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. 

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.

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.

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!

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:)

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.

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.