It's been a long time since I posted. It's been a long time since I even looked at my blog. At first, it was because things were maybe not perfect or happy, but at least predictable. I knew Mom would probably be either in a hospital or convalescent center every few weeks if we couldn't get her to truly follow all the instructions she'd been given. I knew there would be constant fights between her and Ann about food (fat, salt, sugar, blah blah blah), and that if a home health nurse was working with her, she would completely ignore the rule about leaving the house, and go to the store to buy all the stuff we were trying to keep away from her. I knew to expect these things, and still tried to keep people floating on a positive vibe so as not to continue to poison the air with negativity.
I failed completely in my efforts. For some, being negative is the only way to breathe. I have been the same way, and during those times my life was darker than any dark you can imagine as long as you can imagine light. I can still imagine light right now, and would like to keep it that way. So, I'm going to do my "vomit out everything that is happening all in one post" thing to avoid having all this stuff chew up my light and spit it out on my feet.
Mom spent Thanksgiving in the hospital. She went from there back to rehab and got home just in time for Christmas. She got out just after New Year's Day, and was back in for her birthday (the 12th), came back home without a rehab break, then was back in just before her 53rd Wedding Anniversary (2/6). She has not been lucid since before she went back in. She was sleeping - a lot. At first we thought it was just because she'd had a couple of bad nights in a row and was just sleeping it off. But Dad had to be taken to the hospital for a very serious case of constipation that actually blocked him from even being able to urinate. The next night, she wanted to get up to use the toilet at about 1 a.m., and she couldn't get up even with help from me. I called Ann down to see if the two of us could get her up, but we still couldn't get her legs to support her.
Then there's the delirium. It started during the summer during one of her rehab stays. Then it popped up briefly here and there, but only during hospital or rehab stays. During the last couple of months though, it's been present at home also, to varying degrees. When we were trying to get her up for the toilet, she was having one of those forgetful times, wondering why Dad wasn't helping us - we had to remind her that he was in the hospital.
We eventually called 911 to get her over to the ER. Ann and I have watched this pattern repeat a number of times, so we told the crew that we suspected kidney failure, and explained why. (She always loses the ability to support herself on her legs when her kidneys start to go.) It was Ann's turn to accompany a parent to the ER (I took Dad the night before), so she went and got her admitted. They started her on fluids and did all the tests, x-rays and labs they always do, then admitted her. No, they did not put our parents in a room together. (Apparently, they've done that in the past and had one of the people tank, and couldn't get the other one out of the room so they could handle the emergency. It did not go well. So they don't do that anymore.)
The next morning, Dad got a nurse to wheel him down to visit Mom and she didn't recognize him. She's had moments of lucidity, but has mostly either slept or floated around in her own world. Today, I walked in her room and she was having a quite animated discussion (with absolutely no one) about an elephant that was supposedly at the end of her bed. I tend to laugh at a lot of them, because I know if I concentrate on how serious the issue is, well. Yeah.
Aside from the delirium, we are facing the very serious issue of her heart and kidneys being at odds with each other. When Ann and I visited together and spoke to the Care Manager/Head RN, he told us they couldn't work on the kidney issue until they got the fluid out of her lungs and away from her heart. (We didn't know about the fluid yet.) I spoke to her doctor the next day and he advised that there really isn't anything they can do when it comes to an issue with either of those organs. The reason is that draining the fluid from the lungs and heart puts additional strain on the kidneys, which causes her labs to get dangerously high numbers in all the wrong places. If they treat the kidneys, it causes an increase in the fluid on her heart and lungs.
It's been decided (mainly by the doctor and Dad, but with agreement from Ann and me) that with the increasing occurrence and severity of delirium, the recurring UTI's, and the inability to balance heart and kidney needs, that we should have her on Hospice care at home rather than any more rounds of hospital/rehab/home/hospital. So the Hospice representative at the hospital has begun filing the necessary papers - to get her Hospice care approved by Medicare, to get her a hospital bed so maybe she can really rest when she's supposed to rest, and a number of services available to Hospice patients.
So, you think when you hear "Hospice" that it automatically means end-of-life care. That's what we thought. But there are two ways of approaching Hospice. The one everyone hears about the most is actually called Comfort Care, and it is intended to simply keep the patient as comfortable as possible, but stops all life sustaining medications so that the body can perform the processes of shutting down. It reduces a person's life expectancy to weeks at most. What we will most likely do is the other kind, which name I can't remember. In this version, her life sustaining meds are continued, Hospice personnel come in to help with her during the day, and if she has a serious down-slide, we all meet and discuss switching to the Comfort Care version.
I say most likely because I think that Dad probably prefers to take the Comfort Care option right from the start. I understand why, and I don't fault him for wanting that route. He has lived with my Mother since 1961. He knows what a sharp mind resides inside that stubborn head, and what a loving spirit resides inside her soul. Seeing her slowly lose her independence over the last 10+ years has been very difficult for him. More so than it has been for her four children, though we have all noticed it and felt badly about it as well. My brother has a hard time visiting her because he can't bear to see her in such a state. Each time I see her in the kitchen, making anything at all, it is a moment to rejoice, even though it aggravates Ann because it's always something she shouldn't be eating, and she makes an awful mess that we have to clean up. But for that brief time, she is herself, almost the way we remember her from our youth.
All of this is going to go away. It's going to hurt. A lot. It already hurts a lot to think that she will be gone.
Ann and I went to the store this afternoon, where someone had asked about Mom, and Ann got upset while I responded. In the car coming home, I told her that it was OK to grieve. We know it's going to come, and it's normal to hurt when we think about it. So, go ahead and grieve. But also, since she is still here with us, love her and try to find those moments of joy without getting bogged down in the negatives. We are going to lose her. We have not lost her yet.
It sounds really pretty coming out of my mouth (or off my keyboard), but it's really all I can do to keep from crying when I talk about it. I know people are wondering why I'm not crying more. It's not that I don't want to, it's that I don't want to unless I know I can stop. It will come. It does come, at very inopportune times, of course. But I try to keep it at bay while I have to function. I have to work, I have to take care of people. I have to keep myself healthy.
And on top of all of this, there's Yaw. He wants to come up so we can try being together again. I want him to come up. I miss him, and I could really use his support right now. He told me that he planned to come up early in January, and he had me scrambling to find us a place to live. Then, in usual Yaw fashion, needed to delay a week, then another week. Now it might not be until March, and try as I might to be positive, it's hard to imagine he will even come then. He does things in his own time, regardless the effect that has on those around him. It's not really surprising, just annoying. I like to plan things, then set the plan in motion, and then be done with that plan and enjoy the results.
I think I have said all I can say for now. The tears have decided to make an appearance at last, and I need to let them have their party tonight so that I can function tomorrow.
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