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Caregivers Sharing, Part 17

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Posted 3/2/2013 7:31 AM (GMT -5)
Welcome themiz,angiea. I have been so busy looking for answers that I have forgotten to just live and seek help for myself. I am so grateful to so many here at HW. It is unfortunate that we have such a horrible situation to have in common.

I am an early bird by habit. We have a dusting of snow today in Tennessee. WOOHOO. My inlaws in upstate N.Y. get tickled when I email photos and make funny remarks about our big snows.

I will be picking Little Joe up today. I have been readying the bedroom he will sleep in. Hospice has offered a hospital bed but it is not needed for now. Angie1953 I will never be ready enough for this.

I have lost my attitude of gratitude. I am looking for it though. I have contacted as many as I have been able to think to contact. I am sure I have left someone out and I hope they can understand.

We just lost a 40 yr. old cousin to heart failure. He was given a heart transplant 15 years ago. But without a healthy lifestyle and being irresponsible in taking better care of his loaner heart, it ran out of life.

All of the drinkers were on my mother's side of the family. My brother looks like my father but acts as my mothers brothers did. Only one of them are still living. She has one living sister left. They are both the youngest of the family and didn't choose a drinking life. My mother did for what I remember the early 70's till 1981.

I dread today really. It is the beginning of a life for me, my sister, my husband and my nephew that I am very angry about. How dare him do this to us. I stop this thought and try to be compassionate. He is going to die soon, how soon I don't know. We get to wait and watch.

I feel as our home will soon become a medical facility. Hospice, counselors (this has already been for my nephew) doctors, visiting family and friends. My house is not a home it feels to me to be a dark hole.

I have much that needs to be done but I will do this and then that and then I just lose my motivation. I have alot of round-to-its. I am waitng for 7:30 to call and get a better idea of my brothers release time. Connor (nephew) has a 1:30 appointment with his counselor today and I need to know if I need to reschedule. She has been a great help for him and I hope that she will sign on for another 2-3 months. It is all up to his insurance and her report of his progress, lack of and now his father.

I look forward to the spring. I know it is on it's way. Fresh air, spring cleaning has already begun. Al anon monday but I wish there was another closer. No one there dealing with a dying loved one. I find more relief here.

I will start a new post where my brother's afiling health is concerned. It will have information and maybe help those that are going through the beginning of the end.

Love and Many Prayers,
Alisa
Posted 3/2/2013 9:44 AM (GMT -5)
Alisa, my email is in my profile... if you'd like to email... and I can give you my phone number. I've been down this path. I would be more than happy to listen while you go forwards.  Sandia
Posted 3/2/2013 4:40 PM (GMT -5)
Same here, Alisa, Sandia was so helpful to me in the end days, and if there is anything I can do, I would be happy to listen as well.

Marie
Posted 3/2/2013 5:47 PM (GMT -5)
I've been reading alot of the threads on the hepatitis forum.I'm so sorry for the loss of all of you guys loved ones.I'm just wondering if i'm at the beginning of the end also. My dear hubby has had hepc and cirrhosis since the early 90ies.This past oct.he was dx with stage 4 liver cancer with mets to the lungs.He was put on nexavar but couldn't take the severe side effects. Hi tumor is to large for him to get a transplant, so nexavar was our only option.They did put him on a chemo called fofox with a 20%chance it will help. Please keep us in your thoughts and Prayers


Thank you
Karen
Posted 3/2/2013 5:59 PM (GMT -5)
Karen,

This situation sounds dire. YOu have been through so much, I looked over some of your older posts.

My thoughts are with you and your family...rough times.

Prayers coming your way from South Florida.

Mama Lama
Posted 3/2/2013 7:27 PM (GMT -5)
Karen,
I am sorry...will keep you and your hubby in my prayers.

Emma
Posted 3/2/2013 8:37 PM (GMT -5)
Karen,
Remember to breath in deeply a lot. So sorry to hear the news about your husband. This is a rough path, we are all here for you. Vent, ask questions, whatever will help you through these difficult times, so you can be there for him.

Take care...thinking of you tonight and will light a lovely candle for you and hubby...may you both have a gentle night.
Angie1953
Posted 3/2/2013 8:38 PM (GMT -5)
Karen, were you able to get answers to your questions last Nov.? My thought is that he should have been scanned every 6-12 mos., in order to catch the tumor early. That is what happened with my 2nd tumor, though I still required transplant. HCC metastasized to the lungs is a dire, life threatening event. My prayers are with you and your hubby that you are able to cope with this situation. Please do continue to come here for support.

Hugs,
Connie
Posted 3/3/2013 12:15 AM (GMT -5)
Thank you all for the support and prayers.I feel so lost in all of this.We have been married for 27 years,and i have known my sweet man for 39 years. I really don't know how long we have,but it will never be long enough.I feel like my life is ending and not sure how you ladies do this.I'm cherishing every moment we have together and doing the best i can thru this time in our life.God give me the strength.

Karen
Posted 3/3/2013 4:20 AM (GMT -5)
Karen,
That is really a long time married and sounds like you have known him most of your life. I am thinking of you and sending you strength to be his support through this rocky path of his. It was hard for me to remember that this was my husband's trip and I was just along for the ride...and to be there for him the best I could (some days I could, somedays I just couldn't get up the mental strength...and couldn't get past the feeling sorry for myself stage).

One thing that helped me is that I said to myself, "okay we had 14 really wonderful years together, now I can handle a couple of hard ones"...although many days I didn't think I would be able to do it.

You will find the strength. May you and he have a good day tomorrow.
Angie1953
Posted 3/3/2013 5:06 AM (GMT -5)
I am sorry Karen , my thoughts and Prayers are with you and your hubby.

Thank You Sandia and Marie for your kindness.

Love and Many Prayers
ALisa
Posted 3/9/2013 11:50 AM (GMT -5)
AuntKay,
How are you and your husband doing? Thinking about you this week. Sending you kind thoughts this weekend.

To All:
Thanks so much for being here for support. It has been 3 weeks since my husband passed away. The first 2 weeks I felt like I was doing pretty well, other than sleeping only a couple of hours at a time.

This week has been hard though. Am trying to organize what he wanted sent to each family member...we had it all sorted out together and in boxes, but the last couple of months, while I was at work, he unpacked the boxes and moved everything, putting this things away around the house. So I run across things hidden here and there...it is kind of like a scavanger hunt. He kept saying the Dr.'s were wrong and he wasn't going anywhere.

I have some things to take to his Dr. .. some books about elephants and some poems he wrote about death being an adventure. I received a really nice sympathy card from his Dr. and his wife.

It is odd, that it is so quiet here when I get home. No stories about what the animals did, but no watching him suffer with pain either.

Still waiting for kittens from the stray cat he brought in...Mom cat keeps getting fatter and fatter. I keep telling her only one or two kittens. Don't think she is listening. She is obviously someone's house cat...I keep looking for her real owner.

Thinking of all of you who are fighting liver disease and your loved ones. Have a quiet weekend.
Angie1953
Posted 3/9/2013 8:52 PM (GMT -5)
Angie1953,thanks for asking about us.Chuck had his 4th round of chemo thursday.He seems fine today we just take it day by day. I hope you start sleeping better maybe you need a little help right now with your sleep.My thoughts and prayers are with you at this difficult time in your life ((((((hugs)))))).

Karen
Posted 3/10/2013 7:47 PM (GMT -5)
My nephew Connor ( Little Joe's son) was with his kindergarden teacher all day yesturday. She has kept up with him since he was in her class. We have been so Blessed by so many that have come to visit to lift his spirits. Taking him places and letting him spend time with their children and grandchildren.

I recieved the call while he was with her that his mother died at 4:pm yesturday. I wasn't going tell him until after school Monday or keep him home and work on the memorial he wants in our back yard for his Dad.

I took the time and used it to tell him when I went to pick him at her house. I am happy I did. We talked about it and then I got him ready for him and I to go to Church with her. I had asked her first and she agreed that she would help me. I told him we needed to go Thank The Good Lord for his Mercy and Grace he has shown his parents and us.

It has been a Blessings filled day. After Church we went to a Celebration Of Life hosted by our cousin, Little Joe's Brother in Spirit. It was such a great event. I wish my brother had loved himself even a quarter of the love others had for him. It was a wonderful event.

I am in such AWE by ALL the Blessings that we have received. Beginning Sunday with my brother and still being bestowed upon us. I am so Grateful. Words can never be enough.

How terrible for this young boy. But he is being protected as I see it. He will grieve for them both and be able to move forward instead of grieving and then it happening again for him to have to repeat.

Everything is falling into place and the Faith I have and the Faith and trust I show my nephew will get us through and beyond this. What his parents didn't do for him in their living days, they are doing with even more and through others as well. He loves his Aunt Lisa and I remind him daily he is my Gift. I am so Proud of him and I Thank him for adding happiness to my heart, my life and my home.

I grieve for him and now I will help him grieve and then if I need to some more for me I will. I am still waiting for the Hospice grief classes and Praying for guidance and strength. My Prayers are being heard and answered. We are so very Blessed!!

Love and Many Prayers
Alisa
Posted 3/10/2013 7:57 PM (GMT -5)
Alisa,
Oh, so sorry your nephew lost his Mom, too. He is so lucky to have you. Hang in there. You are truely blessed, so have the help you write of and to have a little guy who is such a gift for you.

Thinking of you. Will be lighting candles tonight for the two of you. Keep in touch..I am also waiting for the grief classes to start. Thought I was doing pretty good, but this last 3 days have been difficult. Take care.
Angie1953
Posted 3/10/2013 8:26 PM (GMT -5)
Thank You Angie1953,

I really haven't had time to think except about what is next on my list of must do's. His mother dying took me off my feet. It was just too much, too soon.

Each moment my emotions change without warning but I only break down when my nephew is not near. We cry some at prayer time and some together through the day when I am checking on his feelings.

I will see his face and ask him if that is a sad or mad look. He has come to talk more when I approach him in a question rather than a statement.

We are going shopping, maybe tomorrow, for a Mom statue and a Father statue for the memorial he wants to have at my bird bath. It is surrounded by cobble stones so it is protected and I have a shepard hook that he will pick a potted plant to hang above the bath. The staues I will let him place and sprinkle some of their ashes if he wants. I ask him what he would like to do and I let him do it.
Posted 3/10/2013 8:28 PM (GMT -5)
Alisa, I'm very sorry to hear that your nephew has lost both parents. But I know you will continue to love and guide him and be there for him.

Hugs,
Connie
Posted 3/10/2013 8:32 PM (GMT -5)
Thank You Connie,
I will do just that. I am his protector, his shield and no one gets to him without going through me first. I have assured both of his parents that while they could hear me.
Posted 3/10/2013 10:06 PM (GMT -5)
It sounds as if your nephew is going to be fine, as long as he has you taking care of him.
Posted 3/11/2013 3:19 AM (GMT -5)
I believe he will too David. Thank You! We have each other and many Family and Friends to help us all!

When I went to pick up my brother's cremains, I was looking at the nice containers they have for storing ashes. I came across a cremation heart charm. There was not talking me out of it.

I have put some of my brother's ashes in it and I have been wearing it PROUDLY. I have found a gold cross ( much less exspensive to buy elsewhere ) to put some of my Mother's and Father's cremains in it. It is a Cross and I will add it to my necklace.

I know there are days ahead that all will sink in. Shock and disbelief still upon my heart but healing has begun and we will get through these heart breaking times.
Posted 3/11/2013 7:36 AM (GMT -5)
Alisa,

When I read your post about Connor's mom, it was a virtual stab thru the heart. I have to say you are one strong woman...for you to take on the care of your nephew, while grieving yourself, says so much about you as a person. Connor is fortunate to have you in his life and God knows, he sure needs it now and really for the rest of his life. You will always be his saviour, his guiding light.

Thank God for you! Hope the rest of the family takes a cue from you, time for them to step up to the plate, give you some much needed rest, and get involved.

Life dealt you all some hard blows this week, and I cannot imagine losing both parents in 7 days. But to have it happen at his tender age is catastrophic. You never said much about his mom, did she have ESLD as well?

Though you might like to check out this site someday, maybe with Connor when he is ready:

www.hellogrief.org/

Biggest hugs to the best caregiver and Auntie there ever was true,
Posted 3/11/2013 7:57 AM (GMT -5)
Thnank You Mae,
The Blessings are over flowing for this young man. His mother had endstage emphysema and a lung enzyme defiency. She has been in a long term facility since Sept. 2011 but my nephew has been with me since July 2011.

I am helping him grieve. And when he begins to heal then I will for my losses as well. I am awaiting the Hospice grief classes. Shouldn't be much longer. I will share the Blessings I receive through these classes. I so enjoy sharing my Blessings. I will check out the link you have given me

I have a calm in my heart. I am a work in progress in my Faith and Trust in The Good Lord. He has and continues to be spot on in his timing and all our Blessings. Connor will learn through me what I learn through the guidance I have from The Good Lord and all the many Family and Friends and Blessings he is setting in our path.

Thank You Mae
Thank You ALL

Love and Many Prayers,
Alisa
Posted 3/11/2013 7:58 AM (GMT -5)
Angie,

I don't pretend to know what it's like losing the love of your life and you were so strong for him. I love how you described the animal antics and the fond memories of watching them together with Phil.

So sad it turned out this way but know you have only to say the word and folks here will help you get past the bumps on this road we call Grief.

Have his traveling friends been told about Phil's passing? Do you have family in the area to lean on for support when times get rough? I STILL, for a nanosecond sometimes, reach for the phone to call my Mom who has been gone 8 years now. Loved ones stay with you forever, it seems.

Sounds like taking care of the animals sure keeps you busy, hope you're taking time for yourself though, like having a nice hot bath with soft music, candles, a good book and a toga-clad cabana boy feeding you grapes.

A girl can dream, can't she? :)

Candle for you tonite, (vanilla dream)

Big Hugs,
Mae
Posted 3/12/2013 11:57 AM (GMT -5)
Just stopping by to see how everyone is doing. Things are ok here I guess,Mark still sleeps alot, doesn't talk much,kinda in his own world.

I get lonely for people to talk to,I have my family,but they also have their own lives and sometimes I feel like I just play repeat and repeat.
Well hope you are all doing well.

Robin
Posted 3/12/2013 1:23 PM (GMT -5)
Robin, we are always here for you.

Hugs,
Connie
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