The Unexpected Caree

Casandra Porter

The Unexpected Caree

Casandra Porter
Emotionally I have been dealing with a lot lately.

On September 11th it will be one year since Marc was diagnosed and we were handed down this uncertain future (although no future is ever certain). And on September 17th is my deceased Father's birthday. I, hopefully, will be starting work by September 23rd. I have a second interview for a job that I have been praying to get.

Overall, I think I miss being with my family. While they weren't able to physically help me and were emotionally draining for me, they are my family and they were a distraction. Spending time "reflecting" is getting exhausting.

On top of all this, our living situation is already becoming an extra drain. While I am glad that Marc has his friend, his friend has Asperger's and now instead of dealing with just Marc's needs, I am discovering that I am slowly becoming the caregiver for another and it is less than fun.

At 30 years old, this is his friend's first time being on his own (as he used to live with his parents) and while he has spent a few months here and there away from his parents, this is clearly more than he can handle.

Marc met his friend when they were both working in Yosemite National Park and no one seemed to get along with his friend. The Friend had a very hard time making other friends and Marc kind of took him under his wing and said, we'll get through this together. See, that is how Marc is. One of the reasons I love Marc is because he came from a very abusive childhood but he is the most forgiving and loving soul you can ever meet. He felt he knew what it was to be the outsider and made it his job to show The Friend what a friend was supposed to be. Now they are best friends.

When Marc and I got married we honeymooned in San Francisco and spent most of that time with The Friend's family. They are like a second family to us and The Friend's mother and I became really close. She also noticed that Marc and I were the only ones who were really able to get The Friend to do anything outside of play video games. I, more than Marc, made it a requirement whenever he visited us in the years to come that we were video game-free for most of the time and did things. The Friend's mom loved this. So, when The Friend's parents were nearing the point of retirement they called me to discuss this very living situation we find ourselves in today.

The Friend's parents wanted to buy us a house, all three of us. Besides a very minimum rent that pays for bills and maintenance when needed, it was ours to do as we please. The only stipulation, I got the responsibility of "taking care of The Friend". To this I immediately said, no! In the years of our marriage and their friendship, I had done some varied research into Asperger's. I was familiar enough to deal with The Friend in small bursts but not large chunks of time. I had stipulations of my own. First and foremost, I would not be the caregiver to The Friend, I would be a friend to the friend. He needed to learn the basics for himself. I shouldn't have to remind him to bathe or force him to eat or take his medications, he had to learn to do this on his own. There was nothing that said he couldn't. The problem was that he didn't want to because he was so used to his mother doing it for him. Everything I have read about Asperger's specifically states that building a "routine" and "habits" are necessary. Well, they'd built a habit and routine of him not having to do anything for himself. And as we know, even for those of us who do not have something like Asperger's, when we are used to getting our way that is a habit that is very hard to break. Regardless, there was a list of things that The Friend and his mother were supposed to work on to prepare him for this. He also had to live by himself for the first three to six months implementing these habits/routines with a proven track record BEFORE I would agree to move in with him.

Agreement made but then Marc got sick. Our original move-in date of February 2013 got pushed back but after months of phone calls and hearing about how well The Friend was doing and all the things he'd learned, etc., in light of the fact that Marc really needed a friend outside of me to be with during his illness, this is what prompted the move sooner than later. Initially, it was in my heart not to move until Marc was 100% better but when I kept hearing there are no guarantees, far be it for me to begrudge him a friend not knowing how much time he really had left.

Being here only a little over a month, going into two months, it is clearly evident that The Friend lied about his progress. He knew Marc's situation and how cleanliness was a necessity with his illness to prevent infections and yet, the house was filthy. He knew Marc was allergic to cats (severely) and one of the terms of us moving in with him was there would be no cats and there was one that he was not taking care of. Marc has caught a staph infection, an allergic rash all over his body and a fungal infection on his skin from all of this. I have spent all of my time cleaning because I cannot get The Friend to help and cannot yet afford to hire someone to help. I barely just scraped up the cash to get the carpets cleaned/sanitized and deodorized but there is still, after weeks of cleaning, so much more left that I have to do. I also scraped together enough (after having his parents come remove the cat after weeks of trying to teach The Friend how to care for and groom the cat to no avail) to get the air ducts cleaned and sanitized, as well.

On three different occasions before and after making the decision to move here, I spoke with The Friend and asked him repeatedly if he was ready for this responsibility of taking care of the home and letting him know what Marc's condition was and what would be needed and he swore, promised and lied that he was. Since getting here we have had two confrontations about the situation that have left me with a not-so-nice feeling toward him and a deep lack of respect. Most of his major attitude problems I can chalk up to missing doses of his medications and his very poor eating habits which effect the way his medications actually work.

He believes although he made these promises that he shouldn't have to do anything. He won't even bathe himself without me reminding him. He hems and haws at everything. He is very rude and makes the most insulting comments. And sadly, he has made suicidal statements once or twice when he is not getting his way. I know he is saying it to get a response but it has become very disturbing for me. As Marc seems to know these habits from living/working with him before and knows he won't act on them, I still am very upset to have to deal with it. I've talked to his parents and let them know he clearly needs some help and wasn't ready for this but will they do anything, I don't know. I have a strange feeling that they were fed up with him when they called us to ask if we'd like to move in with him and I even feel as if they just dropped him in the house, no attempt at training him on the things he needed to do to take care of it.

I already have to remind Marc about everything because the swelling on his brain plays havoc with his short-term memory but now I feel as if I have to remind The Friend about everything, as well. If I had openly taken on the responsibility because The Friend had been honest and said he wasn't able to do what we discussed then I wouldn't be so frazzled now.

It's all becoming a huge unrest for me and I feel myself becoming resentful on many levels. I am not a hateful person but there are aspects of all of this that I downright loathe. Not to mention, all I can think is soon I will be having to do ALL OF THIS and WORK. One caree and working was enough but two... What am I going to do? What can I even do? I feel hopeless in this situation.

Until I have a solid job and enough resources to move, I am stuck where I am and wondering, how am I supposed to make the most out of this very trying situation?

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Denise

Hi Casandra--I've got my fingers crossed on the job interview. \r\n\r\nI think what's most upsetting about this situation is that it seems the parents are taking advantage of you. I hope they will step up to help and make this situation better for all of you. \r\n\r\nIs there a way to create an area of the house for just you and Marc? An area that the Friend can't access? \r\n\r\nPlease keep us posted and please know you can vent any time. We're always here to listen.

darciejane

Hi Casandra - I had to read through this twice to really digest the situation. For starters, I believe that the Friend's parents should have paid for all the cleaning needed to make the house livable. If they have indeed been like family to you for a number of years, this turn of events is rather baffling. Given your financial circumstances, I hope that you will at the VERY least, request reimbursement for the cleaning. Take it one step at a time. In the long run it does seem like they are trying to pass their son off to someone else as they approach their golden years. In the process, they are taking advantage of you and of the relationship that you all have had. Stand up for your rights. Good luck on the interview.

ejourneys

Oh, Casandra, my heart goes out to you. Asperger's was mentioned as one of my partner's possible disorders, and for all I know it's part of the hodgepodge of her condition. Unfortunately, the DSM-V has eliminated the category, which does not speak well to treatment coverage.\r\n\r\nAs I understand it, <i>if</i> the Friend's parents are his legal guardians, then he is their responsibility and they can be held liable for any harm that comes from neglect of his condition. That includes the sanitary condition of the house. (Laws on that may differ from state to state.) The Friend is not your responsibility, nor Marc's, especially since you made it clear that you are there as Friend's friend, not as his caregiver. I know that still makes living in the same house with him a nightmare.\r\n\r\nOver here I have had to make my priorities very simple: guard my own health, care for my partner as best I can (she is a very difficult and unreliable patient, so the Serenity Prayer comes in handy), and make sure she doesn't do something like burn down the house (that's a real issue, considering her behavior this past winter). I've had to also detach myself from her drama, which pushes my buttons but is ultimately irrelevant.\r\n\r\nIn short, I must conserve my energies for my top priorities. That also includes respite however I can find it. Keep breathing. Keep safe as best you can. (((Hugs)))