Final Stage of MS for my Mom

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Final Stage of MS for my Mom

Postby gertiebob » Tue Sep 20, 2011 7:44 am

My Mother is 63 and has PPMS. She was first diagnosed at age 30. Things got progressively worse at age 50. By 2002 using her walking became harder by 2003 she still had some use of arms. By 2005 a quadriplegic. In 2008 breast cancer, 2010 cellulitis, 2011 we found out she has "chronic inflammation of the gallbladder and stones" and as of July, the cellulitis has returned with five different antibiotics it did not go away.

This last reccurence, she was admitted into the hospital and put on an antibx/pen IV drip. Getting infor out of doctors is so HARD. Her primary that she might be septic but the hospital docs have not said this. The only doctor who was up front and honest was the neuro who came into see her.

He told her that she was in the final stages and has two choices. Next time there is an infection let it go and take pain meds or she can keep coming back in for the antibx/pen. This is the only thing that will keep killing the bacteria until it does not work anymore like the oral scripts.

She has expressed to me that she is DONE. However, she has started to show signs due to all the infections that she is often confused. I am an only child who has been taking care of her for over 10 years. This part is too much to handle and I know people do not like to say what they would do but I am flying solo here.

She says she wants to "give me a break" and go into a nursing home. I argument is if she is in the final stages, why leave home. My other question is what are her options to go peacefully? The infections cause her such pain and are getting worse. By doing the antibx is she just making it worse since they keep coming back?

There is no clots in her lungs or pneumonia (they did a chest x-ray), kidney function is good and the gallbladder is ok with the exception of the stone/inflammation.

She cannot get the gallbladder removed due to her breathing (heart is strong but lungs are weak). I keep reading posts about oxygen, feeding tubes etc. Is this a choice she has as well? Is hospices a choice?

I am really scared and confused as to what to do, what is around the corner and not wanting her to suffer for too long.

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Re: Final Stage of MS for my Mom

Postby robbie » Tue Sep 20, 2011 10:21 am

it is hard my biggest worry now is letting the ms take away the ability to end it in a dignified way.
this does not get talked about on this site but it's a real issue with some depending on how bad your disabled and how bad you feel just in general
we always say were all in the same boat but were not some ms might just end up being a big inconvenince over a life time and others find it hard to make it through each day
you came here for help and i'm sure someone will offer something that really means nothing but feels good in your head thinking that your taking charge,
i hope your mom finds peace with what ever happens,
Had ms for 24 years now.
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Re: Final Stage of MS for my Mom

Postby gertiebob » Tue Sep 20, 2011 1:25 pm

Thank you. The doctors have talked to us about Hospice and my mom has decided that is what she wants. She is on day five of the antibx/pen iv and today feels like she is getting sick again. The on call doctor and infectious disease doctor say there is no more infection due to the blood work results. I am guessing her body is making the choice for us all and I pray she can go in her sleep like she wants.
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Re: Final Stage of MS for my Mom

Postby gymbuff » Wed Sep 21, 2011 2:05 am

Hi gertiebob

I don't know if you are religious or not but if you are prayers will ease your mum's suffering and your pain at watching her suffer. I watched my mum die recently (not MS) but prayer helped all of the family through the tough time and mum was at peace when she finally slipped away
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Re: Final Stage of MS for my Mom

Postby HarryZ » Wed Sep 21, 2011 6:23 am

My wife suffered with MS for 36 years before she passed away in September, 2007. From 1996, when she had to quit her job,(nursing) the disease progressed slowly. She fell and broke her leg in 2001 and that set her back immensely.

The last 18 months of her life saw infections, poor circulation, loss of appetite, etc. Sitting in a wheelchair for 10 years began to take its toll on the body. In August 2007, she contracted pancreatitis and had to go into hospital. They were going to insert a feeding tube when she ended up having a respiratory arrest and she ended up in the ICU.

Prior to this last event, we had discussed what would happen if she ended up on a ventilator. She told me very emphatically that she wanted no part of being kept alive in that situation in view of how much suffering she had with her MS. Although it was a difficult decision for me to make, I told the docs to remove the respirator and allow her to peacefully pass away.

I can honestly say I know how you feel and the turmoil you are going through. Your mother has told you that she doesn't want to continue on with all the treatments that will only prolong her suffering. As difficult as it may be for you, I think I would respect her wishes. In the end it wasn't easy for me or other family members but we all knew that it was Marg's wishes and she didn't want to suffer any longer.

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Re: Final Stage of MS for my Mom

Postby SarahLonglands » Thu Sep 22, 2011 10:06 am

Very few people like to talk about the end stage, but it will happen to us all in one way or another. You mother has lived with this disease for a long time. If she is talking about a Hospice then I can't help but feel that she is right since you have to think about your own health as well. The Hospice and painkillers as required would be my choice. A good friend of mine tried for ages to care for her mother at home after she had a really bad stroke but eventually she had to admit that she could no longer cope.

An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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