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!
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.
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.
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).
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.
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.
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.
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."
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 .
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.
My suggestion would be that you focus on your mother, and telling her how much better things can be for her and for your father if he can move to a nursing home. He will get professional nursing care around the clock, and she can visit him as much as she likes. First she can get some sleep so that she will be much happier when she visits. She can take him photographs, read him stories, talk about past good times and make his time as enjoyable as possible. They won't spend time crying to each other! If F is really giving up, it will be so much better for both of them if they are not worried and exhausted, and can just accept things.
Talk to your father too, and tell him how much better it will be for M when she isn’t so worried, and how much more settled he will feel when he isn’t worrying about her too. Tell him that M will visit, you will visit too, and ‘other family members’ may come as well.
This is the time to talk UP the good bits about moving into care. And with things going so badly now, it’s largely true. The very best that you can do now is ‘put on a happy face’ and make the move happen as smoothly as possible.
Lots of love, and best of luck, Margaret
I do hope that mrsexhausted can follow your advice, Margaret.
If they truly won't accept and hire help in the home which would give you time off in which to attend to your own rest and needs, then I don't see any alternative to care in a facility. This care will not be perfect, there will be issues and mistakes will be made. Facilities are understaffed and staff underpaid. But, things will also happen at home with untrained family caregivers, too. I was happy to have the opinions of facility nurses when health issues came up for my mom.
You will be able to see to his needs, visit as much as you want and advocate for him in a nearby facility. You will probably still need to help your mom with the home unless they could both go into a continuing care facility.
Your sisters have lives and their kids have needs. They can visit or not. It is unfair that they don't contribute after insisting he should be at home, but it is what it is. They are also missing an opportunity to teach their older kids some valuable life lessons and empathy and care for others by bringing them to visit once in a while to bring some joy to their grandparents. People who haven't been caregivers don't realize what is required. Some just stick their heads in the sand. In my world, people who don't participate don't have a say or get to voice an opinion. You and your mom need to take care of yourselves, not just Dad, or you won't be around to help him at all. I pray for you all on this journey.
As for rehab, I just don't know. The therapist yesterday told my mom that in a facility he'd get therapy five days a week whereas at home, he only gets it twice a week. She told me she's terrified that if she does that and they decide they can no longer help him that they'll just transfer him to a nursing home. I've told her that I don't really think they can do that without telling her and she'd have to sign something. And another fear for her is that "they will take everything we worked our whole lives for." I don't even know what to tell her about that because I know there's a "look back" period that they can go back to nullify any change in ownership. Oh, and she also said she really thought that by now (a little over a month in) that he'd be in a wheelchair and able to move around in it by himself. I told her that no, this is going to be a very long process, that there is no quick solution. She just started crying again. Totally breaks my heart for both of them.
This whole thing is just so hard and since it seems impossible to rationally talk to my sisters, I am about to scream. The one sister who talks down to me and is pretty mean honestly, takes offense at everything everywhere and thinks she knows more than anybody about everything. Like, she'd text me when we were still in the hospital and tell me a numbered list of things to ask the doctor. Made me feel like she thought I was incapable of thinking on my own and ask important questions. Same thing after we came here. The morning after we got here, she texted telling me that I needed to "make a schedule of what happens when and stick to it like they do in the hospital because they're the experts". At that point, we were just trying to figure things out and she's wanting a schedule of meal times, sleep times, when therapists were coming, etc. I told her that we had no freaking idea as we hadn't been here 24 hours yet and had been up dealing with different things that might until after 4:00 a.m. and no way was I waking him up at 7 and making him eat at 8. She didn't like that either. No two days or nights is the same. Like the last however many nights he's had severe diarrhea during the night, as well a at least once during the day. That's a whole process to clean up and then he cries because he's so embarrassed. She doesn't even try to understand but asks if we're giving him Imodium. I want to scream " We're not idiots! " Since the scathing texts from her after I texted them both about needing a break, I've heard nothing from her so I'm taking that as a win right now! I told my husband that the next time she criticizes something she thinks I'm not doing to her specifications, I'm going to tell her "Since you don't like the way I'm doing it, you come move in and help them. I'm done and am going home."
Thanks so much again for listening and trying to help. This is honestly the hardest thing I've ever had to do. 😭 And I'm so sorry that all of you know at least parts of it as well. It just all sucks...
How can you let her know that what is needed is hands on help, not advice? That if she could come and help, so her comments are based on real experience, her advice would be more practical and more appreciated? Could you reply with specific requests (not just general ‘help more’) that should be within her capabilities. Even adding to her shopping list and then delivering might be better than ‘advice’ that simply annoys. Perhaps even comparing her situation with mine might make it a bit clearer to her.
Getting old, possibly ill, and dying are the only certainties in life, barring accidents or natural disasters. We don't have to like them, but we do have to face them and deal with them. Your parents aren't at that stage of dealing with these difficulties, but you don't need to be dragged down with them and drown in their tears.
Margaret's advice about looking on the positive side regarding your dad going into a facility is absolutely the best way for you to approach this situation.
Your parents are catastrophising your father's illness. From what you've said, the doctors haven't said that this is a death sentence. It could be that it will shorten your dad's life (I hope that isn't the case), but right now he is alive and there are things that can be done to improve his situation.
Just not while he is at home.
Getting sleep and not having the stress of being the main caregivers would enable you and your mum to be more positive, more cheerful, and to think more clearly than at present. That would be good for both of you, as well as for your dad.
Your parents are worried that a care facility will take everything they've worked for. Yes, it might.
Isn't that what they saved for? For a rainy day? Well, right now it's bloody pouring!
Try and speak positively about your dad getting the help he needs in a facility and help your parents make plans for the future. Although, take it one step at a time.
You cannot be their future care plan. You have your own family; your husband needs you home and you need to be with him. You also need your own space and to take care of your own wellbeing.
Love your parents, but don't take on their negative and doom-laden thinking. It's not good for them and it's not good for you.
I'd give Mom and the two sisters 30 days notice that you can no longer assist after 30 days.
I'd hire (from an agency) caregivers to come in 4-6 hours every morning to assist Dad in getting cleaned up, linens changed, breakfast and dressed every morning. Most agencies have a 3 or 4 hour minimum. In my area they have a 3 hour minimum.
Here is the quandary. As long as you are there, giving in to your sisters whims, there is no need for them to step up and perform their half of the bargain.
Are you the favored child? That also might be playing into the dynamics.
If you are the least favored child, you have nothing to lose. Give them a 30-day ultimatum and walk out. Before you do that, ask yourself, if **** was to happen, would you feel guilty? If you would, you need to resolve those feelings before putting any plan in place. I would suggest a professional therapist to help you through this step.
If you are the favored child of either or both of your parents, then you will have to choose....you and your husband, or your parents. If you choose you or your husband/family, then you need to figure out what you are willing to do for your parents and implement and be accountable to what you do...This is pretty hard due to all the emotions you will be feeling and the what ifs. Again, a therapist can help you with the plan and support you as you implement the plan.
Forget about your sisters being capable of doing something. Forget about the broken promises, implied or otherwise. Accept whatever excuse they have (we all have different strengths in different areas). Work on you...decide your priority and decide how to implement so it works for you.
There is also the chance that once you embark on the "what I want to do" journey, the dynamics will change and your sisters will pitch in a little, or your Mom or Dad will beg you to stay, etc. Only you can decide how to handle the dynamics.
However, please be warned that this is just the first phase....and that further along the way, your sisters will realize what they committed to, and try to get out of their commitments. They showed it once before and it is probable that they will show it again. That is okay, just a new problem, same players and different circumstances.
The real situation is that caring for an elderly person, no matter what the issue is, is hard work and requires a lot of mental flexibility. The real question is how much you as a family can endure and whether and where can you get tolerable, acceptable, additional help. (BTW, using a non-immediate family caregiver has its own problems, so don't think that is the "do it and leave it" solution). Leaving him at any facility generally presents its own challenges too.
So you need to figure out what you can and will not do, and start working to those desires.
I'm sorry, hard to hear...however, you will learn a lot about yourself and others in this part of your life.
You may want to have a sit-down with your Mom and let her know that you cannot live with her and your Dad 24/7/365. Gently let her know that your sisters don't "have this", and you need to help your Mom look at hiring professional in-home help from an agency if she insists on having him home. Let her know you would go with her to an Estate attorney to discuss how to pay for such, and set up a trust to pay for his care should your Mom pass before him. The Estate attorney can be the rational, impartial person to discuss costs of in-home care vs facility care. Reassure her you will still visit and offer support, but can't continue with the way things are now. This is a very difficult adjustment for both your Mom & Dad. No one ever plans on this happenning in their golden years, and it is a devastating change. Your Dad feels less of a man and your Mom feels guilty for being unable to carry the load for him. Maybe hearing what the Estate attorney says, your Mom will either agree with getting outside help, or realize that your Dad can be cared for in a facility and she can be with him to keep him company from dawn till dusk if she desires. During her visits, she can focus on being a wife again and not caregiver. Any help she offers will hopefully feel like pampering him. It sounds like she won't be able to demand that your sisters pull their weight in caregiving. They probably wouldn't listen if she tried. I hope all works out for you, some how. God bless.
If you’ve truly factored in all of your sibling's advice, some of which can be good, and still found it not to be applicable or if it’s deeply hurtful to you, then you may just have to become the better person and let the drama go. Stop asking and discussing and waiting and hoping. Love and care for yourself enough to build up your very own equilibrium, plan and path on your own (with your husband and others who are willing to help you, of course.)
My heart used to race with anger at my non-involved siblings, one of whom often had awesome ideas how “we” could handle things, but who never spent more than a couple minutes (that is not a typo, I mean minutes) around my elderly mom to see if that plan made any sense. And it was always up to me to execute the multiple steps needed to make his amazing solution a reality.
I just needed him to roll up his sleeves and get on the scene to start making it better, but he won't. So I have let go of the wrangle. I'm busy making my way to the finish line with the woman who put me on this earth.
It’s a workout. A daily workout. It is as hard as the other tasks I do every day--which you do, too.
I hope you get a break soon or give yourself one, knowing you are doing your best already. We are not superhuman, just human.
You can simply leave. Just go home. It is not your burden to figure out who is going to be there when you are not.
Either your siblings will step up. Or they won't. Or your mother will have to decide on a plan that works for her. She may hire at-home help. She may find a facility where your father will be well cared for. She may try doing everything on her own. Until she can't any more.
You do not have to figure it out for her. Your first responsibility (just as your sisters) is Your home. Your job. Your husband. Your Self!
Your father is old and weak. He will only get older and weaker. You can not stop it. Let him and your mother have time to accept their new reality and give them the space to work it out on their own. You, spending 24 hours there, are not the solution. You and your sisters dividing the 24 hours with him is not the solution.
It is not sustainable long term, as you have discovered.