Here is a photo of my mom taken about a year ago. The two watercolors in the background are hers -- she did many pieces in the mid eighties, but unfortunately stopped. She did all of her pieces from life/memory. Her father and sister also did visual art, so I guess it is in the genes.
VERY LONG POST, FEEL FREE TO SKIP TO THE COLORED TEXT SUMMARY AT THE BOTTOM. I do not want to violate her privacy too much with this post, but I do want to tell you that the last three weeks have been quite a trip. My mom first became severely short of breath in mid- February. She had recently had several medication changes we both first thought one of her new medications was causing her shortness of breath. Many medication adjustments and a few medical tests later, she was diagnosed with emphasema according to her chest x-ray and symptoms. I encouraged her to purchase an oximeter (device y0u put on your finger to measure the oxygen saturation in your blood). Her O2 sats were consistently below 90 (90+=healthy); however, treatment was not recommended at that time. On April 5, I got a call from the assisted living facility in which she lives, that she was sent to the ER due shortness of breath and dropping O2 blood level (glad she bought the oximeter). Though the ER suspected congestive heart failure (CHF), her diagnosis was changed the next day to exacerbation of emphasema and toxicity to one of her heart medications. She was released from the hospital on April 7 on O2 back to her assisted living facility. I was there most of the rest of the week -- she slept most of the time, almost 23 hours a day. Though I expressed concern, it was thought by medical professionals that she was tired from her exacerbation. She was awake a littel more on April 12, but the emergency squad had to be called that night because her O2 saturation was dropping even with oxygen therapy. I spent the night in the ER with her -- a horrible devastating experience-- to see her struggle for breath and become blue unless the O2 was turned up. I went back to her apartment in the early hours of the morning and wailed with anguish over her condition. She spent the rest of the week in the hospital -- CHF was again ruled out as significant and by Wednesday the doctor at the hospital said her lungs were failing and wanted instructions regarding her end of life care. My brother and I met with the doctor the next day, presumably to discuss her pulmonary status -- by which time this doctor said she had vascular dementia and that that would do her in before her lungs. When we saw her that morning, she was alternatively staring and making strange faces, not responding to questions. We found out she was given an antipsychotic drug, Lord, knows why (something I am currently discussing with the hospital) and it had made her psychotic. The doctor was planning to release her to a nursing facility bed the next day. I had been trying to get her a lung specialist for the last two weeks, without success (I could write a few more pages about the "ifs, ands, buts of that). She had another breathing episode that afternoon, which kept her in the hospital another day, just enough for getting her transferred. I got her transferred to a larger tertiary care hospital the next day (not without a few more difficulties). She was admitted to a critcal care section of that hospital, she was found to have such high CO2 in her blood that it was felt she could die at anytime if she did not take Bipap breathing treatments. These treatments were tried but she resisted. She was found competent at that time to make this decision, though later, as the living will surragate (pull the plug person), I had to maintain her decision. She almost expired Saturday morning -- was comatose, but came out of it! She agreed to wear the Bipap for a little while since my brothers were on the way to the hospital. Several attempts were made to take her to ICU for intubation -- I had to resist these (not expected, not pleasant) as she did not want this. My brothers arrived and we all visited. She refused the Bipap after my one brother arrived. She was expected to die from the amount of CO2 in her blood. My brothers and I took turns holding a vigil until late Sunday morning. The medical team visited at this time an said they thought her health would improve markedly if she were treated aggressively for congestive heart failure. In order to do this and have her survive in the meantime, she needed to wear the Bipap for two hours a day for the next two to three days. She agreed to do this -- though later that afternoon and evening, I needed to talk with her quite abit to get her to follow through. I find out she thinks she no longer can live at the assisted living facility and thinks she is going blind (had hallucinations on the antipsychotic drug ). With hope for more quality in her life, she worked to use the Bipap. I spent each afternoon into the wee hours with her until Wednesday to encourage her the best I could to use the Bipap as much as she possibly could. She improved every day. She went back to her assisted living facility on Thursday, April 22. I have been with her off and on helping with laundry, grocery shopping and bills since then -- alot to catch up on after these last three weeks. She currently has O2, she hopes to get off that and is reticent to go out of her apartment because of it. The next hurdle, I think.
SUMMARY: I do not know why I have posted this blow by blow (though a few other strange things within it have been left out) -- perhaps for myself. Suffice to say I am very thankful to God and and the doctors who last treated her. I prayed for her recovery when it truly seemed there was no hope. I said goodbye to her when it appeared she was dying. It was wrenching to be the person to make decisions about her end of life care. Yet, now, we have the chance to still enjoy time together and I am so thankful. We have become "best buds", over the last three years especially, and I look forward to some more precious moments together. I am afraid for her outlook if she does not get off the O2, but if she does not, I do hope she can learn to enjoy the continued life it gives her. May you all have better trips through the healthcare system. Thank you all for reading and your support.
I was exhausted a bit myself until today and also had a bit of catch-up to do at home. I have finished the eagle and hope to get a good photo and varnish it today.
There's a very strong family resemblance there Angela :o)
ReplyDeleteWell done to you and your Mum for pulling through such horrible times. My Mum (though not as poorly as yours) is currently being assessed to see whether she needs to have oxygen at home - she has been asthmatic all her life and now has advanced COPD. It would be easier to cope with if we could all be sure that the medical treatment is being properly prescribed and administered wouldn't it.
I hope your Mum continues to make good progress and her quality of life improves steadily.
I'm glad your prayers were answered! I will keep praying that she gets the O2!
ReplyDeleteWe have problems like that all the time in our National Health System. I always presumed health care was better in the US because you pay for it. I know it is extremely frustrating trying to get the appropriate care for a loved one.
ReplyDeleteI'm sorry you had such a traumatic time trying to get the treatment your mother needed, but so pleased that she is now home and relatively well.
Thank you so much, Sue, Erica and Linda.
ReplyDeleteI hope all turns out well for your mother, Sue. How old is she? My mother is 79.
I think alot of health care quality has to do with location and sometimes your age. There is not alot of respect for aging, I think. Fun times ahead for us!
My mother seems to be improving every day! I am going to teach today in her town and will stay with her tonight through part of tomorrow.
My Mum is 75 so similar age ... hoping all continues to go well for both of them :o)
ReplyDeleteI wish you both all the best. I remember well the week I spent in the hospital just before my father passed. Those are long tortured hours indeed. All my prayers are with you and may her recovery or quality of life be good.
ReplyDeleteBig Hug.
Tank you Sue and Mona.
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