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.
Wednesday, January 30, 2013
Cornea Stitch
Sorry to be so late...I meant to get to this Monday.
Mom had been having some terrible discomfort in her right eye, the one where the cornea had been replaced years ago. We used Visine drops and compresses, but nothing took the pain away permanently. I made an appointment with her eye Doctor, but first I would need a referral from Dr. Adey. She was willing to FAX the form over to them as it was somewhat of an emergency. When Sue came on Wednesday she and Tom took Mom in. Dr. Jacobson discovered that one of the stitches holding her new cornea in place had come undone and should be re-set. They needed two people to do the procedure. They did need to numb the eye & area to do it, and now we have some special drops. She is doing much better.
We have increased the home-health-aide visits to three times a week. We try to keep the same aide, (Terry) because Mom really is comfortable with her. However, Terry is not always available on Wednesdays so today we are trying someone new called Penny. In the past Mom has had annoying experiences with some aides and wants to keep with Terry as much as possible. First we thought that we would stay with her regardless of the days she could come, but that wasn't a viable schedule as it confuses Mom when things are not consistent. It will be better to keep with the same days always, instead of the same aide. Terry will come every time she can, and Penny will come on the off days. This will work.
Although it is not a crisis, when Janet and Sue switch days (which they often do) it takes a few moments for Mom to adjust. They don't tell me that they are doing it (which is fine) as I am not to be involved in that program. They get a laugh about it, pretending to be each other.
Mom had been having some terrible discomfort in her right eye, the one where the cornea had been replaced years ago. We used Visine drops and compresses, but nothing took the pain away permanently. I made an appointment with her eye Doctor, but first I would need a referral from Dr. Adey. She was willing to FAX the form over to them as it was somewhat of an emergency. When Sue came on Wednesday she and Tom took Mom in. Dr. Jacobson discovered that one of the stitches holding her new cornea in place had come undone and should be re-set. They needed two people to do the procedure. They did need to numb the eye & area to do it, and now we have some special drops. She is doing much better.
We have increased the home-health-aide visits to three times a week. We try to keep the same aide, (Terry) because Mom really is comfortable with her. However, Terry is not always available on Wednesdays so today we are trying someone new called Penny. In the past Mom has had annoying experiences with some aides and wants to keep with Terry as much as possible. First we thought that we would stay with her regardless of the days she could come, but that wasn't a viable schedule as it confuses Mom when things are not consistent. It will be better to keep with the same days always, instead of the same aide. Terry will come every time she can, and Penny will come on the off days. This will work.
Although it is not a crisis, when Janet and Sue switch days (which they often do) it takes a few moments for Mom to adjust. They don't tell me that they are doing it (which is fine) as I am not to be involved in that program. They get a laugh about it, pretending to be each other.
Monday, January 21, 2013
Post Birthday Party Blues
I guess I'm going to be posting on Monday's instead of Sunday's after all. There is more to tell after her hospice visit, and I actually have more time. So check on Monday nights.
Yesterday after meeting we went to Tom & Sue's for a Hemet birthday party for Helena. Mom had had a really good night's sleep the night before and we actually made it to Sunday School...a first in months. Since Brenda and Helena we here for the long weekend (MLK) she decided to host a family party here for her town-bound folks. Brenda was very very worried because she and Helena had just finished with a bad cold and she thought it was maybe too soon, too risky to expose Gramma. Since the party was outside in the sunshine and breeze, Mom thought she would be fine. Besides, there was birthday cake to eat.
Tim and Edie Brown were still here, so they were invited too. Sue made her wonderful spaghetti, and there was salad and garlic bread and tree-ripened green olives from Corning, Ca. yummy. Mom had liberty with the menu, except maybe too much Parmesan, I thought. No after affects, though.
At 3:00 she announced that she wanted to go home. I was a little surprised as it's usually me that is anxious about the right departure time. She went straight to bed and slept for six hours. I stayed home from Gospel because I didn't want her to wake up and be alone. She is often confused about the time if she wakes up in the dark. She woke at 9:00pm and was hungry and in pain. We took care of both, ( english muffin and hot tea) and had her sit up in her chair for a few hours. At midnight she went back to bed with her night time pills and sleep aid pill and slept until 7:30 this morning.
I guess EVENT days are going to be like this. go go go, and then collapse.
Her nurse this morning was concerned about some new 'cracklings' deep in her lungs...usually a sign of agitated congestive heart failure. No signs of a cold. YAY. All else was good. We had been keeping her blood sugar readings low especially, and her blood pressure low too, so she could have cake and salt and noodles and olives. She was one happy camper!
Monday, January 14, 2013
Today isn't such a good day
I'll try to catch you up on the last few weeks. Mom did terrifically well at Burbank. She behaved herself with the food and got enough rest. We had our Special Supper in the hotel restaurant with Shawn Palmer this year. In the past Anita James has joined us, also Tori Counsel. Mom had Crabcakes, which she says are the best she has ever had. The price seems to go up and up, but to me it is a once in-a-year treat, so we don't mind. (too much)
On Saturday afternoon (1/5, last week) I was washing dishes when I heard something odd, and then found her on the floor of her bedroom. Apparently she had tried to get dressed warmer (putting on her sweatpants) by sitting on the arm of her rocker/recliner. She lost her balance, fell down, and rolled over to the dresser. She remembers hitting her head, and her glasses jabbed her eyebrow.
Frightened, I called Hospice. They asked if we needed assistance. I thought yes, Mom thought not. I could get a neighbor to help lift her. I called Becky and she stayed on the phone as Mom insisted she could get up & Becky is of the school-of-thought to let her. I relented. She slowly got up to her knees and then crawled over to the offending chair. She wrestled her way up to the seat, and then on to the seat, and collasped. Hospice called back and I talked to them awhile, and told them not to send the team, she wasn't cut, broken, or loopy. My second concern was really the thought process that created the fall. Why would she think that was a valid idea?
I am always suspicious of this getting-herself-up procedure, I am so reluctant to let her get up on her own even if she can... she could get up halfway and fall again and really hurt herself, or she could fall on top of me and hurt both of us. It's not that simple. Bill called later in the evening and she was very sweet, but not entirely honest, telling him that it was just a simple slip and she was fine. hmmm.
All week long has been a struggle! She made it to meeting on Sunday OK, and to Gospel. Then the week went downhill from there. Tuesday, Sue was concerned about her slowness, Wednesday, Janet was more concerned about her poor concentration and focus. Thursday, Kelly brought lunch because Becky was home with sick Barry. Friday, Becky noticed the shakiness and the weepies.
Also Terry, her home health aide was very concerned. She'd actually called me at work that Friday afternoon to suggest that we step up her visits to three times a week instead of two. I needed to convince Mom that Terry was there to help her bathe and dress, and that it was not a race. Terry had told me before that Mom seems to always be in a worrisome hurry, as if Terry needs to be finished ASAP, so she can get to other patients. She is actually allotted two hours for travel and care for each patient. Mom was convinced. It will be a good help.
Sometimes at night Mom will wake with a start. Once she got up at four in the morning and rolled her walker down the hall to ask me why I was still awake...as I'm lying in bed looking at her. I guess she saw the night-light on in my bathroom. She often will hug me long and so tight at bedtime, and tell me she loves me.
Saturday night I went in to her room at 9:45 to get her ready for bed. She was sound asleep in front of her TV. I woke her and she jumped out of her skin...looked at the clock and scolded me: "We are going to be so late! Why did you let me sleep so long, and why did you let me sleep in my chair!!!???" It took some doing, but I assured her that weren't leaving for at least 11 hours, it was still Saturday night, I hadn't give her her sleeping pill yet, and she could still go to bed.
But on Sunday she was so tired and still quite sore. She didn't want to get up, or eat, or get dressed. This is a first. Usually she is so ready when it's time to get up. She spent the day in bed. Daniel was in town so he popped over for a long visit between Breaking of Bread and lunch. ( he'd driven off before I could give him keys, or tell him the lay of the land...so he tapped on her bedroom window to have her get up out of bed and let him in....grrr) Sue brought her lunch from the buffet when she was done eating herself and spent the early afternoon there. I came home @ three and Mom was sleeping again. I stayed with her until Gospel, then came home and sat with her through a British comedy & then a mystery, then put her back to bed.
Today she had her weekly session with her visiting nurse and her extra visit with Terry. The nurse was straight-forward and told us that Mom was on one of two trajectories. Either this decline was a residual symptom from the fall; that she could be sore and achy for weeks, including the emotional damage of the mistake, or she could be on another plane entirely, that being, and this was more serious, evidence of her CHF worsening. I can only leave this with the Lord, as He knows all, and cares for her more than I do. He has given me such divine patience now, and a most evident grace. I have told Mom, "If the Lord calls you home, He wants you with Him now, and you should go."
I also put back another chair in her room. I had taken it out for more space. Live & learn!
On Saturday afternoon (1/5, last week) I was washing dishes when I heard something odd, and then found her on the floor of her bedroom. Apparently she had tried to get dressed warmer (putting on her sweatpants) by sitting on the arm of her rocker/recliner. She lost her balance, fell down, and rolled over to the dresser. She remembers hitting her head, and her glasses jabbed her eyebrow.
Frightened, I called Hospice. They asked if we needed assistance. I thought yes, Mom thought not. I could get a neighbor to help lift her. I called Becky and she stayed on the phone as Mom insisted she could get up & Becky is of the school-of-thought to let her. I relented. She slowly got up to her knees and then crawled over to the offending chair. She wrestled her way up to the seat, and then on to the seat, and collasped. Hospice called back and I talked to them awhile, and told them not to send the team, she wasn't cut, broken, or loopy. My second concern was really the thought process that created the fall. Why would she think that was a valid idea?
I am always suspicious of this getting-herself-up procedure, I am so reluctant to let her get up on her own even if she can... she could get up halfway and fall again and really hurt herself, or she could fall on top of me and hurt both of us. It's not that simple. Bill called later in the evening and she was very sweet, but not entirely honest, telling him that it was just a simple slip and she was fine. hmmm.
All week long has been a struggle! She made it to meeting on Sunday OK, and to Gospel. Then the week went downhill from there. Tuesday, Sue was concerned about her slowness, Wednesday, Janet was more concerned about her poor concentration and focus. Thursday, Kelly brought lunch because Becky was home with sick Barry. Friday, Becky noticed the shakiness and the weepies.
Also Terry, her home health aide was very concerned. She'd actually called me at work that Friday afternoon to suggest that we step up her visits to three times a week instead of two. I needed to convince Mom that Terry was there to help her bathe and dress, and that it was not a race. Terry had told me before that Mom seems to always be in a worrisome hurry, as if Terry needs to be finished ASAP, so she can get to other patients. She is actually allotted two hours for travel and care for each patient. Mom was convinced. It will be a good help.
Sometimes at night Mom will wake with a start. Once she got up at four in the morning and rolled her walker down the hall to ask me why I was still awake...as I'm lying in bed looking at her. I guess she saw the night-light on in my bathroom. She often will hug me long and so tight at bedtime, and tell me she loves me.
Saturday night I went in to her room at 9:45 to get her ready for bed. She was sound asleep in front of her TV. I woke her and she jumped out of her skin...looked at the clock and scolded me: "We are going to be so late! Why did you let me sleep so long, and why did you let me sleep in my chair!!!???" It took some doing, but I assured her that weren't leaving for at least 11 hours, it was still Saturday night, I hadn't give her her sleeping pill yet, and she could still go to bed.
But on Sunday she was so tired and still quite sore. She didn't want to get up, or eat, or get dressed. This is a first. Usually she is so ready when it's time to get up. She spent the day in bed. Daniel was in town so he popped over for a long visit between Breaking of Bread and lunch. ( he'd driven off before I could give him keys, or tell him the lay of the land...so he tapped on her bedroom window to have her get up out of bed and let him in....grrr) Sue brought her lunch from the buffet when she was done eating herself and spent the early afternoon there. I came home @ three and Mom was sleeping again. I stayed with her until Gospel, then came home and sat with her through a British comedy & then a mystery, then put her back to bed.
Today she had her weekly session with her visiting nurse and her extra visit with Terry. The nurse was straight-forward and told us that Mom was on one of two trajectories. Either this decline was a residual symptom from the fall; that she could be sore and achy for weeks, including the emotional damage of the mistake, or she could be on another plane entirely, that being, and this was more serious, evidence of her CHF worsening. I can only leave this with the Lord, as He knows all, and cares for her more than I do. He has given me such divine patience now, and a most evident grace. I have told Mom, "If the Lord calls you home, He wants you with Him now, and you should go."
I also put back another chair in her room. I had taken it out for more space. Live & learn!
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