Going through some issues... (meal, support, pregnancy, single dad)
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I'm not sure if this is the right forum (maybe relationships), but since it has a large impact on my kids I thought I would post it here. I apologize in advance as this will probably be rather long.
My wife has recently become rather ill. She has battled health issues on and off for years never getting a clear diagnosis of what was wrong. Often times the symptoms would fade away and something new would happen months or even years down the line. The only thing she has had consistently is migraines which she was diagnosed with at age 4. She takes all of her preventatives and even when she has one you wouldn't know it (I do as I can see it in her eyes) as she doesn't allow it to interfere in her day-to-day life. She gave birth to all three of our children (5 years, 22 months, 7 months) without any major compications except a bout of borderline pre-eclampsia towards the end with number 3.
My wife had not felt "right" since the birth of number 3. What started as achy muscles and joints progressed to fatigue, but she was still doing everything she would normally do. Two weeks ago she woke up in the morning and could barely move. Her entire body hurt and her joints were swollen to the point that she couldn't make a fist. Walking was torture and she had to do what I can only describe as the "Ozzy Osbourne Shuffle" to get around.
The past two weeks have been a whirlwind of tests and doctors visits. Although there is nothing conclusive yet they are 90% sure that she has Lupus (the other 10% is a thyroid condition) and we should have all of the results of those tests back sometime next week. If it is indeed Lupus there are medications she can take and therapies she can try, but there are no guarantees that any of it will work. She may be like this for the rest of her life, or she could be largely normal and simply have "flare ups" that could last days, weeks or months.
We are fortunate that I am able to provide for the family financially and my wife is a stay at home mom. So, while our income doesn't suffer, my kids definitely do. We have been relying on a revolving door of family to help out with the girls during the day and getting my son to and from school. The evenings I get home from work and do both jobs. I get dinner ready, do baths and bedtime, straighten the house and then pretty much collapse only to get up the next day and do it over again.
The first few days the kids were seemingly oblivious to the situation. I guess they just thought that mommy was sick and would be better soon. Now that it has been almost two weeks the 5 year old is really starting to get anxious and ask questions. We've explained things to him as much as we can, but he either doesn't fully understand or doesn't want to. Not that I can blame him. We haven't gone into extraneous details and have mainly stuck to the mommy isn't feeling well and needs a lot of time to rest and has to see a lot of doctors to make her better. That's about all we really know at this point, so I don't know what else to tell him. It's really hard for him, because he has always been a bit of a momma's boy. For instance last night he bumped his head getting into his bunk bed and cried for mommy. Well, mommy was downstairs in the living room. Daddy was there in 2 seconds flat, but he really wanted mommy. To mommies credit she got up those steps to console him, but it hurt her a lot and took a lot out of her. What happens if mommy just can't do it?
Outside of the kids, I am of course incredibly worried for my wife. Up until recently she was a young, vibrant wife and mother who kept our household humming. Now she can't even brush her own teeth without a monumental effort. She has so far tried to be gracious and have a sense of humor about all of this, but I don't know how she would handle it if this was a permanent situation. I honestly think she would prefer to be dead than be relegated to this kind of existence. I not only worry for her physically, but mentally as I can see the frustration, pain, guilt and now glimmers of depression in her eyes.
I'm also worried about me. I know it sounds selfish, but this isn't what I envisioned my life to be like. The past two weeks I have gone from just husband and father to also being mother and caregiver. I am responsible for everything to do with everyone. I have always been an active parent and did everything from midnight feedings to baths and fixing the girls hair. However, now, it is all my job. I'm really burning the candle at both ends to keep everything together and it is hard to focus on my job when so many things are wrong at home. I haven't been sleeping much and that finally caught up with me the other night and I pretty much just collapsed around 9p and slept on the couch straight through to 8a and was late for work. Everyone is helping out by taking care of the kids during the day to help my wife, but when I walk in the door, the help walks out and I am left with everything. I love my wife with my entire hear and soul, but I don't know if I can do this 24/7 for the rest of my life.
I know my wife is the one who is sick and is losing the most, but I can't escape the feeling that I am losing out on my life as well. No more vacations together, no more sex, no more time for me to do things I love. I know it sounds selfish, but it is just a little overwhelming when you are just shy of 30 to face the possibility that your entire life may be irrevocably altered and all of your dreams and plans may never happen.
Thanks for letting me vent. I'd love to hear from anyone who has dealt with a major illness/condition and how they got through it. At this point I may be over-reacting/thinking about all of this, but it's hard to escape day-to-day reality even if it might not be forever...but what if it is?
You've certainly been dealt a hand....I don't have any words or suggestions since I haven't been through anything remotely like this but I did want to offer encouragement. All you can do right now is get through each day. I would think that until you know more, looking too much into the future could be overwhelming (and depressing since we tend to worry about the worst). Glad to hear you have family/friends who are able to help out at least for the moment. When you know more, you can set out a plan for dealing with it. Until then, I think it sounds as if you are doing what you can. Best of luck to all of you.
I'm not going to say you're selfish. You're going through a huge adjustment to a major life change. I just want to warn you that you need to put all of your disappointment aside. My best girlfriend was diagnosed with Lupus and died 7 years later, leaving behind a 7 year old boy. (She was diagnosed with Lupus on the same day she found out she was pregnant.) I'm not saying that your wife will die in 7 years, but I am saying that you need to focus on embracing life and every second you and your children have with her.
On a medical note, please be careful with steroids. My girlfriend was on them way too long. Her hips broke simply walking across the livingroom. Also be super careful of pain medication. Sad as it is, Lupus is a disease where one needs to learn to live in pain. Relying only on pain medication puts a person at risk of dying due to accidental overdose. And the pain is very real. My girlfriend lost all of the cartilege between her joints. It was just bone rubbing against raw nerves. It got to the point where my girlfriend could only ride in a vehicle laying down. Her husband bought a van and put a mattress in the back---just to ride her back and forth to medical appoinments.
I'm a Single dad to a 13yo, .. Sorry bout whats happening with your wife, I know its hard on the whole family. Few suggestions: Out Source what you can that buys you time: Have a cleaing service come in every two weeks, Have the Lawn/garden be done by a service or neighborhood teen, Not sure how old your girls are but think about a Fathers (mothers helper) a 13/14yo Girl who can come over few days a week to watch the girls(son) for few hours so you can get so late afternoon stuff done. Plan some time just for you.. few hours a week where you can get away and de-compress.
This is so sad to hear, especially at your age. I've usually agreed with your comments on here too.
Is there any way you can move into a one-story house? That was my first thought. What about Visiting Angels or something like that? Will your insurance cover it? You really, really need time to yourself. The longer you go on this way, the more the strain will affect you, your wife and the kids too. I think there are support groups that can help as well.
Thanks everyone. This is probably one of the few places I have to vent these days.
Hopes - So sorry to hear about your friend. Until a few days ago I had almost no idea what Lupus was or how it affects people. Thankfully the vast majority of people with Lupus can live a "normal" lifespan and many regain a large part of their lifestyle with treatment. The biggest fear and unfortunately one my wife may face is Lupus Nephritis that affects kidney function. My wife has always had a certain amount of swelling in her ankles and legs throughout her life no matter how much she weighed (and she has always been in shape). Additionally she had protein in her urine during the last pregnancy (hence the pre-eclampsia symptoms). All of those we are finding out may be markers of Lupus Nephritis. Unfortunately Lupus Nephritis is debilitating and is the leading cause of death in Lupus.
On the drug front, my wife is very knowledgable medically. She worked as an office manager for a doctor before becoming a stay at home mom and was looking forward to pursuing a nursing degree when the girls got a little older. One of her biggest fears is the drugs she may have to take and what the side effects may be. Her migraines have taught her how to deal with being in pain, but nothing like this.
I am really just trying to take it one day at a time and do what needs to be done. Once we get a definitive diagnosis then we know what to plan for. If it is severe than we will be working to maximize our time. If it isn't severe than we will be working on quality of life.
I have thought about bringing in outside help to handle the lawn and the cleaning. Right now we just don't have the money for it, but I will most likely find a way if this is something we are going to be dealing with for the rest of our lives. We haven't told anyone outside of our immediate family (and you wonderful anonymous folks in cyber space) as we didn't want to say anything until we knew for sure. I'm sure there will be plenty of help available from our friends, neighbors and extended family if needed, but we will ultimately need to figure out how to do this on our own.
I wish right now we had bought a 1 story house, but we just bought our house and moving really isn't an option. If it comes to it there is space that could be turned into a bedroom area on the 1st floor if needed. On top of all that we moved to a great area for our family, but it's about 20 miles away from our families. The only saving grace there is that my in-laws have actually mentioned the idea of moving to our area to be closer to the grandkids...maybe that can become a reality.
At this point I don't know what scares me more the possibility of having to raise our three young children by myself or the possibility that my wife may stay in her current condition for the rest of her life.
Are you close to parents of your children's friends? You may be surprised at the support you get from them - or if you go to church, etc.
When my son was younger, the mother I knew from volunteering at school had her older son diagnosed with cancer. They had to be down in Denver at Children's hospital a lot.
One of the parents put together a group of us who would go in once a week and clean their house. We also were all on a schedule for bringing food. When enough get involved, it's not a burden to anyone. I think I cleaned once a month and took food once a month. She had food scheduled 3 days a week or so. When a group of us would go in to clean, we could get it knocked out pretty fast.
Just a thought. I can be hard to ask/receive help, but if people are willing, it could be life saver for you.
All the best to you. It's not easy - you shouldn't be worry about things like taking care of your yard, etc. right now - but focusing on your kids and wife. Let people know you need help - I think you'd be surprised at what you get! If you were my neighbor I'd be mowing your yard for you! Sorry those of us on here can't be of more help.
So sorry that you're having to go through this and all of the thoughts and feelings you're having are perfectly justified.
Like others have said, now is the time to ask for help from people--Church members, neighbors, friends. Most people are happy to help when people need it. You can do an e-mail to people telling them what's going on and I'm sure you'll have more volunteers than you know what to do with. Also, there's a website called Caring Bridge (I think) that is designed for people with serious illness. You can post updates and people can check what's going on without you're having to email and respond to everyone. People can also contact each other to arrange meal delivery and other services to their friends.
You'll have a definitive diagnosis soon, but Lupus is not always the end of the world. I know a woman who has had it for years and she has painful flareups, but she's also raised 4 daughters, worked full time and coached kickball.
As for church, we are practicing Catholics, but just moved to a new area and haven't registered at the parish yet. It seems like a very active parish at least by Catholic standards, so I am sure there is some help available there.
We are just waiting on the official diagnosis and will go from there. I just really want my wife back.
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