Caregivers Support Group

Hi, I'm new here...have been browsing for a while after a friend referred me here, and now I've joined so I can participate more actively.

I'm not entirely sure how most people introduce themselves here, so I'm going to wing it. Give a little background, let you know what I am doing to deal, and ask for feedback/advice. If you find that I'm a bit wordy, I apologize - I'm trying to start a new career as a writer and I don't have many people to share this story with, so I kind of need to tell it. Please bear with me :^)

As I'm sure is the case with many of you, my circumstances are unique and so I have had a bit of difficulty trying to figure out the best place(s) on dailystrength to come for support - I have yet to find a category that fits everything that is going on in my life, and I guess that is to be expected. However, on a day to day basis I am a caregiver, and many of the issues I face are related to that, so I'd like to make this my "home base" on dailystrength and I can dabble into other support areas as needed.

How did I become a caregiver? My dad (65) tried to kill himself back in March. He walked into the garage when my stepmom was out, and drank an unknown amount of antifreeze. He went about the rest of the day somewhat normally, but when he was acting strangely in bed that night, my stepmom got alarmed, and eventually called the ambulance. He was taken to the ER with symptoms of a seizure. Since he has a history of brain trauma and had an unrelated seizure episode in January, this was alarming, but as of yet the rest of us did not know about the antifreeze.

I got the call from my stepmom the next morning, and hopped on the first flight I could (I live in San Francisco, my dad and stepmom in Las Vegas). My brother and sister-in-law flew out shortly afterwards. Dad was in critical condition in the ICU. It wasn't until the next day that the Doctor told us about the antifreeze...and that he was really touch and go. Needless to say, we were shocked. We made two decisions very quickly - first that the antifreeze information was not to leave that room, and second that we needed to "retire" my dad from his business.

My dad's business is in real estate. He had been struggling for a while, in fact I had been out for a visit after his prior seizure episode and tried unsuccessfully to sell a majority stake so he could "retire". What I did not realize at the time was how much of his own money he had continued to put in in order to try and keep the business afloat. The house was double-mortgaged, credit cards maxed out, IRA liquidated, the whole nine yards. The stress of this on him must have been immense. I think he saw the inevitability of the situation - failed business, bankruptcy, but most of all failure to himself and his family. My dad is a very proud, stubborn man. And after reading through his million-dollar life insurance policy, he decided that was the only way out.

Looking for clues to what was still a bit of a mystery to us, I found the policy as the top thing on his desk at the office. Back at home we found several letters to us which confirmed that his plan was to end his life. But somehow, despite severely poisoning his system, he clung to life. Basically in a coma, we would take turns holding his hands, telling him how much we loved him, taking any twitch or movement as a hopeful sign that he could hear us, feel our presence. I was holding his hand the next night during a dialysis session (his kidneys had shut down) when he started having another big seizure. We were cleared out of the room. They wheeled the paddle machine to right outside the door in case he needed to be shocked back to life. I broke down and cried on my brother's shoulder.

Over the next several days, many family members and friends came to visit and support him in the hospital, but only a few of us knew the truth of the matter. We still get asked "do they know what caused the seizures?" and I still have to lie to most people. How do you tell cousins, uncles, friends..."my dad tried to kill himself?" Unfortunately some people found out about the antifreeze through doctors who didn't get the memo. Information like that spreads like wildfire. I was there when a doctor inadvertently let the cat out of the bag in front of some extended family. Despite swearing them to secrecy, that lasted all of about 48 hours. When the family had started coming together for my dad, I had hoped that the silver lining to this cloud might be that some of the (many) ongoing family feuds my dad was involved in could be forgiven, forgotten. But my hopes for that, and my trust in the family, quickly eroded after that episode. Dealing with this still continues.

Meanwhile I had started negotiations back up to sell the business. Let me tell you what you have probably guessed already - selling a real estate business in Las Vegas these days is about the worst timing you could possibly imagine. I ended up coming to an agreement with an interested party...who later backed out. I tried to work with the parent company. They were willing to play ball to an extent, but finally just wanted the money owed to them. So I closed most of the business down, consolidating three offices into one, under care of some people who were going to try and make it work, and come to an agreement to buy it down the road. Dealing with this still continues.

Unfortunately this didn't help out my parents' financial situation any - they were left with huge debts, both business and personal. So I started meeting with bankruptcy lawyers for advice. Of course there are some tough questions you have to answer in this situation...and my stepmom was completely overwhelmed. So I started the process with the best information I had and dealing with this still continues.

After 6 weeks in the hospital my dad was finally released. The good news: mentally, he is about 90% of where he was before; his kidneys started working again; most of all, he was alive. The bad news: he had lost a lot of weight; his liver had taken a huge hit (and was already weak from years of alcoholism) - pretty much now into full-blown cirrhosis; overall he is very weak. Against this backdrop, we had to switch from a private insurance plan to Medicare plus a suppmementary plan - which meant switching Primary Care doctors.

So what's life like these days?
Priority #1 these days remains my dad's health. I look after him and try to get him stronger - he hasn't gained the weight back yet. This is a struggle due to his liver issues - he has bad ascites which swells his abdomen. He is mobile but spends most of his time in bed or on the couch. I try to work on the business and bankruptcy things as I can, but they are at the stage where it needs my dad's involvement. I am happy to do the legwork for him, but he needs to point me in the right direction. This doesn't always happen - for instance today he did not feel well and spent most of the day in bed. Ideally, there would be a stack of work for me to pile through on days like this, but there isn't.

My stepmom works part time, so in the mornings I'm pretty much taking care of my dad solo and taking him to appointments as needed. When my stepmom gets off work, it's usually an excuse for him to say "let's go lie down together" which frees me up so I can go to the gym or whatever. But I don't have any friends here, and don't really like Las Vegas, so I spend most of my time in the house too.

I am unemployed (as mentioned above, I am a writer, working on a book) and single, which makes me the default candidate for caregiver in the family. Pretty much everyone else in the family is married, has a job, is feuding with my dad, or some combination of the above.I spend about 75% of my time in Vegas, going on trips back to SF or to weddings/whatever as they come up - which helps me unwind from the situation. But there really isn't anyone else who comes in as caregiver when I am away. Last time one of my cousins came out for a bit, and she was helpful. But usually my dad will be on his own for half the day (while my stepmom works) if I am not in town.

I would like to get the bankruptcy dealt with as soon as possible, in order to give my dad and stepmom a fresh start without as much stress. But it is a slow process, limited mostly by my dad's energy levels. And there is still a lot of uncertainty about the future...where will my parents live, will they be able to scrape by on a meager income, will my dad have to find work again, will he get better or just stay as he is (or get worse)?

And while I can subsist for now on savings, I need to have a plan for the future. Right now I am not in the right mindset to write my book, and even if I was, it is difficult to block out time when I can be uninterrupted and concentrate on writing. I think about getting a real job again from time to time, but I'd really like to make this book thing work.

Most of all, I feel isolated. Not being near my support base, and not having many people I can talk to about the full story...it's very difficult. I guess that's why I'm here at dailystrength. What am I looking for? Support, advice, people who will listen. I don't expect anyone to wave a magic wand and make everything better...but I could definitely use a source of positive energy in a world that is sometimes very dark and bleak. Feel free to ask me questions or point me in the direction of resources you think I could use. I'd appreciate anything you can send my way.

Thanks for taking the time to read this. It was good to get a lot of that off my chest. I look forward to interacting with you guys.
Posted on 07/19/08, 02:07 am