anniversary - continued

Despite my pre-anniversary "apprehension", when the day finally came, it threw me into such a depression that I couldn't write about it at the time. It was worse than I thought it would be.

The one good thing about the day was the beautiful weather which enabled me and our aide to take Vince to Mass at noon (it's very difficult to get Vince anywhere, so he doesn't go to church anymore - a visiting minister from the church brings him Communion every Sunday). We marked the day by both receiving Holy Communion on an anniversary for the first time. (At our wedding, which was a Catholic wedding, I was not to be a Catholic for five more years, so only Vince received Communion.) I felt good about that and the church was beautiful with the post-Easter flowers.

But a few hours later that afternoon, I just got so depressed and fell apart, crying and crying. Vince was having one of his less-alert days, so he wasn't talking at all, let alone being aware that we should be celebrating lasting together for 10 years of this catastrophic illness of his.

By that night, I was crying out my despair to my Facebook friends and the Well Spouse forum. Friends were supportive, but nothing could replace my husband's lack of ability to do anything! It seemed that the years of progress I had achieved as a Catholic with my new faith in God were just being destroyed - I wanted so much for our marriage to mean something and felt so EMPTY. The feelings I felt so strongly were EMPTINESS and BARRENNESS.

I had assumed I would have gotten us some gooey chocolate cake, which I like to do on special occasions, but I was afraid if I ate chocolate, I'd just get more depressed. I tried a glass of wine, which I rarely do, and it did nothing.

The next day was thankfully my granddaughter's 3rd birthday party which I was able to go to, and had a great time as I always do with my daughters and grandbabies. But that night I was losing it again, and just got angry at Vince's illness, angry that everything was so meaningless, and angry that there could be no celebration.

Then the next morning, Sunday morning, I realized that I was really out of balance, and needed to just do something for ME - like buy myself a gift or whatever. But I couldn't think of anything that would make me feel better - nothing in this world could replace my husband's lack of health. I realized that this was something only God could heal in me. Then I remembered that our church was having an extra hour of Confession that day because it was Divine Mercy Sunday. It's usually very difficult for me to get to Confession because hours are limited, and don't mesh really well with when my aides are here. But I went that Sunday afternoon, spoke to my priest, and he knew just what to say to turn me around again. It was amazing! God spoke through the priest, and was able to restore the positive perspective that I had worked and prayed for for several years. And I have been okay since then - and it's over a week later.

I get small bouts of depression now and then - who wouldn't with a husband whose mind has been taken from him as well as his physical abilities? But my walk with God has taught me that there really is another way to see this situation, and that I really am blessed in so many ways.

So this past weekend, I finally bought the big piece of gooey chocolate cake, and Vince and I shared it on Saturday and Sunday - with ice-cream. That was something we could both enjoy together, so I am thankful for that.

10th Anniversary!

So, in two days it will be my and my ill spouse's 10th wedding anniversary. I am approaching it with a mix of apprehension and a yearning to celebrate. Apprehension because I know we can't have a real celebration because of the Fragile-X illness that has been plopped in the center of our lives since right after our wedding (even before, but I didn't realize at the time that my husband's cognitive abilities were being compromised). But I also want to shout from the rooftops that WE MADE IT TO 10 YEARS AND STILL LOVE EACH OTHER COMPLETELY!!! And I also want to shout that GOD HAS BEEN THE NECESSARY THIRD THREAD OF OUR MARRIAGE (AS WE WERE TOLD BY THE PASTOR AT OUR WEDDING), AND GOD HAS ENABLED US TO ACHIEVE 10 YEARS OF MARRIAGE.

For the past couple of years, our well spouse/ill spouse life has stabilized (for now, anyway) and things have been relatively peaceful. I have enough help from home health aides that I can have a life of sorts, and my husband Vince is safe and content in his own home. Before things stabilized, however, we had years of struggling with getting a diagnosis of Vince's mysterious illness and keeping up with all of his physical and mental deterioration. There were times in the early years of our marriage when I wasn't sure Vince really loved me anymore - that my marriage to him was some sort of a cosmic joke. I didn't realize he was having cognitive deficits because his brilliant brain was atrophying.

Luckily, I was drawn into Catholicism, Vince's faith, when his priest came to visit us. I really didn't think I wanted to be Catholic, but I read the books the priest kindly gave me. One book gave stories of people in horrible situations who placed their lives in God's hands and ended up being okay! I wanted to see if that could happen to me (it did, after some years of building a relationship with God!). Another book, which explained the Catholic faith, in its discussion of marriage, said that God promises to stay in the marriage and help the couple through difficulties. Well, I never forgot that one sentence, and would call on God when Vince and I would be having an awful time communicating and I was feeling totally desperate - peace would then descend on us. God has been faithful to me as I have stayed close to Him through this whole 10-year journey. I just handed over my life to Him, not knowing what to do several years ago, and I watched for His answers in the form of people and opportunities that He placed in my life (this includes finding Well Spouse!).

Meanwhile, Vince tells me often that he loves me with all his heart - and he has trouble saying anything, for the most part - very few words come out of his mouth these days. And I do believe him and love him too. This is miraculous, considering how not-fun and not-easy our life together has been.

So, as for our 10th anniversary, I have been asking God to just show us His presence on that special day. I hope it can be a special day in some way. I'll let you all know....

A Well Spouse Easter

Holidays are usually rough on well spouses, depending on how ill the ill spouse is. My husband is totally disabled in mind and body, so this tends to make holdiays even more depressing than regular days. The regular days have become more routine and less depressing as I have achieved a level of balance with my situation (at least for now, until the next crisis!).

Holidays get pretty lonely, though. I went to Mass this morning, anxious to see the church alive with flowers and joy after the solemness of Lent. It was mobbed, as I expected, and traffic getting in was difficult. But what I didn't expect was when I got into the church and it sounded like the bleachers at a sports event. Whereas at Mass, it is always quiet and most people come in and get down on their knees for some quiet prayer before Mass starts, today it was full of non-kneeling people chattering about everything except the Lord whose Resurrection we celebrate today.

Like one of my fellow well spouses who has called herself a curmudgeon after 30 years of caregiving, I was feeling curmudgeonly myself in church, and irritated that I could not have quiet time with Lord as I always do before Mass (that's what keeps me sane as a well spouse!). When Mass started, it quieted down and Mass was lovely. After Mass, I stayed a few minutes after the others had left to have my quiet time with the Lord. That was calming, and I didn't have to deal with the traffic getting out.

Now for the rest of the day. It is lonely seeing all the families at church, knowing they're going home for their "normal" family celebrations. My husband and I are alone today, except for our home health aides. I used to make holiday dinners for any of our children that were around, but I ran out of steam for that after a few years of caregiving. Any well spouse will understand that. Besides, my husband can't even eat the Easter lamb he used to have every year (he would make it - he was a great cook, way better than I am) - he chews meat and then never swallows it, so I have to then pry it out with a spoon. So, I don't give him meat anymore, except for hamburger, which we will have for our Easter dinner tonight - he loves that too.

Usually on holidays I try especially to be good to myself - try to relax in some way - play piano, watch TV, read - when the basic chores are done. I suppose I'll do that today. My husband doesn't care or isn't aware of holidays or anything, so he's just fine - always quiet and content. Barely talks. Ever.

So that's it! God is good and I know I'll be fine, and I'm not as depressed as I used to get on holidays. If I start to feel sad, or even cry, I know it's okay - it's normal to feel sad in my situation and I know that it passes. These days, I am okay more than non-okay, so I can deal with the sadness, by God's grace. I know that I can always read God's words in the Bible or prayer books - and that always comforts me. So I'm okay. I'm not alone - God is very much with me, and He is the best company one could have!

More Than We Can Handle?

People, including myself a few years ago, can be very cynical about the cliche "God doesn't give us more than we can handle." I was feeling buried way under more than I could handle in my first years of marriage and caregiving to my husband (the caregiving followed close on the heels of the wedding!). But the more I got to know God and the more I trusted Him to guide my life, and the more miracles I saw in my life to help me cope, I realized that God doesn't give us more than we can handle, BUT BUT BUT the catch is: we have to handle it with God. He doesn't allow more bad stuff to happen to us than we can handle WITH HIS HELP. Because, with God's help, I have been able to handle it, and the less awful it has become and the more blessings I see in my life and my marriage to my very mentally/physically impaired husband. And I have gained a lot of emotional growth and self-respect. The only credit I take for what I have accomplished physically and emotionally over the years is that I have allowed God to help me and have constantly asked for His help - He has performed miracles day after day - and on days when I get really down, I know that He will lift me up somehow - because it has happened time and time again.

Roses from Heaven

As some of my friends know, I have a small rosebush in my front yard that I call my “miracle bush” from God. I have never worked on grooming or pruning this bush (I don’t do yard work at all), but every so often it blooms beautiful dark-pink roses.
Roses are very special to me – I’ve loved them since I was a child and used to get bunches of them from my Great Uncle Benny’s rosebushes (he loved yard work!). My husband Vince had always given me roses on birthdays and other special occasions, as well as sometimes for no reason at all – “just for being me”, he would say.
Since his awful illness struck several years ago, leaving him physically and mentally disabled, there have of course been no more roses from him. But it seems that God in His great love has sent me roses on my little bush. For the past few years, since I started noticing it, roses have bloomed on my birthday, which is in October – not exactly rose-blooming season. On my past two birthdays, the day before there were slightly burgeoning blooms, but there would be rain storms which you might think would have destroyed them. Then on my birthday, there was at least one perfect rose – perfect! At least one rose has also bloomed on Mother’s Days. (And we have a large tree that blooms pink blossoms every year on our Anniversary in April – okay, spring is blossom time, but the tree waits till our anniversary to open!).
Once in the past year, we had a terrible storm, and the next day my rosebush was all bent over on the ground – as it is, half of the bush is buried under a large azalea bush. I believed that God would raise up the bush again – and He did – and roses even bloomed in the darkness under the azalea bush – God shines His light in all the dark places!

Today, Sept. 8, the Catholic Church celebrates the birth of the Blessed Virgin Mary. This morning I read in Presentation Ministries’ “One Bread One Body” that Mary loves to give us gifts on her birthday. Of course, she has given us the greatest gift of all, her son Jesus. In addition, she is the perfect role model of a mother, bearing the grace of perfect love, perfect patience, and perfect goodness.
Yesterday I noticed that there was kind of a rose trying to open at the top of my rosebush, but it was pretty scrawny-looking. I was thinking that maybe somehow it would become a perfect rose for Mother Mary’s birthday today. That is exactly what happened – this morning there was a fully-opened dark pink rose, open to the heavens.

Loser? - Not in God's Eyes

Given my present situation, I sometimes fall into the trap of feeling like a "loser". I'm not earning any money; I have no profession despite intelligence, a college degree, and various work experiences; and I see all the other money-earning, accomplished, professional women around me. And it is way too easy to fall into depression when my husband barely moves or talks.

By the grace of God, I have actually made lots of personal progress in the past years, and am usually not depressed anymore. But in the past few days, the "loser" gloom settled over me. Finally this morning, while helping my husband drink a glass of water, I just listened to God. He told me that what I was doing wrong was measuring myself against the standards of this world - money, prestige, youth, functioning husband, etc. What I need to do is measure myself against God's standards of love, compassion, and self-giving.

So that's what I did: I realized that in God's eyes I am giving my life to caring for my husband; I am devoted to my children and grandchildren; I do some volunteer work for my church and a LOT of volunteer work for the Well Spouse Association (national support org. for spousal caregivers); I say prayers with seniors at a senior daycare center; I support a child in the Philippines; I try to be a reliable friend to my friends and a caring listener. And this in addition to managing my husband's illness and being responsible for EVERYTHING in our lives, without any assistance from and barely any communication with my husband. And then I realized how lucky I was that God has provided me the financial means to not have to work, at least for the near future. We are spending down our savings for the very expensive home health aides that are now totally necessary for my husband's care, but I am trying to trust that when I need to earn money, God will show me a way. In God's eyes, I do not think I'm a "loser." None of us are, because He created and loves all of us.

So God talks to me? you may ask, thinking I'm insane. This has only begun to happen after many years of prayer and looking for answers and looking to see what God does in my life and learning about God's totally loving nature. And amazing things like the following happen: this morning after I heard God tell me to judge myself by His standards and not the world's, I did my daily Bible reading which comprises the daily Mass readings. One of today's passages was Romans 12:2: "Do not model your behaviour on the contemporary world, but let the renewing of your minds transform you, so that you may discern for yourselves what is the will of God - what is good and acceptable and mature." So THAT's telling me, right?

Hello out there!

Hello out there! For the past five years, I have been a caregiver for my husband who has a progressive neurodegenerative condition called Fragile-X Tremor Ataxia Syndrome (FXTAS). He is physically and cognitively disabled. At the beginning of this ordeal, I felt like we were confined to a "punishment corner", not able to do much of anything together. In the ensuing years, I have become a fervent Catholic (my husband's faith) because I have found that God is real - He is very much involved in our lives if we ask Him to be, and He has kept me sane and aware of my many blessings amidst all my grief and sadness.

I was never one to speak out much, but as my faith increases, so do my convictions and opinions of what is going on in the world. I need an outlet to write, so here it is, for what it's worth......