to live with somebody, who just doesn't have it all together anymore, but it won't get any worse? Hmmmm!
Then there are moments like this morning. I'm in a room close to the bedroom, where K is still laying down. Obviously awake. Suddenly is hear him talk in there. Not to me. Maybe not even to himself. Maybe he was just thinking an issue through aloud. Who the heck knows? When asked him about it I received a flippant answer: "Why? Wanna put me away into an asylum?" After that answer: MAYBE!! It did make me think, however, about my client/patient who is in the advanced stages of Alzheimer's. When she is not aware of anybody being in the house I hear her talking to herself - a lot. Is this indicative of dementia? Or is it just a symptom of spending a lot of time alone? Both she and K have a lot of alone time on their hands. In researching this on the web, there are all kinds of opinions on this topic. It ranges from being a normal coping mechanism to Asbergers, Autism, Dementia, Schizophrenia, etc. So clearly, this is not clear at all.
Last week, we went to see K's neurosurgeon. While he told us that the ventricles had gotten neither larger nor smaller (which may well be good), he really didn't have much else to add to my learning experience. The shunt is pumping fluid, this is known. K has daily head aches to prove it. Since the ventricles are not getting any smaller, the Doc is not worried about the brain falling in on itself. There seems to be enough fluid to prevent that. Hell, K may have dodged a bullet, and I'm just to paranoid to let myself see it. However, a cognitive test would really do a lot to alleviate my anxiety - or not!
In the meantime: Does anybody have any advice to help me with my forgetfulness ;-)
- Current Mood:touched?
- Current Music:I wanna go home
Well, reality has hit me smack back in the face. I HAVE TO remember that things are not as usual., and they never will be again. Each time I forget that the universe decides to give me a reminder, just to keep me on track.
Easter Saturday, I was still house sitting in Marin. K had come over to spend Easter with me. Having sat in the house for some time, both he and I got a little antsy. Since I am familiar with the area, I decided to take a ride along the coastline of The Marin Headlands. We drove through the loooooong Bunker Road tunnel that took us from one side of the hill to the other, since the drive around the Golden Gate bridge is not available and blocked. From there we took the road up the hill and then down a very steep road that hugs the side of the coast line. Along this road we talked about how I had taken my niece this way, and how I would like for my sister to see the whole area, as well, when she would arrive the week after. All along he mentioned how steep it was and how scary it was.
Fast forward 10 days: My sister is here from Germany with her hubby, and finally we get back to this area. As we drive down the same frightening road, out of the back seat, I hear "Honey, I don't think we've ever been here before." I reminded him that we had just been there 10 days earlier, and he went silent. I didn't want to push it, but made a note of it.
Fast forward to today:
Me (talking to K): "Honey, we need to schedule and appointment for another cognitive test."
K: "Why? Things are going fine."
Me: "I know it seems that way to you, but from my point of view, you've become more forgetful."
K: "Well, I'm 65 years old. Everybody gets forgetful a bit more. Ben is forgetful, even you. You probably forget more than I do."
Me: "You're right, I have become more forgetful. And when I look back, I have to say that it coincides with your dementia diagnosis and the stress with it."
(We argue back and forth for a while about what is normal and what isn't. I remind him of his MRI
that shows brain atrophy.)
Me: "Just to make me feel better, so I don't worry about it all the time, why don't you go and get another cognitive test done, and if nothing has changed, I'll shut up."
(This is just too enticing for him to turn down and he agrees to the test.)
K: "Okay, I'll go and do the test. Tell me what it is you think I've forgotten."
Me: "Remember when we went on that drive with my sister along the coast and you said that you hadn't ever been there? Well, we had been there just 10 days prior."
K: "That's not possible. If I had driven on that road I would remember. How can I forget that road? Maybe we were there a loooooong time ago. I don't think we were on that road only 10 days before we went there again You're wrong. I don't know why you have such a hard time remembering. Maybe you have dementia, not me."
Me: "That's a valid point, except for the fact that we have an MRI that points out that there is brain atrophy in your brain. Honey, this anger at me is just a way of dealing with your fear around that."
K: "Fear? I'm not afraid. I'm going to go to get tested again, so we can settle this issue."
Just when I thought I so had it handled that he is forgetful, I get nailed. And I can't even get mad.
- Current Location:home
- Current Mood: sick
I work with an Alzheimer patient 3 times a week (I'm too lazy to go and look back to see whether or not I've mentioned this before). This week has been both rewarding a jarring for me. On Monday, I go to her house to find her sitting in the bathroom with severe diarrhea. She yelled at me to get out of her house because she was ill and didn't want anybody there. Okay. I pretend to leave, but come back in 3 minutes later to make sure she's okay. I found her sitting in the living room, having trouble breathing. Her 'illness' got her blood pressure up to around 190/89 with a pulse of 82. A call to the doctor and a few minutes later we had the situation under control again. I put her to bed and she went straight to sleep. This was around 5 pm. At 8 pm when I rechecked her blood pressure, she thanked me for everything I've done for her. Each day since, she was really nice to me. Until today.
Today I went there and she barely tolerated me for 45 minutes. At that point she had completely forgotten again who I was and she threw me out of the house. She was angry and back to her ol' self, at least the self that I have come to know. In order to keep her from getting too mad and driving her into any sort of action, I always pretend to go out. And then I go back in. Most of the time she doesn't even notice. She's hard of hearing and really spends most of her time on the couch. just sitting and staring. This led to a bit of peace for me, and time to think and reflect.
I realized that it is impossible to build a relationship with people who have dementia. As a new person in their lives one may be able to have pleasant - or not so pleasant - conversations, but really that is about all one can expect on the positive relationship side. Thinking that one has made a lasting impression, impact or any such thing is just setting yourself up for bitter disappointment. My patient didn't even remember that she has a 13 year old granddaughter.
That led to thinking about my situation at home. We've only been together for 15 or so years. If this thing progresses and I believe that it is progressing, then at which point will I be forgotten, only to face being thrown out of my own home. Will he even remember that this is his home, as well? What will the struggles be? Will I be safe? Will I be able to protect him in a way that he would have wished pre-dementia? This scares me a lot. How will I handle this? How will it effect me? How will I react to being a stranger to the man with whom I've shared my life for the past 15 or so years?
About a month ago, I said: "If I am going to interrupt my work and possibly endanger my future well being to take care of you, then I need one thing. I need for us to get married legally, so I can get your social security should something happen to you. That way, I would be taken care of in my old age." This infuriated him. He said it would never be possible since I am not a Christian and he is. Now, I know that there are all kinds of responses to that. I chose to just be quiet for a while, and only do the necessary communication. After a few days, we took a walk. He and I started talking about things. His temper came out something fierce, yelling the most ugly things at me. I don't know if it was the dementia, his fear, his character or a combination of all three, which is the most likely. It was at that point that he said: "You would never be able to take care of me, and I doubt that you even want to. You're always going off, here and there, and leave me alone." Mind you, going off here and there entails going to work and twice a month to meetings with friends. Well, the upshot of this whole debacle is that he wants to be sent home if and when his dementia progresses. He feels that his family at home would take better care of him than I would.
My dilemma is: Which part of him was talking? If he goes home, he looses his medical coverage. That won't travel with him. If he goes home he'll have the care of doctors much less experienced in dementia, since most cases over there don't get medical treatment. If he goes home, he stands a good chance of getting medicine that is counterfeit. If he goes home, my life will be much easier, much less stressful. If he goes home, will I miss him terribly or will I be happier? I think that he has always planned on returning home once retirement was here. Secretly, he was hoping that I would change my mind and want to come with him. By now he has realized that this is not going to be the case. So, he feels that he has to stay here with me, to take care of me, to babysit me, as he once said. The anger that comes out, I believe is a mixture between his need and longing to live at home and his commitment to me, whatever that may be. I am neither near retirement age, nor willing to uproot myself and move to Ghana. So, if the power of attorney that I hold ever kicks in, which decision do I make? The one that is good for his body or the one that is good for his soul?
Never in my wildest dreams did I ever think I was going to be in this position. I had fears about all kinds of things, but this wasn't even close to my consciousness. So, I'm not prepared. Is one ever prepared for something like this? I certainly wasn't prepared for entertaining the idea that I might send somebody off to be taken care of by someone who is not me. My mind is all over the place. I'm having a hard time focusing. See, what an afternoon with a demented woman can do for ya?
Yeah, me too.
...I read a blog about somebody, whose life is a lot worse than mine. Then, right then I realize that things could be worse. THEN I return from lalaland.
I do realize that my life is actually not a bad life. I have work, I have a roof over my head, money to buy a car, clothes, food and a few extras here and there. I try to be cognicent of that at all times since returning from Ghana in 2003. In Ghana there are some very rich people. For the most part, they are rich and live their lives like any other rich person. They are the exception. The rule are folks ranging anywhere from 'having a steady job to pay for the bills and home' to 'living on the beach under a palmtree'. The majority of folks fall into the lower income ranks. It is a country of very kind and generous people. Even the poorest of the poor will share their food with you. Hospitality there is big making me realize that I really don't have a bad life.
Okay - I vasilate back and forth between lalaland and reality. Just go with the flow.
- Current Mood: weird