I have a calendar in my kitchen where I keep track of the aides' hours here. When they both come on schedule, I don't put anything on the calendar—I only note when they don't come; when there is a substitute, etc., so on pay day, I have the info I need right there. I was amazed in February when the whole month was free of my notes—they both showed up every day. I rarely get such continuity for a whole month at a time.
So, that is all unraveling now. My Mon.-Fri. evening aide came on Wednesday with a horrid cold, despite the fact that he's done this before (last year, Vince and I both caught the cold, and I didn't sleep for 3 weeks while I was on phlegm-spitting-up patrol all night for Vince), and I told him to NOT come when he is sick. He would have come back last night, but I told the agency to see if he was still sick and to stay away if he was. He was; and he is still sick today. So the daytime aide brings Vince up to bed at 4:00 when he leaves, and I am on duty myself. I can do it, but it is difficult.
Then my trusty aide who has been with us for years and who comes seven days a week plus weekend evenings (altho he often takes weekend evenings off) announced that he would be taking a vacation on April 16 for 4 and 1/2 weeks (plus, he is taking off this coming Sunday evening). He took a month+ vacation two years ago, and it was just h*ll. I fired two replacements because they were no help; the agency sent some women when they ran out of men and they quit because it was too hard for them to move Vince. My regular aide has no trouble moving Vince in and out of the shower, and all the other ways he gets him around. Everyone else does.
At the very least, I will not even attempt to have Vince showered when my aide is away. I will give him total bed baths, and hope the substitute aide can get him out of bed and downstairs with wheelchair, stair lifts, and my help. Or Vince will be in bed for over a month.
Anyone who reads this please pray for us. It's going to be really really really awful, short of some miracle aide appearing. I've had enough experience with home health aides that this is highly doubtful. I feel I have the best agency available now, after firing many bad ones. The agency I use was recommended by a geriatric care manger I hired briefly for advice years ago. They have more male aides than the others, and I really like the people who run agency. The problem is aides in general—not well trained; not motivated; and they are the bane of my existence—the worst part of this caregiving experience.
Friday, March 15, 2013
Monday, March 11, 2013
The Taunting Fish Face
Things were piling up on me again, but now that Vince is showered, had breakfast, dishes are done, and laundry is in washer, I can exhale. I am going to take a friend to lunch today for her birthday, and I am very much looking forward to sitting in a quiet restaurant, being served yummy food, and talking to a friend.
The aide will give Vince his lunch—since it has to be pureed, I try to make double servings of dinner, so for lunch the following day, the aide can just heat it up. So today for lunch Vince is getting turkey chili with black beans (made by Giant Food, not me), pureed with rice, fresh asparagus and white kidney beans; a side of pureed beets.
Okay, so what about the fish face in my title? Last night, we had pretty awful (let me call it) incontinence "follies" on the way to bed. Aide is here to help, but it takes two—it's a mess. So extra stress there. This morning we had the medication problems. First one went fine in the pureed tropical fruit. Second med, Vince's mouth clamps up, and his lips pucker out like a fish; this means he is stuck and will neither swallow nor spit it out. I look at that stony face of his with no emotion and feel that he is just taunting me. I know that's not true; I'm sure he loves me, but FXTAS has taken all the emotion out of him. It has been like this for YEARS. At this point, as I feel the stress rising, I leave him in God's capable hands, and go get my coffee. Vince eventually swallows what's in his mouth, only to get stuck again on the next mouthful. This is where I give up, get out the syringe, and suction it out because the aide is here and time to get him out of bed.
One of the most awful things about FXTAS over the years is the fact that Vince can't communicate. He used to say that he loved me if he said anything (YAY!), but I haven't even heard that for months. And has he ever said "thank-you" to me?? I don't think so, unless it was too long ago for me to remember.
Thank God for God is what I always say, because I sit down to read my morning prayers (new ones every day from the Magnificat prayerbook), and God speaks to me and comforts me through these prayers. So often, they relate to what I am suffering through. It is a miracle. Vince is not and will not be there for me, but God is and always will be. Again, thank God for God!
The aide will give Vince his lunch—since it has to be pureed, I try to make double servings of dinner, so for lunch the following day, the aide can just heat it up. So today for lunch Vince is getting turkey chili with black beans (made by Giant Food, not me), pureed with rice, fresh asparagus and white kidney beans; a side of pureed beets.
Okay, so what about the fish face in my title? Last night, we had pretty awful (let me call it) incontinence "follies" on the way to bed. Aide is here to help, but it takes two—it's a mess. So extra stress there. This morning we had the medication problems. First one went fine in the pureed tropical fruit. Second med, Vince's mouth clamps up, and his lips pucker out like a fish; this means he is stuck and will neither swallow nor spit it out. I look at that stony face of his with no emotion and feel that he is just taunting me. I know that's not true; I'm sure he loves me, but FXTAS has taken all the emotion out of him. It has been like this for YEARS. At this point, as I feel the stress rising, I leave him in God's capable hands, and go get my coffee. Vince eventually swallows what's in his mouth, only to get stuck again on the next mouthful. This is where I give up, get out the syringe, and suction it out because the aide is here and time to get him out of bed.
One of the most awful things about FXTAS over the years is the fact that Vince can't communicate. He used to say that he loved me if he said anything (YAY!), but I haven't even heard that for months. And has he ever said "thank-you" to me?? I don't think so, unless it was too long ago for me to remember.
Thank God for God is what I always say, because I sit down to read my morning prayers (new ones every day from the Magnificat prayerbook), and God speaks to me and comforts me through these prayers. So often, they relate to what I am suffering through. It is a miracle. Vince is not and will not be there for me, but God is and always will be. Again, thank God for God!
Sunday, March 10, 2013
New Format - FXTAS Updates
I'm starting up this blog again; now I will post updates on life with my husband's FXTAS.
Daylight Savings Time threw my routine off this morning. I woke up early, like always on Sunday, so I can attempt to get to 10:30 Mass (I say "attempt" because depending on how the morning clean-up, etc. goes with Vince, I don't always make it out on time; on those days, I receive Communion with Vince from the Eucharistic Minister who comes to our home every Sunday).
Of course, at this point in Vince's 14+ years of FXTAS, Daylight Savings Time means nothing to him, physically or mentally. His body just kept sleeping a good extra hour—still on standard time! So, no Mass for me today ....
When he wakes up, I start my grueling routine of clean-up and meds before the aide arrives at 9 a.m. (but actually later—he is never on time). I change the Depends and wash up his bottom while he's in bed (I can't get him out of bed by myself). Then I sit him up in our adjustable bed and give him juice with a straw; sometimes he drinks a lot; sometimes not at all. Sometimes he will take in the juice and hold it in his mouth forever, or until I suction it out of his mouth. Amazing how long he can hold juice in his mouth. I give him three pills, separately crushed in yogurt or pureed canned fruit—one for bladder control; generic Ritalin to wake him up a little; Namenda, recommended by Dr. Randi years ago to help slow the deterioration in his brain, which seems to have held him stable for several years. According to Dr. Granny (which is what I call myself since I've been forced to become a makeshift doctor), I think the Namenda works because it soaks up a glutamate compound, or something like that, and I've read that there is too much of a glutamate compound in the brain in FXTAS. So this makes sense to me. I have a natural fear of medications, so I need to have a good reason for using them.
This morning, Vince only made it through two meds; then he clamped his mouth shut with some fruit in it, which I eventually had to pry out of his mouth (used a toothbrush to brush it out). Lately, he has been NOT taking one or more of the morning meds, occasionally; I'm keeping a record so it doesn't get out of hand. None of them are meds that will hurt him if he misses an occasional dose.
In the middle of the meds routine, I wash Vince's face with his special zinc soap recommended by the dermatologist because he has seborrheic dermatitis (difficult, flaky skin - I call him the incredible peeling man).
If we have time before the aide comes after all this, I roll Vince over on his side and prop up his back, so he gets pressure off his butt for a while. I get my coffee (yay!) and sit down and read morning prayers to Vince.
When the aide comes . . . to be continued. More about the routine later—I'm probably boring you all to death. Vince is downstairs in his recliner now where he spends the day in front of the TV. It's just another normal day in the abnormal FXTAS life:)
Daylight Savings Time threw my routine off this morning. I woke up early, like always on Sunday, so I can attempt to get to 10:30 Mass (I say "attempt" because depending on how the morning clean-up, etc. goes with Vince, I don't always make it out on time; on those days, I receive Communion with Vince from the Eucharistic Minister who comes to our home every Sunday).
Of course, at this point in Vince's 14+ years of FXTAS, Daylight Savings Time means nothing to him, physically or mentally. His body just kept sleeping a good extra hour—still on standard time! So, no Mass for me today ....
When he wakes up, I start my grueling routine of clean-up and meds before the aide arrives at 9 a.m. (but actually later—he is never on time). I change the Depends and wash up his bottom while he's in bed (I can't get him out of bed by myself). Then I sit him up in our adjustable bed and give him juice with a straw; sometimes he drinks a lot; sometimes not at all. Sometimes he will take in the juice and hold it in his mouth forever, or until I suction it out of his mouth. Amazing how long he can hold juice in his mouth. I give him three pills, separately crushed in yogurt or pureed canned fruit—one for bladder control; generic Ritalin to wake him up a little; Namenda, recommended by Dr. Randi years ago to help slow the deterioration in his brain, which seems to have held him stable for several years. According to Dr. Granny (which is what I call myself since I've been forced to become a makeshift doctor), I think the Namenda works because it soaks up a glutamate compound, or something like that, and I've read that there is too much of a glutamate compound in the brain in FXTAS. So this makes sense to me. I have a natural fear of medications, so I need to have a good reason for using them.
This morning, Vince only made it through two meds; then he clamped his mouth shut with some fruit in it, which I eventually had to pry out of his mouth (used a toothbrush to brush it out). Lately, he has been NOT taking one or more of the morning meds, occasionally; I'm keeping a record so it doesn't get out of hand. None of them are meds that will hurt him if he misses an occasional dose.
In the middle of the meds routine, I wash Vince's face with his special zinc soap recommended by the dermatologist because he has seborrheic dermatitis (difficult, flaky skin - I call him the incredible peeling man).
If we have time before the aide comes after all this, I roll Vince over on his side and prop up his back, so he gets pressure off his butt for a while. I get my coffee (yay!) and sit down and read morning prayers to Vince.
When the aide comes . . . to be continued. More about the routine later—I'm probably boring you all to death. Vince is downstairs in his recliner now where he spends the day in front of the TV. It's just another normal day in the abnormal FXTAS life:)
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