Thursday, March 7, 2013

caregiving 101

I find myself repeating words to my daughter, words I hated to hear not so many years ago.

One means well and looks at the tired eyes, the black borders around the gorgeous blue eyes and, especially, as a mother I know that she is in trouble.
So I say it anyway knowing very well that it means nothing to her.

"Brie, you have to take care of yourself, you are exhausted"
She shrugs her shoulders as I know she will.

She has watched her son for a week while doctors and nurses come and check his vitals, take test after test and try to
help him with the sinus infection and pneumonia. When this clears up he will need to stay on schedule and do his 5 days with intensive chemo treatment. That translates into 2 weeks in this small hospital room with constant activities, day and night.
She hears every cough, every gasp for air. He is a very good patient, he only complaints at 4 am when he just managed to fall asleep and they need more blood. Damn vampires, he is not very happy during these sessions.

Mom sits in an easy chair and watches, calls nurses at the first beep of a machine, watches..she can't sleep ..she is worried,she is thinking of all the days missed work, the bills piling up, the dozens of meals they have devoured
from Chinese to Pizza places (they deliver) and then all the in between treats when he can eat and asks for a steak.
The new wardrobe she has to fetch as he loses weight and the pants start to fall to his knees. He laughs when he sees that, she does too and in her mind she also remembers the dollars involved. This is not a child he is 17 but he is built like a football player.

She is lucky to have a best friend who is also her boss. N. has a daughter with head injuries from a car accident, she was with her daughter for months as they watcher her come out of a coma in her own time. N. knows what it all feels like, she understands my Brie. Yet, my lovely girl, thinks of the office all the time," there are things waiting for me" she tells me. She has OCD about her house, heaven if a dish would have to wait till morning to be washed. Frank, her husband knows it so he tries to keep up everything in the "Brie style", he has work to do as he works on water features and contracts are coming in during the spring.

Day five on her "watch" she starts to cough, son is getting better, his breathing has improved and now the nurses ask if they have changed beds. There is mother hacking away and she sounds like Louis Armstrong when she talks. Drive to Urgent Care (downstairs in the ER they charge a LOT more) a nice doctor tells her what? "You should take care of yourself, what if you become really sick and can't be with your son?" There it is again"that phrase" . Verdict: bronchitis.
a 5 day Zpack and she should be much better. If she has a fever she can't go in Zack room or hospital.

As the days have passed and at this writing, grandson has a healed lung, doctor showed him his before and after Xray, he is learning a lot about his body and he pays attention. He is back on schedule with the chemo and 2 more days to go this week and they can go home. Where is Mom? Her cough is not much better , she sounds like a goose honking. She can't have a long phone conversation as the coughing takes over.
I keep my mouth shut, I wish her a well and speedy recovery, I know that to tell her to take care of herself does not mean a damn thing to her.

How do I know? While taking care of my husband for 13 years in his decline with Alzheimer, I became more and more a different person, I was quickly left alone , friends no longer called except for my faithful ones L and C and my friend Lee.
I did not care what I looked like, what I ate, when I showered or not, if bills came in I could not meet.
All I could think about day and night was that today he knew less than yesterday, today he would not eat the rice pudding so I
made a flan, made 3 of them, maybe he would eat them all. Today I had an argument to get him washed, I lost the battle.
He wanted out so I took him with me on dog walks. I was a sight the dog pulling to walk faster, the old man hanging in the back of me and trying to catch up, I in the middle with both arms stretched. Today when he sleeps I will lay on his chest with my head so I will know when he gets up to run away. Today maybe I will get some sleep as this is the way I pass my nights too.
Today as I wash the sheets and the rest of the bedding ( a daily routine the last 4 years) I hope I will not miss him while he runs out and I load washer and dryer downstairs. I am always running to see where he is. He goes across the street and drags stuff out of the peoples garbage. This is surface stuff, in between you cry from exhaustion, from fear, from the what if's" from hatred that this kind man just slapped you, worries, always worries. Ask for help they tell me. My daughters have work and families, my son is in Texas.

I finally get help via a site on the internet. At WOWOWOW someone tells me that I should go to the VA, husband fought in the Pacific during WW2, we go there, I do not like it when they call you by your last "four". Numbers from your S S.
It is not very personal, each time we go we get a different doctor, some just want to see how much he remembers and give him a test and he looks at me ;"Why must I do that? I do not understand, lets go home" The good part I get his medicine for 2 digit numbers instead of $600 which I paid every month for years. Empty the bank account. I also get him to go to a day care from 9 to 4. Then I think life does not get any better than that, he likes it there. He sits in a corner waiting for the bus to come and get him home.
I try to regain my sleep while he is at the day care but I can't seem to get over the exhaustion.
When I get the phrase :"You have to take care of yourself" . I try and think, think hard, what the hell do they mean? are they talking Chinese? I do not understand. I do eat, I sleep when I can, I no longer keep the curtains washed ,the garden is full of weeds, so I do not get done what I used to do, I am thinking that is taking care of myself.
On March 3 2010, we have a snow storm a big one, several feet of snow. I try to go out in a hurry to see if the dog will like this new fluffy stuff and lift his leg high enough to tinkle. I take the first step and fall with my leg under me.
It is 6 am. My husband is asleep, I have on my black leather coat. I crawl up to the top of the stairs pry the door open which
was not locked (lucky me) and start to scream for Bobby who had come a few months before to see if he could help me.
He comes in and said: Why are you waking me up? Oh!Mom ,geez what did you do?
I say call 911 I need an ambulance I broke my leg.
We look at the foot with is sticking out horizontal next to the vertical leg.
Son looks white.Calls and helps the 2 EMS people to carry me in a chair like affair to the ambulance.I broke my ankle in 3 places.
That night I get a bunch of stainless steel hardware in my leg and when I awake I ask the nurse if I can please stay the night and rest. Answer: you are going to get a LOT of rest, honey!
Yes 5 days in Hospital and 21 days in rehab.
I had to let Brie take over and find a home for my husband and that was the hardest thing I had to do in our 40 plus years. I did not think anyone could take care of him like I could and I was right, he was gone 6 months later when I was still walking with canes.
A very difficult way to take care of myself, when we are care-givers we do what we have to do for the people in need, period,we are then becoming second place, no matter what anyone tells you.

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