Voicelessness and Emotional Survival Message Board
Voicelessness and Emotional Survival => Voicelessness and Emotional Survival Message Board => Topic started by: mountainspring on August 09, 2007, 09:24:42 PM
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This is a portion of an email Mom sent me today.
Dad's meld is now 21. I think he is just around the corner from a transplant. Tuesday, when we had our last visit, Dad begged Dr. to drive. Dad asked Dr. twice and Julie, his nurse once if he could drive. They both said no, not until after transplant.. Dr explained that the effect of encephalopathy on the brain is the same as that of an alcoholic or a drunk and it was not only his life he was thinking about, but also that of others.
We also asked Dr. about the living donor program and his response was, " I don't think that will be necessary." We were wondering if that was a hint that they were looking at Dad as near future candidate. Since May 2007, his melds have gone from 16 to 21. That's pretty fast. If it continues at that pace, he may be there quicker than we thought.
I asked Dr. if the Xifaxan pill and the Kristalose are a permanent fix for Dad's encephalopathy. He said no, that the effectiveness of the medication could wear down at any time. The medication treats only the symptoms, not the disease.
To me, another indication that he may being considered for a liver is the fact that a doctor called last week wanting to know if Dad would be interested in being involved in another research project concerning the liver transplant. This is a cognitive study (reasoning, remembering, math stuff) that is given twice before transplant (three months apart) and then once six months after transplant. It is done by professional psychological testers. It will be a test of how well the transplant helps mental conditions.
They talk with him both before and after the transplant. We are thinking why would they call him and ask him that if there was not at least a fair to good chance that they would transplant him?
They did not tell us they are planning on a transplant soon. They give only hints. We do not know what they are thinking. They are telling us nothing.
I just needed to share it with someone. I'm really trying to be strong. Not to be a whiner. But this along with everything that's going on with Mammaw and the ongoing conflicts with my mother leave me very sad. I just feel real sad.
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(((((((((((((((((((((((((Dear MS))))))))))))))))))))))),
Please know that I'm thinking of you and your family and I send my prayers.
tt
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Wow Mountainspring, I am so sorry. I do so hope that you will get good news concerning your father soon. I imagine the paucity of information and the uncertainty of what the doctors are thinking and planning makes it even more difficult. I'm glad you have this place to share. I hope it offers you some comfort however small. - your friend - Gaining Strength
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(((((((((Mountainspring)))))))) I'm praying, too... it's okay to be sad... you are safe.
Love,
Hope
1 As the deer pants for the water brooks, so my soul pants for You, O God.
2 My soul thirsts for God, for the living God; when shall I come and appear before God?
3 My tears have been my food day and night, while they say to me all day long, "Where is your God?"
4 These things I remember and I pour out my soul within me. For I used to go along with the throng and lead them in procession to the house of God, with the voice of joy and thanksgiving, a multitude keeping festival.
5 Why are you in despair, O my soul? And why have you become disturbed within me?
Hope in God, for I shall again praise Him for the help of His presence.
6 O my God, my soul is in despair within me; therefore I remember You from the land of the Jordan and the peaks of Hermon, from Mount Mizar. 7 Deep calls to deep at the sound of Your waterfalls; all Your breakers and Your waves have rolled over me.
8 The LORD will command His lovingkindness in the daytime; And His song will be with me in the night,
a prayer to the God of my life.
9 I will say to God my rock, "Why have You forgotten me?
Why do I go mourning because of the oppression of the enemy?"
10 As a shattering of my bones, my adversaries revile me, while they say to me all day long, "Where is your God?"
11 Why are you in despair, O my soul? And why have you become disturbed within me?
Hope in God, for I shall yet praise Him, The help of my countenance and my God.
Psalm 42
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(((((((((((((((((((((((MS)))))))))))))))))))))))))))
I spent a lot of time with the ups and downs over a liver transplant...
my D's father. It was harrowing and I do so understand how sad
you must feel.
love to you, it is very hard to accept these bodily things,
especially when relationships are strained. I know it's terribly hard
on you.
Please be good to yourself, very very kind, especially now.
Hops
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Dear MS,
I am so very, very sorry.I can't imagine the stress of all the 'dynamics" going on,now. There are life issues and N issues. N issues are horrible, themselves, but when you add life issues ON TOP of that-- it feels unbearable, I would think.
I am so, so very sorry.((((((((((((((((((((((((((((MS)))))))))))))))))))))) Love Ami
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Lots and lots of love MS am thinking of you..
(((((((((((((((((((((((MS)))))))))))))))))))))))))))
Spyralle x
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(((((((((((((((((((((((((((MSpring)))))))))))))))))))))
It is very hard to read between the lines here. I am not sure what the plans are for your dad and I am sure that is hard for your whole family.
Please take care of yourself. I will send some prayers for your family.
Love, Beth
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Spring,
Sounds heavy. Hugs and support and angels to help you carry it.
xo poppy
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Thanks to everyone for your encouraging posts. So much has happened since I posted this thread. Dad had a couple of brain fog episodes last week and a decision was made to fly Mammaw back here. My cousin brought her here yesterday. She's getting settled back in and I'm figuring things out.
I feel bad that I haven't done much posting lately. Things are a little nuts for me right now.
Hugs to everyone. I hope things are going well for all of you.
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Dear MS,
While you're being the family fulcrum, don't add guilt over not posting to the load!
I hope you'll keep remembering to keep self-care right on top.
It's the only way to walk through this hard chapter.
I've been there, I live there...keep things simple but don't forget
to laugh, to sleep, to read, to escape.
love
Hops
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Hi MS!
I know life is so busy for you right now, but I wanted to add my very best to you during this time. How sweet to have Mammaw again. I know that you will make sure that you have enough help.
It sounds like your mom thinks that your dad's transplant may be very soon--from her email, I think she's right. A lot of the stuff they are talking about sounds very preparatory. I'm so sorry you are under this pressure. It is truly very very hard. We have so many illnesses within our family and some were quite scarey and we didnt know what was going on day to day. The not knowing may be the very hardest part of all.
MS, you are truly in the fire right now, but it is only a season. Hard to believe that my son's illness is only 8 months behind us and yet he is so fit and well. That day will come for you as well. In the meantime, I will be thinking and praying for you...
Much love,
CB
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Hi MS,
Hugs to you and Mammaw. You have so much going on. Is Mammaw in your home or in a care facility in your town? Either way, you have to be just about wiped out with all the coordinating and transition. My prayers to you and yours.
tt
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Dear Mountainspring,
"A decision was made"... ((((((((((Mountainspring)))))))) I hope that you have had a voice in that decision making.
As I recall, there was an option for in-home care @ 8-10 hours per day?
Thinking of you and praying for the very best for all of your family.
Love,
Hope
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Yes, I was a part of that decision. Mammaw begged to come home with me while I was there and I told Dad I was open to the idea, and at the same time Mom and Dad were looking for a nursing home. The place that she was in rehab had a room but she hated it there. They looked at several and couldn’t find one that Dad thought she would be happy with. Then he was getting sick again. My father sent me $$ for a sitter and I’m in the process of looking for one. Agencies want 18 to 20 an hour for one. They don’t want to send just a sitter, they say because of her needs she needs someone with nursing experience. But I am here and can help her with her toileting etc. All I really need is a sitter, someone to make sure she doesn’t get up while I’m doing the laundry etc. When she’s in her right mind, she won’t get up, but the dementia is worse and frequently she will decide to get up on her own and if I’m not right there she will fall. I had someone when she was here before to come in at 20 an hour a couple or three times a week for 3 hours at a time, but if I pay that much again, I won’t be able to use her as long each day.
I’m trying to decide whether to get the hospital bed again. When she was in rehab she kept trying to get out of bed, so they put rails up. Then one night she decided she needed to get up and went over the rail. So I’m thinking I’ll just buy a double bed, move it by the wall, and sleep next to her. This way she won’t be able to get up at night without my knowing.
I’m also thinking maybe it would be cheaper to use the money to have someone drive the kids to and from school and have someone come in and help me with the house. My oldest could probably walk to the bus stop, but I’m not real comfortable with my youngest walking. And when my son is here, I can pay him to sit with Mammaw a couple hours at a time for a break, and I can advertise in the paper for someone to come in at 10 an hour and not go through an agency. Not sure how it will all work yet.
Today is day 2 that she has been here. Both yesterday and this morning have been the same. By the time I get her up, feed her and get her dressed she’s tired again. Right now she is sleeping in her chair. But yesterday when my cousin was here, she slept in the chair while I went to Walmart to get her some things. He was in the living room and she woke up and fell trying to get up. I have a personal alarm to hook onto her clothes, and she’s got it on now so I’m taking a little break and checking on her every 15 min. Maybe this will be the time of day for me to get things done etc.
I’ve also checked with the local convalescent center for respite in case they call my father for the transplant. I’ve talked to him about what to do and he says when they call him stay put for at least 3 days. He says he will be in ICU and wouldn’t know I was there the first three days anyway. Then, put her in the convalescent center for 4 days and fly in to see him. I have to take them the papers with her meds and a physician referral, and I’ll need to tell her something about what’s going on, but I’m not sure what. She’s been told before, but she won’t remember. She knows he’s sick, but not how sick. I also need to figure out what to do with the kids then. I dread dealing with my mother when all this happens.
I’m also working on her doctor. The one we had before was good, but he’s 45 minutes away and I’d like to find someone closer. And I’m trying to figure ways to limit my need to go out. I think I’ll make a menu for a month, grocery shop for a month at a time, and use one shelf of freezer space for each weeks worth of groceries.
Her surgery in June definitely took a toll on her and she’s not the same in many ways. But I think I can work everything out, it will just take a little time. I’m also trying to think about ways to keep her occupied. The sewing did that last time, but she can’t do that now. I’ll think of something. Maybe when I find the doc he will order more PT for her. She really enjoyed people coming in when she was here before. I’m also going to contact local churches to see if anyone is interested in visiting her. She likes company.
Things will settle soon it’s just a matter of getting everything worked out. I hope I can do this right. I think it's just a matter of finding the right resources.
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Oh MS.
I'm in the same spiral.
Mom's not quite as demented as Mamaw yet, but well on her way. Great confusion at times.
I have a caregiver/sitter, uncertified but reliable (hell, saintly) 4 hours a day. Then she's alone, hopefully sleeping, for about 4 hours until I get home. She wears a LifeAlert type of emergency pendant, and walks with a walker. But she often decides she's fine with just her cane in the house, and I know one day that's why she'll fall.
I just can't arrange or pay for around the clock care. And if I went as far as you're willing to (e.g., sleeping beside her), I would go: a) mad, and b) straight downhill physically and wind up unable to do my job, and I can't risk that.
It's such a tightrope of cobbled-together solutions. It felt just the same to me when my D was little and I had to find child care.
Right now she's teetering on the edge of poor hygeine and I can't do it for her because of my back.
All to say, I truly feel for you and I am awed by your optimism that you can find solutions. I am glad you have a respite care backup plan.
love and steadiness,
Hops
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Dear MS,
I feel like something beautiful is going to come out of this( with your grandmother). When you wrote a while back, I was hoping that you would take her home with you.
I can't explain my "unusual" feeling,but I feel it so I thought I would share it.
You are a precious granddaughter.
I am sorry for your F's situation. You are handling things exponentially better than I would( or most people),my Friend. I am inspired by your devotion and courage
((((((((((((((((((((((MS)))))))))))))))))))))) Love Ami
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Dear Mountainspring,
All that you are organizing and doing just boggles my mind.
You are doing everything that I can imagine is possible, you know? It hurts my heart to hear you say that you hope you can do it right...
because it's your heart attitude that makes all the difference, much more than the stuff you can do.
More big hugs to you and lots of prayer that God will continue to strengthen and encourage you and protect Mammaw and the rest of the family from harm.
With love,
Hope