I feel I am in a crisis today. I had a meltdown from the lack of anything in my marriage. I have endured for 15 years as Vince's caregiver in a marriage without benefits by the grace of God and the help He has sent me, and the peace He has brought me for much of the time.
But I feel I am at a crisis point today—I tried to reach a priest at the church, but being Sunday, no one answered. I couldn't connect to the emergency line for some reason - probably God didn't want me to speak to a priest today. But I will speak to one soon, because I need to know what I can have in my marriage, what I can receive from my husband, when all I hear about marriage from the Church is the mutual, loving partnership of man and woman. WELL, I WANT THAT!!!
My marriage is all about my giving all, and receiving nothing from a totally disabled husband. He cannot even speak a word to me, let alone make me feel loved in any way anymore. We have no history of good times together - he was ill since the beginning with a failing brain. I feel in light of what God wants marriage to be, that I have a RIGHT to receive something from my marriage, not just challenges to make me stronger; I need to feel loved and appreciated and that my husband is even conscious of me! I talk to him and he stares right past me at the TV.
So I want to pose this to a priest, and I have hopes that God will provide an answer. I believe that God has answers that I cannot imagine, and I hope He has an answer for me this time. I'm tired of being brave and so alone. I'm not Wonderwoman, and I'm not a saint. I need to feel loved, especially when I have poured out all I have for my husband. I have other blessings in my life and a lot of wonderful friends, but I need more in my MARRIAGE, not distractions away from it. I want and need something from my marriage, and I pray that God will show me what that is . . . .
Sunday, August 17, 2014
Only My Husband Knows the Truth
I told my husband this morning that only he knows the TRUTH about our marriage. He hasn't spoken in years, so he can no longer say he loves me like he used to; I don't think he ever said thank-you for the care I've given him throughout his illness, which has been as long as our marriage.
We never had a normal marriage without his brain illness, so I have no idea how it might have been. I told Vince today that he knows I have loved him because I tell him and I have given him wonderful, devoted care all these years, and he has been made very comfortable despite his inability to do anything for himself. I know that he understands the words I say, even though they probably fly out of his mind as soon as they are said—no short-term memory.
I know there is a TRUTH about our marriage, and I have trusted God that the TRUTH has been great love between Vince and me. But I get so despondent by Vince's inability to communicate any love towards me, so naturally I doubt this TRUTH. Vince knows if he loves me, but I never again will know this, at least on this side of an eternity in heaven when maybe he can tell me.
I told Vince only he and God have the TRUTH about our marriage. I can only hope and guess . . . .
We never had a normal marriage without his brain illness, so I have no idea how it might have been. I told Vince today that he knows I have loved him because I tell him and I have given him wonderful, devoted care all these years, and he has been made very comfortable despite his inability to do anything for himself. I know that he understands the words I say, even though they probably fly out of his mind as soon as they are said—no short-term memory.
I know there is a TRUTH about our marriage, and I have trusted God that the TRUTH has been great love between Vince and me. But I get so despondent by Vince's inability to communicate any love towards me, so naturally I doubt this TRUTH. Vince knows if he loves me, but I never again will know this, at least on this side of an eternity in heaven when maybe he can tell me.
I told Vince only he and God have the TRUTH about our marriage. I can only hope and guess . . . .
Saturday, August 9, 2014
Home Decor for the Spousal Caregiver
I was watching a show on TV on the Fine Living Network which features unusual homes custom-designed by people to support and complement their unique lifestyles. There was the condo that was mostly kitchen space for the gourmet cook; the home with the secret passageway behind the bookcase leading to the underground wine cellar; the circular, all-windowed, rotating house perched on a pedestal in the woods; etc.
It made me think they could do a segment on my "custom" (ha-ha) caregiver home—how I have turned my suburban split-level into a nursing, rehab center for my ill husband. So let's take the tour:
Let's enter by the front door, where we immediately have a transport chair to our left, and the stairway featuring chair lift. There is another smaller stairway going down to the family room, also outfitted stylishly with a matching chair lift.
The family room is a large area where my disabled husband spends his peaceful days, living every man's dream of sitting in his La-Z-Boy recliner and watching his flat screen TV. The other furniture is old, like most of the furniture in this house which belonged to my husband before I married him— historically old—like from the 1950s! Nothing I ever would have bought, but our lifestyle of spending all our savings on home health aides and my not working due to being a full-time caregiver does not allow for new furniture, unless it is something therapeutic such as the recliner with the automatic lifting mechanism and the chair lifts on the stairs.
Also in the family room is my work center with computer on the very old and splintery desk with drawers that barely open, and my plastic file cabinets and plastic shelves—Target's best! The room is further accented by an assortment of walkers, exercise equipment (it's also my home gym!), and a bookcase that is so old and rickety that it has to lean strategically against the wall to stay up.
Now for the dining room. No longer used to entertain people or family for dinners, the large table is totally covered with my assortment of blenders for pureeing my husband's food; a suction machine which I have yet to be brave enough to use to extract phlegm from my husband's throat; folders of paid bills and records from the weekly payments to the aides.
The master bedroom is decoratively accented by a porta-potty next to the bed; a handicapped bathroom with grab bars, a raised toilet seat, and shower chairs. The bedside table is accented with boxes of baby wipes, adult "underwear" and exam gloves. The dresser is adorned with various ointments and creams for my husband's delicate skin.
There are three other bedrooms, which are mainly storerooms for more incontinence supplies, wheelchair, walkers, and piles upon piles of medical and insurance paperwork.
. . . So, the perfect home for the stylish caregiver!!!
Now for the dining room. No longer used to entertain people or family for dinners, the large table is totally covered with my assortment of blenders for pureeing my husband's food; a suction machine which I have yet to be brave enough to use to extract phlegm from my husband's throat; folders of paid bills and records from the weekly payments to the aides.
The master bedroom is decoratively accented by a porta-potty next to the bed; a handicapped bathroom with grab bars, a raised toilet seat, and shower chairs. The bedside table is accented with boxes of baby wipes, adult "underwear" and exam gloves. The dresser is adorned with various ointments and creams for my husband's delicate skin.
There are three other bedrooms, which are mainly storerooms for more incontinence supplies, wheelchair, walkers, and piles upon piles of medical and insurance paperwork.
. . . So, the perfect home for the stylish caregiver!!!
The "Other Stuff" and Affliction and Consolation
I have been struggling a lot in the past months: the relentless caregiving demands are always there, but it gets really unbearable when all the "other stuff" happens. What I mean by "other stuff" is things breaking in the house and needing repairs or replacements; battling obstacles set up by insurance companies and pharmacies in order to get my husband's prescriptions refilled; my aides being chronically late or taking time off; and all the regular life problems faced by those who are not also caring for a seriously ill spouse. I always said that people doing serious 24/7/365 family caregiving should be spared some of that "other stuff," but we are not.
So things build up—the little problems and annoyances build on top of my default position of life which is the emotional devastation and physical/mental strain of all I have to do for my husband, since he can do nothing. And for the past year or so, he has stopped talking, so there is the added heartbreak of NO communication with the person who should be my life partner and best friend.
I try so hard to walk with God, trying to keep my head down and do my chores, trusting that God has a purpose for all my suffering and work, and trying to let Him make the big decisions without trying to second-guess Him about what will happen to my husband and myself. But lately, I have gotten very angry with God for allowing so much "other stuff" to happen to me. At times, I scream and cry and tell God I cannot keep this up; I have to have some peace in my days, and the stuff just keeps flying at me. I tell God that I can understand His giving me an ill husband to make me grow in faith, but I have to be able to DO it! If He sends me too much stress and trouble, I can't function, I melt down, and what good am I???? What is this accomplishing in God's kingdom???
Recently, I read something about affliction and consolation which may supply an answer. I read that an hour of affliction and suffering is worth more to God than long periods of consolation—consolation being those periods of time in which suffering is removed. I can only hope that that is the Truth: I have been begging so much for consolation lately, but if I could believe that my suffering from all that I'm afflicted with is worth something valuable to God, I could accept it better.
As I have been on my faith journey while caring for my husband, the consolations seem to be getting fewer and more far between. I used to get some kind of kindness or consolation after a particularly difficult day; but now the difficult days can just go on and on, making me feel like I'm living in a very unkind world that is battering and abusing me.
I guess my only recourse is to keep building my trust in God, trying to close my lips (less complaining, although crying is a healthy release) and setting my feet firmly on the ground (instead of feeling like I'm in a tornado). Lord God, I offer up my suffering to You, hoping that You are using it for something good somewhere in Your kingdom! I doubt that I'll ever understand how You're using my suffering, but PLEASE BE USING IT!!!!
So things build up—the little problems and annoyances build on top of my default position of life which is the emotional devastation and physical/mental strain of all I have to do for my husband, since he can do nothing. And for the past year or so, he has stopped talking, so there is the added heartbreak of NO communication with the person who should be my life partner and best friend.
I try so hard to walk with God, trying to keep my head down and do my chores, trusting that God has a purpose for all my suffering and work, and trying to let Him make the big decisions without trying to second-guess Him about what will happen to my husband and myself. But lately, I have gotten very angry with God for allowing so much "other stuff" to happen to me. At times, I scream and cry and tell God I cannot keep this up; I have to have some peace in my days, and the stuff just keeps flying at me. I tell God that I can understand His giving me an ill husband to make me grow in faith, but I have to be able to DO it! If He sends me too much stress and trouble, I can't function, I melt down, and what good am I???? What is this accomplishing in God's kingdom???
Recently, I read something about affliction and consolation which may supply an answer. I read that an hour of affliction and suffering is worth more to God than long periods of consolation—consolation being those periods of time in which suffering is removed. I can only hope that that is the Truth: I have been begging so much for consolation lately, but if I could believe that my suffering from all that I'm afflicted with is worth something valuable to God, I could accept it better.
As I have been on my faith journey while caring for my husband, the consolations seem to be getting fewer and more far between. I used to get some kind of kindness or consolation after a particularly difficult day; but now the difficult days can just go on and on, making me feel like I'm living in a very unkind world that is battering and abusing me.
I guess my only recourse is to keep building my trust in God, trying to close my lips (less complaining, although crying is a healthy release) and setting my feet firmly on the ground (instead of feeling like I'm in a tornado). Lord God, I offer up my suffering to You, hoping that You are using it for something good somewhere in Your kingdom! I doubt that I'll ever understand how You're using my suffering, but PLEASE BE USING IT!!!!
Tuesday, April 30, 2013
God Took My Hands
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.
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.
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:)
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.
Tuesday, September 8, 2009
GRRRR!
Sometimes - like right now - I think the thing I hate the most about Vince's FXTAS is when he won't open his mouth when I have to give him a pill or see if he has swallowed it.
He has started taking Ritalin to see if it will focus his mind a little and wake him up a little. We started with four days of the lowest dose - a very tiny pill which I think is harder for me to get him to swallow than a larger one. We've done this pill in the morning and that has gone down, and I think has made him walk better and be a little more awake. Yesterday I had to up the dose to two pills a day (working up to three, starting in a week). I can't say for sure that he swallowed either of the second pills.
I made the mistake both days of not making sure every little crumb from lunch was out of his mouth - if anything is in his mouth, he will have trouble swallowing a pill. So I put the pill on his tongue, give him water, and the pill is still in his mouth somewhere!! Then he won't open his mouth so I don't know if he chewed it, swallowed it, or if it's just crushed somewhere between his teeth. He won't open his mouth, no matter what I do. So I told my aide to give him more water, and went off to calm down and pray that he in fact swallowed the pill.
I have to remember to clear his mouth before giving him medication - not that that's always possible without making me furious at FXTAS!!!! I don't throw fits anymore - I just walk away and pray - but I still feel hatred for this insidious illness when Vince won't do something simple like just OPEN HIS MOUTH!!
I know I've complained about this before, and I know no one cares, but this is my way of diffusing my frustrations. If Vince does stay on this medication - if it does in fact ever help him - I'll have to find a better way to get it into him. These little pills are horrible!! GRRRRR!
He has started taking Ritalin to see if it will focus his mind a little and wake him up a little. We started with four days of the lowest dose - a very tiny pill which I think is harder for me to get him to swallow than a larger one. We've done this pill in the morning and that has gone down, and I think has made him walk better and be a little more awake. Yesterday I had to up the dose to two pills a day (working up to three, starting in a week). I can't say for sure that he swallowed either of the second pills.
I made the mistake both days of not making sure every little crumb from lunch was out of his mouth - if anything is in his mouth, he will have trouble swallowing a pill. So I put the pill on his tongue, give him water, and the pill is still in his mouth somewhere!! Then he won't open his mouth so I don't know if he chewed it, swallowed it, or if it's just crushed somewhere between his teeth. He won't open his mouth, no matter what I do. So I told my aide to give him more water, and went off to calm down and pray that he in fact swallowed the pill.
I have to remember to clear his mouth before giving him medication - not that that's always possible without making me furious at FXTAS!!!! I don't throw fits anymore - I just walk away and pray - but I still feel hatred for this insidious illness when Vince won't do something simple like just OPEN HIS MOUTH!!
I know I've complained about this before, and I know no one cares, but this is my way of diffusing my frustrations. If Vince does stay on this medication - if it does in fact ever help him - I'll have to find a better way to get it into him. These little pills are horrible!! GRRRRR!
Sunday, August 23, 2009
Giving it to God
Now that I know God is definitely up there (as well as down here with us), I have been really trying to hand my life and struggles over to Him, because I so often feel helpless and clueless with making up Vince's care as I go along - which is what it amounts to. With God's help, I have taken excellent care of Vince so far, and I hope He keeps leading me - of course God will lead me; I have to pray that I will be able to know what God is leading me to do.
It's been a relief lately that I have been able to hand to God trying to get Vince to walk. Sometimes Vince can walk - with lots of help from me and our aide - and sometimes not. I was having trouble trying to push it too much, and just getting myself upset when Vince wasn't walking. What I have started doing is - every time we get Vince up to walk (which is only a few times each day), I ask God that if it is His will, to please help Vince walk. If not God's will that Vince walks, I will have him sit in his walker or wheelchair and ride. This has worked well for me. Sometimes, Vince does walk, and sometimes not. But I know I have handed it to God; so when I get to the point BEFORE I stress myself out trying to get Vince to walk, I have him sit and ride the rest of the way. This has worked much better for me; and it's better for Vince when I don't push and get upset.
Sometimes God wants to do things for us, but waits for us to ask for Him. And if not, we have to accept His will, because it is ultimately what is best for us. God wants us to be peaceful. So many times over the past years, it seems that He tells me "Stop struggling." I know I have pushed too hard, because I want Vince to keep whatever strength and abilities he can. I just never knew where to draw the line. By handing it to God, I can know where to draw the line, and know that I have done all I could.
It's been a relief lately that I have been able to hand to God trying to get Vince to walk. Sometimes Vince can walk - with lots of help from me and our aide - and sometimes not. I was having trouble trying to push it too much, and just getting myself upset when Vince wasn't walking. What I have started doing is - every time we get Vince up to walk (which is only a few times each day), I ask God that if it is His will, to please help Vince walk. If not God's will that Vince walks, I will have him sit in his walker or wheelchair and ride. This has worked well for me. Sometimes, Vince does walk, and sometimes not. But I know I have handed it to God; so when I get to the point BEFORE I stress myself out trying to get Vince to walk, I have him sit and ride the rest of the way. This has worked much better for me; and it's better for Vince when I don't push and get upset.
Sometimes God wants to do things for us, but waits for us to ask for Him. And if not, we have to accept His will, because it is ultimately what is best for us. God wants us to be peaceful. So many times over the past years, it seems that He tells me "Stop struggling." I know I have pushed too hard, because I want Vince to keep whatever strength and abilities he can. I just never knew where to draw the line. By handing it to God, I can know where to draw the line, and know that I have done all I could.
Thursday, August 6, 2009
Sick of Celebrities
I am so very sick of the celebrity culture we live in. I receive a magazine called Neurology Now, a neurology magazine for families dealing with neurological illnesses. I am grateful for the free subscriptions they give and the articles can be informative. But every issue features a celebrity on the cover - a celebrity who either has a neuro illness, or has a family member with one. It's always how so-and-so-celebrity copes with their illness or is a supportive caregiver to a family member. I'll tell you how they cope - THEY GET ATTENTION!! TONS OF ATTENTION AND SUPPORT AND PRAISE FROM ADORING FANS. Not to mention the tons of money they have to hire the best help and treatments.
I know that I would cope much better with my caregiving situation if I got only a fraction of the attention the celebrities get. I definitely feel better about myself and about my situation on the occasional days when I feel supported by others. But I and most of the country's millions of caregivers do not get much attention. We are sidelined and often isolated, feeling invisible. Not that I want to be on the cover of a magazine being praised for caregiving - honestly, I would be embarrassed. I just want to scream that there are millions of sick people and their caregivers who are not getting the attention they need; many of them cannot even afford decent health care.
So, I need to keep realizing that in God's eyes, I am as worthy as any "celebrity caregiver," even though I am virtually invisible to other people; and my husband is certainly as important as any celebrity with an illness although he also is invisible to others.
There - I said my piece - now I will return to my anonymity.
I know that I would cope much better with my caregiving situation if I got only a fraction of the attention the celebrities get. I definitely feel better about myself and about my situation on the occasional days when I feel supported by others. But I and most of the country's millions of caregivers do not get much attention. We are sidelined and often isolated, feeling invisible. Not that I want to be on the cover of a magazine being praised for caregiving - honestly, I would be embarrassed. I just want to scream that there are millions of sick people and their caregivers who are not getting the attention they need; many of them cannot even afford decent health care.
So, I need to keep realizing that in God's eyes, I am as worthy as any "celebrity caregiver," even though I am virtually invisible to other people; and my husband is certainly as important as any celebrity with an illness although he also is invisible to others.
There - I said my piece - now I will return to my anonymity.
Wednesday, August 5, 2009
Little Shop of Horrors
Last night half of one of Vince's upper molars fell out. This has happened before - he's lost a few teeth in the past years. This morning I called our dentist who is the sweetest guy and a really good dentist, certain that he would take care of it as always. Well, he didn't have any time to see Vince this week and is going away next week, so he referred us to an oral surgeon in our neighborhood - made an appt. for us at 11:00.
So, as my stressed caregiver mind feared that we were about to meet the dentist from "Little Shop of Horrors", my aide and I got Vince into the car and we arrived at Dr. K's office at 10:50, in time to fill out the reams of paperwork that are inevitable when you go to a new doctor. And yes, there were reams. After the receptionist made a copy of Vince's dental discount card (which wouldn't give us a discount there, anyway), I filled out pages of Vince's medical history (what I know of it), signed privacy statements, and pledges to pay the bill after services rendered.
Then we sat and waited...and waited...and waited. At 11:20, the receptionist asked if I brought a referral from our dentist - I said no, we were not there, and that our dentist made this appt. for us this morning. This was not good enough - so they needed to have our dentist fax a referral - more waiting time for us.
Meanwhile, they typed up another form for me to sign, giving permission to give novocaine and to extract Vince's tooth, making me aware that either of these procedures carried the myriad risks of infection, dizziness, giddiness, muscle damage, bone damage, jaw damage, high blood pressure, maybe even death - and the list went on. This is what happens from doctors being sued so much. I just ignored it all and signed the form, praying that God would protect Vince from all those hazards. I mean it's only novocaine and a tooth extraction, both of which he (and everyone else) has had numerous times with no problems.
Speaking of praying, at that point I took out my Rosary beads that I had brought along, and silently said a whole Rosary (20 minutes), and we were still waiting! Meanwhile, they asked me if it was Vince's #13 tooth that was the problem - well, I'm not a dentist, I don't know what "number" it is, but to look in his mouth, it's obvious; plus our dentist should have told them.
So finally they took an Xray of Vince's mouth, and then we waited some more.
Two more patients came in meanwhile, and were seen immediately. At 12:00, as I was about to suggest that we return on a day when they actually had time for Vince, they took us in! At this point I was about to cry, but we were finally going to see the grand, high, exalted, mystic dentist! (Actually he was an oral surgeon, which meant "lots more expensive!"). So after two antibiotic pills, Dr. K entered, and was actually quite nice - not at all scary - and he proceeded to start the job by 12:20. We were out of there at 1:00, $445 dollars poorer, and full of instructions for rinsing, soft food, etc. etc. etc., more antibiotics.
Dr. K also gave Vince a script for Vicodin in case he had pain - I won't fill it, because Vince never complains of pain from an extraction; and if he did, ibuprofen would suffice. Don't worry - I won't fill it for myself either, as painful as this caregiving stuff is. God is my Vicodin!
So, as my stressed caregiver mind feared that we were about to meet the dentist from "Little Shop of Horrors", my aide and I got Vince into the car and we arrived at Dr. K's office at 10:50, in time to fill out the reams of paperwork that are inevitable when you go to a new doctor. And yes, there were reams. After the receptionist made a copy of Vince's dental discount card (which wouldn't give us a discount there, anyway), I filled out pages of Vince's medical history (what I know of it), signed privacy statements, and pledges to pay the bill after services rendered.
Then we sat and waited...and waited...and waited. At 11:20, the receptionist asked if I brought a referral from our dentist - I said no, we were not there, and that our dentist made this appt. for us this morning. This was not good enough - so they needed to have our dentist fax a referral - more waiting time for us.
Meanwhile, they typed up another form for me to sign, giving permission to give novocaine and to extract Vince's tooth, making me aware that either of these procedures carried the myriad risks of infection, dizziness, giddiness, muscle damage, bone damage, jaw damage, high blood pressure, maybe even death - and the list went on. This is what happens from doctors being sued so much. I just ignored it all and signed the form, praying that God would protect Vince from all those hazards. I mean it's only novocaine and a tooth extraction, both of which he (and everyone else) has had numerous times with no problems.
Speaking of praying, at that point I took out my Rosary beads that I had brought along, and silently said a whole Rosary (20 minutes), and we were still waiting! Meanwhile, they asked me if it was Vince's #13 tooth that was the problem - well, I'm not a dentist, I don't know what "number" it is, but to look in his mouth, it's obvious; plus our dentist should have told them.
So finally they took an Xray of Vince's mouth, and then we waited some more.
Two more patients came in meanwhile, and were seen immediately. At 12:00, as I was about to suggest that we return on a day when they actually had time for Vince, they took us in! At this point I was about to cry, but we were finally going to see the grand, high, exalted, mystic dentist! (Actually he was an oral surgeon, which meant "lots more expensive!"). So after two antibiotic pills, Dr. K entered, and was actually quite nice - not at all scary - and he proceeded to start the job by 12:20. We were out of there at 1:00, $445 dollars poorer, and full of instructions for rinsing, soft food, etc. etc. etc., more antibiotics.
Dr. K also gave Vince a script for Vicodin in case he had pain - I won't fill it, because Vince never complains of pain from an extraction; and if he did, ibuprofen would suffice. Don't worry - I won't fill it for myself either, as painful as this caregiving stuff is. God is my Vicodin!
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