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I just placed the call to put my mom on hospice but the hospice nurse won't be out to the house till tomorrow morning. She refused oxygen last Friday when her doctor suggested it and has been hallucinating since Sunday evening. At least she isn't in any pain. How low does her oxygen level have to get before she just goes to sleep and never wakes up? It is currently at 84 or 85 and I can only keep her awake for a minute or two at a time while trying to feed her and give her meds.
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Hello Cathy... welcome

I believe it needs to drop below 50... very low... in the meantime, if she is sleeping so much and is in her end stages, I would let her sleep... don't wake her to give her food or medications... if she is in pain, she will awaken and ask for it, or you will know. I would confirm what I am saying with the hospice staff...

She may be hallucinating from the lack of oxygen to her brain.. but sometimes we think they are hallucinating and they are communicating with loved ones who are on the other side and waiting for them....

Just be with her... breathe with her... talk gently to her and tell her it's ok to let go if you are ok with it...

please let us know how you are doing... my thoughts and prayers are with you....

What a roller coaster ride! Today she woke up lucid and hungry. She has no memory of the hallucinations. None of the people she was seeing and talking to are dead. She was going back in time to when her first grandson was 6 or 7 and she could still walk. Her hallucinations were animated and happy.

I stopped the Lasik (water pill) and potassium that she was on for 4 days before the hallucinations started. 48 hours after stopping these meds she's back to normal. The hospice nurse came out this morning and my brother flew cross country to be here. (Me, my sister and Dad all live together with mom and work together to take care of her).

Needless to say it was agreed that she doesn't need hospice at this point. At least we got to meet one of the hospice nurses and feel comfortable with the company. It was a good "dry run". Mom finally did agree to be on oxygen ocassionally when needed. Todat her O2 level was between 88 and 95.

Gail...Thanks for the info on the O2 level, I didn't realise that it could get that low.
Cathy... so glad to hear your mom is stabilized.. what is her diagnosis? Please still check with Hospice or Doctor on the O2 levels... I know that when I used to have asthma and my oxygen dropped into 70's it was extremely difficult to breathe... but I also remember the Hospice Dr. calling me when my mom's dropped to 50 urging me to come back from a speaking engagement...asap...

keep us posted...

take care

Her doctor was going to put her on hospice for "failure to thrive". Her ongoing medical problems are:

anemia- chronic
colostomy with chronic diversion colitis
Diabetes type 2

diabetic end stage sensory motor peripheral neuropathy (LAST DAY SHE WAS ABLE TO WALK WAS 7-6-07)

urinary catheter and chronic urinary tract infections

Lots of spinal issues & surgeries since 1985 with degenerative scoliosis, spondylosis, stenosis, osteoarthritis

I�ve been taking care of my 74 year old mom since Aug. 2002 and the list of problems just keeps getting longer.

Her doctor will be coming to the house today to see her. Today is another "good" day for her and I can't believe that a few days ago I thought she was ready to die.
Hi Cathy:

I am so glad to hear your mother is doing better - and is off hospice! It is good to hear your family is there for your mother.

The roller-coaster ride is such a challenge to get through. Hang on - just know that we are here for you and wishing the best for you all. Meanwhile don't forget to take care of yourself...

Hugs, Glenda
Hello Cathy..

It is good to hear that your mom is doing better... What were the results of the Doctor's visit to the house?

I would like to say one thing with regard to Hospice.. Hospice is a wonderful program that helps maintain the patient in comfort with dignity... many people wait until it's too late before placing their loved ones into a program... I would encourage you to speak with hospice... find out what they would provide... what treatments if any that your mother is receiving are invasive and disqualify her etc... it can't hurt... it can only help you be more the long run, they provide volunteers, nurses etc to help you better care for her at home... I just think it is important for you to have a solid understanding as many doctors can't even speak of it since they think they have been failures..

I am sorry to hear that you have been diagnosed with MS but it is terrific that you have been getting shots which are helping...

Please keep us posted... blessings

The doctor and I made some more changes in her meds and she�s a lot more alert now. She also on oxygen 24/7 and that is making a huge difference. Her doctor is actually one of the owners of the hospice part of the practice that we will eventually use. I never knew this until I called his office requesting that she be put on hospice. I feel that we were really blessed when I stumbled upon this doctor. Not only does he make house calls he can also provide continuity of care when she does transition to the hospice stage.

When the hospice nurse came to access her she left a large file that I haven�t even looked through yet. I have to pace myself now as I adjust to the MS. It takes me three times as long to do anything but at least I can still do it. At least I have the entire family on the same page when it comes to the concept of hospice. I printed out a bunch of info for the family explaining what hospice was. Knowing that you can change your mind if the situation changes removed the element of fear for the rest of the family. My father finally stopped referring to hospice as �the end of the line�.
Gail�if it weren�t for you and this web site I would be a basket case. I knew when I first found the site in July 2002 that I would be spending a lot of time here reading the vast amount of gathered and practical knowledge concerning caregiving. You have made my journey enriching and enjoyable. Thank you from the bottom of my heart.

I never realized that you have been a part of the community since 2002... I lived caregiving for so many years both in my personal life, the organization and the Empowering Caregivers site.. In needing to reclaim my life, it was necessary to let go of most of it... just couldn't with the site as it still continues to support so many... in truth, I also can't give it up completely... Since the business phone was originally my home, I still get phone calls on a daily basis for referrals etc.. there is a part of me that refuses to let go completely... I know that caregivers need what is offered here.. it's still one of the only sites of this kind...thousands of caregiving sites, several corporate sites trying to use aspects of it in their own sites rather than advertising.. so this is the reason I keep the site up and running..At some point, it will be necessary to let go of it due to financial reasons.. perhaps caregivers might be willing to contribute to keep it alive on a yearly basis.. It's an evolutionary process and time will reveal where it is all going...

richest blessings


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