Question for God

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 . . . .

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 . . . .

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!!!!