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!!!

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!!!!

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.

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.

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.

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.