As a mom, you learn quick to get over what most people think is TMI. Poop, Puke, Pee, basically anything that starts with the letter P! As a caregiver, it is pretty much the same thing, but you have to get over it all over again. Because as much as the person is functioning like a toddler (with the speech, eating, sleeping, etc) it is NOT the same as your 3 year old, no matter what you tell yourself!
And can I just say that as a pregnant caregiver, it is a whole new lesson. As smells....well....you know!
This week has been that get over it and quick week. We started it off slowly, getting over Easter's festivities. She spent most of Monday and part of Tuesday in bed sleeping. Wednesday was a fairly good day, asking for a walk. Thursday was also good, spending some time sitting outside. But by Friday that was over, and by Saturday we realized that the "good" days are probably all behind us.
I am a mom, I good at wiping hands and faces clean. The table too. Convincing a preschooler that a bath and nail clippings, really are not the work of the devil, well---I am working on it! But this week has given me two new cleaning processes....cleaning poop off of hands, items in the bathroom and under nails. I know I am a super lucky mom that my kids never turned into the poop monkey's I have heard other kids turn into! And can I just say, that the smell of poop from a grown, dying adult is horrific....maybe it is just the baby in the growing belly, but really awful!
This week brought other challenges as well. She has seemed to lose her sense of hot and cold, esp in her mouth. She wants food, lots of food, right NOW. Problem is, sometimes those things are pipping HOT. She isn't phased by this at all, a fresh cup of coffee, gone in 2 drinks. Dinner straight out of the oven, no worries, gone in just a few bits. I am not sure what to do about this....I mean, seriously. Her speech is slurred all the time. I feel so bad, because at least half the time I just can't understand her. No matter how many times she says it. That has to be soooo hard on her-she can't fend for herself and now she can't communicate what she wants or needs. Tonight or tomorrow I will be working on flashcards of sorts, to help her communicate with us. Since she has always always had trouble with writing and reading, this is our best option. As I am sure those things are long gone now.
Her breathing seems to be much more labored now. Not a good sign for anyone, esp not for her... Her left side (where she already had weakness, a side effect of one of the 03 brain surgeries) is pretty much useless, not quite but almost dead weight. This makes it very hard for walking, and standing, and really just about anything. I pray daily for God to literally give me the strength to help her. Literal strength!
Good things happened this week too! I mean not everything in my life is bad. Hospice came out this week, and I met 2 angels. Beth her nurse and Julie a social worker. What amazing ladies. Lots of help with everything! Bringing gloves, getting a hospital bed, commode, and wheel chair in here. And a respite volunteer to come once a week to give me a break! AH-MAZING!
And my awesome and not deserving of what is going on hubby, and I got to go out to lunch just us! I finally got to try Five Guys Burgers. Yes, I know, I am so behind! Greasy, but oh so good!
Showing posts with label caregiver. Show all posts
Showing posts with label caregiver. Show all posts
Sunday, May 1, 2011
Friday, April 29, 2011
week 1 --an overview
We brought Danielle back home on April 15th. So technically as I type this, it is week 2 ending. But I will get there. Remember, I told you I should have started this a few weeks ago....
Like I said, she came home on the 15th, that was a Friday night. There was a ton of here that night. Myself, my husband (well he came home from work a little later), our 2 kids, my mom, dad, step-mom, 2 little brothers and a girlfriend. We had pizza that night....that was the first "taste" of what we were in for. Because of the high dose of steroids that she takes to keep the swelling of her brain down, her appetite is that of an NFL player. She ate 5 or 6 pieces of pizza and several bread sticks!
My mom came home with news that she had gotten promoted to a higher position and a change of location at work. In theory that was great news! But not that day. Added hours and stress was not what the dr ordered. Literally! We spent that night still in shock of all that was happening. Sunday, was a "normal" day.
Monday, began a crazy and stressful week......
Danielle's wonderful case worker called Hospice for us and set up an informational meeting. That was really great, learning what this great program was going to do for us and Danielle. Then came word that my mother's family was putting together a celebration for Easter for the upcoming weekend! How awesome that was, what a great way for Danielle to see her family and for them to see her. Except it took a terrible turn. No one thought to include us in the planning for the occasion. So it was planned for a time in which both my mom and one of my brothers where at work. But more importantly, the time of day when Danielle sleeps! uh-oh.
I thought I was polite when I explained this. But apparently not, this then caused a war of words in my family. Looking back in hindsight (which we all know is 20/20), maybe people didn't understand that I am the one who cares for Danielle, about 80% of the time. Either way, things were blown WAAAAAAY out of proportion.
Then there was me getting bent out of shape because someone tried (agian, my poor family) to tell me they understood how bad Danielle was. Uh, HELLO, pregnant mom of 2 who is now, basically taking care of a 5'2, 200lbs 2.5yr old. NO, YOU HAVE NO FREAKING CLUE. Yes, hormones I know.
Days, were both bad-sleeping for 23 out of 24 hours, literally. And good--being awake all day on Saturday and enjoying the family and even an Easter egg hunt!
But before that, Hospice came to the house to admit Danielle to the program! The lady calls in the morning to set the time at 4, (dinner is set for 5-6) ok we will make it work. She calls around 230 to tell me she is now running about an hour late and won't be there till 5. Uh, ok, gotta do this ya know. Then she doesn't freaking show up till 545! this time no call!!! Then she doesn't seem to know her head from a hole in the ground--this is not going well.
Like I said, she came home on the 15th, that was a Friday night. There was a ton of here that night. Myself, my husband (well he came home from work a little later), our 2 kids, my mom, dad, step-mom, 2 little brothers and a girlfriend. We had pizza that night....that was the first "taste" of what we were in for. Because of the high dose of steroids that she takes to keep the swelling of her brain down, her appetite is that of an NFL player. She ate 5 or 6 pieces of pizza and several bread sticks!
My mom came home with news that she had gotten promoted to a higher position and a change of location at work. In theory that was great news! But not that day. Added hours and stress was not what the dr ordered. Literally! We spent that night still in shock of all that was happening. Sunday, was a "normal" day.
Monday, began a crazy and stressful week......
Danielle's wonderful case worker called Hospice for us and set up an informational meeting. That was really great, learning what this great program was going to do for us and Danielle. Then came word that my mother's family was putting together a celebration for Easter for the upcoming weekend! How awesome that was, what a great way for Danielle to see her family and for them to see her. Except it took a terrible turn. No one thought to include us in the planning for the occasion. So it was planned for a time in which both my mom and one of my brothers where at work. But more importantly, the time of day when Danielle sleeps! uh-oh.
I thought I was polite when I explained this. But apparently not, this then caused a war of words in my family. Looking back in hindsight (which we all know is 20/20), maybe people didn't understand that I am the one who cares for Danielle, about 80% of the time. Either way, things were blown WAAAAAAY out of proportion.
Then there was me getting bent out of shape because someone tried (agian, my poor family) to tell me they understood how bad Danielle was. Uh, HELLO, pregnant mom of 2 who is now, basically taking care of a 5'2, 200lbs 2.5yr old. NO, YOU HAVE NO FREAKING CLUE. Yes, hormones I know.
Days, were both bad-sleeping for 23 out of 24 hours, literally. And good--being awake all day on Saturday and enjoying the family and even an Easter egg hunt!
But before that, Hospice came to the house to admit Danielle to the program! The lady calls in the morning to set the time at 4, (dinner is set for 5-6) ok we will make it work. She calls around 230 to tell me she is now running about an hour late and won't be there till 5. Uh, ok, gotta do this ya know. Then she doesn't freaking show up till 545! this time no call!!! Then she doesn't seem to know her head from a hole in the ground--this is not going well.
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