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Sadie's inspiration and my mother's condition update

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#1 Glenwood



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Posted 07 July 2008 - 04:42 PM

Hello all,
It's been awhile since I've had or taken the time to check in and when I did today I found the postings from Sadie. I am so sorry Sadie that you are going through this, but so glad that even through your struggles you are so upbeat. I'm glad too that you have found hospice such a welcome relief.
I had posted a few months ago that my mother was in the hospital with accute kidney failure and I was looking for support on what to expect. Since that time she has progressively gotten worse, hidden a lot of the "real" issues from my brother and me and a week before a planned trip to Hawaii on June 23rd went into the hospital again while they were trying to do a calcium injection. This time, her doctors finally told her they couldn't do anything more for her and suggested hospice. What a shock this was to me that she was suddenly in such a situation. I think her and my dad made a pact to keep things sounding more positive to my brother and his family, and me so we wouldn't worry.
Against our better judgment she got on the plane. 3 days into the trip the vomiting and diarreah started again and 3 days later dad took her to the emergency room in Kona to have a saline solution so she could rehaydrate and get on the plane to come home. On the way to the airport she had a panic attack-I thought she was having a seizure. She barely made it on the plane and dad said she was aggitated and crying the whole way home. Since then, June 29th she has been home bound and pretty much to a wheelchair and basically hasn't had anything to eat for 2 weeks.
Unlike so many of you I found in this forum, my mother has decided to no extraordinary measures to sustain her life. And she never quit smoking or having her daily margarita. This fact has frustrated me to no end. My dad has been trying to care for her this past week at home but today the aggitation began to worsen and she is fighting him on everything including taking her zanex so he is now considering admitting her to full time hospice tomorrow.
So again I came here searching for information to help me figure out how far along she is and how much time we might have with her.
I am truly inspired by everyone's thoughts and sharing of information and willingness to share your stories. If anyone has any information to help me understand where we are right now I would greatly appreciate it.
Thank you!

#2 truman


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Posted 07 July 2008 - 08:02 PM


I don't know how much I can contribute other then to sense your mother is fiercely fighting for her independence; something I can understand. If the situation is at the state to which Hospice is involved, I hope you can allow your mother the room and grace to maintain her wishes. My thoughts are with you and your family.

It is what it is...........

#3 jefa


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Posted 07 July 2008 - 09:56 PM

Hello, Glenwood. You and your father are certainly in a difficult position. Tru has a point in suggesting that your mother may need to feel she is making the decision for herself. She may feel that she is being shunted away someplace. I can understand her desire not to have heroic measures taken to extend her life, but perhaps she does not fully understand the principle of being made more comfortable while she waits. Since she is clinging to her comforting habits, it would seem she might be willing to accept one more palliative treatment. Have you and your father considered the idea of home hospice care for your mother? You might find it interesting to read an article about caregiving that has just been posted from the newsroom:

When and How To Say "No" to Caregiving
Warm wishes,

Carrie Maddoux
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(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#4 barefut


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Posted 07 July 2008 - 10:23 PM


What a tough situation for your mom and family. I agree with Tru and jefa regarding your mom's feelings of independence and her need to make her own decisions. Home hospice is a great idea. Can it be presented to her as one of a few choices she can make for herself?

My thoughts are with you and your family.

#5 Peggy


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Posted 08 July 2008 - 04:27 AM

I am so sorry for what you are going through. I lost my Mom last January and was with her entirely for the last 3 weeks of her life and watched her die. It was so hard but I was going to be there for her as I know she would be there for me. I followed her wishes and let her dictate what she wanted and when she wanted it. If there is a clergy or counselor that your Mom would feel comfortable talking to that might help facilitate what needs to be done and how to do it that might be a good idea. If there is a doctor or nurse that she is really comfortable that might be able to come and talk to her and see if she would be agreeable to home hospice. This is such a hard time as the emotions are so hard. Please know that I am thinking of you and I wish you all the best.

Warm hugs,


#6 Glenwood



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Posted 08 July 2008 - 04:39 AM

Thank you all for your thoughts. Mom has been under home hospice care to the extent her insurance will cover for the past 3 weeks. This morning my dad decided he could no longer care for her on his own so he is transferring her to a facility. She will not take her meds (which include zanex for the anxiety) and is thrashing at him to stay away from her. She appears to be moving into non-lucidity so he has decided he needs help. Hospice here will not do anything with IVs with "in-home" care, so hopefully if she goes to the facility we can get an IV in her and hydrate her and get her some meds to make it more comfortable for her.
I'll know more by later today what is happening.
Thank you again.

#7 lizzie


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Posted 08 July 2008 - 07:11 AM

Hi Glenwood, so sorry to hear the stae things have got to with your Mum. It must be so dfficult and distressing for you. One possible cause of non-lucidity and the type of behaviour you describe is dehydation. You may find that your Mum improves once she is properly hydrated.

#8 kellyA


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Posted 08 July 2008 - 07:48 AM

So Sorry to hear what you are going through, I lost my mom last october to pancreatic cancer and she spent 2 weeks in hospice, it is my understand that hospice will not give IV's, my mom was severely dehydrated and they would not give her one, when I asked why their answer was "we are here to make her more comfortable not to pro-long her life", maybe all facitilities are different. My thoughts are with you and your family..


#9 Snowbird


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Posted 08 July 2008 - 08:21 AM

Hi Glenwood

I can't offer any better advice than the others have given you. I hope as a family you can find a solution to make things better for all of you. My thoughts are with you and your family as well.
Sending good wishes your way!

#10 Michelle2


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Posted 08 July 2008 - 11:41 AM

Hi Glenwood~

I just wanted to express to you that I am so sorry to hear what your Mom, you and your family are going thru. You are in my thoughts.

Please take care and stay strong!
Take care and stay warm,


#11 Guest_Sadie_*

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Posted 08 July 2008 - 12:50 PM

Glenwood, I'm so sorry to hear about your Mom not doing well.Yes, I have Hospice home care. There are several different Hospices.
The name of mine is Trinity Hospice. I do have Sugar water that goes through my picc line since my body doesn't hardly absorb it. It is to keep me comfortable but it isn't a cure or anything. You may want to check to see if there are any other Hospise in the area because they may have diffrent rules.
Best wishes!

#12 debonair susie

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Posted 09 July 2008 - 02:31 PM

I am so sorry...to read your frustrations is so hard. I really agree with tru on this.

However, if she will take fluids, without forcing her...that would be a good thing. Have that be your marker and let her lead the way.

I hope she takes the fluids, because then, it will help you discern, whether or not she's lucid. Otherwise, I still need to go back to what tru said.
This has to be so hard for you, but please...keep us posted, if you are able.

Soft Hugs to you and your mom.
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#13 smac0719


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Posted 10 July 2008 - 04:20 PM


It's hard to "hear" your current ordeal, but I hope that things improve when your mom moves to the facility. We used hospice with my dad when his lymphoma started to get the better of him. He was such a strong willed person; wouldn't take the pain meds (we think because he didn't like the way it made him feel) wouldn't eat because of the lack of appetite and so forth. We found Hospice to be a great source of help and support until he had to be moved to the VA hospital. In the hospital they were able to give him IV meds to keep him "comfortable". You will be in my thoughts.
I may have Scleroderma, but Scleroderma doesn't have me!

#14 Nina


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Posted 11 July 2008 - 08:35 AM

Glennwood ~ although I don't really know you, I have read of your situation. I am so very sorry for what you have to go through, my thoughts are with you and your entire family, particularly your Mother.
In the past year, I have lost my brother (62 years.), my niece (46 years.), my sister (69 years.) a very closer brother-in-law (62 years.), my elderly aunt, and my dear next door neighbor. Loss is never ~ ever easy. I feel numb at times when I think of this past year.
Then I come here and read of someone like Sadie and you ~~ I snap back and realize that we all have been given our crosses to bear.
I'm so glad that you have this place to come to, and I'm glad you feel safe here.
Please know that many, many are keeping you close during this difficult time.
Much love,
Nina ~ DE