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Old 01-22-2009, 07:49 PM   #1
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Okay hold the towel across because i'm gonna jump!!!! Catch me!

To all,

it is with a saddened heart that I report that the hospital called me at work today to tell me that they needed me to come to a meeting today about my mother's care. They spent 40 minutes talking with my Sister and when I asked how did that go they said that they knew it was hard for my sister to hear some things but that she wanted them to give my mother Namenda and they could tell she was holding onto every shred she could.

So I left work and joined Sister. Before hand I stressed that while I talk all the time and very eloquently, I wanted them to direct everything to my sister out of respect for all that she's done for my mother.

When I got there, we were called into an office and they asked my sister if she remembered everything they told her and would she share that with me. My sister said, they told me there is nothing more they can do for Mom and that they are recommending moving her. We have our opportunity to either take her home with hospice help or put her in a hospice facility. I also heard that she opted for the facility saying that she couldn't put me and the kids through losing someone at home again not after losing my husband while at home.

We then went to the facility to check it out. My Sister's been ok for the most part but I can tell she is so very torn and hurt. She was crying saying she was trying to make sure Mom didn't get sick in January and doesn't want her to die in January. When I said "huh?" she said "her mother died in January, her brother died in January. I said "Sister -- with 11 siblings, if you checked the death dates of all of the siblings and any other family, friends or enemeies that died already, you'd find someone in each month. I said what are you doing to do, look through a calendar and say "yep, no one died in May, okay Mom you can die in May?". I said, what does this have to do with anything? She said, I know you're right but I can't believe I'm killing Mommy. I just wanted her to live.

I said, "you are not killing her, I'm not killing her, its the disease that is killing her!". I said, her brain isn't letting her eat, she can't swallow or chew. The only thing keeping her alive right now is the IV. We gave the hospital my mother's living will and it clearly states that if she would have an incurable or irreversible situation, she was instructing no means taken that would lengthen or delay her death.

The hospital told Sister to realize that the document is a gift from my Mother to release us of any guilt or blame for what is to happen.

So Sister is going to deal with the financials for the hospice facility and she'll probably be moved sometime soon, they want her out of the hospital.

Then it becomes a wait and see with her. It depends on when her body starts to shut down. She hasn't had any food since Friday night. So with he exception of the iV righ now there no nutrients. Sister was trying to insist that they give her Namenda but I said, "why?" she said "Mommy will eat, it will stimulate her brain". I said "for what, she'll be more alert and then become combative and then they'll have to restrain her and then sedate her and it'll cycle around again.

They told Sister what I heard here from others. They stop giving that type of medicine when they realize that the body has no way to process it anymore and that its usually only given in the early stages and not given to someone who is in such a late stage of this illness.

So now that I am not spat on the pavement, I know each of you helped catch me. I felt surrounded by your love and am so glad to have each of you in my corner. Say a prayer that God takes my mother tonite, tomorrow or very, very soon. Not sure how much more it can be.

Love you all
Diane

Last edited by caringsister54; 01-22-2009 at 07:51 PM.

 
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Old 01-22-2009, 08:05 PM   #2
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Re: Okay hold the towel across because i'm gonna jump!!!! Catch me!

I'm so sorry, Diane. It's awfully hard to watch someone slip away. After watching my 54 year old brother-in-law reach that point, (alcoholic dementia and tongue cancer) it sure isn't easy. Sorry to say, but it can be a long process.

We'll be here for you.

Prayers to you and your family

Love,
Diane

Last edited by sunnydaze1; 01-22-2009 at 08:06 PM.

 
Old 01-22-2009, 08:07 PM   #3
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Re: Okay hold the towel across because i'm gonna jump!!!! Catch me!

As in my previous post to you...I want to call you "caringsister"...how well that name describes all you have done to help your sister understand, stand at her side, and try to hold her up even though she's crumbling....bless you, bless you, bless you!

Your post brings sad feelings, yet the tiny suggestion of your Mom's release from this horrible disease makes me want to help hold YOU up, my friend. You have to be the strength your sister needs now...and perhaps you'll find you have much more of this than you could ever know.

I'm just so sorry.......this is a long journey with no shortcuts. Please know you are all in my prayers........Pam

 
Old 01-22-2009, 09:30 PM   #4
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Re: Okay hold the towel across because i'm gonna jump!!!! Catch me!

I am so sorry caringsister. This is gonna be rough. I've got my tiny corner of the towel and am clinging with all my might. I can also perhaps offer a little insight into how your sister feels. When you provide care, or otherwise take a difficult risk for someone you love, whether or not you set out to have others see you as such at some point you become a noble martyr. Folks praise you for your courage. When your loved one dies, you grieve not only for them but for the loss of yourself. Caring for the beloved has become how you define yourself, it's how others see you and intended or not, it becomes how you see yourself. When that ends, you are bereft not only of the one your love, you simply don't know who you are anymore. Continue to honor your sister, she will not only be losing a mother, she'll be losing a way of life. And you...have absolutely earned your moniker.
With love and prayers,
Q

 
Old 01-23-2009, 03:54 AM   #5
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Re: Okay hold the towel across because i'm gonna jump!!!! Catch me!

Dear Diane, oh no, this what you were afraid of. It is horrible news, and I thank God you vented to us and did not jump. It brings back Mom's death so vividly. It is devastating.

You are doing the right thing. Mom was cared for by Hospice nurses in the last stages. She outlived everyone's predictions ... stopped eating in April, lost weight down to just over 70 pounds, died in December.

Hospice takes over when the person has 6 months or less to live, yet my Mom took 8 months. In some ways it is better if it goes faster.

Our thoughts and prayers are with you and your family.

Love,

Martha

 
Old 01-23-2009, 05:54 AM   #6
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Re: Okay hold the towel across because i'm gonna jump!!!! Catch me!

Dear Caring, I'm so sorry that Sister is fighting this all the way. It makes things so much harder on her and you and most importantly your Mom. It should make things easier having a living will from your Mom but sister is still looking for some magic pill that will help. That is so sad for you all. Q said it very well, caring for your Mom is how she defines herself. But you know that about Sister don't you?

I've got my corner of your towel and I'm holding on tight. Your a good sister and thats not an easy job at times. My Sister felt like she was killing Gram also. When clearly Gram was dying from this horrid disease. It took a few days for me to help her realize that Gram had the right to pass on and that she was keeping Gram here for herself. Gram could not swallow, see, or process sounds. She only cried out for her Mom. She was not on one drug, not one, until Hospice gave her morphine. As I have told you before she passed away with us holding her hands comforting her. She was 97. Today is the anniversary of her death. I just realized that its today...........

I'll be thinking of you all. And praying that this torture is over soon. Hold on to your boyfriend and take time for yourself. Its so hard we know..... Keep in touch Caring.

Love Chris

Last edited by DrewsG; 01-23-2009 at 06:04 AM.

 
Old 01-23-2009, 06:25 AM   #7
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Re: Okay hold the towel across because i'm gonna jump!!!! Catch me!

Diane
Your mom has excelled to a whole new level of care in this process. Hospice is the best thing for her at this point. Sister just wnats her to come home so that every thing will go back to the way it was. By placing Mom in a facility she looses the feeling of control she has over it all. Now with her being in a facility it means she is loosing her all together. That is a very hard reality to face after she spent all theses days, months and years doing only the one thing that mattered to her: "Taking care of mom in the home". This change is very scary for her! It changes the whole dynamics of the situation. You have done exactly as you should: You have been with sister through this whole journey every step of the way!! It is not an easy road to walk.

Love Pauline

 
Old 01-23-2009, 07:10 AM   #8
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Re: Okay hold the towel across because i'm gonna jump!!!! Catch me!

I have leanred a lot from your posts. So sorry you are hurting now.

 
Old 01-23-2009, 08:34 AM   #9
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Re: Okay hold the towel across because i'm gonna jump!!!! Catch me!

Dear Diane,
I'm glad you have somewhere to come and a good, strong towel to hang onto. I know I'm the weak link here, having much less experience, but even the weak link can help hold the towel. Keeping you in my thoughts, along with your mom, sister, and family.

You're doing all the right things!

Love,
Emily

 
Old 01-23-2009, 09:10 AM   #10
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Re: Okay hold the towel across because i'm gonna jump!!!! Catch me!

CaringDiane,

Oh my dearSis, Don't worry..I'm holding on so tight to that purple towel that my fingers are turning purple. THere is no way we are letting go of that towel. We have it tight around you..can you feel it? IT's so tight that you can barely breath.We will keep you safe and snug, wrapped in our care and love and concern, just as you have taken care of so many others.

I am so sorry that it has come to this, but it isn't unexpected. When you wrote about mother it took me right back to when Momma passed and I knew that you were headed down that same path. I wish that I could say that it was going to be quick, but there is no telling how she will go. She could pass in a few days like my mother did, or she could linger for months like Martha's mother did.

I don't know which would be better for sister. would she be happier having mother linger so she could continue to visit her and extend her goodbyes, or would a quick passing be better? Either way she is going to lose mother and what she has seen as her very existance for these last however many years. She has devoted her heart and soul to her care and very being and this will torture her. I am truly sorry for her distress -and for what she is going through.

ANd for you my dear I am so sorry for the burden you are carrying. IT is difficult to have to be the one to make sure that sister understands what is being conveighed by the doctors and staff. It is hard to be the one to tell her what they mean. It is hard to be the bearer of bad tidings as the phrase goes. You have been such a support and help for her and your mother. This is such a difficult time-and it isn't going to be any easier. My heart breas for you and sister. May mother's guardian angels carry her home quickly and peacefully.

and we won't let you falter or slip dear caringDiane. we will hold you tight and secure..hang in there and hold tight-we are holding on..
hugs...

 
Old 01-24-2009, 08:54 AM   #11
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Re: Okay hold the towel across because i'm gonna jump!!!! Catch me!

We have you tighly wrapped Caring. I am truly sorry that your Mom has reached this level and your sister is still having such difficulties dealing with the reality. You are so very grounded and as well as caring. You are constantly thinking of your sister's well being. Just remember to take care of yourself as well.

Hospice is an amazing organization. They do wonderful work and will help guide your sister to acceptance as well as give your Mom what she needs. Let them help you are as well.

I do hate your journey has come to this point. Hang on to the towels that are all around you. We are here with you


Love Deb

 
Old 01-24-2009, 01:58 PM   #12
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Re: Okay hold the towel across because i'm gonna jump!!!! Catch me!

went to hospital today to see about Mom -- Sister looks likes hell and is vaccuuming. I told her i was going and she said "why don't we go together in one car?" I said "Sis, its not necessary that both of us go and sit looking at the four walls and watch her sleep, I'll go and you can go later if you want"

when I got there and kissed her forehead, she woke up and immediately starting saying "la la la" I said "no Mom its not (sis) its me diane". But although she did reach up several times to get my hand and hold it while she fell either to sleep or unconscious, every time I removed it she would wake up and moan.

I went to the nurse and asked if she was given any pain medicine and the stupid (sorry nurses out there) nurse said "no she hasn't been, why is she in pain??". I started to cry. I said "how the hell should I know, she can't make her needs known but if she's moaning, couldn't that indicate that she's either uncomfortable or in some pain from something?" Nurse said "i'll come in an access the situation and it was about 10-15 minutes later that she did.

then she said "okay I'll call the doctor and ask about the pain medicine". Why would that not automatically be on the chart for someone like her? Even if she's not in pain, the medicine won't do anything negative, but if she is in pain, it will make her comfortable. She's still on the glucose IV.

hospital is awaiting Sis filling out hospice paperwork and meeting with the finance person there to determine cost, until then they can't move Mom and hospital wants her out of there real soon and said they can't keep her too many more days. I hate the F-in insurance companies and such. Mother has Medicare and a secondary insurance so what the heck is the problem?

So I'm about to call the doctor myself and say that I want a notation on the chart for my mother that no matter what! I want pain medicine administered.

I cried so hard sitting in the chair and reading the newspaper and periodically looking over to her. When she did 'wake' up it was sad to see how she's suffering. I prayed to God, my father, my husband and even stopped by the cemetary plot of her two brothers that she lost within 7 weeks in 1993 and asked them all to help facilitate this transition to heaven as fast as possible to end her suffering.

sister just keeps crying that she's killing my mother. I keep saying 'no, its the brain that failed mom and you're not doing anything but following the Living Will/medical directive that was written at the beginning of this journey. it clearly states "should i be diagnosed with an incurable or irreversible medical condition, nothing should be done to prolong my life and delay my death'.

This is so hard everyone,
keep holding me up. I treasure each and every one of you.

Diane

 
Old 01-24-2009, 02:35 PM   #13
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Re: Okay hold the towel across because i'm gonna jump!!!! Catch me!

Dearest Diane.....
I wanted to also grab a piece of the towel and send out biggest hugs and much love to you at this time. Your post has really touched me today as I think about my own situation with grandma. I think my grandma and your mom could be in the same stages.
Diane, you are doing what you can....and that is so important. My mom also supports her brother who is Grandmas sole caregiver, and it is very hard on her. My uncle is exactly just how Quetzelmom described in her post what it is like to be the caregiver.
This will be really hard for your sister, yes, she will lose a part of what her life has become, but dont forget to take time for "you", you will experience a huge loss also. It's really hard to lose our loved ones, and to watch others around suffer because of it.
My heart goes out to you at this part of your journey. Please know I am also in your corner saying prayers for you.
Love, Caroline xo

 
Old 01-24-2009, 05:47 PM   #14
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Re: Okay hold the towel across because i'm gonna jump!!!! Catch me!

Thanks to all. I was just sharing with BF tonite when he asked me if I asked Sister if she finds it odd or better not having mother with her at home. I said i can't ask her that.

i know that when my husband was diagnosed with progressive kidney failure in June of 2003, the stages of it from the notice to death was 2 1/2 years just about. And there was a lot to maintaining this illness as we had to go to a transplant seminar not just once but twice. We had to meet with social workers about being a transplant patient, had to go to hospitals in middle of the night as each blood test came back with something new that had to be address; low potassium, high electrolytes, etc. Each week was a seasaw.

After his death, i didn't realize how the demands of his illness became a part-time job so to speak.

Even now in 2009, I still feel loss. Still feel that i don't belong ANYWHERE.
i pay rent to my mother for the right to live where i am. I don't truly have any connections to my in-laws so to speak and I certainly have a 'dating' relationship with BF at this point. I'm 54 with nothing to show for it. I keep describing my feelings as being a fishing bobbin, bobbing in an ocean with no land in site. The only good thing that had occurred and keeps me going is that I was worthy of my husband's love each and every day since I met him and i have two wonderful great young adults as a result. Each day they afre with me is a gift from God and they are both desiring to be teachers so knowing they'll be what i was born to be and never did, makes me feel that I actually had a purpose here on earth.

love to all, thanks for the kind words of support.
Diane

 
Old 01-24-2009, 07:13 PM   #15
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Re: Okay hold the towel across because i'm gonna jump!!!! Catch me!

dear dear friend, Im again so sorry for you. wish I could jump through this computer and hold on to you and be there for you. somewhere hundreds of miles away is a caring daughter, mother, sister, and friend thats hurting. keep us posted. disney world, faye

 
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