PSP Association
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We are at that stage

Took us over a week in the hospital to regulate the choking/pain/etc the best we could. Thankful mom was coherent enough to help my sister and I with the questions on the DNR. Having experienced a ventilator first hand made one question easy to answer. Two days ago mom was moved back to the care facility on hospice. Mom could have used the anxiety medication (Lorazepan) a few weeks earlier to ease her discomfort. Always trying to look for a cure please remember the comfort measures are needed, hospice has been great.

We experienced a few qlitches with the recent transfer back to the care facility, just have to step back and remember take a breather before I say anything.

Seems like it's constantly changing for the worst, mom is very uncomfortable, it appears her anxiety meds aren't working, nor the morphine. I hope I don't offend anyone with the details. I've requested more drying agents, anxiety meds, and morphine.

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This is a very hard time for you, your sister and your mother. So good your mother was able to help with the DNR decisions. I, too, have seen the ventilator at work and wouldn't want it for myself. Useful for someone suffering from a temporary illness or injury, where the chance for recovery makes the discomfort worthwhile.

For what it's worth, atropine (1 percent solution, 2 drops under the tongue twice a day) has been great for reducing the gluey saliva that my sweetheart was nightly choking on. His doctor said it was often used at end of life, so didn't recommend it, but the doctor at the hospice/palliative care unit chimed in, and my guy has been made much more comfortable this past year. The choking was horrible.

I'm getting ready to take my guy to the VA today for a week, as his main aide is on vacation. I'm looking forward to it and sad about it, as everyone here understands.

I hope your mother becomes more comfortable, that you find the meds that help.

Love and hugs and hope, ec

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EC, Since I am the sole (soul!) 24/7 caregiver for my husband, I can't imagine anyone else taking care of him for one whole week. Today I think it would be a blessing. Unfortunately, he does not qualify for VA benefits.

I did find this article on Robin Riddle's Brain Support Network. It may be of interest to those of us who are caregivers. globalgenes.org/raredaily/t...

And this..https://youtu.be/ivjlBstqu_o

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That is a great article! Thanks, Christine. I'm bookmarking the site. I recognized the symptoms in myself so exactly - the heightened anxiety and over-reaction to sudden noise especially. It has gotten better since the worst of the falling has subsided, but oh my poor sweetie, I still find myself harassing him quite disproportionately to his actions - and he can't possibly understand why I get so upset so quickly over what to him is something obviously minor or outside his control.

I don't know how you manage all on your own. At least I get to go to work!

oh - p.s. - I think that article deserves a post of its own. Every caregiver should read it! I tried to copy the link but for some reason that's not working for me here and now. I hope you will put it up and highlight that coinage: “OTSD” (Ongoing Traumatic Stress Disorder) is so apt!

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You need to, it's placed a lot of stain on my wife, coming home from work going to my moms side everyday.

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Great article. I really relate to it.................

x

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