Sitting here reading your posts......

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Sitting here reading your posts......

Postby LRS » Sun Nov 09, 2008 12:23 am

Hi all,
Just sitting here reading all of your posts. Heart aching for all of you who have lost your loved one, and those of you who are nearing the end of the battle with them. I've been doing pretty good the past 2 months since Mom passed away. Sometimes, not so good though. Tonight is one of those "not so good" times. My birthday is Wednesday, don't quite know how it will be for me not to get that early morning "Happy Birthday" call from my mom. We are getting ready to leave on the 22nd to visit my in-laws in PA for Thanksgiving. I remember last year, I was so afraid to go, mom had been declining fast, and could barely speak. I would call her everyday and could barely understand a word she said. I was a nervous wreck the whole week we were gone. Now, just a year later, she's not here anymore. She always took such pleasure in her Christmas tree, she collected so many special ornaments over the years, her tree was always the most beautiful one I had ever seen. When we moved in our house here, she started helping me each year with decorating mine. 2 years ago, she said she just didn't care much about putting her tree up anymore, and she loaned me all her ornaments. I can't even imagine right this minute how I will put up that tree this year. Every ornament I take out of its box is going to have a memory attached to it. Every time I look at the tree, I'll see mom. Last Christmas, she couldn't even walk in to my house unassisted. We got her a chair and she sat there while family visited, not being able to walk around or talk to them. It's still so hard to believe that just a little over a year ago, she was fine, then got sick so suddenly, and everything just snowballed downhill so very fast. Oh how we take for granted those we love. We just never know what tomorrow holds. We never know what conversation may be our last. Which kiss or hug will be the last one. Or which "I Love You" will be the last one we ever get to say. Thank you for listening to me. I guess I just need to get things out now and then. My best to all of you.
God Bless
Lisa
*Mom, Jean, 72, symptoms of PSP since 9/07, diagnosis of possible PSP 2/08, met her Savior 9/15/08.*
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Postby Beth » Sun Nov 09, 2008 12:07 pm

Hi Lisa,

Yes, memories abound, and the holidays accentuate them. Your talk about your Mother's Christmas tree brought several things to mind. I'm not trying to put and "shoulds" on you, but consider the fact that the ornaments were so special to her and she wouldn't want them to sit in a box during their season of glory. Think of perhaps giving one of the ornaments to each person who helped you get through the months of difficulty as her gift to them this year. (a small way of keeping her sprit very much alive)Think of how happy she would be to see them all again....

When I opened Mom's box, each ornament was in a plastic bag with a little description of who gave it to her, why it was so important. When I found the one I made at age three in Sunday School, describing how the ribbon had to be replaced in 2000 because the old one fell apart, and how it was the most precious on the tree, needless to say I burst into tears. It made it very easy for me to give ornaments to people who loved her, ones which they would always remember each year as they hung them on their trees.

Every year my church distributes an advent book with writings from various church members. I was asked to do one this year, and it tells a bit about my caring for Mom. I'm sending a copy to you.

Luke 2: 4-6
......


Many families have a crèche under their Christmas trees to remember the humble birth of our Lord. Our family was different, because that spot was reserved for the electric trains.

We always had a crèche upon our mantle, with a Bible on one side, open to this passage in Luke. A single red candle was behind the Bible. From a young age I can remember watching the Kings move closer to the manger with each new week in Advent, but I can remember that our Kings came from the north because of the orientation of our mantle.

When I was in college I saw the perfect Christmas gift for Mom and Dad, the beginning of a Hummel nativity to replace the worn plaster statues. The first year they only had Mary, Joseph, and the infant Jesus, just as this passage tells. Each year thereafter I would add another figure, many years getting them from a friend whose husband was stationed at the time in Germany. Gradually the set was completed, with the grandchildren giving them the animals. It was one of my mother’s prized possessions.

When I was caring for Mom in the last years of her life it was difficult for me to get out to do any Christmas shopping, but by that time the Internet was alive and active. I found on EBay a Hummel camel, one piece I hadn’t seen before. As is my style I waited to bid until the last few seconds of the auction and was able to get it. It arrived; I wrapped it, and was set to save it for Christmas morning. The rest of the nativity was in place, the tree was up, and we listened to Christmas music, opened Christmas cards, and watched Christmas videos. After watching It’s a Wonderful Life, I decided that time was too short and she should be able to enjoy the camel all during Advent so I told her I wanted to give her my present early. She was as excited as any child on Christmas morning, and upon opening it said in speech which many would not have been able to understand, but I heard quite clearly, “His name is Clarence”, the name of the angel in the movie.

I’ve often thought about that moment. Yes, I believe there was a star guiding the Kings to the infant, but they also had Clarence, an angel in the form of a camel to guide them.

.......

Thanksgiving evening, Clarence and his friends will again grace my mantle, and yes, I'll shed a few tears as I am now, but will also remember Mom's delight in the season. May you be able to remember always your Mother's delight in Christmas!! The difficulty and the tears come only from the depth of how much you loved her.

Beth
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Postby LRS » Sun Nov 09, 2008 12:19 pm

Beth,
THANK YOU!!! How precious your memories are. I will put up that Christmas tree, I just had some doubt about how good I would handle it. But, it will go up, for us and for mom's memory. Thank you for sharing your advent story with me. I will proudly lay the family bible out this Christmas. Thank you Beth,
God Bless
Lisa
*Mom, Jean, 72, symptoms of PSP since 9/07, diagnosis of possible PSP 2/08, met her Savior 9/15/08.*
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Christmas

Postby les » Sat Nov 15, 2008 11:07 am

I too Lisa am very upset about Christmas. Everytime a Christmas commercial comes on I want to turn off the TV.

Last year my mom was still here. She died January 29th, 2008. What I did Christmas Eve was make this whole meal at home, turkey, gravy, stuffing, coleslaw, mashed potatoes, carrots, etc. I pureed her portion up and then put everything else in foil plates and took everything to the nursing home and everybody ate the regular food and my mom the pureed. I was really proud of myself that I did that because it was hard and took a lot of work and I look back and I am happy that I had that dinner for my mom with the rest of the family there.

But this year, I just feel like I don't even want to put up a christmas tree. I sort of want to go to a hotel with my daughter and she can go in the pool and I'll bring the Christmas gifts there and I don't even really feel like seeing the rest of my family. I know that is horrible but that's what i WISH I could do. But I know I won't.

I will put up my tree because I want my daughter to have a good christmas at home. I will try to put a smile on my face and go to my brother's for christmas. It is only 2 days and I can get thru it.

I just miss my mom so very much that's all.

What Beth says is true our moms wouldn't want us to be like this. They loved Christmas. Beth is very positive and uplifting and says how it is, and I will try to follow her advice too. Thank you Beth.

Love,
Lesley

Mom - Bev - died from PSP January 29/08-SHE IS NOT A PRISONER IN HER OWN BODY ANYMORE - SHE IS FREE!
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Postby LRS » Sat Nov 15, 2008 11:43 am

Hey Lesley,
I say, lets just put up those trees in memory of our folks, and Thank God for the memories we have. That we enjoy Christmas with our loved ones, we never know when our last Christmas may be with any of them either. I just made it over one hurdle. My birthday was on Wednesday, and it was the first one without mom here. I am used to that early morning Happy Birthday call. But, you know what? I made it right through the day. I thought about her some, and I missed her. But, by the Grace of God, and my loving family, I had a really nice birthday. We just take it one baby step at a time....right?
God Bless
Lisa
*Mom, Jean, 72, symptoms of PSP since 9/07, diagnosis of possible PSP 2/08, met her Savior 9/15/08.*
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Postby les » Sun Nov 16, 2008 12:31 pm

Hi Lisa:

You are right to take things one step at a time.

I feel this last week I have been hurting really bad. It's like a rollercoaster for me I'm okay for awhile and then I get bad again. I still have anger and I never had anger problems before. I feel okay for awhile and then I have anger again for awhile and I feel so screwed up and lost because I don't even really know what I'm angry at. I think its from watching my mom slowly die from this over a period of about 7 years and suffering with her thru all the symptoms and stages. Maybe I'm mad that she's not here anymore.

I hate not knowing all this stuff and why I feel the way I do. I hate feeling so angry and sad but it does get better for short periods of time so I think I will eventually be okay one day and have good memories of her and be happy again.

My doctor told me you can not rush the healing process. I know its been almost 10 months since my mom died but I was so so close to her. He said its normal for me to be like this. He said the anger will be less intense each time and I think he's right.

We will get thru Christmas. I heard its all the firsts that are really hard but I'm glad you had a good birthday. I had a good birthday too.

I'm glad you are posting on here. It's comforting to write on here. We're all in the same boat.

Lesley
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Postby LRS » Mon Nov 17, 2008 1:25 am

Hey Lesley,
From day one with this disease, I always referred to it as a roller coaster ride. And, you are right, the healing process is a roller coaster ride too. I'm like you, I do pretty good for awhile, but then I am noticing that I am real snappy, cranky etc. with loved ones. I guess our nerves are just raw from all that we've been through. Not a day goes by that I'm not having to ask the Lord to forgive me for something through my day. My family has been under a lot of added stress since moms passing. Family members trying to stir up problems. I'm sure you and everyone can associate with that. There's always one in every family...lol. Like added stress is anything we need right now. So, I've been harboring a bit of ill will and bad feeling toward some family and friends for a month or so now. I have been praying hard on it, and it seemed today that God is lifting some of this and things are hopefully starting to be resolved. My beef is....it was nothing to do with me in the first place, yet everyone had me stuck right in the middle of their mess. Oh well....family...gotta luv em, right? My husband and I are leaving out Sat. the 22nd to go to PA to visit his folks for thanksgiving. It's been a year since we've seen them. Last year, I was up there calling mom on the phone trying to understand her talking to me that I could barely make a word out here and there. This year, she's gone. So very hard to believe. I decided to undertake putting up my Christmas Village for the first time in years. It has grown beyond what I ever intended it to be, I have a challenge before me...lol. When I get home from PA, I'm gonna decorate that tree, and I'm gonna remember my mom with each ornament I put on it. And, if God allows us to have a look down here now and then from heaven, then I know mom will see it. I thank God for good folks like you too Lesley. I am so thankful for this forum and that we all have each other to talk to. Our loved ones and our friends, they care and they try their best to understand what we've been through and are still going through. But, I believe only us who have had to live through this hell really understand the impact of it. You'll be in my prayers.
God Bless
*Mom, Jean, 72, symptoms of PSP since 9/07, diagnosis of possible PSP 2/08, met her Savior 9/15/08.*
LRS
 
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Postby tony111b » Wed Dec 10, 2008 6:50 pm

hi Lisa,
Christmas and all other holidays are difficult, with out our love ones, i just lost my mom on December 7th and i don't know What Christmas holes for me now, or if i can celebrate it without my mom, Christmas was my moms favorite part of the year, she used to put up our decorations in October we would be the first on the block with the decorations up, she loved it she collected ornaments for years and proudly display them all over the house. This year i put the decorations up last Tuesday and she sat in her chair smiling and i knew she was happy it was Christmas, every year since i can remember she would dress all the family up on Christmas eve and we would go to mass and i hope that i can do the same this year, her passing is still very raw in my hearth and i don't think it will ever go away. i was her baby and her carer, be strong at Christmas its the time of year for peace and forgiveness.
Stay strong

Anthony
My Beautiful Caring mother was diagnosed with PSP in 2004 She Recieved her angel wings on the 7th of December 2008
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Postby momppsp » Wed Dec 10, 2008 6:57 pm

The key is surround yourself with family. When my MIL passed on Dec 19 and buried on Dec 23, 4 years ago, family was the key. It really wasn't that bad, but of course, it wasn't MY Mom. It's much more difficult this year since it's my own Mom. But family is the key. My daughter and I decided to forgo presents for each other and bought for a 16 year old through Catholic Community Charities for the less fortunate. It mad me remember the reason for the season. Giving.

Maybe, do something for someone you know, an elderly person that needs company, food, etc. Serve the food line at a nearby organization. The world has changed for all of us and now we have to make the best of us. Give like our parents gave to us.
Now I'll get off my soapbox.

Hope everyone has the best holiday season we can muster up.
Deborah-Mom w/PSP symp 9yrs+-diag. 6/04
received her wings January 10, 2008
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Postby Crazy Mary » Sat Dec 13, 2008 1:53 am

Here's something I had never heard of before. The funeral home where Bruce was this year are doing a memorial tree in the town park. You can either put your own ornament on the tree or they will do one for you. I thought that was very sweet and was good for family and loved ones.
I wish Bruce was closer than he is so I could go see him more often. Instead I talk to him here and write my letters.
Thanksgiving was difficult because Bruce so enjoyed the food. Before he got sick he would eat three plates full of turkey and fixins and then after an hours rest a couple of plates full of deserts. Everyone made the comment about how much they missed having him there and his jokes always kept us going. Now Mark seems to have stepped into the joker roll.
I really miss him now he's back in VA. It seems so much easier when he is home. I know they say it gets easier but as you all I find myself okay one minute and falling apart the next.
Sometimes I just don't know what to do without Bruce. We were together 24/7 from the time we met each other for the first time. I expect to turn around and he will be there. But he's not. I know when we are together again we will be laughing and joking just like we use to. Until then I will keep writing my letters and missing him with all my heart. But I will go on living for my family. I did put up a tree for Mark and decorated the house and when my granddaughter Maddie said"Look Mama Bear has Christmas" it was worth it. Bruce would've gotten a kick out of her saying that.
There's no reason behind PSP and what it does and takes from us but we can't let it win. We need to go on.
Mary
wife of Bruce 54 years old diag.2003 symptoms since 2001. Freed of PSP on Aug. 19th 2008
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Postby LRS » Sat Dec 13, 2008 11:36 am

Please keep our family in your prayers. Along with the difficult task of getting through the holidays without our mother, the lady whom was always thought of as my mom's best friend has really been dumping it hard on our family. Before mom's passing, she asked for a couple of gifts she had give our mom to be given back to her as a memory of mom. Of course we agreed with all intentions of her having them. A couple months before moms passing, this lady started showing her true colors. She deserted our mom in her final months, and tried to blame it on my sister and I. There were some disagreements between 2 sisters (Kam and I) that have been worked out now. Mom's friend was only looking for an excuse not to have to watch mom go through what she was. Even after the ugly way she treated us all, we contacted her about mom's passing. She came to moms memeorial service and we hugged her and told he we'd always love her, but we didn't welcome her back into our lives, there had been to much hurt and betrayl. Now with the holidays upon us, she has picked this already hard time to start contacting and threatening us. She wrote Kam a letter before Thanksgiving with a list of items she wanted returned to her, items even she listed as gifts. Gifts are expected to be returned, right? Some of these items dated back decades, we have no idea what my mom may have did with them. I did find a music box that her friend had requested back and have it here to clean up and deliver to her. Anyway, she struck again today, right before Christmas to threaten us by hiring a lawyer to reclaim her gifts to mom. I know it is an idle threat from a disturbed woman, but, we don't need any of this right now. I haven't even really went through my mom's things. The time just hasn't been right yet. Plus, my stepfather is in the house, I'm not going over there at Christmas, tearing the house apart to look for earrings. I'm not going to upset him like that. I emailed this lady back and told her what was found would be returned, but that I have no intentions of sorting through anymore of moms things until at least springtime. I asked her to have no more contact with me or any of my family. Why????? Why do people thrive on hurting others? The ones who claim to be your best friends can stab the hardest in the back. Sorry for the venting.
God Bless
*Mom, Jean, 72, symptoms of PSP since 9/07, diagnosis of possible PSP 2/08, met her Savior 9/15/08.*
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Postby Crazy Mary » Sat Dec 13, 2008 11:22 pm

Lisa, I certainly wouldn't pay any attention to her and her idle threats. Gifts are just that and are not expected to be returned period. Even though we are designating things of Bruce's to go to certain ones. I haven't been able to let go of them yet. I just can't seem to be able to let go yet. I won't let anyone push me at this point.
Anyone who pushes like that is not only unfeeling but selfish. You and your family are having enough to go through you don't need anything else.
Take care you and Kam
Mary
wife of Bruce 54 years old diag.2003 symptoms since 2001. Freed of PSP on Aug. 19th 2008
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