There will be suffering…

September 17, 2014 | My Jottings

Does it seem to you like people everywhere are going through harder things than you’ve ever remembered? It seems like that to me. Maybe it’s just my age, and I’m more aware. After all, things have been pretty horrible in the world before the calendar flipped the page on the twenty-first century.

I started my seventeenth year in Community Bible Study yesterday and for the next thirty weeks we’re going to study 1 and 2 Corinthians. Already I’ve learned just how unbelievably depraved things were back in the days of Paul the apostle, somewhere around 50 A.D. There were things going on in Corinth that almost made my jaw drop to hear about them, and some of these things were happening in the Church. So maybe things today are just the same old, same old, and there really isn’t anything new under the sun, as Solomon said. I don’t know though.

I have friends who have sorrows that burden my heart so heavily I hardly know what to say to them. Christian parents estranged from their Christian adult children. Parents who have been prevented from seeing their only grandchildren because the family withholding visitation is erring on what they think is the side of truth rather than on the very needed side of mercy. At least that is my perspective.

I’ve written about some of this before and it’s still baffling to me.

I know a Christian family torn apart by the Christian father’s lies and bizarre behavior, and he still doesn’t have a clue that he is the problem. He turns on a dime to attack and betray those he says he loves, then gushes words of devotion to them the next day. He talks incessantly about Jesus and forgiveness and doesn’t understand why he doesn’t have the trust of his wife and respect of his grown children when he still has a pathological lying problem.

I know a man who studies the Bible for hours a day (no exaggeration) and teaches the Bible, yet screams and swears at his sweet family and calls them hateful names for ridiculous infractions you’d think I was totally making up, they’re so inconsequential. When he gives his testimony in public settings, he tells mind-boggling lies about his life to make his “conversion” seem more dramatic. His family has pleaded with him to allow his faith to spill over into his real life, but he just gets more demonic as the days go by.

I know of a man with an exquisitely lovely young wife, and his secret back alley and bathroom stall life was recently exposed, and their romantic little cottage with the chickens and the dogs is no longer home to a newly married couple. She moved away to start anew and he never once apologized for his deviant, destructive choices.

I know believing people whose spouses have been the source of such pain in their lives, they think death seems easier. One dear mother of five I know learned a while back that her Christian husband has been a serial adulterer, says he doesn’t love her anymore, and seems very matter-of-fact about divorcing, and not very broken hearted about what this has done to his children.

And I know a family who seems to be haunted by a spirit of depression. Prayers are prayed, help is sought, Bibles are read and verses memorized, praise music is played, dark spirits are rebuked, and still those family members struggle deeply to stay alive and put one foot in front of the other.

Shall I go on? I think not. But I could. And I’ll bet some of you could list some tragedies of your own, things so deep and painful you don’t really want to talk about it. And maybe you don’t even pray about it much anymore.

And now here comes my latest tale of woe. Yesterday after CBS I drove up to spend the afternoon with Michael in the veterans home where he receives nursing care. I was so excited to see him. One of his favorite meals was served for lunch: hearty helpings of meat loaf, mashed potatoes and gravy, fresh buttered carrots, a wheat roll with butter, and a lemony cheesecake dessert. He and I sat outside on the patio in the beautiful autumn sunshine and I helped him eat his meal. It was peaceful. He wanted to go lay down for a nap after that and we squeezed together in his twin bed, comfy and happy to be together. I thought. Michael then told me he was despairing of life and couldn’t take another day. I burst into tears at this declaration and instead of trying to comfort him and pray for him, I boo-hooed that I couldn’t believe he was adding this burden to my heart since he knows how difficult things are to begin with.

Right around this point Michael’s social worker, a very kind and competent woman, knocked on the door softly, and came in to speak to me about how things have been going with Michael these past couple of weeks. Apparently my patient and gentle husband has been yelling, striking out, running back and forth for hours until sweat drips off his face, and looking for ways to get out of the large bay windows in the dining room of his residence. This is the face of Lewy Body Dementia. This is what happens in the evenings when he goes through an episode, and when it’s all over and the staff can finally help him to lay down and go to sleep for the night, he wakes the next morning quite cheerful, not remembering any of it. In fact, when Michael’s social worker was describing to us what was happening with more frequency, Michael looked shocked and said he would never hit anyone. I completely believed him. I suppose it’s a mercy that when the Lewy Body rears its ugly and grotesque head, Michael isn’t fully conscious of what he’s doing. There are days when his Parkinson’s-afflicted brain won’t let him walk even three steps or speak above a whisper. Then there are times when the Lewy Body disease kicks in and he can run, jump and shout. It almost seems surreal to type all of this, to say that this is what our lives are now.

The staff began documenting when these LBD episodes were happening, to see if they could discern if something was triggering them, to better help Michael. At a meeting yesterday, I was told that they believed they had figured out what was triggering most of his distress, which would then set off terrible hours-long episodes.

Guess what the trigger is?

It’s me.

Yes.

I felt yet another wave of grief wash over me when they gently told me that right after my visits with Michael, these episodes come on. He does better on the days when I’m not there.

He does better on the days I’m not there.  DSCN0882

And they also noted that he becomes upset after I call him on the phone. I’ve been driving up three days a week (and sometimes four) to be with Michael and we usually have a nice, pleasant time together (considering the circumstances), trying to make the best of this. And I’ve been calling him twice a day, once in the morning after his breakfast and once in the evening after his dinner, to be a comfort to him and to tell him how much I love him. They told me my evening call was a trigger for him, since he exhibits some of the “sundowning” behavior that many dementia patients do.

So they compassionately asked me if I would not come up to see Michael so often. They thought two days a week would be good to start, to see if he would do better and have less distress. And they asked if I would only call in the mornings from now on.

It took me some time to process this and to understand that it’s not my presence that’s upsetting to Michael. It’s my departures. He is relatively calm and happy when I’m there. And apparently when I leave to drive home in the afternoons, he just can’t take it. His social worker and one of the head nurses even told me they think that somewhere deep inside Michael thinks that each time I come to see him, I might be there to bring him home.

Lord Jesus, please help us…

I didn’t drive up to see him today. And I won’t go up to see him tomorrow, or the next day.

Today I grocery shopped, and cried. Then I went to Great Harvest to buy French baguettes, and I wiped tears when I got back to the car. I drove to the post office and to the drive-through pharmacy, and I couldn’t stop thinking about how much anguish and pain my decision to place Michael in a skilled nursing care facility has brought to him. When I got home I carried in the groceries, put them away, and sat in my bedroom chair and knitted for a while, tears welling. I did laundry, made a pot of soup and let it simmer all day, and thought about how much my husband would love a steaming bowl of beef vegetable soup at our table with chunks of bread to dip in the broth.

There isn’t one person who has advised that I should bring my husband home, knowing what his prognosis is and how quickly the Parkinson’s with Lewy Body Dementia seems to be advancing. Well, there is one person who thinks it’s a sin that I am not still trying to care for Michael at home. He has no idea what it’s like to care for a person who can hardly do one thing for himself, twenty-four hours a day, seven days a week….but he told me recently in so many words that 1 Timothy 5:8 is my clear mandate. Are you familiar with that verse in the Bible? Here it is:

But if anyone does not provide for his relatives, and especially for members of his household, he has denied the faith and is worse than an unbeliever.

I guess I don’t need to say that the words he offered me did not bring comfort.

Soooo, on that note I think I’ll stop rambling for now. It seems to me like life is getting tough for so many people. I want to walk closely with the Lord and I want Him to comfort me. I want Him to comfort Michael. I want to be a comfort to my friends and family, and I certainly want to be a comfort to my husband. Sometimes I’m not sure how to do that anymore, so I pray. And cry. And pray some more.

Here’s something from the Bible (Amplified Version) that does bring me comfort, the very words of my Savior:

“I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world. [I have deprived it of power to harm you and have conquered it for you.]”

God’s peace to us all,

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Comments

  1. Dorothy Sooter says:

    My heart and my prayers go out to you in this most difficult time. Please do not listen to anyone telling you what is right or wrong to do. No one is walking in your shoes. The love that you and Michael have shared is so very special and God alone will guide you. So very glad that Christy was there with you, she is such a blessing.

  2. Just Julie says:

    Thank you for encouraging me, Dorothy. Please keep Michael in your prayers? Love you… xoxo

  3. Roberta Desalle says:

    While I understand how your departures may cause Michael’s angry acting out, I can’t believe you are the only reason for his aggressive behavior. I cannot imagine how you or any untrained person could manage one of his outbursts in your home setting. The condition sounds very unpredictable in terms of what could set him off. That said, I think they are probably right about decreasing your contacts, since he does not understand why the two of you have to live separately now. I think the decrease might also help you develop what you will do with yourself and your time, since he now lives where he will be staying.
    You are endlessly compassionate towards others, Julie, but there is no suffering like one’s own suffering—one’s own Cross. You are carrying it well,as I see it.

  4. Connie Parkinson says:

    I see by your actions that you have very clearly fulfilled the scripture in 1 Timothy of “providing for your relatives. ” ( “members of your household”) You have made sure Michael has the very best of care by kind, qualified professionals, in a highly respected, safe and beautiful facility. You have not done what is most comfortable for you and Michael, but what is BEST for Michael. That IS provision. That is sacrificial love. No one could ask for more than that. If Michael was fully able to understand the situation, I believe he would hold you in his arms and speak release from self-condemnation and pray for the peace that passes all understanding to fill you. Im praying for you both. <3

  5. Just Julie says:

    Roberta and Connie….what can I say except thank you, thank you both. God uses His people to help others bear their burdens, and I felt a bit lighter after reading both of your loving comments. God bless you, dear friends faraway. xoxo

  6. Penny Robichaux-Koontz says:

    I totally agree with Connie’s wise words. I am praying for you both.

  7. Kay in Cornwall says:

    I, too, totally agree with Connie. In fact I could not have put it better myself. I heard a very well-respected pastor preach that although we should forgive those that hurt us, we should not let ‘toxic’ people into our daily lives. I consider that thoughtless person who has made such judgemental remarks to be well and truly toxic. You have enough to cope with without the poison dripping from his lips, so let him go out of your life. You ARE providing for Michael – and for many others. God bless you dear Julie.
    Lots of love from both of us. xxx

  8. Diane Aro says:

    It just gets more heartbreaking by the day, it seems. But maybe this new visiting schedule will be exactly what is needed to give Michael some relief from his emotional distress. I’m praying that’s the case. And your friends are very wise about not listening or permitting cruel and toxic people to steal whatever peace you do have at this awful time. Praying for you and Michael, as always. Diane

  9. Just Julie says:

    Dearest friends, Thank you so very much for the loving things you’ve said. I have thanked God for you all over and over…. xoxo

  10. Mariah Ford says:

    Dear, dear Julie, I only know you through your website and Instagram, but I want you to know that you and your husband are very much in my prayers and on my heart. This post has moved me deeply and I so admire your honesty and openness, and your heart of love for Michael, and clearly for all those with whom you come into contact. You are going through unimaginable difficulty but you and your wonderful husband are safe in the arms of your Father. I don’t know if you saw my recent IG post of my grand daughter in her daddy’s arms as he was singing in church, but God used that scene to speak to me of His love and care for us, His children. Truly, we are safe in His arms. I will be praying for you.

  11. Just Julie says:

    Dear Mariah, I did see that photo on Instagram and went to revisit it after you left your very kind comments here. It’s hard for me to understand how friends I’ve never met are caring and moved enough to pray for my husband and me, but I humbly receive that blessing, and ask that the Lord bless you in return. I can tell you are a smitten Grandma, just like I am. God bless you and your family, Mariah…. xoxo

  12. Ember says:

    I’m so sorry you and Michael are going through this, honey. It is because you love one another. I have been praying that Jesus will hold on tight to your hand as you walk this path, and never let go. xxx

  13. Just Julie says:

    “It is because you love one another.” Such simple words, but so profound to me. Yes, this is why it’s so hard, Ember. Thank you for your very faithful prayers for us, and for calling me honey. 🙂 God bless you and yours too… xoxo

  14. ganeyda says:

    Dearest Julie, we never forget to pray for the 2 of you. Jesus did not promise we wouldn’t have trials but He did promise He would never leave or forsake us. I pray you know the reality of this as you walk out this path.

    As for the other ~ you have provided for Michael. You have provided the very best of care for him. You have provided prayer & love. You give of your time to be with him.

    May the Lord Jesus give you grace for the day & hope for the future. Much love always…jeannie

  15. Just Julie says:

    Hello dear friend. Thank you for your prayers, and for the uplifting words you’ve given me today. You’ve helped to hold my arms up. 🙂 xoxo

  16. Jessica Town says:

    Dear Julie-
    I am sitting here catching up on your blog, which I don’t get to read as often as I’d like right now. But I do think of you ALL THE TIME and am praying for everyone in your family. I want you know that even when I’m behind in my reading and haven’t left a comment, you are always on my heart. And I’ve seen you mention a couple times that you feel like you are a whining and complaining and apologizing for not writing upbeat things. Honestly, I would rather read a blog that was sad every day but REAL than read one that’s always upbeat and positive because that’s not real life. You have no idea how much I treasure your transparency, your honesty and your unwavering faith in the midst of unspeakable heartache. Don’t get me wrong, I would prefer that you only had happy things to write about. But since that’s not the current situation, I so appreciate your willingness to share. You are a blessing to everyone who reads your blog. I wish I could swoop in and wave a wand and cure Michael and restore his health and your future together. I’m a doer and a fixer. But since I can’t, I want you to know that you are so loved by so many and even now, through these incredible trials, you spread wisdom and blessings to all who know you, in real life or cyber life. You are an amazing woman. I love you.

  17. Just Julie says:

    Thank you for your very loving words, Jessica. So blessed to know you! xoxo

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