Having a Tough Time

My Mom is 58 years old and was diagnosed with stage three multiple myeloma (most advanced stage for her type) at the end of January. March 2nd, she moved from MN to NC to live with us and get treatment. She left her job, home and community in order to come here and get treatment with a specialist at Duke.

I am 28 years old, a work-at-home Mom to a 2-year-old little boy and I am six weeks pregnant with a baby due in December. My husband works full-time outside the home. I work as a freelance writer from home, care for my son all day, I'm the senior pastor of a church and I am the head of a local natural birth organization. We don't have any other family here to help us.

Since Mom moved in, there have been so many ups and downs. We drive over two hours each way to her medical appointments at Duke. Sometimes we have to go multiple times in a week, while other times we get to skip a couple of weeks before we have to go back again. She's in a clinical trail that involves doing four months of Revlimid/Dexamethasone followed by harvesting stem cells (no transplant) and then up to two years of alternating three chemo drugs. She has three weeks on and one week off of treatment.

Shortly after Mom got here, she had an extremely severe bout with constipation, ended up lying in her own waste and I had to call an ambulance because she couldn't walk and...since she's a chemo patient...I'm not allowed to touch her waste products.

A few weeks went by without anything major happening, but then she had a horrible gout flare up, along with problems with neuropathy and severe disturbance to her electrolytes. Long story short, after two ambulance rides to the hospital in one day, she was admitted for several days. Before coming home, a hospital bed was brought into the home and her queen size bed was moved into our living room for several days until my husband could move it out to his storage shed.

In the midst of all of this, so much else has happened. Our 14-year-old cat and 11-year-old rabbit both died (unrelated) and then we adopted a pair of rescue bunnies. I found out about my pregnancy, which I am thrilled about because my husband and I have really struggled with infertility.

Anyway, I feel like everything is always about my Mom, even to our family's detriment. It's really bothering me because it gets to be a safety issue. For instance, my midwife does not want me to have *any* contact with her urine or feces since chemo is excreted in that way, and so she says that Mom needs to flush twice with the lid down and then wipe off the toilet with antibacterial wipes before I can use it. Even then, I have to wait 10-minutes after Mom goes before I can. Right now we only have one bathroom since our master bathroom is under construction. Even when it's done, though, my 2-year-old will have to share a bathroom with my Mom. Well, she acts like it is a big deal to wipe off the toilet and she doesn't want to do it. Today, the occupational therapist also told her to put her bedside commode over the toilet to make it easier to sit down. This means that she has to move the bedside commode in order to put the lid down, flush, wipe it down, etc. Well, she got MAD at me for saying that and doesn't want to do it, even though the bedside commode isn't all that different in size/weight from the walker she uses all day long. In other words, she's *able* to move the commode but (and I hate to put it this way, but it's true) she's just too lazy to move it. If anything feels like it requires more exertion that sitting on the couch she just doesn't want to do it. But, in doing this, she's putting my unborn baby at risk, as well as my developing 2-year-old son and my husband who is still of fertile age. I have been told --flat out-- that if she doesn't follow the guidelines for the bathroom, I CANNOT use that bathroom, which would leave me and the other members of the family going to the bathroom in a bucket and taking sponge baths or signing up for a gym where we can shower, though I don't know how in the world we'd ever get there to do that when I can't even get to the grocery store.

Then, it's just little things that drive me nuts. Like, I'm sick from this pregnancy -- throwing up, fatigue, etc. I feel guilty for even complaining about it since I know she's dealing with more, but at the same time I am responsible for taking care of her, my son, my unborn baby, my husband, the church, and the list goes on. If I can't lie down for even five minutes, there's a problem and I'm not going to be any good to anyone else for very long. Well, as soon as I lie down, Mom starts asking me to get things or find things for her in the kitchen. She's able to find things in the kitchen herself. She might not be able to get to something in the storage bench until my husband gets home, but there is plenty of edible food in the house that she can reach.

Anyway, so then smells and such bother me and make me throw up at the beginning of pregnancy, so what does she do? Make tuna fish for lunch yesterday. Now, she can eat whatever she wants and I'm not going to tell her not to make something, but a little consideration would be nice. I puked and could not eat much of anything for the rest of the day -- just got me going in a not-so-good direction, you know? Well then, today at lunch she has the tuna AGAIN. And, again I'm sick. I mean, of all of the foods in the world that don't do this to me (smell wise), why does she insist on fixing the one food that's worse than all of the others? I feel like she's trying to torture me and like everything is always about her and that I don't matter at all, my needs don't matter at all.

On top of this, we've had to cancel countless social engagements and I feel totally detached from my friends and my support network. Every time we plan something, some emergency comes up and we have to cancel on people. I feel like we are alienating our friends. I've even had to cancel my own medical and hair appointments because of things coming up with Mom. Oh yeah, and then she wants me to take her to get her hair cut when I'm already beat and haven't even been able to tend to my own.

Another complicating factor is that since she's gotten here, I've missed so much work that we are way behind on our bills. She does not respect my schedule and work needs. I am as firm as I can be with her, but still....something always seems to come up and I don't know what to do. I have GOT to work or we will not have the money to live, let alone to take care of her. Somehow she doesn't understand that no matter how I try to explain it to her.

Mom does not like to do things that she is capable of. She was not a very physically active person even before she was sick. Well, now as part of her clinical trial, she is supposed to walk for 30 minutes per day. She can do that however she wants: three 10 minute sessions, six 5 minute sessions, etc. She won't do it if she feels at all tired or if she gets sore the next day. It drives me nuts because she doesn't realize how much that impacts our lives when she becomes unable to do things because she refuses to walk and take care of herself. Mom even wants me to just get her television dinners even though she is able to stand and fix a meal in the kitchen. Our food budget has tripled since she got here.

Oh, and that brings me to something else: money. She pitches in $200 a month for groceries even though our normal budget of $200 for the whole family has gone to $600 and that is even without buying her tv dinners to use all the time.

Plus, if Mom is able to do things, shouldn't she be doing them? I don't know what to do. On the one hand I feel mean, but on the other hand if she has the ability, it seems like the only way she'll keep the ability is to keep up normal daily activities as much as possible. She likes to act helpless even though I know that she is not. She wants me to do everything for her.

We do have a little bit of help coming in but it's not really helping to take the stress off of me because they don't stay long enough to really give me a break. The home health nurse pops in for 10-minutes a couple times a week. The physical and occupational therapists show up for 30-minutes. That's it. During that time, I'm usually trying to care for my son (breakfast, lunch or whatever) and keep one ear on what they're telling Mom so that I can remind her if she forgets things and so that I have the complete picture when talking to her other medical professionals.

At the end of the day, I'm so tired that I pass out on the bed before I even get a chance to do the nightly "check in" that my husband do each night to keep our relationship healthy. We don't really get date nights anymore and I worry about how this will affect our marriage over the long-term. Right now we are okay, but I can't imagine that we can keep up this pace forever.

So, this is the point at which I realize this is affecting every aspect of my life. I feel like I am living my life for everyone else and like I am not present for it myself. Everything I do is for someone else...taking care of one person or another. It seems like my needs do not matter, like my own desires for how I live my life are selfish and like I shouldn't have them. I don't know what to do. I don't know where to turn and I don't know how to balance all of this and how to deal with someone who thinks that everything is all about her. How do I do this? I know the Lord is with me but sometimes I feel like I'm in a nightmare and I just can't wake up.