Stay at home wife

I am asked how I am doing, but not very often, and definitely rare when it comes to being a stay at home wife. It is mostly my girlfriends and our parents that do, and more so that I am pregnant and carrying our child! I am more often asked how Jason is, I mean he is the one with the chronic illness, so I understand and it is OK! I also feel it is easier to always talk about the good that is going on, even in the blogs, than reality sometimes. No one wants to read these blogs if I fill them with negativity (I also think it is human nature to not want the full truth if it makes us feel certain ways)! We have always wanted a simple life, living well within our means and simple pleasures like camping, hiking, going out for ice cream,, and an occasional vacation, mostly around friend trips or making vacations out of visiting family being we live away from them. Let me tell you-the life we are actually living right now is VERY simple-a walk around 1/2 the neighborhood and sitting outside for 30 minutes are considered dates for us. If we have a doctor's appointment, we do nothing else that day. Need to shave? That is the entirety of the "plans" for the day. While ALS is a very tiring disease for Jason (me too, just in a different way), I still want for things like social interaction, dinner and a movie, a conversation about something important and serious. The simplicity of this is way more than I anticipated when "signing up" for all of this.

Let me explain: I knew Jason had ALS when we got married, although it was known by very few. He was not diagnosed when I said "YES" and had not had his first symptom for a few months yet, but I did know 2 months prior to us getting married. It never even crossed my mind that we wouldn't get married because of it, but I've been told that there are many people out there that have questioned why OR were surprised that I went through with it. I have even been quoted that 95% of people would have "backed out," although this is a statistic that will never be proven (back to human nature and not admitting or believing negative qualities about ourselves!) I was asked, I think it was 2 days prior to our wedding, "are you sure you want to do this?"

UMMMM....if I backed out, I shouldn't have said yes in the first place, but this my belief and I am apparently in the minority.

Remember that we all have good and bad days. Remember also that Jason and I are a married couple...we differ in opinions, get upset, and argue! So when reading this,

please don't judge me!

I actually value other people's opinions too much for my own good, so please don't judge me! Jason has never cared others' opinions of him, and I love this about him. Although he has said that he loves that I am nice and kind and that I do care about me!

With this blog, I'm just trying to be real. We chose to do this-for me to be at home for several reasons. Today and EVERY DAY, I would choose it again. There is NO WHERE ELSE and nothing else I would rather do than be with Jason all day every day!

I have stolen this from Facebook and I’ve change some wording to fit with a stay at home wife versus how it was originally written for stay at home moms (with my own comments in RED).

Stay at home caregiver (SAHC) depression.... The elephant in the room nobody talks about I mean, how DARE you complain after being gifted this opportunity to stay at home and be with YOUR own husband (insert whomever is being cared for!), but it's not that simple. Of course we SAHC's are being grateful to stay home and take care of our husbands and households BUT that is literally all we become.

No one talks about the isolation. No one talks about the loss of identity. No one talks about the loneliness. No one talks about losing your sense of self. No one talks about how you had to give up your career because it's cheaper for you to stay home. (Footnote 1) No one talks about how you cry in the shower because your day was overwhelming. No one understands why you're tired. No one understands why you're irritable. No one understands why you need a mental break. No one understands why you're so aggravated with your spouse No one understands why after you've been home all day, the house is a wreck still. (This is not true of me....everything is always pretty orderly-it keeps me sane!) No one understands why you just need 5 minutes with no one speaking to or touching you. No one understands why you've lost your sex drive. No one understands why you're completely & utterly exhausted, after all, you just sit at home all day 😒 No one understands the feeling you have when you are told you don't have a "real job". (Footnote 2)

Most of us were working women at one point. We got to go to a job and interact with other adults outside our home. We contributed financially to our household. (Shoot, most of us want some kind of side hustle or part time job because it would sure help with financial relief) We didn't feel like an endless maid. We got that break away (even though yes, work is a love/ hate relationship) that gives you space from the people you live with (children, spouse... Etc) because yes, EVERY relationship needs time away in it to not go crazy being around each other 24/7. That's not healthy. Contrary to popular belief... YOU👏NEED👏A👏 BREAK 👏 DAILY 👏 (Footnote 3)

Oh, you have to much time on your hands. I sure wish I could stay home, I wouldn't complain…good for you! I can guarantee you will change your mind 6 months in, unless you're wealthy and have money to constantly go do things.

I once was you. I wished upon a star I could stay home because I wanted to spend all the time I could. This did happen for me-back in October/November/December 2016.

Oh but YOU chose to do this. YOU should've thought about that before deciding this If you didn't want to go through all this YOU should've never committed.

Next time you hear or see a SAHC venting their frustrations, listen and make them feel like they're somebody. That their struggles are not invalid. You know just because they don't have a "real job"

Footnote 1: NOW this is a whole separate discussion thread, and very true in the caregiver world! Jason requires skilled nursing, which is more than double the cost of a nursing assistant, called private duty nursing. Unlike care assistants or nursing "visits" to teach in home care, private duty nursing is not covered in, well, anyone's insurance policies, unless you’ve got a second one or specifically prepared for it, which is common with older populations way past retirement

Information on private duty nursing from the company we use through the ALS association ----> Bayada

Footnote 2: TAX man documented me as a "homemaker" this year-NOT KIDDING! Like one word can explain my role. I help Jason work. I manage his meds and appointments sometimes making 5 phone calls/day. I argue with insurance. I am his advocate. I am his personal assistant. I encourage and support. I provide anything and everything needed. I am the only one that can communicate with him without a computer...I am the only one that can work the computer. I know his likes and dislikes, and I can anticipate a need or want. I've never even worn contacts, but I can do everything associated with them, including lose a set weekly! OK...I think I'm giving myself a pep talk HAHA

Footnote 3: I cannot run to the grocery store because I want strawberries, have planned a specific meal, or ran out of ketchup. I make a list and I do it on my errand day of the week. I do not sit on the back deck for hours reading a book. I do not shower or leave the same room without a monitor so that I can hear Jason and/or his machines. I do not leave the house to even do yard work. I cannot do any activity that is loud that will keep me from hearing a machine beep or that will keep Jason from napping. Although I do stuff for myself-read, scrapbook, DIY projects, typing these blogs...Ithey are not without frequent interruption. I don't leave or take a "break"

I don't have the option of calling a sitter and getting away without very careful planning and weeks in advance planning. Life support cannot be managed by....anyone! Jason also does not want anyone else-he trusts me. Although he knows I need it, he does not want me to leave and counts down the minutes until I get back when I do run errands once a week or when I do make plans with neighbors (3 times in about 5 months). We do have a caregiver "respite" support program that we do through the ALS association that pays for 4 hours a week of a skilled nurse coming in-previously mentioned company Bayada. They have been with us about 6 weeks now. (a nursing assistant came for about 3 months last summer, but her hours didn't match our time needs and a replacement hadn't been found within a 2 month period, so we switched companies....anyway-long story! We still have a relationship with her and ask her to come when I arrange to go out to eat with neighbor friends)

I recently texted a friend about it being my break day, and the response was something like "4 hours-wow! That's awesome. What did you do?" I ran errands---seriously...that is all I had time to do! DO NOT GET ME WRONG....I am not ungrateful, and this week (Tuesday), because I had planned ahead and had no errands to run, I did get my nails painted in preps for baby showers :) It was a late birthday gift that was Jason's idea, actually.

I do not want sympathy. I do not want things to change. I love my husband and I love my life! Just not 100% of the time and IT IS HARD! I cannot explain how hard it is. But there is no other "job" that I want. I just have to figure out how to stay at home wife AND mom with a balance of ME all at the same time, and SOON! In preps for baby, we are very lucky to have Jason's mama with us this summer (and his DAD too!)-I'm just not sure how we would do it otherwise.

Oh, and this may be the most important thing written in this blog....

we don't like to use the word "break" because Jason doesn't get a break from any of this....