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:)
Tuesday, March 9, 2010
Rx for Healthcare - A Strong Dose of Compassion
When I saw the pro-public option healthcare demonstration in D.C. today on the news, I cheered! It seems that although so many people would like a public option for health insurance, most of what we see on the news shows is about those opposing health reform measures.
I want a public option! I am unemployed as I care full-time for a totally disabled husband who requires very expensive home health aides to get him/us through each day. Although I am healthy so far, my insurance premiums go up 50% every year! And I still pay deductibles, co-pays, and more. We still pay big bucks for my husband's medications also, when we hit the Medicare drug "donut hole" and they won't pay any more. And we pay big bucks for drugs that Medicare considers "tier four" and will pay only a tiny percent of the cost.
The demonstration in D.C. today was aimed at health insurance company executives who were having a meeting there. As much as I dislike health insurance companies because of their objective of making profits, they are not the only ones at fault for our horrid health system. The real demon is selfishness - selfishness which is shared by those in many groups: a) the selfishness of health insurance companies who want to make as much money as they can; b) the selfishness of drug companies who need HUGE profits so they can advertise their drugs in all the media and bribe doctors to give out their drugs (drugs should not be advertised; if we need them, our doctors should know that! No "ask your doctor about....." Pffff!); c) the selfishness of Americans who are pleased with their insurance situation and don't want any government interference in private lives, even if they can keep what they have re health insurance while the government helps others - they see this as a first step toward Big Brother-type government taking over of our lives; d) exorbitant costs of too many tests given to patients because a patient's various doctors do not communicate effectively with each other; e) the selfishness of lawyers who wage frivolous lawsuits against doctors that are not always called for, raising rates of doctor's liability insurance, thus raising doctor's fees.
And the confusion of all the various insurance plans and drug plans!! OMG!! It is virtually impossible to choose the "best" plan for you by wading through all the different scenarios of premium vs. deductibe vs. zillions of other variables. Then some people want to expand choices across state lines - we need more choice????? HELP! I want a public option - I want Medicare; although imperfect, Medicare is way preferable to what I've got in my private plan. I'm just not old enough for Medicare yet.
And then, the doctors' office staffs have to contend with all of these zillion different plans - that is expensive also for the doctors, not to mention downright maddeningly frustrating.
A recent article in TIME magazine placed America behind the other Western countries (Canada, France, Great Britain, etc.) that have public insurance with regard to life span. Therefore, our private system is NOT delivering the best healthcare.
The healthcare mess in Congress is just that - a mess! Everyone squabbling over their own narrow selfish interests or those interests that pay politicians to squabble for them. If any health reform happens, it won't be very different from what we have now, I fear, and I certainly don't expect any difference to be made in my own situation of no income and HUGE medical expenses and health insurance premiums.
So, what would Jesus do? Jesus would work toward a solution that would benefit everyone. If people weren't so consumed with selfishness, we wouldn't need a Government because we would all help each other in our communities. But that isn't the case. There are many, many wonderful giving, unselfish people, of course - but theirs are usually not the voices out there fighting for their interests. Our Congresspeople should be looking toward the good of everyone; then we could have "trickle down" compassion. Wouldn't that be great? But love of money and selfishness are so rampant in our society that they are the greatest illnesses we have - illness of spirit of a society where so many reject God and His ways of love and compassion. Until that great illness is cured, I can't see that help for our physical illnesses will become easier to obtain.
But that's just my opinion, from my own little corner.
I want a public option! I am unemployed as I care full-time for a totally disabled husband who requires very expensive home health aides to get him/us through each day. Although I am healthy so far, my insurance premiums go up 50% every year! And I still pay deductibles, co-pays, and more. We still pay big bucks for my husband's medications also, when we hit the Medicare drug "donut hole" and they won't pay any more. And we pay big bucks for drugs that Medicare considers "tier four" and will pay only a tiny percent of the cost.
The demonstration in D.C. today was aimed at health insurance company executives who were having a meeting there. As much as I dislike health insurance companies because of their objective of making profits, they are not the only ones at fault for our horrid health system. The real demon is selfishness - selfishness which is shared by those in many groups: a) the selfishness of health insurance companies who want to make as much money as they can; b) the selfishness of drug companies who need HUGE profits so they can advertise their drugs in all the media and bribe doctors to give out their drugs (drugs should not be advertised; if we need them, our doctors should know that! No "ask your doctor about....." Pffff!); c) the selfishness of Americans who are pleased with their insurance situation and don't want any government interference in private lives, even if they can keep what they have re health insurance while the government helps others - they see this as a first step toward Big Brother-type government taking over of our lives; d) exorbitant costs of too many tests given to patients because a patient's various doctors do not communicate effectively with each other; e) the selfishness of lawyers who wage frivolous lawsuits against doctors that are not always called for, raising rates of doctor's liability insurance, thus raising doctor's fees.
And the confusion of all the various insurance plans and drug plans!! OMG!! It is virtually impossible to choose the "best" plan for you by wading through all the different scenarios of premium vs. deductibe vs. zillions of other variables. Then some people want to expand choices across state lines - we need more choice????? HELP! I want a public option - I want Medicare; although imperfect, Medicare is way preferable to what I've got in my private plan. I'm just not old enough for Medicare yet.
And then, the doctors' office staffs have to contend with all of these zillion different plans - that is expensive also for the doctors, not to mention downright maddeningly frustrating.
A recent article in TIME magazine placed America behind the other Western countries (Canada, France, Great Britain, etc.) that have public insurance with regard to life span. Therefore, our private system is NOT delivering the best healthcare.
The healthcare mess in Congress is just that - a mess! Everyone squabbling over their own narrow selfish interests or those interests that pay politicians to squabble for them. If any health reform happens, it won't be very different from what we have now, I fear, and I certainly don't expect any difference to be made in my own situation of no income and HUGE medical expenses and health insurance premiums.
So, what would Jesus do? Jesus would work toward a solution that would benefit everyone. If people weren't so consumed with selfishness, we wouldn't need a Government because we would all help each other in our communities. But that isn't the case. There are many, many wonderful giving, unselfish people, of course - but theirs are usually not the voices out there fighting for their interests. Our Congresspeople should be looking toward the good of everyone; then we could have "trickle down" compassion. Wouldn't that be great? But love of money and selfishness are so rampant in our society that they are the greatest illnesses we have - illness of spirit of a society where so many reject God and His ways of love and compassion. Until that great illness is cured, I can't see that help for our physical illnesses will become easier to obtain.
But that's just my opinion, from my own little corner.
Monday, February 1, 2010
My Red Balloon
Did you ever read the book or see the film "The Red Balloon?" My parents gave me the beautiful picture book from the film when I was a child, and I have seen the film several times; I've since gotten a copy of the book for my grandchildren.
It's the story of a little boy named Pascal, who lives in Paris and one day finds a red balloon. It becomes his best friend and constant companion, waiting outside his apartment window for him, when his mother won't allow him to bring it inside. One day a bunch of rough kids capture the red balloon and break it with a stone. While Pascal is sitting next to the broken balloon with his broken heart, slowly all the balloons in Paris come together - all colors of balloons float through the sky and their strings tie together and come to Pascal. He holds onto the strings of the balloon bouquet and is lifted into the air by the balloons, flying away in the sky over Paris. What a beautiful, happy ending!
As I sat by my ill husband's side just now, crying because he rarely talks and because sometimes it just gets to me more than other times, I felt like Pascal sitting beside his broken balloon. Like the red balloon, my husband is very "broken" by his illness, and has been "broken" since we were married almost 11 years ago.
As the balloons of Paris came to Pascal to heal his grief and lift him into the sky, so God has sent me so many new friends and three beautiful grandchildren, all of whom have lifted me up from my grief and who help me endure it every day. My co-well spouses from Well Spouse, new friends from church, and the many activities I do for Well Spouse have given me new life in the face of the depressing illness that I am "married to".
But unlike Pascal, I will not go flying off happily into a sunlit sky, because I will have always lost my husband, because we never had a "normal" marriage, and no matter how many "balloons" God puts in my life, I will always have the pain of the one broken balloon - my husband. Yes, my husband is alive and I'm thankful for that, but his mind is no longer here, and nothing will ever replace that.
So although I know that God has blessed me immensely and is my constant companion and Savior, and though He lifts me up every day to keep going, sometimes I do have to just sit by my broken red balloon and cry.
It's the story of a little boy named Pascal, who lives in Paris and one day finds a red balloon. It becomes his best friend and constant companion, waiting outside his apartment window for him, when his mother won't allow him to bring it inside. One day a bunch of rough kids capture the red balloon and break it with a stone. While Pascal is sitting next to the broken balloon with his broken heart, slowly all the balloons in Paris come together - all colors of balloons float through the sky and their strings tie together and come to Pascal. He holds onto the strings of the balloon bouquet and is lifted into the air by the balloons, flying away in the sky over Paris. What a beautiful, happy ending!
As I sat by my ill husband's side just now, crying because he rarely talks and because sometimes it just gets to me more than other times, I felt like Pascal sitting beside his broken balloon. Like the red balloon, my husband is very "broken" by his illness, and has been "broken" since we were married almost 11 years ago.
As the balloons of Paris came to Pascal to heal his grief and lift him into the sky, so God has sent me so many new friends and three beautiful grandchildren, all of whom have lifted me up from my grief and who help me endure it every day. My co-well spouses from Well Spouse, new friends from church, and the many activities I do for Well Spouse have given me new life in the face of the depressing illness that I am "married to".
But unlike Pascal, I will not go flying off happily into a sunlit sky, because I will have always lost my husband, because we never had a "normal" marriage, and no matter how many "balloons" God puts in my life, I will always have the pain of the one broken balloon - my husband. Yes, my husband is alive and I'm thankful for that, but his mind is no longer here, and nothing will ever replace that.
So although I know that God has blessed me immensely and is my constant companion and Savior, and though He lifts me up every day to keep going, sometimes I do have to just sit by my broken red balloon and cry.
Friday, September 11, 2009
Depressing? Duh!
In the past few years, I've pretty much been in the "new normal" phase of caregiving - that is the phase where a well spouse has made some peace with the spouse's illness and has established a livable daily routine, with only intermittent crises.
The Lord has answered my prayers of years ago by filling my life with blessings, friends, and things to keep my mind busy and distracted from focusing on Vince's illness. So I go along pretty smoothly, with God's grace of course; however, every now and then I just get down, run out of steam, and I guess you'd just call that "depressed." It doesn't last long, and I have learned that it won't, so I don't get upset by it. That's when I stop and realize what I am really living with. I tell myself - Hey, my husband has a degenerative illness; he can barely move; he barely talks; and I have to take care of all his needs (with home health aides, of course, which can also be problems!) - we can't do anything together - NO WONDER I'M DEPRESSED!!! The miracle is that I'm not depressed all the time! And that miracle is by God's grace.
So if I feel temporarily down and out of commission, I cut myself slack because it is really very awful. Of course there are zillions of people with worse lives, but having a husband who always was and always will be practically lifeless is difficult!
I'm not depressed right now - I'm writing this because I think about it often, so thought I'd put it down. It's exercise time, and thank God I can still do that!
The Lord has answered my prayers of years ago by filling my life with blessings, friends, and things to keep my mind busy and distracted from focusing on Vince's illness. So I go along pretty smoothly, with God's grace of course; however, every now and then I just get down, run out of steam, and I guess you'd just call that "depressed." It doesn't last long, and I have learned that it won't, so I don't get upset by it. That's when I stop and realize what I am really living with. I tell myself - Hey, my husband has a degenerative illness; he can barely move; he barely talks; and I have to take care of all his needs (with home health aides, of course, which can also be problems!) - we can't do anything together - NO WONDER I'M DEPRESSED!!! The miracle is that I'm not depressed all the time! And that miracle is by God's grace.
So if I feel temporarily down and out of commission, I cut myself slack because it is really very awful. Of course there are zillions of people with worse lives, but having a husband who always was and always will be practically lifeless is difficult!
I'm not depressed right now - I'm writing this because I think about it often, so thought I'd put it down. It's exercise time, and thank God I can still do that!
Thursday, September 10, 2009
Health Care Reform
Here's my two cents on Pres. Obama's speech before Congress last night:
I believe that the President is very concerned about our healthcare system and how broken it is, and I believe he is trying with everything he has to correct it. He came before Congress last night, looking like a father trying to appeal to his fighting children to come to some agreements rather than the stupid bickering they've been doing. The stony-faced opponents to healthcare reform looked like spoiled, petulant children who don't want to share their toys with their less fortunate brothers and sisters; they want what they want and don't care what "Daddy" Obama says - their minds were closed to compromise. They have lots of money and power and are used to getting their own way.
Obama explained very clearly all the issues involved and what he said made great sense; there was a lot of compromise which brought together concerns of both sides of the argument.
What needs to happen is a change of hearts more than anything. If people did "what Jesus would do," there would be less disagreement, because people would truly work toward what was best for everyone. I'm afraid our democracy has become a money-ocracy in which those with the most money can buy the public policies they want - and those policies are the ones which protect their wealth and power, and to heck with the hardworking people who can't buy the laws we live under.
I believe that the President is very concerned about our healthcare system and how broken it is, and I believe he is trying with everything he has to correct it. He came before Congress last night, looking like a father trying to appeal to his fighting children to come to some agreements rather than the stupid bickering they've been doing. The stony-faced opponents to healthcare reform looked like spoiled, petulant children who don't want to share their toys with their less fortunate brothers and sisters; they want what they want and don't care what "Daddy" Obama says - their minds were closed to compromise. They have lots of money and power and are used to getting their own way.
Obama explained very clearly all the issues involved and what he said made great sense; there was a lot of compromise which brought together concerns of both sides of the argument.
What needs to happen is a change of hearts more than anything. If people did "what Jesus would do," there would be less disagreement, because people would truly work toward what was best for everyone. I'm afraid our democracy has become a money-ocracy in which those with the most money can buy the public policies they want - and those policies are the ones which protect their wealth and power, and to heck with the hardworking people who can't buy the laws we live under.
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