EXTREME Caregiving: A New Approach


EXTREME Caregiving: A New Approach

magMagnificent_sunriseA few days ago I was at such a low point. SIL (as shared previously) was falling and we figured out it was attention seeking. I got so hurt and confused. I usually take things in stride, but I'm sorry to say I didn't this time. The pressures of the situation caught up I guess. I was so sad, so disheartened by that. Just WHY when I do everything I can to help her?

SIL continues to remain stable and while it should be a celebration, at the forefront was my fear she would do something that could make her situation so much WORSE!? So Monday morning for a few hours she was confined to bed, rails up. Of course she hated it, we hated it. Something clicked though! Mom is no-nonsense, she gets the job done, no dilly dally or game playing with MOM! Uh-uh. There were no falls on her watch the whole time, only with me.

Mom told SI: It's too much on me. I'm sniffling and crying and beating myself up and if she doesn't behave, Mom's taking over, and nobody wants THAT. HAHA! It's so funny, my mom was a caregiver to my grandma and great-aunt. They were 86 and 93 and Mom was the main caregiver to BOTH for several years at home. At the very end they were both on hospice and passed within six months of each other. My grandmother died from complications stemming from a brain tumor and auntie (the older sister) died six months later from old-age and probably from the loss of her little sister. THEN my mom was the sweet one while my aunt was all business. I guess as caregivers we adjust to the situation at hand.

Mom says SIL is SO much harder. Auntie and Grandma were not bedridden either, they had their days, sometimes both at once. Auntie was "all there" til the very end but Grandma had some dementia the last year due to a hemotoma on her brain a few years after brain tumor was removed. I helped out a lot with them, but it wasn't me on the daily. Grandma was a bit of a perfectionist, always was, but she was also the sweetest, kindest person ever. I'd go over and help and Grandma would have me up on the ladder, taking down her extensive collection of blue willow ware. We'd wash it all with care, then I'd be back up on the ladder arranging it "just-so". She easily had 300 pieces in her collection, she had a wall of glass fronted upper cabinets in the kitchen, a big wall dedicated to her willow ware. Haha. Auntie and Mom would go nuts as Grandma would tell me to move a plate an inch to the left. "Leave her alone!" Auntie would say in Spanish, and finally Mom and Auntie would leave the room! Me and Grandma would laugh and laugh. I wasn't bothered, we were having fun and hanging out. I could've told Grandma no and she would've called me lazy bones and softly popped my head and laughed at that too. I could tell Grandma anything. I was very lucky, I didn't mind her being picky. I'd give her pedicures cause SOMEBODY had to try and make those feet presentable. Haha Can't have grandma running-around looking busted ! She liked to make me change polish because I wanted pink or red and she wanted neutral and Auntie would yell at her to quit complaining, at least I was doing her toes! She was lucky they weren't black or purple like I like to wear.

Trouble is, I wasn't grandmas EVERY DAY caregiver. I could go a couple times a week and make Grandma happy and then go home and goof off and spoil myself, play with the kids, watch TV! Have a life. When someone is sick, especially as sick as SIL, it's in my heart to do what I can to make them happy.

SIL's dogs are a royal pain in my ass. I don't have animals for a reason and have NEVER had one inside, much less two, but because they made her happy, I've done it. I've had to do all their care for several months now. The dogs have been a bone of contention always, more so since she became extremely ill. They never had accidents in her room because she trained them for that. Oh, but the rest of the house was fair game. She cries she wants them inside, but not in her room. She's fallen climbing over gate. She fell lifting them over gate. She fell walking across house to let them in because she didn't want to wait two minutes. I work doubly hard keeping her room clean and fresh smelling because she now wants dogs In all the time. Thank God her room has tile, it's why she choose that room. Now at least I've trained them so that they go straight to her room or straight to back door. We almost lost this house because of dogs, they hadn't planned on allowing pets, and and we had to pay a $500 deposit for her to keep them. A major reason we had to move in the first place was because of her dogs. The previous landlord refused to take pet deposit and charged us $100 a month for her dogs.

I do the little personal things. Keep her hair cute, toes done. Pretty sheets, good pillows. Mom makes her foods she wants. She says she wants a certain food then feeds it to her dogs. She's only ever limited by what will get her hurt, and only AFTER something actually happens. Mom would actually like more limits to keep her safe, but I try to let her do anything she's able. I try and look at it from SIL perspective, who wants limits? I know I don't.

As SIL's mind gets clearer she is doing more and more for attention. As the fog is lifting, her demands are more. While we should be celebrating, she's throwing herself on the floor. I'm giving all I can possibly give. I talk to her about other stuff not about sickness. I try to get her interested in anything but she doesn't care. I ask what she wants, give her anything I can. She's even just ripping off diaper and going on the floor. She doesn't do this to Mom.

Shes saying snide remarks about Mom, deeper meaning stuff so I know she's 'there'

I've decided I can't prevent her falls, and all I can do is put the safety stuff in place. I'm not going to keep her in the bed or wheelchair. I looked at the situation objectively and know I'm doing all I can. She's clean, fed, given mostly everything she wants. Her mind is her own and nothing I can do to change her mind, only on how I react to it. That's the only thing in my power to control. If she makes mistakes or bad decisions it's not my fault. I'm beating myself up over her not being happy. Well, honestly she was never happy and nothing I could ever do will change that. SIL herself was a caregiver like my mom, no muss no fuss, no carrying on, no babying, no conversation, here's what you need, see ya later.

Maybe I should be like that, get the job done and out. How does one do that? Conversation is getting no place, she continues to say more and talk about real stuff and not surface stuff, like a regular person. Then she does that whiney baby voice cause she wants something stupid, sick little weak helpless voice she's been using lately. Then I talk to her normal and she talks back normal voice about it.

She told me, "Your mom thinks I do some of this on purpose."

I said, " Well you do."

"Not all of it," she says.

I told her I treat her better than she treated her Mom, maybe better than anyone ever has. She said, "Yes, you do." I told her she's gotta help me so I can continue to help her. She actually said, "Okay, I know, we've been over this." Ummmmm Yea, lady. THIS MORNING and ten minutes later, she was calling me to help her to the toilet she literally was hovering over. Then I told her I was going to be busy for awhile because I needed to clean up because the landlord was coming over to inspect work that was being done. She starts yelling, "Help! I need help out of my room!" Oh jeez....seriously? I was literally right outside her room cleaning up debris from a ceiling repair. Next she will call me to brush the hair from her eyes even though both hands work. Maybe to change the channel while the remote is in her hand!

I am seriously considering using the five-day respite care available through hospice. My fear is that they will give her her medications as prescribed. In fact, they HAVE TO, which very easily could overdose her. I continually have to adjust it, day to day, dose by dose. I don't even think they can do that. It would also probably trigger psychosis.

Last time she was in the hospital she was screaming all night to call 911, that she and her roommate (Beyoncé) were being assaulted. Lol. That woman sure wasn't beyonce! Not even close! She can't keep up this behavior. I can't keep up this behavior. I hate being tough. She is stable. She has not fallen ONCE since she spent the morning in bed. I hope she doesn't fall again, but if she does I know it will be an accident. She wasn't really hurt but because she's fragile she's bruised alright. Shoulder, and forearm and inner arm from getting helped up. Ridiculous. A miracle she didn't really hurt herself!

Thanks for the read and allowing me to vent again! I appreciate comments so much!

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When my husband was in the hospital, I would watch the staff there and how they would relate to my husband and often wondered \"For people who should be so compassionate, why were they so cold?\". It wasn't until my husband came home and I began taking care of him that I soon realized that you have to allow yourself some \"Distance\" between yourself and the person that you're caring for otherwise, they can drag you right down with them. My husband is very sweet and I really don't think he knows how hurtful his actions and/or words can be sometimes, or how difficult it is taking care of somebody who you love and respect. Over the past couple of years now, I have learned not to take things so personally when it comes to my husbands actions and/or words and truly believe that these are just the results of the stroke that he suffered. When days are bad, I try and reflect on the man that I married and realize that this man that I'm caring for is not the same person that he used to be and I just need to continue on.

Lillie Fuller

I agree with totally with <a href='http://www.caregiving.com/members/ccforsure/' rel=\"nofollow\">@ccforsure</a> EGD, I understand though why you choose not to take the 5 day respite care, you would have more to handle on your return. My hat is off to you for your determination to make everything alright for SIL! I think you are doing a great job.


Dear HanS, I really like where you are going in your thinking. I love how your mom is teaching you and modeling her style of care giving - definitely from a Mom's perspective!! It is very difficult to be consistent and/or strict when you have such a sweet, compassionate heart. When you have observed the results of the way your mom handles things, you have appreciated the results! As you can, just try to change one area of your care giving to be more strict or consistent. I like that SIL has had no falls lately but like you, the dogs really are a concern - WOW! You've bent over past being reasonable to accommodate the pets!!! As far as the Negative Talk (\"snide remarks about Mom\") about others goes, I have refused to allow Elly to begin that conversation. It is disrespectful and it sucks life out of the day for me when she starts it up -it's a boundary that is needed for my sanity! You have such a heart of Gold, I would let you care for me any day! I think you've earned a 5-day Respite care vacation!