Where we are

Hi, everyone. It's been a while since I posted anything in general about the current state of affairs here. It has been really quite a challenging year for me and my family.

I accepted the wonderful VA facility offer of respite twice this year. I spent the first one working overtime at my job, it being the heart of our busy season, and spent the second one, at the beginning of March, with my sister near DC, as her husband was dying unexpectedly and quite quickly of multiple causes. He had gone to the hospital with shortness of breath, and was diagnosed with flu and a bacterial infection at first, which became known to be instead lymphoma and widespread cancer. Since my own sweetheart was already at the hospice unit here in Maine, I was able to fly down immediately and am grateful for the time with my sister, her dear husband, and their two splendid sons. My brother-in-law was 64, and he died just three weeks after he fell ill. Such an awful shock. Such a loss.

I have to say I would die myself before going into the ICU at Holy Cross in Silver Spring MD. I have never witnessed such imperious and callous cruelty outside of film. Nurse Racheds run the unit, and they continually defied humane orders of the doctors and robbed my sister of any hope of peace at the end. The culture on that ward is vicious. The good nurses seemed cowed. We have complained and will continue to do so, and I am determined to take every opportunity, like this one, to advertise the malfeasance. Don't go there!!

The contrast with the dear, kind, loving care my sweetheart is given at the VA hospice unit in Maine couldn't be more dramatic. Still, when he went back for what was to be 8 days for an attempt to address his sleeplessness and agitation this month, he crashed badly, in what we think now was an overreaction to the initial sedative. We all thought he was dying. I was called in for a whole staff meeting to discuss the situation.

On Tuesday he couldn't eat or drink. He couldn't talk. His eyes wouldn't track. He was unresponsive. When the meds were adjusted, he came back a bit, but the puréed diet he was on was no incentive to survive, so I went in with a jug of cream, a stick of butter and a salt shaker and added these to everything. I brought in soft goat cheese, hummus and avocados, which he loves, and got him eating those. Mind you, the nurses were giving him protein fortified ice cream for breakfast, and lots of custards and puddings, too. They were trying!

I was really having a hard time last week, in shock and grief. I called his children and advised them to come, as the doctors had said I should. And then the meds were fixed. He slept Wednesday night, and was better on Thursday. He slept Thusday night and ate solid food on Friday. He even walked with his walker and me to support him. I was ecstatic. I was doing a happy dance every where I went.

I got him home on Saturday, on a pass just in case. The kids came from near and far, with grand babies, one brand new he had not yet met. We had a wild wonderful Easter Holiday. Our beloved sister-in-law whom we had not seen since before her ordeal in Iran joined us. It was glorious. I called the VA on Tuesday and had him officially discharged.

He is still tired, and weak. I don't know how long we have. I don't know how or if I will go back to work. ( Part time this week.) I don't know if I can continue to transfer him. But I learned how far I am from being ready to let him go.

The VA nurse in charge of his care will be talking to me tomorrow about home hospice services. I am so grateful to her and all of the staff. Honestly, no one has ever gotten better care than we have.

And that's where we are. I have pea soup on the stove I had better get to.

Love to you all. Ec

27 Replies

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  • EC, sorry to hear you are going through such a rough patch lately. I've been remiss in tending to this community due to extreme fatigue. I wish I could reach through this mobile line and give you a big hug! Anytime you need me let me know. My heart goes out to the both of you and I hope the next stage is one of those plateaus where life feels easier.

    With all the love I have,

    Steve

  • Thanks, Steve. I was glad to read that you were able to go home for the holiday with your mother. The little good things carry us on. Love, ec

  • So true. Take care and I will get more active soon, God willing.

    Steve

  • So good to hear things are positive.......

    Has spring arrived in Maine ?

  • Spring is coming by inches. Daffodils and Scilla came up yesterday. tulip leaves are reaching skyward, buds to follow. Forsythia is making cheerful fireworks in random corners. It's cold and rainy now, with snow in the forecast. Not usual for us, but better than unusual heat, I say!

  • EC, SORRY TOO HEAR THAT YOU HAVE BEEN GONG THROUGH A ROUGH TIME BUT THINGS ARE GOING BETTER NOW.TREASURE THE TIME YOU HAVE WITH HIM. I WOULD DO ANYTHING TO HAVE MY LOVE BACK. I HONESTLY THINK HOSPICE TOOK HIM AWAY. TAKE CARE. LOVE AND HUGS.

    AUDDONZ (AUDREY)

  • I think Hospice pushes too much. I've fought back and have won for now. It isn't what they tell you about caring, etc.

    Cuttercat

  • Cuttercat, You have no idea how much I regret not sending him back to the hospital. Maybe he would still be with me. I miss him so much.

    Auddonz (aka Audrey)

  • Oh honey I'm sorry but I do understand. I feel so weak Your post made me tear up. Thank you for sharing

    Cuttercat

  • Without the friends I have made on this site I would be completely lost. I know you all understand.

    Audrey

  • EC, you know I with you every step of the way.

    Sending big hug and much love.

    Lots of love

    Anne

  • I read your account with baited breath. What a roller-coaster !!

    So happy to hear of your reprieve, I know you treasure every moment.

    Big hug from Jean x

  • Oh my goodness, what a difficult time for you, I hope you know I am thinking of you and send you my love....Pat xx

  • This may be goofy, but not being able to come up with some thing better than what has already be written, this song came to mind.

    I trust God is holding your in the palm of His hand.

  • I don't know where things stand concerning home hospice, but I have been thinking about when my Dad passed from PD on May 14, 2013 as that anniversary approaches again. He was pretty far gone by the decision to bring him home was made by my Mom. She didn't want the hospice people in the house and she was not well informed about the process. Fortunately, my sister Laura, an RN for 35 years, convinced her that Dad would want to die at home. We talked this past weekend about how that was the smartest thing she did in the last two months of his life.

    The hospice group were great, and Laura's status at the hospital ensured my Dad had the best care. His last two weeks in particular were fairly serene and peaceful. To this day some of the hospice group still call my Mom to ask her how she is holding up.

    I hope this option is available to you as it will give you somewhat of a physical break and you can focus on conveying as much love as is possible to your fellow. I am not sure there are good deaths, but I believe there are bad and worse death as opposed to peaceful and quiet ones. I pray fervently for the both of you that when the time comes you will be able to smile through the tears, knowing he has finally been released from this horrible ordeal.

    You have both given me so much even half the country away and I am always happy for your support. My admiration for you as you help others in these dire times is one of the reasons I read this forum whenever I can.

    Anyway, the hour is late but I sat up in bed and did this response because I want so much to ease your suffering in my own meager way. Make sure you take care of yourself and draw strength wherever you can. Angels like yourself deserve so much better, and I wish I had the ability to make that happen.

    With my utmost admiration and affection, I remain

    Steve

  • EC

    You have been busy,You must be so tired of sitting on the edge of your seat. Do hope your sweetheart continue to rally..

    Take care of yourself

    Dee in BC

  • Spring is a lovely time ,I hope your husband continues to feel better ,you must have been on an emotional roller coaster ,stay strong .sending hugs x

  • Oh EC!

    Your plate has been very overfull.

    You are amazing to take all that on in DC as well.

    Thank you for posting that. It is a celebration of strength and love.

    I read your post to Liz and we both send you hugs and hope.

    Love

    Liz and Kevin

  • Thanks, Liz and Kevin. Love back to you!

  • I am piggybacking replys from Heady and Steve. I do not post often as the care everyone gets from those who reply is just so special I don't think I can do better. My Bill is gone ahead now so I feel guilty sometimes that I am no longer in your place. But know you eternally have my prayers. You have helped me so much. Just love, hug, giggle, pray and gently look for the Lord. We are all praying for you.

    Sue

  • Sending love back to you across the pond.😊

  • Dear EC,

    I know how this is. I'm so sorry, up and down, day by day, hour by hour. Tears constantly, fears at each choking episode and every gasp. I'm barely hanging on but not ready to say goodbye. Help.

    Cuttercat

  • Dear Ec, forgive me for saying this, as I don't want to scare you, but your story sounds very reminiscent of our last 6 weeks. Bruce was sick when we brought him home but he was able to the best he could with some walking and standing . We even "danced" a few times with me singing ....he was probably just trying to get a way from my horrible voice ;) but for what it was worth (and that was more than money) we held each other for a moment....He even transferred from his hospital bed back to our own for several weeks....days....I can't remember.....

    All in all It was good for Bruce and all of us to have him home again...we knew and were trying to accept that his time was not long with us . The kids lived in our house in case the evening was his time to go (and it was) .... Like your family, we had a great (final) week with dad....finding old home movies and talking about how special their daddy was.... It was the best visitation/'funeral' anyone could ever have...for he was there to hear and share and know that others outside his home loved him as they came to visit and talk about Bruce Birke....

    God bless you ec as you go through the inevitable...My heart and prayers are with you dear. we don't know exactly when, but being prepared allows everyone to be there and share and love, and, well experience the ultimate of life.

    To Ec's sweetheart aka father and friend. You are so fortunate to have such a wonderful wife as Ec....I know you know how much and how well she has taken care of you. It's so wonderful that you are able to share your days with your family and friends; they love you...I promise that we here at this site will take good care of your woman; we have and are and will be going through PSP together and need each other and take care of each other so please take comfort that your wife has friends holding her up....Sweetheart (that's all I really know you as...that's all your wife ever thought of you as on this site....that I know of ...there could've been a few other names, but she was patient and forgiving ;) ) Sweetheart, may you go in comfort and peace, whenever that may be...

    Love,

    AVB

  • Thanks, Andrea. The VA went from a 1 to 3 months projection to a 2 to 3 weeks projection in two days. Then he bounced up. I think we are looking as you suggest at about 6 weeks, depending on his ability to take liquid. So I will get the hospital bed and hospice services, and try to work as I can.

    I was hoping to get him to the mountains this weekend, but his legs aren't holding him up at all today.

    If there is a heaven, he's going there. Such a decent sweet man.

    Love, ec

  • Trying to still do the best you can Ec, good for you and your husband....

    AVB never give up

  • MY DEAR EC,

    I AM SO SORRY T HEAR OF YOUR TRIALS ..... I HAD NO IDEA THAT YOUR SWEETHEART WAS AS BAD AS YOU REPORT.. MAY THOUGHTS ARE WITH YOU BOTH

    WITH MUCH LOVE TO YOU .

    SHARON

  • Thanks, Sharon. You know, I think he's going to show me up and recover after all, and I am pretty happy tonight. He is eating again. Hurray!

    Love, ec

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