My elderly dad had a stroke almost two months ago. After being at a rehab facility, he wound up back in the hospital. My mom called my two sisters and I to come to the hospital. She told us he just wanted to come home and my sisters both agreed that he needed to be at home rather than a facility. I was the only one against him coming home because I was concerned about the care at home vs a facility, how it would work, etc., but was told point blank that he was coming home. My sisters both agreed with my mom and told her we'd all take turns staying and helping her, that "don't worry, we've got this." *I* have been the one here 24/7 since almost a month ago now with one sister staying for less than 24 hours one time. She says she has work, things to do, etc. The other sister told me she has a job and kids (teenagers, BTW) to take care of, even though she has a spouse there with the teens. I have been basically working from home since Covid hit with the exception that I have a couple of mandatory meetings each week. Those days, my husband leaves his job to come stay until I can get back.
Am I wrong to think I need a break? I'm writing this at 3:00 a.m. because I rarely sleep as I'm watching my dad. He has sleep apnea so I sit here waiting to be sure his next breath will come. Every single time he does that gasp thing to breathe, I know he's okay for another little bit. (Home health is working to try and help us get a C-Pap machine.) My mom is completely exhausted so I try hard to do whatever I can to help her take care of him, the house, and supporting her while also trying to let her sleep at night. I would never tell her but I'm totally exhausted as well and think I need a freaking break. Every single time I've asked if one of my sisters could come stay so I can go home, all Ihear are excuses. The one time I was allowed to go home, I fell apart and cried for a couple of hours while my husband held me. He then tried to get me to eat but I just took a sleeping pill and went to bed. I slept several hours, got up, did some laundry, did a Kroger order, cooked breakfast for him (the first meal I'd cooked him in weeks), took a shower and came back. I've been here ever since other than my husband coming so I can go to my meetings each week.
I'm freaking tired so I asked my youngest sister if she could come stay last weekend and she told me "You know I have kids and can't". I asked why her spouse couldn't watch them and she said "because I have to be there", whatever that means. I asked my other sister and she also had some BS excuse why she couldn't. I feel like they need to step up because while I know they both have jobs and lives, SO DO I. Other than them being upset that our dad had a stroke and is bedridden, their lives haven't been affected while mine has totally screeched to a halt for the most part. Every week I hope one of them will say they'll come stay so I can get a break, but every single time all I hear are excuses why they can't. My husband told me yesterday that I need to get them both here at the same time and get them outside so my parents can't hear and tell them that I can no longer stay 24/7 since they can't even give me a break on the weekends when they're not working. That they need to help me convince our mom we need to send our dad back to the rehab facility. This would just be an attempt to get them to agree to come relieve me on the weekends. He thinks they'll get upset and agree to come because they don't want him in a facility. I don't understand why one can't take Friday night and the other Saturday night. I think I need two nights in a row because the first night would be for me to fall apart and cry since I don't do it here. The second day would be for DH and I to try and have a few hours of "normalcy" before I have to come back to being a full-time caregiver. Since many of you have been doing this longer than I have, I'm looking for advice on how to handle this before I totally go insane! Thank you!
Later, I was outside on the phone with DH and when I cane back into the room my mom was crying. She said she and my dad had a talk while I was outside and he told her it's too late to recover and that he's given up. 😭 She told him she'd never let him as long as she alive and they cried again. She started crying harder and told me she's afraid there's no hope he'll recover and she just wants "to put him in the car and drive off into the sunset together because I can't live without him." And then we talked about whether or not he needs to really be in a facility. She said she really thought we'd be able to take care of him at home but she didn't realize how much it all entailed. Sigh... The whole entire thing just breaks my heart for both of them. 😭😭 Thanks so much for listening.
Dad either goes in a facility within 30 days or you leave and they figure it out .
The nerve of them . It was their idea to bring him home , not yours . They should do the care ( not you ) or Dad should have stayed in a nursing home .
Maybe if you just stated the obvious-"No one wants to do this so , Okay, dad's going back to the Facility." . If they try to "convince" You to continue caring for him, just tell them-" It's not up for discussion-you either do or don't, and I've already arranged it with the Facility to take him back."
If Dad needs this much care, he needs to be place in Longterm care. Mom can see an Elder Lawyer about splitting of assets if Medicaid would need to be involved at any time.
I'm sorry but you are just going to have to disappoint your mom and go home. You have altered your reality just so they don't have to face theirs. Get them all together and tell them you can't do this anymore. They all insisted they would help then they didn't and you can't do it all. They wanted this so they need to figure it out. Saving your mother is only prolonging them thinking that this is actually working.
My mom also mentioned that we need a schedule of who's coming when so she'll know and I told her that as of right now, I'm it because they don't seem to be going to participate like they said they would. She again said "I'm so sorry. You can just leave if you need to. " I told her that she can't do everything by herself and she said she knew and started crying.
I'm just so mad and tired and frustrated by the whole entire thing and this is killing my mom. They will never convince me that him being at home is the best option for him. I get that he wanted to come home but my mom is limiting visitors so what's being here accomplishing? 🤷♀️
Thanks so very much for listening to my ramblings. I know I'll come back and answer more later. PT should be here soon so I've got to wrap up an email for work to be ready for the therapist as my mom wants me to listen to everything they say.
You are seriously being taken advantage of. My cousins thought they had a fool, and they did in the beginning because I wanted to help. But guess who was getting burned out and losing sleep and being inconvenienced? Me! I was taking time off work, and their lives were going as normal.
I had enough and stepped away. You need to get him back into that facility promptly, or you'll get stuck. That's what family tried to do to me. Everyone, like you said had an excuse. No one wanted to help. They saw me as the solution, as your sisters and mother see you as the solution.
NO! No more. You come first. Start getting him back into that facility and don't let them guilt you. As long as you're the solution, they'll figure you can handle it. Stuff like this makes me so livid because I went through it. They are not going to help you so long as you're doing everything.
Also, like someone stated, you may look like the bad guy, as I do now, but oh well. (Hugs to you).
I’m sorry to tell you this, but you’ll get no relief until you’re willing to be the bad guy and stop being their solution to this problem. It IS your choice but it carries consequences.
Caregiving for someone at home only works if it works for all involved and it's obvious that it's not working anymore for you.
So only you can change that. Time to tell your mom and siblings that at the end of the month you will be going home to stay and that you no longer will be assisting with your dad. And if your siblings want to take over they can, otherwise dad will have to placed in the appropriate facility, where he will have a team of folks taking care of him and you all can get back to just being his loving family and not his burned out caregivers.
Or mom can hire 24/7 in-home help which in all reality will cost more than having him placed. The choice is hers.
But you need to start taking better care of yourself so you won't be in the statistic of the caregiver dying before the one they're caring for from stress related issues. That choice is yours.