...chronicling my mother's battle to live with liver disease and raising awareness of hepatic encephalopathy, together.

Tuesday, June 22, 2010

Long Weekend

Sorry for the delay in the update; between computer funk and the busiest weekend in a long long time, I haven't been able to post. I'd like to thank Kim and her kind husband for the flowers they sent. They are beautiful and Mom enjoys them. She forgot about them, so it was a happy surprise twice!
Generally, Mom is stable. Her vitals are weak, but they are there. Her pain is still out of control (this was likely caused by the lack of medication while we waited for her to metabolize last week's overdose). She is more active at night than ever. Her pain medication is being increased and she will be given a sleeping pill before bed to try to keep her down all night. Her feet and ankles are swollen from too much walking (most of which is at night), and she needs to relax a bit more. We also worry about her falling, as she does that fairly often. She tells me she walked up and down the block a few days ago, and I'm not quite sure if she did. She believes she drank Pinesol - I don't know on this one either. A bottle was on the counter, but not much of it was gone. She complains of a sore and burning throat, but she has GERD (acid reflux), so it's hard to tell. She has confused medications and drinks before, and even poured a liquid medication into the bottle of one of her pain medications and dissolved about 200 tablets on the night of her overdose. Anything is possible. Had the plumber out today to unclog her toilet for the second time in a month. The first time, the plumber found pieces of a pill bottle that was likely accidentally flushed. This time, she appears to have trouble remembering to flush.
I have been informed that there will be a hospital bed delivered today, so hopefully that is set up before I get home from work today. The new medications should arrive tonight, and I will start her on them at the next appropriate dose. Hospice says they have a bed ready, and I know they are trying to wait until Monday to put her into respite care. Respite care is essentially a skilled nursing facility, but would be managed by Hospice. They would make sure Mom is given her meds like she should, and make sure she is not neglected. Respite care would be able to administer more medication than I am allowed to at home (they would be able to monitor her and give her oxygen, etc, if needed, whereas I cannot and am not a nurse), so they would be able to get her pain under control. Also, it would give me a week of uninterrupted sleep (or as peaceful as an insomniac can naturally rest). Mom is awake, on average, every 90 minutes throughout the night. This means that I get, on average, 2.5 hours of sleep in small catnaps. I have the MediCAL application and a social worker will help me with the process on Friday. If we can get her into a place that will give her 'round-the-clock care, we can contain the situation. Mom does not wish to go to a hospital, but I can't care for her at home by myself. Even if I wasn't working, I don't believe this is a situation I can handle alone. She is dangerous to herself and often the primary caregiver (i.e. me) is the one the patient (i.e. Mom) blames for their illness and expresses all their hostility toward. This is, at least, frustrating, and at most, debilitating to her care; she doesn't cooperate with me. If we can find a way to afford it, we have decided to keep a nurse at the house, but this is very expensive. We may be able to keep a nurse during the day when I am at work, and sedate her at night to keep the sundowner sleeping. This may work best for her, to keep her calm and comfortable and safe in her own home, where she wants to be.
I have just learned, in typing this update, that respite care will not happen because someone canceled the request on my behalf. I sincerely hope there is a plan that I don't know about.

2 comments:

  1. Hi Amber...
    Thank you for your updates. Our love goes out to both of you and to Mike.
    We will call your cell around 11 a.m. on Sunday to see if you want us to stop on our way home. If it is not going to work, there will be another time. Don't think too hard on this as you have your hands full. We know that we have told you before, but we feel that you are doing an amazing job with this situation.

    All our love,
    L and W

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  2. You're very welcome for the flowers - I'm glad she enjoyed them. We are thinking about you and hope you are able to get the respite back on track.

    Hugs,
    Kim

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