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Started by kath_7
08 Nov 2012, 10:28 AM

My 90 year old Mom was sent home 18 mths ago  and given 2 months to live. She rallied back several times. She has end stage renal failure. Less than 10% left when sent home.

I am her primary caregiver and she has lived with us for about 30 of our 36 year marriage.
Last wek she took a turn again. I finally called her palliative docter and he came to see her. His opinion is that with all the symptoms she was displaying this was the final turn. He took her off her many medications and put her on haloperadol.

Here is my problem:

I have 8 surviving siblings!

Many of them question the stoppage of her meds and felt that this might just be another false alarm. I finally relented, not happily and took her off the Holodol. To see what happened. They feel if they get her to eat she will gain back her strenght.

They Want to get her to christmas.

I love my Mom  and it is tearing me appart to see them push her to eat and stay alive for them. She ate a bit yesterday but I know it was to satisfy us. She can no longer gut up on her own to the comode. It is beside her bed. She can not walk anymore. She stays awake, but the moment anyone leaves the room she is asleep. Last night I put her to bed at 10 because she was exausted. from 1 oclock on she started fussing and wanting to get up because the nurse was coming at 8. this continued till about 2:30. She was itching teribly. I finally gave her an adivan to healp calm her. She slept for maybe an hour and then started again about getting up for nurse. When I told her the time was about 3:30, she just kept repeating OMG. She kept trying to get up so I finally got her out of bed and into her chair. She could not support her body weght at all. It took both Hubby and I to get her in chair properly. When we did all she kept saying was how did I get here!
She is finally sleeping now.    

I cannot stand seeing her like this and know in my gut this is wrong to prolong. I told siblings I would consider putting her back on meds today althought her doc said they will not stop this.

How do I get them to understand?

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Reply by Tian
08 Nov 2012, 3:00 PM

Dear kath 7

First of all you have my sympathy and I have great admiration for you and your husband for having cared for your mother all this time. My simple answer to your question is to have your siblings speak to your mother's palliative doctor so he can explain the situation to them. If they don't accept what he says then let them see a doctor of their own choosing. Any professional will tell them that forcing your mother to eat is counterproductive and while it would be great if she could get to Christmas her chances would be better if she was not in constant suffering. 

Could you clarify some things in your message. Where had your mother been when she was sent home 18 months ago? Was she in the hospital or a hospice setting? And I am confused by what you mean about the doc not stopping this.

Other people here can provide more advice for you. You have my best wishes.


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Reply by kath_7
08 Nov 2012, 3:54 PM

Nurse came  access mom this morning. She has strongly suggested a fsamily meeting to advise everyone at once of the situation and answer all their questions. She will also help set up a schedule for them to help.

She agrees that mom will not get better and is on the downward slide.

The nurse explained that giving mom her regular  meds will infact cause the chemicals to become toxic in her kidneys. The doc said taking them will not make her better as family was hoping they would.
Thank you for your wishes

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Reply by NatR
08 Nov 2012, 3:58 PM

Dear Kath 7,

Tian had some great points for you.  I can only say that I understand totally what you are going through.  The rest of your family members are in denial.  They only want things to stay the same...get through Christmas...and they dont seem to understand that this is their mom...it is her life...or lack thereof...and no one can just keep her alive to suit them

Your mom has a right to quality of life.  Tian was right in directiing your family members to a discussion with your moms doctor, or a member of the team involved in her care.

I agree with you Kath 7...give your mom whatever medications make her life easier to bear.  Who has Power of Attorney?  If it is you...then it is settled...just carry on doing what is right for your mom.

It is never easy...never.  But you already know in your heart what you want to do for your mom...I could hear it in your note.

It still is so very hard to actually put it into words, to allow things to happen that will result in your moms last days to progress.  I understand your feelings...torn between pressure, torn between doing whats best for your mom.  In the end...its your mom who matters...its her peace...her comfort...so I hope you have a counselor who can assist you in understanding...you are doing the best thing for your mom.

Peace today...
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Reply by Tian
08 Nov 2012, 4:25 PM

Great observations NatR. Your mother has been very fortunate to have you as a daughter and caregiver Kath 7.
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Reply by moderator | modératrice
18 Nov 2012, 1:09 PM

Hi Kath_7,

We haven't heard from you for a few days. Were you able to have the family meeting? How did it go?

This must be a very stressful and tense time to help everyone get to the same page. I hope the palliative care team was able to help your siblings understand the facts of the medical reality. None-the-less emotions and family dynamics can make even the clearest of decisions very cloudy. But your family can get help to help navigate through the emotional side too. Do you have access to a social worker or spiritual care advisor? Did you know that you can ask for this type of help?

As NatR said, it is never easy. We'd love to hear how you are doing. 
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Reply by kath_7
18 Nov 2012, 2:12 PM


 No, the family meeting did not happen. The family has finally accepted that she will die soon and has pulled out all stops to helpwithy have spoken to coax and gotten 21 hrs and have  chosen to use them for the next three nights two ensure sleep  for me.
i had the nurse come in this morning to put in a catheter, because it is causing mom huge stress not being able to get on commode. (It is  now impossible) 
he was not  able to put it in after three times. We are going to have to just up her meds. 

I have some moments of strength  and some not so much.

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Reply by NatR
18 Nov 2012, 4:02 PM

Dear Kathy

I am so sorry to hear what you are going through.  It is really hard and the good news is that your family has finally accepted what is happening to Mom.

I wasnt sure what you meant in your note..but assume that you managed to get CCAC to offer you some hours to help watch over your mom.  I am no expert, but I hope you are able to get them to continue to offer you enough care so that you can rest and then cope during the days.

Also sorry to hear about not being able to get the catheter in.  I am hoping that you have briefs and pads so that your mom can rest in bed and that her needs will be met.

How aware is your mom right now?  What meds are you upping...pain meds?

I am thinking of you today...hoping that you get some rest and that you keep in touch - even if its a brief update.  Again, you are in our thoughts...and you are not alone.

Remember that you are doing all you can, that you are only human, and that your efforts are so important to your mom.  You are giving her a gift that not everyone can give.  Remember that and let it comfort you - as you comfort your mom.
Sending you thoughts and a hug virtually,
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Reply by Tian
18 Nov 2012, 5:38 PM

Dear Kathy

Naturally your overriding concern is your mother's well being but I think you should not underestimate NatR's words of advice. You are all that a mother can expect from a daughter and you should take solace in that. Thankfully your siblings are now contributing positively but that doesn't put an end to bad days. To make the days less bad and possibly have some good days your  ongoing support of your mother requires that you not neglect your own needs. Yourself not being strong sometimes is to be expected. But having cared for your mother as long as you have I suspect you're stronger than you think. But you still need to take care of yourself to better care for your mother and knowing that you've been a great daughter can help. Our thoughts are with you.

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Reply by kath_7
18 Nov 2012, 8:56 PM

Thank you so much for your prayer.

i was given permission  to  up  her morphine as needed. That keeps her sleeping most of the time. When she does open her eyes they are not focusing anymore. I know I am doing everything I possibly can, it just does not feel like enough sometimes.

I am pleased I will be able to sleep tonight, for the next 3 nights in fact. 

 It is just so hard because I feel I need to be with her in the end. I am praying for god to give her peace.

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