EXTREME Caregiving: Minutes Count and Stop Being Ridiculous


EXTREME Caregiving: Minutes Count and Stop Being Ridiculous

guestbook-429410_640My husband looked at my face today and said its the first time he's seen ME in months. My face isn't the mask of worry as it has been.

As mentioned in my last blog, I found a bracelet. Proverbs 3:6: "It in all thy ways, acknowledge HIM, and He shall direct thy path." I'm a believer, raised Catholic and am a Christian/Cathloic (as all Catholics are). I've taught Sunday school too. lol But I'm not one to be quoting scripture and stuff. I've got blue streaks in my hair, love wearing my doc martins (combat boots) and love my Pearl Jam and alternative music. Finding that bracelet  resonated with me on so many levels. It has changed my outlook

Nothing has changed with SIL. Yes she's better today, but her situation is fluid and will continue to be so. There will be many changes--up, down, sideways. But that's how it's been since I became her caregiver, even more so on the EXTREME side but now I'm finding me again within the chaos.

This time crisis mode can go on indefinitely. We have no timeline whatsoever. She is BETTER on hospice physically than she'd been in the hospital. She's on the same medications for years except the psychosis one.

Something came to me today, another layer in my change of thinking. I was reading @lily's blog about caring for her husband and how she reacted to HIM as a person and not his illness. In dealing with SIL my mom was telling me if she herself started falling forward if she was sick I'd better tie her or something to keep her straight. I laughed. I was like you're my MOM, I wouldn't even hesitate. I wouldn't have you hanging over like that, you'd hate it. In my house, Mom included, we are very real with each other. If something's bugging us, it's out there. We argue and get over it, nothing is really held in. Kids' friends are in and out, open door policy. If your hungry, go find something. lol Nobody gets catered to. If you make a mess I don't care, but clean it up afterward! Pretty free and easy here, they all love it, they all feel at home. What do you mean knocking on the door? Lol Come on in! You're welcome here. All my cousins and aunts and uncles--same thing.

With SIL it's always been different. Her not us. She's done this weird thing with everyone she's lived with too. When she lived with her sister she had her little bag of stuff and her purse and water bottles and she would park herself on the couch in the living room and never move from that spot except for the bathroom. She'd say she'd try and be as unobtrusive as possible, saying she'd only take up a little bit of space. But she was always right there in the middle and everything had to move around HER. Same at her mom's. She parked herself on the couch in the living room and never moved from that spot. Sleep, eat, everything. Her mom had an extra bedroom, she had her own room there but no, she stayed in that spot on the couch in the living room and refused to budge. It was so bad that when we moved MIL to senior housing--a one-bedroom apartment--MIL had us set up her living room as her bedroom! She said she was dammed if SIL was going to take up residence in one little spot, yet effectively take up all the common areas because she never moves. Haha SIL was forced into the bedroom and MIL got her space back. Before SIL came to live with us, she stayed two weeks because she got into an argument with her mom. She did the same thing. Picked her corner of the couch and DID NOT MOVE for two weeks. Water bottles lined up, purse and bag next to her. This was before she was very sick. She had some arthritis and bladder stuff, but full mobility. All she needed was some Kleenex boxes for shoes and she would have been good to go! I'd forgotten this. But now I know why I feel uneasy when she's in family room too long. She may sprout roots.

I think she did that in my brain. Trying to take up as little space as possible, be unobtrusive but RIGHT THERE TAKING OVER EVERYTHING. So like her mom, I've moved her into her own space in my mind. I allowed it, the fault rests with me. I'd set boundaries when she moved in. My house is noisy, kids have friends in and out. We're messy and loud and like to have fun. We argue, we get it out and get over it. I didn't change how we are, but my thinking sure did. For four years I've treated her like a guest. I didn't realize it myself. Everyone in the house goes with the flow but she didn't. Separate food, meals and all. She brought in the little fridge herself without asking. Before she had any money, she just brought in a fridge. For awhile she wanted separate meals made for just her--not easy stuff but shredded chicken, gravy mashed potatoes and string beans. I let that go on for YEARS. UGH. WHY? Now she eats what we eat or something microwave. She's taken over every aspect of my life so no more special treatment like that.  She kept her distance by her choice. Well, now she's all in. We have to be all in, so dammit, so will she. No more separate nothing. We don't get that luxury. We all have to be involved in her care, so she has to get thrown in with us too. Same rules apply.

I noticed I treat her like a guest, polite and accommodating, not like the kids and mom and hubby. It wouldn't be this way if any one of them were sick. Of course I would go above and beyond like I do, but I would not take the ridiculous. I've been watching the time. I tell SIL I know it takes less than one min for you to take your pills. Here it's been 15 of you messing around. I will hang out but you are wasting parts of BOTH of our lives doing dumb stuff. God has you here for a reason and it's not THIS. Look at your left hand, you're using it again. You are sitting upright! You are paying attention to your shows! You have time, you're not going anywhere right now. Use this time, get enjoyment out of your days any way you can but not by being ridiculous about dumb little things. She's lucid, still talking, it is not like she's out of it or else I wouldn't say anything. The things she cannot help are not a problem in the least, when it's not her fault we always reassure her it's okay.

I've been re-organizing the house, doing my hair and nails and getting my life back. Nothing has changed, but everything has. I'm sleeping again, eating real food. Laying around bumming it (hey, I'm on vacation!), saw Cinderella with my daughter, hanging out with my husband. I have plans for my week I can actually accomplish like getting the craft room in order. When I am needed of course I will be there but ridiculousness and time wasting have no place in my life anymore. I've had my family stay before. It's always get with the program or there's the door. Perhaps it's because I didn't know SIL all that well. When it was MY family I said how it goes. If one of my family tried that fridge trick, I would have wheeled that sucker right back out. As it was I was beyond pissed, I didn't talk to her for weeks (this was years ago) but I let it happen, didn't I? Food in this house is for everyone but I let her have her own. Now I know why my kids resented her. We all share, but her again this separation which we do not do.

She's very clear the last few days. Today I told her, "You keep getting better, you have a life and I have a life. We've both been stuck in this room and I'm not doing it anymore and neither are you. We are not waiting to do things until you feel better, we will do them sick and you will feel better doing stuff." She's been doing the same thing for YEARS. Sitting on her bed, drinking Coke, smoking, and watching TV and doctor appointments. Now not so much Coke, nurses come here and no smoking. Her friend asked if she gets out. I was like no, but she didn't want to do anything before. I ask and the answer is no. Four years and I can count how many times she's been out of the house aside from doctor appointments. Even with her mom she just did what she had to, otherwise TV and smoking. Before these diagnosis that's what she did.

Blogging helps so much. Sometimes I don't know what I'm feeling or where it's stemming from until I start to write. Then it's THATS WHY! Different from a journal, I know someone will read this maybe? Months, sometimes years, of confusion and tension are let go here. I am so glad I found this place! Thanks for the read, and for the vent. All comments so appreciated!

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<a href='http://www.caregiving.com/members/denise/' rel=\"nofollow\">@denise</a> hahah no, I think she LOVED being a guest. I think the LVN nailed it, she got spoiled lol....now I can say NO....and I don't feel bad. No more luxuary hotel, she's one of us. And I feel better and she's doing better.


Hi HSG--It sounds like your sister-in-law wants to be a member of the family and not a guest. :) So, I think you figured out what you both need.


Thanks for sharing this enlightening blog. “Nothing has changed but everything has.” -- says it all. \r\n\r\nI sometimes have to remind myself when someone else is running my thoughts that they aren't paying rent to be in my head.


Thank you for such a wonderfull Blog. Thanks for sharing. Extreme Caregiving is what it seems like sometimes. Minutes do count. Thanks again. :)


All of you girls help me so much! More than I can express ! Most times I feel like a complete idiot bumbling around haha. Oh crisis mode I'm great...but jeez, I've been failing at LIFE lately, since late November probably and finally through all of you guys and this place I think I regained balance. See perspective. Writing has helped so much, your comments_mysql even more. I'm not alone. Mom asks \"what did they say?\" After each blog, it helps mom too. Mom is great at this, she always keeps balance....with me its all or nothing and I dive in head first, get lost until I'm forced to come up for air. Always been this way for me, moms my rock and let's me run awhile, then bops me on the head &amp; says \"ENOUGH\" lol....hard headed as I am, it still takes Mom ! One of these days I will grow up....maybe :)

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