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 Newbie in Texas- Seriously needs some support! 
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Joined: Mon Nov 24, 2008 3:19 pm
Posts: 3
Location: Texas
Post Newbie in Texas- Seriously needs some support!
Hello!
My Mom was diagnosed with Parkinson's Disease (or so we thought) in 2005. She was 58. After many Dr's and some awful medication side effects, things went downhill very rapidly. She was hospitalized 3 times early 2008 and then properly diagnosed and treated for LBD. She went straight from the hospital to an Assisted Living Center for Alzheimer/Dementia patients on March 28, 2008 at 61. My life changed forever that evening! I don't think I cried that much in years! Her illness coincided with me and my husband having our IVF miracle baby that took so long to have, so you can imagine it has been bittersweet. Some days I handle all the emotional baggage well and other days I am barely making it. I have my own health issues that I try to take care of. I am NOT good at handling stress anymore. I end up getting sick or just suffer a bout of pure exhaustion.

I am her only daughter and only child who lives IN the same state. We were incredibly close as Mother and Daughter and I don't know how to fully grieve her while she is still here. I mean I think I have a month that goes by with no crying, then a full day of on and off tears. I guess that will continue to happen until she passes. I am really enjoying each and every moment I do have with her. I do feel like somthing died in me that March evening when I knew she wasn't ever coming back to her home. My stepdad does comment I don't go over to his/their home much. I get terribly sad being there. There isn't a place in their home that isn't Mom. I want to join the Forum to learn from others and try to adapt to this horrible journey life has dealt our family as well as yours.

Somedays I feel like this burden is too much to bear, but I look at my husband and toddler son whom I adore and realize my life must continue. I just wish I felt "happier" inside. Can anyone relate???


Thanks so much in advance,
Crystal


Mon Nov 24, 2008 8:19 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Crystal --

My heart goes out to you -- and yes, everyone here can relate. We have all either been there or are there.

What would your mother want -- she would want you to be 110% present for her grandchild. She would not want your sadness over her to touch your precious baby. Your mom in her soul is very proud of you and happy for you. It is her body and brain that have betrayed her, but her spirit is right there inside of you and inside your baby. Make your mom proud!

Crying is good and cleansing and necessary. So is taking better care of yourself. Heck, it's exhausting enough being the mother of a toddler -- I can't imagine handling that AND your mom's Lewy journey. Have you been open with your husband about how you are feeling? Have you been able to share your feelings with any of your siblings? Talking helps. As does keeping a journal ... you might consider that.

You will find many, many people on this forum who are here to help, comfort, answer questions, and just listen, so please stay connected.

Good thoughts and prayers being sent your way!

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Renata (and Jerome-in-Heaven)


Mon Nov 24, 2008 8:48 pm
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Crystal,
Let me welcome you to the LBDA forums and I am so glad you found us, Yes LBD is a very sad disease and what should be such a happy time for you with a new child , may I suggest instead of trying to find a way to grieve , find ways to enjoy her while she is still here there will be plenty of time to grieve if and when the time comes. I have included a link that I thought you might want to see, Robin posted it a few months ago.

As to your step dad have you told him how sad it is for you when you go, I am sure he is too and it will give him a chance to share with you also. Please join in a much as you like here, you will find so much compassion here and these are people who really understand what it is like to have a loved one with LBD.



First video: (about 11 minutes)
http://mediastorm.org/0009.htm?bcpid=57 ... =151750379

Second video: (about 15 minutes)
http://assets.aarp.org/external_sites/c ... erbie.html


Mon Nov 24, 2008 9:55 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Crystal,
Of course you are grieving for the mother you lost. I agree with the others: you need to focus on finding joy in your mother's life, and helping her find joy as well. Just because she's in a facility doesn't mean she's dead. Focus on making her room in the facility her new home. If she's receiving proper pharmacological treatment, she may still have good days and good moments. Make the best of them!
Robin


Tue Nov 25, 2008 12:29 am
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Joined: Mon Nov 24, 2008 3:19 pm
Posts: 3
Location: Texas
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Thank you raff, Irene and Robin for your kind posts. I was rushed when writing (watching my son closeby) and quite sad because of the upcoming holidays. (We are still going to have turkey and have a meal with Mom at their home on Thurs) I will watch the videos you sent Irene.

I should have mentioned that my dad brings my Mom over to my house every Sunday for lunch and we spent about 4 hours total together that day. She loves watching my son play and he adores her. I take LOADS of pictures or videos and we sit by one another and I listen to her, hug her and kiss her hair. She reaches for my hand and I hold it as long as she will let me. She recently started "sundowning" so my dad takes her back extra early and it's been working to keep her on a schedule. When we moved her into her room last March, we decorated it with LOTS of love, photos, mementos and "comfort" things. We brought special things that is of the past as well as some new things. She also visits my house about once during the week where I get to sit next to her and hold her hand and just "be" with her. I make her her favorite hot tea. I try to just soak up her essence. I still see the light shining in her eyes at times. Sometimes they are blank and my stomach just churns. I realize she isn't dead, as my dad does, and that is why he takes her out of the facility to visit me or take her to her favorite, quiet restaurant. We got her a phone(she and I talked everyday before the disease) and my dad programmed it for her to push one button to call me, my dad, my husband or my brother. She still calls me everyday or somedays maybe it's 15 times a day I know it's the disease. I know one day I will miss her voice so I am always loving and patient and take the time to listen even if I don't understand a word she says. She STILL would want to live her instead of just sitting there all day. She has trouble relating to the other patients because she is very outgoing and friendly. She was a counselor for 20 years so sometimes she wants to "help" them and they don't like that much. She was driving this time last year and things moved so rapidly that we are still stunned. I do go visit her at the facility but not as frequent as before because her room is small and my son is RUNNING now! lol She was such an independent person and when she is lucid she will verbally "fight" the whole process of actually accepting she has to stay there at the facility. The Dr that oversees her case (she comes weekly) recently said my Mom has not adapted to the facility. I really can't blame her though. She knows her beautiful dream house and garden and new car are gone. She wonders what she did so bad to deserve this disease. That is when my heart breaks for her. She has moments when I think for a split second, she is better...OK, maybe even getting healed. That lasts about 3 sentences. Then it's gone from there. She has an unusual amount of fear and I hear that if that is how you were before LBD, you'll probably be that way after. It's torture to see her cry and say, help me. I want to go home. She was a fearful child and she talks about her childhood. My dad, my husband and myself are the 3 main people that she trusts and turns to. I am blessed to have a husband that truly is compassionate and caring and understands how I feel (even if I don't sometimes) I just miss her..... That's the bottom line. I haven't had to watch anyone suffer like this. Losing themself and then waking up each day terrified inside.

Thanks for listening agian.
Many Hugs!
Crystal


Tue Nov 25, 2008 1:13 am
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
Post 
I do understand - my Mother also has LBD. We are also best friends. It is very difficult to watch her go downhill. Fortunately I've been able to keep her with me. I'm single so easier for me.
She is like your Mother with babies- my brothers daughter brings her little one over almost weekly and she just waits for the baby to come. Saturday after Thanksgiving everyone is coming here (how to fit 25 people in our apartment?) she is happy all the Grandchildren will be here and all 3 Greatgrandbabies :-). -of course she'll drive me crazy till then- she used to be able to handle masterminding the entertaining and will still try-
Try to enjoy the time with her- it seems like with my Mother new or different activities keep her more engaged longer. - at home she is in and out of it a lot but if I take her out to shop or a meal she does ok for a long time.
Take care
Sharon

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syt


Tue Nov 25, 2008 8:17 am
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Joined: Fri May 11, 2007 12:54 pm
Posts: 115
Post Newbie in Texas- Seriously needs some support!
Dear Crystal,
I am so sorry to hear the pain you are going through. You are doing the best you can do. You are very strong and brave and doing a wonderful job loving and supporting your mom and taking care of your family. I echo everyone who posted here and want to let you know that we are all here to listen and support you in this Lewy Body journey. I know what you are going through. My mother-in-law had LBD and just passed this last August. My children are 22 and 17. They were 18 and 13 when she was diagnosed. But, my mom was in a nursing home since I was 4, she passed in 1995. I took my kids to visit her as much as I could and I know what it is like to try to corral an active baby while trying to be there for your loved one. You are amazing!
It's good that you just sit with your mom and hold her hand. You are conveying so much love in this simple act. Our loved ones crave that sense of touch and being touched. You are doing great! But, remember to take time for yourself. It is very easy to get burnt out trying to be there for everyone. Take care of yourself, you won't be selfish. It will help you to recharge your batteries and be a better daughter, wife, and mother. Keep coming back to this site and posting. I would not have made it through without this web site. We are all here for you.
My thoughts and prayers are with you.

Joyce K


Tue Nov 25, 2008 10:35 am
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Joined: Mon Nov 24, 2008 3:19 pm
Posts: 3
Location: Texas
Post 
Thank you SO much mm. Sharon and Joyce K. I composed another reply post and it's not showing up! :roll: Operator error I suspect. :) I wanted let you know how warm your posts are and that I feel so much better knowing that I am not alone. I can only look forward to posting such a post to someone new and providing a bit of "care. concern and love and wisdom" as you have to me.

mm- I REALLY loved the statement, "Finding the blessings while living the grief." THAT is something that I can secretly say to myself in moments I feel sad or helpless. Those words spoke to my very core. THANK YOU!

Wishing you all a peacefilled rest of the day!

Crystal
PS- Today is Mommy's Day off as my son is with his other grandparents and I am napping, reading and just "being" Ahhhhhh........


Tue Nov 25, 2008 3:44 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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I also loved the MM phrase "Finding the blessings while living the grief."


Tue Nov 25, 2008 7:51 pm
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