I was having coffee & visiting with Johanna one day last week. She had come to Arizona with Darrah Sikora to shop and stock up at the Tuscon Bead Show http://www.thetucsonbeadshow.com/index.php
Darrah owns the successful ETSY jewelry company called Otis B., and Johanna works for her.
http://www.etsy.com/shop/BriguysGirls
Since she was this far West, Johanna thought she might as well continue on to California and visit with all of her family and friends while she could. She asked me about Mom, and how I was doing...and in my struggle to help her understand what my day involved, she smiled and told me to look up this website.
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
It would help me personally, she said, and would help me to explain the day-to-day life to someone who doesn't deal with (or is) a patient with a terminal or debilitating disease on a daily basis. The article was written by a woman suffering from Lupus, and her own struggle to define her need to make the sometimes selfish-looking hard decisions. Actually I found it very enlightening, even quite validating and relieving. I shared it with Mom, and we talked about it, her good days and her bad days, and that sometimes when she's feeling good she overdoes it. Then she, predictably, has a couple of bad days. It's too high a price.
Now we have a code: "Can I have a spoon?"
Sunday, February 24, 2013
Monday, February 18, 2013
No news-Good news
It's been an uneventful week (by our standards). Mom quasi-slipped in the shower when she was trying to turn on the water. She'd had to reach around and past the shower-chair. Usually Terry does this for her when she is here, but Mom wanted a bath on Saturday night, too. No breaks, just bruises and bumps. She also tripped, but caught herself, upon entering the front door because she didn't realize how high the WELCOME mat was...it's one of those thick grass pile ones, and she is wearing a 'boot' to protect her foot sore.
We have had discussions about her trying to do too many things at once. For instance, she just stops to pick up a piece of yarn, while she is pushing her walker, with a cup of cocoa on the seat, and with her oxygen canula inserted in her nose, and the hose is trailing along behind her. Last night after Gospel she was only trying to help...so she held on to the outside doorknob with her right hand and her walker (which is inside) with her left hand, while she was trying to reach for the door-stop with her foot so she could prop the door open for me (as I'm standing in the garage right outside wondering what she is doing and why she won't let go of the door knob...)
But we press on!
We have had discussions about her trying to do too many things at once. For instance, she just stops to pick up a piece of yarn, while she is pushing her walker, with a cup of cocoa on the seat, and with her oxygen canula inserted in her nose, and the hose is trailing along behind her. Last night after Gospel she was only trying to help...so she held on to the outside doorknob with her right hand and her walker (which is inside) with her left hand, while she was trying to reach for the door-stop with her foot so she could prop the door open for me (as I'm standing in the garage right outside wondering what she is doing and why she won't let go of the door knob...)
But we press on!
Monday, February 11, 2013
A distressing morning
Yesterday was fellowship day and we usually can make it from front to back...at least as far as the afternoon meeting. Mom was well enough, awake and dressed by the time it was time to leave for Sunday School. We arrived about five minutes late: 9:40 or so. She lasted through lunch. As we were finishing up eating she was starting to look tired. I wheeled her out of the meeting room into the kitchen where she wanted to say goodbye to Becky. Becky noticed her bad color and weariness right away. I got her home and into bed, then I tested her blood sugar. Not too bad for after lunch: 233. She was sleeping so I went back for the afternoon reading (Deuteronomy 8) and then went home again. She was still sleeping. I am always nervous about leaving her alone for her to wake up in the dark, as I said before, she is often confused first thing. So I stayed home from Gospel...she slept until 7:30 that evening. I gave her some hot tea, soup, which she didn't want, and some bread and butter (smart balance) She was up until I went to bed at 10:30. I fell sound asleep and didn't wake up so she managed to get herself to bed. A few things were left undone, like her bed-head raised, and her gel-pac on, but I had already set out her bedtime pills.
This morning was nearly tragic. She slept until 10:00, three hours longer than normal. OK, a little odd, but no crisis. Her visiting nurse and aide called for their appointments. I told both of them she was still sleeping. The nurse came anyway and did her exam while Mom was still in bed. Mom was very bewildered the whole time. Besides noticing that her pulse rate was increasingly slow (sounds like a contradiction) nothing was creating a red flag, so we only lessened one of her heart medications. I assumed that her moderate confusion and agitation were part of the normal routine. It usually passes in a few minutes. It didn't. It lasted for several hours. The whole time Virginia was here and the whole time Terry was here. Repetative questions, anxious questions, tears, quaky nervousness, agitation, more questions, more confusion. She couldn't hear or understand us, She wouldn't allow me to leave the room. She didn't want me to talk to Terry or Virginia, at least not while we were in another room. She didn't want me to leave her at all. If I turned my back to discuss medication renewals, she was unhappy. I told her gently, repeatedly that we were not telling secrets or saying anything she didn't already know. We all tried to talk with her present, facing her so she could hear. More tears. More paranoia. Terry tried to give her a bath. I had to stay in the bathroom too. This was so strange!
I snuck out when Terry was washing Mom's feet. I was trying to make her bed when I noticed that her little glass dish that I keep her mid-night pain pills (Vicodin) in was EMPTY. Normally I leave five or six pills there so she has a supply if she needs one during the night. Only that many so I can count them in the morning to see if she took one or not. She wouldn't remember. Usually they are all still there as she hasn't felt the need for one. The last time I looked they were all still there. So. It is possible, I guess, that she saw the dish there and thought I'd meant for her to take them all. The tiny white plastic cup that I give her her pills in does not look anything like the green lidded glass dish. Alarmed, I spoke to Terry from outside the bathroom door so Mom couldn't see me and quietly told her what I'd found. Terry was alarmed, too. Mom heard and understood every word. Terry was surprised at that. When Mom was dressed I drove her out to sit by the fire. I was trying to decide what to do. Terry thoughtfully called the nurse and reported it. At this stage there isn't anything we can do, but wait for her to wear it off. At the least it would be called a minor overdose. No more pills left laying around!
She confessed to me that she is anxious about my leaving. She wants me to go. She knows I need to go, I should go. I told her I can cancel at any time, and so she feels guilty. She wants me to stay.
Right now she is better. More cognitive, more clear headed.
Thank you for your continued prayers. I depend on them daily. I cannot do this without them. I cannot do this without the Lord's constant, faithful help and tender mercy.
Hopefully this crisis has passed.
This morning was nearly tragic. She slept until 10:00, three hours longer than normal. OK, a little odd, but no crisis. Her visiting nurse and aide called for their appointments. I told both of them she was still sleeping. The nurse came anyway and did her exam while Mom was still in bed. Mom was very bewildered the whole time. Besides noticing that her pulse rate was increasingly slow (sounds like a contradiction) nothing was creating a red flag, so we only lessened one of her heart medications. I assumed that her moderate confusion and agitation were part of the normal routine. It usually passes in a few minutes. It didn't. It lasted for several hours. The whole time Virginia was here and the whole time Terry was here. Repetative questions, anxious questions, tears, quaky nervousness, agitation, more questions, more confusion. She couldn't hear or understand us, She wouldn't allow me to leave the room. She didn't want me to talk to Terry or Virginia, at least not while we were in another room. She didn't want me to leave her at all. If I turned my back to discuss medication renewals, she was unhappy. I told her gently, repeatedly that we were not telling secrets or saying anything she didn't already know. We all tried to talk with her present, facing her so she could hear. More tears. More paranoia. Terry tried to give her a bath. I had to stay in the bathroom too. This was so strange!
I snuck out when Terry was washing Mom's feet. I was trying to make her bed when I noticed that her little glass dish that I keep her mid-night pain pills (Vicodin) in was EMPTY. Normally I leave five or six pills there so she has a supply if she needs one during the night. Only that many so I can count them in the morning to see if she took one or not. She wouldn't remember. Usually they are all still there as she hasn't felt the need for one. The last time I looked they were all still there. So. It is possible, I guess, that she saw the dish there and thought I'd meant for her to take them all. The tiny white plastic cup that I give her her pills in does not look anything like the green lidded glass dish. Alarmed, I spoke to Terry from outside the bathroom door so Mom couldn't see me and quietly told her what I'd found. Terry was alarmed, too. Mom heard and understood every word. Terry was surprised at that. When Mom was dressed I drove her out to sit by the fire. I was trying to decide what to do. Terry thoughtfully called the nurse and reported it. At this stage there isn't anything we can do, but wait for her to wear it off. At the least it would be called a minor overdose. No more pills left laying around!
She confessed to me that she is anxious about my leaving. She wants me to go. She knows I need to go, I should go. I told her I can cancel at any time, and so she feels guilty. She wants me to stay.
Right now she is better. More cognitive, more clear headed.
Thank you for your continued prayers. I depend on them daily. I cannot do this without them. I cannot do this without the Lord's constant, faithful help and tender mercy.
Hopefully this crisis has passed.
Tuesday, February 5, 2013
not much news
The past week has been slightly uneventful...Mom did mention that her foot was bothering her again. When I looked at it I found another blister, this one the size of a large mushroom...maybe as wide as a half dollar. We put a clean white sock on it and her pressure tube-sock. I am hoping that it will reabsorb or drain on its own. Then I will need to keep it dry and clean until the wound heals.
I don't understand the new blister. Her other foot is just fine, not even an abrasion. She must be using that foot to turn over in bed, or get herself up from sitting. The good news is that she feels the sore. (if you can call that good news) Meaning that she still has feeling in her feet. She dreamt that she had it amputated, bit by bit. Usually that happens with diabetes complications like gangrene, which she doesn't have.
She does have a new UTI and yesterday her Urologist gave her an antibiotic. If her foot gets infected, this will help on both problems.
She will stay close to her room all day today so it is not so far to walk to the bathroom.
I don't understand the new blister. Her other foot is just fine, not even an abrasion. She must be using that foot to turn over in bed, or get herself up from sitting. The good news is that she feels the sore. (if you can call that good news) Meaning that she still has feeling in her feet. She dreamt that she had it amputated, bit by bit. Usually that happens with diabetes complications like gangrene, which she doesn't have.
She does have a new UTI and yesterday her Urologist gave her an antibiotic. If her foot gets infected, this will help on both problems.
She will stay close to her room all day today so it is not so far to walk to the bathroom.
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