Now for a really awesome miracle, certainly confirming my faith in a living, loving God Who will really answer and comfort us if we believe that He will:
Last night I fell into one of my worst crying episodes—the day had piled up one thing after another that was just negative input into my already stressed mind. None of these things were major, but against the backdrop of my already grief-filled, very difficult life, it was more than I could process. I went into my hating-myself-and-my-life mode, feeling like a horrible failure who was being endlessly punished for every misstep I ever took in my life. I felt very used, unappreciated, lonely, and hopeless (for heaven's sake, my husband never talks!!!). I've been in that mental place lots of times in the past, and I always get past them, so I knew I would get past it last night, but just did not know how.
I sat down and just cried it out to God, praying that He could help me, although I could not imagine how. It came into my mind to open the Bible to a random page and read what it said—I've done this many times; sometimes it calms me like a miracle, but sometimes I'll turn to something like 2 Chronicles with stories of kings and battles and that does not help. Last night I was barely in the mood to read even one verse, but I quickly opened the Bible, and it was on Psalm 77.
The Psalm begins:
I cried out to God for help;
I cried out to God to hear me.
When I was in distress, I sought the Lord;
at night I stretched out untiring hands,
and I would not be comforted. [This is exactly how I was feeling! The very first line immediately stopped my crying, because I was so awed; I kept reading and it got even better.]
I was too troubled to speak.
I thought about the former days,
the years of long ago; [I could barely speak because I was crying so much; I WAS thinking about the past, haunted by both the good and bad memories. This is always a mistake; we must keep just moving forward.]
Will the Lord reject forever?
Will he never show his favor again? Has his unfailing love vanished forever?
Has his promise failed for all time? Has God forgotten to be merciful?
Has he in anger withheld his compassion?” [I was feeling very punished, knowing I deserved all my misery, even though I know God forgives us everything that we are sorry for.]
You are the God who performs miracles;
you display your power among the peoples. [By the time I got to this line—even before—I was completely calm and comforted; God had truly performed a miracle for me.]
God didn't make any of my problems go away, but just feeling so awestruck by how He came to me and actually led my hands to this Psalm completely calmed and comforted me. I forgot about the problems and all the negative thoughts in the blazing light of God's love and healing.
Tuesday, April 30, 2013
Sunday, April 28, 2013
The Purpose of Marriage
This morning, in a moment of peace while I was reading the Bible, I remembered what one of our priests said in church a few months ago. He was talking about marriage, and he said that when we get married, we are totally in love and infatuated with our spouse. Of course, life always interferes with this first bliss, sometimes in the form of the tragic, devastating illness of one of the spouses; or in countless other life problems that assault the happy couple.
The priest said: after we get married, God molds our marriages for His greater purpose, which sometimes we can see or sometimes not. God wants to PERFECT our marriages. The main purpose of marriage is to teach us to have the selfless love that God/Jesus has for us, a love so complete that Jesus willingly died for our salvation—for all of us, no matter how rotten we may be. He has given us all a chance for eternal salvation by His death on the Cross. Certainly giving every bit of my physical, mental and emotional strength to Vince's care is by necessity selfless. I give 1000 percent to this marriage; Vince gives not much, but it's not his fault, of course.
Years ago, I gave my life and my marriage to Jesus on the Cross—I think of our marriage being safe and perfect on the Cross with Jesus, and pray that I will meet my husband again in heaven, restored to health.
When I think of what Jesus did for us, my problems pale somewhat.
God is using our marriage to perfect us. I have to admit that as much as I am devastated by Vince's illness and just miss the real him so so so so much, I have grown much stronger and feel that I can rely on God for everything I need. In my weakness and grief, I can be strong and confident that God will carry me through every day, and that He does have a reason for Vince's illness. I see all the wonderful new friends I have made, by virtue of the illness; have found tremendous support in the church (from priests and people!); and have given and received invaluable emotional support from other well spouses in the Well Spouse Assn.
On my better days, I can see real beauty in our marriage. Vince is in no pain and seems perfectly content in his inability to do anything for himself; he doesn't speak any more. Vince always liked to "develop" people, to bring out their hidden talents. He has certainly done that for me in so many ways. Much of this has been extremely painful as I have had to be in charge of everything in our lives (home maintenance, finances, etc.), but with God's help, I have managed. I see people whom God put into my life who have helped me along the way.
So while Vince sits calmly, doing nothing, I am constantly struggling to keep up everything I need to do. It's not fair in human terms—so NOT fair—but I feel that as I have been saving Vince's life, he has been saving my soul and "growing" me into a much better person, whom I am learning to respect and appreciate. I sometimes wonder what would have happened to us had Vince not gotten so ill. Maybe we would not have gotten along; I'll never know that, but I do know that we still love each other completely, and I am better off as far as my own person growth, as horrendously painful as the journey has been. Always HOPE.
The priest said: after we get married, God molds our marriages for His greater purpose, which sometimes we can see or sometimes not. God wants to PERFECT our marriages. The main purpose of marriage is to teach us to have the selfless love that God/Jesus has for us, a love so complete that Jesus willingly died for our salvation—for all of us, no matter how rotten we may be. He has given us all a chance for eternal salvation by His death on the Cross. Certainly giving every bit of my physical, mental and emotional strength to Vince's care is by necessity selfless. I give 1000 percent to this marriage; Vince gives not much, but it's not his fault, of course.
Years ago, I gave my life and my marriage to Jesus on the Cross—I think of our marriage being safe and perfect on the Cross with Jesus, and pray that I will meet my husband again in heaven, restored to health.
When I think of what Jesus did for us, my problems pale somewhat.
God is using our marriage to perfect us. I have to admit that as much as I am devastated by Vince's illness and just miss the real him so so so so much, I have grown much stronger and feel that I can rely on God for everything I need. In my weakness and grief, I can be strong and confident that God will carry me through every day, and that He does have a reason for Vince's illness. I see all the wonderful new friends I have made, by virtue of the illness; have found tremendous support in the church (from priests and people!); and have given and received invaluable emotional support from other well spouses in the Well Spouse Assn.
On my better days, I can see real beauty in our marriage. Vince is in no pain and seems perfectly content in his inability to do anything for himself; he doesn't speak any more. Vince always liked to "develop" people, to bring out their hidden talents. He has certainly done that for me in so many ways. Much of this has been extremely painful as I have had to be in charge of everything in our lives (home maintenance, finances, etc.), but with God's help, I have managed. I see people whom God put into my life who have helped me along the way.
So while Vince sits calmly, doing nothing, I am constantly struggling to keep up everything I need to do. It's not fair in human terms—so NOT fair—but I feel that as I have been saving Vince's life, he has been saving my soul and "growing" me into a much better person, whom I am learning to respect and appreciate. I sometimes wonder what would have happened to us had Vince not gotten so ill. Maybe we would not have gotten along; I'll never know that, but I do know that we still love each other completely, and I am better off as far as my own person growth, as horrendously painful as the journey has been. Always HOPE.
Friday, April 26, 2013
Why I'm Writing This Blog
By the way, to anyone who may be reading this blog, I am NOT writing it to complain about my life. I am writing it to put my complex thoughts in writing because it helps me; and because I am taking this walk of faith in God, and I want to share how God helps me. One of the things that greatly started to build my faith in God was reading stories about other people who had horrendous life situations and how God helped them through it.
Today is another slow day, struggling with Vince's eating—I don't know if he's too tired or if the substitute aide just can't feed him. I have been trying to feed him myself, but still not doing as well as our regular aide who seems to be able to get all the food into Vince. Maybe Vince is just slowing down. All I can do is take that one step at a time and things will become clearer; I will see what I need to see in God's timing.
The weather today is my favorite—sunny, not hot, not cold, gentle breeze, bright blue sky. It came to me this morning to go over the the church and sit in the flower garden there. I'd never done that, and I only had half an hour before I had to start the lunchtime routine, but it was so peaceful there. I sat in front of the large statue of Mary, which says "Queen of the Family—You are our hope; Pray for us." I finished praying the Rosary I had started earlier this morning, and just sat there. I tried not to think, but to just BE there in the presence of our loving Mother Mary who carried the most awful trials with peace, love and calm. She is my role model, and for years I have prayed that I could be just a little bit like her.
The aide is struggling with feeding Vince again, so on I go—my turn to try.
Today is another slow day, struggling with Vince's eating—I don't know if he's too tired or if the substitute aide just can't feed him. I have been trying to feed him myself, but still not doing as well as our regular aide who seems to be able to get all the food into Vince. Maybe Vince is just slowing down. All I can do is take that one step at a time and things will become clearer; I will see what I need to see in God's timing.
The weather today is my favorite—sunny, not hot, not cold, gentle breeze, bright blue sky. It came to me this morning to go over the the church and sit in the flower garden there. I'd never done that, and I only had half an hour before I had to start the lunchtime routine, but it was so peaceful there. I sat in front of the large statue of Mary, which says "Queen of the Family—You are our hope; Pray for us." I finished praying the Rosary I had started earlier this morning, and just sat there. I tried not to think, but to just BE there in the presence of our loving Mother Mary who carried the most awful trials with peace, love and calm. She is my role model, and for years I have prayed that I could be just a little bit like her.
The aide is struggling with feeding Vince again, so on I go—my turn to try.
Thursday, April 25, 2013
At the Bottom
This is what it is like at the bottom. My faith is still there, and always will be, because with God there is always hope and He has the answers; He is in control, and I just have to walk one step at a time, listening to Him speak to my gut.
But today is very difficult. Pressures are building up as I can't be on my normal "get out of the house every day because I have decent help" routine. I've been home too much, on top of which Vince is sleeping more and eating less. We've had these low days before—for both of us—so not really new; but being trapped in here watching him sleep and watching him roll yogurt around in his mouth without swallowing it makes me kind of crazy. I can't focus well on anything; I'm getting the basics done, but am filled with anxiety.
I know we are living on a very tenuous, narrow bridge between life and death. I pray and pray that I am doing things the right way; in my saner moments, I am more confident and feel God's guidance. But I am getting too isolated now inside of my head and inside these walls. Sometimes there is nothing else to do but face the fear and the grief and the sadness and loneliness, walking one step at a time, crying if needed, and just hanging onto the faith that God will guide me safely through the horrendous storms of indecision and worrying that there is more I should do, even though I know there isn't. I have done so much for Vince; no one would have done more. Just keep going one small step at a time . . . . until I am up and running again, and I will be.
But today is very difficult. Pressures are building up as I can't be on my normal "get out of the house every day because I have decent help" routine. I've been home too much, on top of which Vince is sleeping more and eating less. We've had these low days before—for both of us—so not really new; but being trapped in here watching him sleep and watching him roll yogurt around in his mouth without swallowing it makes me kind of crazy. I can't focus well on anything; I'm getting the basics done, but am filled with anxiety.
I know we are living on a very tenuous, narrow bridge between life and death. I pray and pray that I am doing things the right way; in my saner moments, I am more confident and feel God's guidance. But I am getting too isolated now inside of my head and inside these walls. Sometimes there is nothing else to do but face the fear and the grief and the sadness and loneliness, walking one step at a time, crying if needed, and just hanging onto the faith that God will guide me safely through the horrendous storms of indecision and worrying that there is more I should do, even though I know there isn't. I have done so much for Vince; no one would have done more. Just keep going one small step at a time . . . . until I am up and running again, and I will be.
Tuesday, April 23, 2013
God to the Rescue!
It has been a very trying week since my main aide went on vacation. Prayers were answered in that I have decent replacement help. My weekday evening aide is doing shortened weekdays plus his evenings. Last weekend was covered by an aide we employed 7 years ago for a short period; he turned out to be very strong in lifting up Vince and moving him around.
But the weekend was very difficult for many reasons: lots of things were going wrong which didn't need to go wrong (like our stairlift being temperamental and needing me to tweak it constantly—it knew there was a different aide there, I guess). Plus, I only had help till 4:00, and then did evenings on my own with Vince staying in bed. It's always hard learning to work with someone new, and lots of extra work. I was surprised that the weekend aide said he'd come back for two more weekends; when he left I was crying—not because of him, but because I was exhausted from the weekend's trials, and the stairlift on the way back up was the proverbial "breaking straw."
I sat down and prayed the half of a Rosary that I had the strength to pray; then I was up and on my way again.
This morning was the really cool miracle. I am giving Vince bed baths every morning, because only our regular (vacationing) aide can get him in the shower without my involvement and without aggravating me. So as hard as it sounds to wash all of Vince's body parts while he's lying in bed, it really is the better alternative for me. And I feel so good when he's all cleaned up! By the time I finished most of the morning routine before the aide's arrival at 9:30, I was just totally wiped out. Not the first time I felt like that, but I never know how long it will take me to recover. I stood in front of my statue of Virgin Mary in the family room and recited the Angelus prayer that I do every morning, asking Mother Mary to pray for my strength and perseverance. I could barely speak or move; everything seemed so dark and exhausting, and I was just looking for that little sliver of light that is always there—God's light.
I very slowly got my coffee and got back upstairs, and sat down with Vince to read aloud the morning prayers from the Magnificat prayerbook; every day the prayers and Scripture readings are different, and so often do they speak to me! The first Bible verse this morning was the well-known John 3:16: "For God so loved the world that he gave his only Son, so that everyone who believes in him might not perish but might have eternal life." When I read the words "eternal life," I burst out crying and said, "I don't want eternal life; life is too hard!" Of course, not the right thing to say, but the crying cleansed and comforted me, as it often does when God manages to turn my stress to calming tears.
Then came Ps. 5: "To my words give ear, O Lord, / give heed to my groaning. / Attend to the sound of my cries, / my King and my God. / It is you whom I invoke, O Lord. / In the morning you hear me; / in the morning I offer you my prayer, / watching and waiting." God was really hearing my pain and speaking words of comfort. With all He has to do, He is always there for me. I felt completely refreshed by then, which was a good thing, because there were many more trials to overcome, just before breakfast! But I had the strength and the perseverance and have lived to write about it:) These are the occasions which build my faith to the point that I always know God will come to the rescue . . . in His perfect timing.
But the weekend was very difficult for many reasons: lots of things were going wrong which didn't need to go wrong (like our stairlift being temperamental and needing me to tweak it constantly—it knew there was a different aide there, I guess). Plus, I only had help till 4:00, and then did evenings on my own with Vince staying in bed. It's always hard learning to work with someone new, and lots of extra work. I was surprised that the weekend aide said he'd come back for two more weekends; when he left I was crying—not because of him, but because I was exhausted from the weekend's trials, and the stairlift on the way back up was the proverbial "breaking straw."
I sat down and prayed the half of a Rosary that I had the strength to pray; then I was up and on my way again.
This morning was the really cool miracle. I am giving Vince bed baths every morning, because only our regular (vacationing) aide can get him in the shower without my involvement and without aggravating me. So as hard as it sounds to wash all of Vince's body parts while he's lying in bed, it really is the better alternative for me. And I feel so good when he's all cleaned up! By the time I finished most of the morning routine before the aide's arrival at 9:30, I was just totally wiped out. Not the first time I felt like that, but I never know how long it will take me to recover. I stood in front of my statue of Virgin Mary in the family room and recited the Angelus prayer that I do every morning, asking Mother Mary to pray for my strength and perseverance. I could barely speak or move; everything seemed so dark and exhausting, and I was just looking for that little sliver of light that is always there—God's light.
I very slowly got my coffee and got back upstairs, and sat down with Vince to read aloud the morning prayers from the Magnificat prayerbook; every day the prayers and Scripture readings are different, and so often do they speak to me! The first Bible verse this morning was the well-known John 3:16: "For God so loved the world that he gave his only Son, so that everyone who believes in him might not perish but might have eternal life." When I read the words "eternal life," I burst out crying and said, "I don't want eternal life; life is too hard!" Of course, not the right thing to say, but the crying cleansed and comforted me, as it often does when God manages to turn my stress to calming tears.
Then came Ps. 5: "To my words give ear, O Lord, / give heed to my groaning. / Attend to the sound of my cries, / my King and my God. / It is you whom I invoke, O Lord. / In the morning you hear me; / in the morning I offer you my prayer, / watching and waiting." God was really hearing my pain and speaking words of comfort. With all He has to do, He is always there for me. I felt completely refreshed by then, which was a good thing, because there were many more trials to overcome, just before breakfast! But I had the strength and the perseverance and have lived to write about it:) These are the occasions which build my faith to the point that I always know God will come to the rescue . . . in His perfect timing.
Friday, March 15, 2013
Life Unraveling
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.
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.
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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