Tomorrow is the event for the Celebration of Pat’s life. I should have posted this reminder sooner.

Please see the previous post for details.

Scott

Hi All,

Pat’s obituary will run in the Virginia Pilot on Friday the 6th, and also the Ann Arbor Weekly in Michigan on Sunday the 8th.

I would like to thank Dad for putting this together. You may view the obituary here http://obits.dignitymemorial.com/dignity-memorial/obituary.aspx?n=Patricia-Barlow&lc=4701&pid=166797339&mid=5655328

Please do not send flowers,

Thanks all,

Scott

I wish I did. Pat’s last meal was when I fed her (see previous post) . She currently is comfortable but will not take in food or water. She was started on clysis, a form of hydration that is sub-Q as opposed to IV about 4 days ago. That is now being discontinued in fear of overloading her.

She is non responsive and sleeps 98% of the time, the nurses are unable to give her oral medications as she will not open her mouth or swallow.

I tried numerous times to get her to drink or eat, however I am now in fear of generating greater discomfort, as we all are.

Thanks for all your support

Scott

 edit: I meant to add, all the staff at the home, and my parents, have tried to rouse her and feed her, or get her to take some food or medication. We are extremely worried about her swallowing and aspiration, which would make thing much worse for her comfort. It was not solely “I” in this effort.

That might sound trivial, but it is not. Pat has been placed on pureed foods after she stopped accepting food, and what follows is a visit from speech therapy to make sure she can swallow OK. We have been though this numerous times, but it meant a lot to me that I was able to feed her lunch today and that she let me. This is the first time in a few days that she has eaten.

She has also been taken off using a straw to drink liquids, as she has difficulty drawing the liquid up the  straw, in it’s place is a “sippy” cup , one of those used by young children. It works, and she was able to take in some liquid.

Scott

…And this a condition of her disease. I got a call Wednesday morning that she was refusing food. They asked if  I wanted to have her sent to the ER or treated at the home. I elected to have her treated at the home. The last time at the ER  they were having a hard time coming up with a reason to admit based on her condition, (brain tumor) , and I understand the thought process.

In the last few days, Pat is not eating, and a version of hydration has been brought in, not IV , but IM. She has been able to ingest a few of her oral meds, the ones I pushed for , for seizure and a steroid to reduce swelling on the brain. There is also some questions about possible pneumonia , etc. and they are trying to treat them.

Her condition appears to be comfortable, sleeping almost all of the time now. Attempts to rouse her are very difficult if not impossible.

I and all those around her are just shooting for her comfort.

Scott

As always, thanks for your support

Pat’s condition has not changed very much from my previous post. She may or may not recognize anyone. I fed her today which went well. We all do not know what she recognizes or thinks , its a mystery. But we are doing all we can, to make her comfortable.

I still recommend that this is not a good time to visit, please remember Pat the way you knew her. I also do not expect any improvement in her condition, which is normal with the disease she has.  She has fought very hard.  

Thanks ,

Scott

I debated long and hard on whether I should make this post. Some may not want to read it.

Pat is not doing well, we believe she is near end of life. After her release from the hospital I was counseled by physician’s and family, that she should be placed in “hospice” care. I somewhat reluctantly agreed as this means the end of “curative” treatment. It is the right decision.

Pat no longer recognizes me, she does not want to eat , and drinks little. Our job at this point is to make her as comfortable as possible. If you want to visit Pat, please feel free, but I would prefer you remember her as you knew her.

Thanks for all of your support,

Scott

Pat is currently in the ICU at DePaul and her condition has not improved much, if at all. It appears she had a seizure today, I was the one that caught it.

We have never heard of her having a seizure, however she was on anti-seizure medications, apparently she hasn’t been on any of her list of regular medications since she was admitted. That has now been rectified.

Thanks for your support,

Scott

Pat went to the ER today and we fully expect her to be admitted.

She was not eating, and not taking her meds when given, which prompted the facility to call me and request a trip to the ER, which I quickly agreed to.

Preliminary diagnosis via CT scan, is that the tumor is growing, but their reference is quite old (February) , so this needs confirmation and an MRI. Of more importance is the discovery that she has a rather bad urinary tract infection, which may account for her current condition.

Thanks for all you support,

Scott

Pat has slowed down a bit. Probably during the last 3 weeks. We are all scratching our heads and wondering if it is disease progression , or something else.

We still walk, we still hug, but vocalization has turned a bit. She still writes.

I always hate posting anything but good news, and this is not necessarily bad news.

Thanks for your support,

Scott