When I began this post, it was intended to be a quick recounting of the events of my family eight years ago. As I began to type, it became more of a journaling. I've never sat down and tried to type it all out before. Tears were involved. It think it'll be good to have it down in type. That being said, I know it's lengthy, and if you don't want to continue reading, then don't. I won't be offended. In fact, I really won't even know.
A rather sad anniversary in our family today. Eight years ago today, in 2000, my mom had her brain aneurysm.
I woke up that morning in Utah. I'd been back after Christmas for one week exactly. I'd graduated in December and was going to start looking for a job to at least finish the year out in Logan. It was a Wednesday morning, my roommates and I were milling around the kitchen together when the phone rang. My sister "Mandy, it's Mom- the ambulance is on the way." I'll never forget it. The previous Friday night I'd called to talk to my mom on the phone. My sister told me she couldn't talk, she had a headache. Now- my mom has had migraine headaches as long as I can remember, but not to this extreme. I made them put her on the phone, she just had a headache, surely she could talk to me for a few minutes! She sounded rough, barely able to croak out her responses. I told her she should go to the doctor, even the emergency room if it's that bad. She told me she'd go on Monday if she wasn't better(that's my mom!). I pressured her with the fact that Monday was Martin Luther King day, and are we sure the clinics were open? She compromised by saying that she'd go to urgent care in the morning if she didn't feel better. She did. They sent her home with a (mis)diagnosis of a sinus infection and 4 medications (antibiotic, pain pill, decongestant and I forget what else).
She medicated and went to work Sunday, Monday and Tuesday nights. Wednesday morning on her way home, the head ache became so bad that she couldn't remember the drive home. She made it safely, by the grace of God. After Dad helped her out of the car and into the house, they began talking about taking her to the doctor, or calling an ambulance. Mom refused to have an ambulance called(again, that's my mom!). Dad began getting her ready for a trip to the clinic(not the one responsible for the mis-diagnosis), he'd already called and they were expecting her. I wasn't there, so the details are fuzzy for me, but I believe that when Dad helping her on with her shoes resulted in vomiting, she consented to an ambulance.
That's when they called me. I was on the phone as the ambulance showed up and took her away. I talked to my sisters and to my dad at the hospital and found out that they were going to take her to Minneapolis. They wanted to Life Flight her, but the weather was too bad, so they took her by ambulance. I waited. I called my grandparents. I called my aunts. I waited. I talked to my dad again, "She'll be fine, Mandy." I waited. "Dad, when do I come home?" "She'll be fine- wait. If it was my mom I'd want to be there. Come home. You get a flight home, call me and tell me when, and I'll be there to pick you up." My roommate and best friend started calling the airlines, trying to get an emergency flight. I started to pack. I wasn't sure how long I'd be gone, or what I would encounter when I got of that plane. I packed black dress clothes.
When I got off the plane, my dad wasn't there. I was devastated. I almost couldn't breathe. What had happened in the hours I was in the air? After making several phone calls, my sister came running in. Dad was outside. Mom had had an aneurysm and was in a drug induced coma(is that how you say it?). Her aneurysm had bled out, but the slightest raise in her blood pressure could cause a rupture and kill her. They would do surgery the day after tomorrow.
We could see her 2 at a time for a few minutes each hour. The next night I called a friend who came to get me. He took me home to Mom and Dad's house. I slept very little, my friend helped me with the dishes while we talked, if I remember right. The next morning I took my mom's car back up to the hospital so we'd have an extra vehicle.
My uncle flew in from Connecticut, but he sat with my grandfather in another hospital. Shortly after he heard about Mom, he'd had a heart attack. (It was relatively mild and he lived for several years after that.) My aunts and uncles and my sisters, my dad and I sat in the surgical waiting room at the University Hospital and waited. It was a very long day. Finally, Dr. Maxwell came out and told us they'd been able to clip both aneurysms (like a barrette). Now we'd wait some more. Her surgery was the 21st of January, she didn't open her eyes at all until the 28th. And then only for a second. The next weeks were a blur. They involved many, many hours at the hospital. I remember that a nurse, Heidi, and I cut her hair. They'd shaved the top of her head, and the back was bloody and matted. We carefully lifted her head and washed it, but it was so matted that she looked to me and I made the decision to cut, and cut I did. They'd waited, expecting her to wake up and then she'd be able to make her own decision about cutting her hair. She hadn't, and it was time. Yes, my sisters were furious.
My older sister had 2 small daughters. Fortunately her husband could watch them for much of the time. The four of us rotated through shifts so that we'd be there when she woke up. I think it was 12 days before she woke up. A flutter of her eyes here and there.
When she woke up, she wasn't herself. She was impatient and irrational. She couldn't eat of drink. She tore out her feeding tube 3 times. She had physical therapy and swallowing tests. They thickened everything, even her much demanded coke. They had to tie her to the bed to keep her in it. She was in no way ready to walk on her own, and she wasn't rational. The turmoil continued. She has smoked since her teens, and her addiction was only stayed when her nurse gave her a straw to "smoke". (You can laugh here- I have!)
Somewhere in February a friend of mine drove me out to Utah. We drove all night, arriving Saturday. My friends threw me a going away party. We packed up all my stuff in his car and mine and drove home. I didn't go back until several years later for a visit.
Her progress determined whether she'd go to an acute rehab facility for intense rehab, or to a nursing home. She didn't progress like we'd hoped. When we left, we brought her to our local nursing home. She kept trying to jump out of the car. We kept locking the doors. The nursing home wasn't great, but we wanted her close to home. It was right up the street.
She was discharged on a Wednesday. That night I'd gone to church. Dad got her settled in and was home in bed when I got home at 9:45. The phone rang and I answered it. Mom had tried to get up out of bed and had fallen and split her head open. Did we want them to call an ambulance? She'll need stitches. Dad and I went to get her. I can't remember if Dad drove or I did. My car had power locks(we'd realized earlier that this was a good thing). Mom kept trying to open the doors while we were driving and we kept hitting the lock button to prevent her from doing so. After her staples were complete, we brought her back to the nursing home. After a day or so, she went by ambulance again. Her stress was messing with her vital signs. The doctors recommended that if we could take care of her at home, we should do so. We tried it. Would we be able to do it? I could not give up my life entirely.
The next weeks involved my tough decision to return Mom to the nursing home. Again, I angered my family, but I could not be her sole care giver to the point where I couldn't even get to church. It was the hardest thing I'd ever done. I drove all the way sobbing hysterically. Dad brought her back home, and we settled in to a routine. Dad worked 3 or 4 twelve hour nights at a time. That end of the week I took care of mom. One his days off, he was the primary care giver. I slept most nights on the floor of the living room beside her hospital bed. She would get up and roam in the night and we couldn't be sure she was safe or that she was able to walk on her own. She was hot all the time. One night I woke up to find that she'd stepped right over me and was out on the deck. Somehow we were able to keep her safe during that time. Her drinks still needed thickening, her diet soft. She was on a ton of meds and required twice daily shots in the stomach with blood thinner. We came up with a medication log system to make sure she got all of her meds. There were days where we had to bundle her up and take her back up to the emergency room at the University Hospital.
Nothing was simple or straightforward. Mom wasn't simple or straightforward. She was still irrational. She couldn't remember anything. I'd wake up at night on the floor beside her bed to her sad, little voice, "Mandy, what happened to me?" "You had an aneurysm Mom, you'll get better, you'll remember some day" became our mantra. I repeated it every time she woke up scared. "Mandy?" "Yes Mom, I'm here." After a while, she seemed to remember, but just needed to hear it. "What happened? I had an aneurysm, right? And I'll get better?" "Yes, Mom."
My grandparents were wonderful. The rest of my family, not so much. Her siblings rarely came to visit, but always had opinions to shoot off to the rest of my family. One time my aunt called from Connecticut and told us that we should have put her in the acute rehab place. And we most certainly should never have let her start smoking. Thanks for the support. I did blow off some steam there- "Thanks for your opinion. Perhaps if they ever came to visit, they'd know that she wasn't able to go to the acute care facility. It wasn't our choice. She wasn't capable. The facility wouldn't take her, thanks for rubbing it in! And who are we to choose for her to stop smoking? She was smoking STRAWS!" And then I promptly hung up. Family or no family, we didn't need that.
Eight years later. There have been severe depression, seizures, irrationality, so much repetition that I have screamed. My mom still has short term memory loss. She still has thoughts pop into her head with varying degrees of accuracy that go around and around and set up camp in her mind. She'll be angry at some one for a reason that no one is sure really happened. She makes decisions on a gut level, based on feelings, and logic can't sway her. My dad has had to take on a bigger role in the family; taxes, bills, family communication(none of these are his strengths). My sisters and I have become the mother, to her and to each other. There are times where I just need my mom, only to call and find her angry and self absorbed, threatening to pack all of her stuff and move out, and wishing she was dead. There have been many tears on all sides. Tears at every new holiday, new event, new memory created that Mom won't remember. There has been anger, lots of anger. Anger from Mom, anger with Mom. We are blessed, so blessed to have her. I would do it all over again to keep her with us. She's not the same and never will be, but I guess neither are we.
Well, if you got this far, thanks for reading. I'm glad to finally have it down on paper(er, blog). I called my mom while I was typing this, just to talk. At her request, I'll print it out sometime to give to her. Some parts I'll cut. There are some things she just doesn't need to know. I didn't intend to portray her badly in any way, but I know it would hurt her to read some of it. There is so much insecurity in her after all of this.
Yours,
Amanda (Mandy)
