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!
I tried hard to convince her he needed a SNF as did two different doctors there. She maintains he needs to be at home and because she's his wife, they listen to what she says. I've told her this is not sustainable for the long term; that he wound up back in the hospital because we're not doctors and he needs full-time medical care. That we've done all we can but this can't continue and things need to change. She honestly thinks he's just going to regain his strength and with the help of home health, get better soon. She's totally in denial as to how bad he is and refuses to hear it. My husband told me to ask her point blank if she wants him to die since she's not listening to anybody anywhere.
My youngest sister is out of the picture right now because her mother-in-law was sent home on hospice the other day and they gave her no more than one to two weeks, if that. The other one, I can't even go there right now because she and I kind of butted heads about him needing to be in a facility rather than at home. I am so tired of trying to carry the load for everybody everywhere.
I guess I just needed to vent. Thanks for listening.
So long as you are there helping, Mom will continue to insist he be home . Stop being the solution to this .
As a very wise social worker told me
“ Stop helping , Let them fail “. This will force a change .
You go home and you call Mom’s county Area Agency of Aging . Get them on a social worker’s radar . They may be able to get Mom to agree . They will keep checking on how it’s going , and intervene when needed.
I also like your husband’s idea of telling Mom she’s going to cause his death by not listening to the doctors.
No one , not your mother or your siblings can force you to stay there . Again , go home . Let the Agency of Aging monitor the situation . That’s the way to force a change .
An entire Vocabulary can change over Home Care for the Elderly., and some words eliminated all together., like "Emergency" (at age 80 plus).. Words like "Normalcy",, "Caregiver", and "Caretaker" either fly out the window or take on a whole new meaning.
Following my husbands 5th surgery , though I got sick over it prior to the operation , I was surprised to notice how really much easier things had become following the procedure and once Home again. Some things I just took in stride. I have always been grateful for whatever assistance we can gain from Home Care , even when it becomes less so. I was a much different Care Person by then than , as you describe yourself, when so new to it all.
I'm still doing much of what I've always done, over his care and Caretaker of our Home, but am surprised at how well things actually leveled out. I take things a day at a time and at times have the help from an adult child , living nearby.
Forget all the "Shoulds" and Manage the "Coulds". I'm sure you feel responsible for his Care in a way that is set on "rescuing" him from the Inevitable. That's not possible. Maybe cut out on some of the tasks you can either let go of, or assign to someone else. When you have moments to yourself, it shouldn't; be over being thankful you finally got to do the Laundry., or grocery shopping, housework, etc., which you can assign that to most anyone who is also capable., or Hire it done. When you have Moments to yourself, you could get some rest , or get a massage, or just get out of the House. Give yourself Permission to care for Yourself and to smile again and enjoy the rest of your Life that you Do have, with or without your parents .
You don't need to revert to "sleeping pills" or Therapy, but put your foot down , instead, over allowing some Quality in your Own Life. Do you really want to Allow these one or two persons in your Life to DO that to YOU ? Save the money over all the "Fix It's" out there and spend it on a nice wkend at a resort spa -one not necessarily too far from Home and save Time, Expense and Energy over travel. Get someone to help dad for a couple of days and Indulge Yourself !
(Or did the grand kids have Their sports that wkend? Make Yourself a Priority!)
I'm trying to remember advice given and respond. I will try to do better about replying to individual responses. But, my parents are 82 and 79 and have been totally independent up until now. Home health had a social worker call my mom to tell her about resources available to help and was supposed to mail her more info but she's yet to receive it. She's so afraid of somebody giving him Covid though, that she's only letting the home health people and members of our family come inside. They've always been paranoid and untrusting of strangers so I doubt she'll be open to hiring somebody to help her but I will talk to her about it when I go back.
She and I did talk about facilities again yesterday before I left but she's worried they will just transfer him to a nursing home if they can't help him. In a rehab he would get therapy five days a week but is only getting it two days now and that's not good, IMO. She doesn't think he would have access to medical care in a facility because he had nothing at the one he was in before and wound up back in the hospital. I've told her there have to be places with a doctor on duty, I'd think? I just really don't know how all of this works. As it is now, we can call home health and they'll send a nurse out but it can take up to an hour for somebody to come. And if it were a true emergency, we'd have to call an ambulance and who knows how long that would take? This was one of my main concerns with him going home - access to the medical care he'd need at home.
Somebody mentioned wills, they both had wills drawn up several years ago because they saw how one of my BILs acted when his dad died and he tried to take everything away from his mom and caused all kinds of problems for his family. My dad said then that there's no way he'd allow him to treat my mom that way so they went and updated their wills. They don't have a legal POA but she has put my name on all kinds of medical records now, giving me permission to talk to them, etc. Heck, I'm the main one home health talks to so I need to ask them what's available as far as help goes! I've got to remember to do that.
One of the therapists that came the other day told my mom that she knew how overwhelmed and tired we were and that she just want to tell her about a rehab facility she knew of and thought it might be worth checking into. My mom did and saw some bad reviews online and that was the end of that. I'm not giving up on trying to convince her that he needs to go into one if she wants him to have a chance of getting any better. And I'm hoping that both of my sisters have now seen that he's not getting any better; how hard this is; and how there's no way we can continue to do this for months or years on end so maybe they'll agree he needs to go into a rehab facility. We are not capable of giving him the medical care he needs no matter how hard we try. It's just that simple...
Thanks so much again for all of your responses. I really do read each and every one and appreciate all of them!
I saw bad reviews on several places but it was usually family who had expectations way beyond what was reasonable. The best thing is to visit yourself. Most will invite you during lunch so you can taste the food. Watch the residents…are they happy?
Seriously, hopefully a solution can be found that will be of benefit to all of you. Have you checked into seeing if your state have assistance programs that will keep your loved ones out of a facility?
Your sister's need to shut up and show up and MORE than once a week.
You need and deserve a break. You need to have some normalcy. You need to see a therapist to help you work through all this trauma. I have one and it has helped be enormously to cope.
I take care of my 87 year old father. I am the only one in the state that can. I finally got my sister and brother-in-law to step up and help me. They live out of state but are able to come on weekends. Not every weekend. Just enough to keep me sane.
Please take care of yourself first. I know that sounds selfish but it's not. I have had to learn how to do this myself. I would always blame myself for not being good enough. Feeling I wasn't doing enough. Etc. You are worth it! I am with you my caregiver sister! :)
There is no need to justify your exhaustion--caregiving is overwhelming. It sounds as though there are three of you siblings. If your parents' care were to be divided three ways, each of you could take 1/3 of the schedule. Those who cannot or will not take their 1/3, can hire outside help to cover their part of the schedule.
talk to your sisters and ask to raise funds in hiring caregiver to help mom to give you a break . At same time apply for nursing home.
Another thing is to create a sign up sheet/ calendar for your sisters to volunteer to watch dad at least once a week. Give it to them via group email
Apple watch with app to track breathing patterns? My coworker tracks her father’s blood sugar using Apple watch remotely.
Ask local church for volunteers
One day, they will be elderly and in need of care themselves; they need to save their money for their own rainy day.
ok/ so your family are taking advantage of you
their life is no more important than yours
time to arrange for relative to be in care
the argument is your siblings are not pulling their weight and you have been left coping which is not acceptable
you deserve a life as well
dont worry about what they think - they are selfishly looking after themselves and not concerned about your health or the stress you are under
I wound seek legal advice as I think you may get throwback on this
you agreed relative at home because you were under the impression everyone would pull their weight and help but all you have is excuses from them and it’s now affecting your health
tell them if you want your doctor says your stress levels are far too high and you have been advised to release care, Altho I really don’t think they warrant an explanation
looking after someone is an enormous task - unless you get regular help and that would mean them agreeing legally days of the week they do their share then relative must go into care as you can’t cope anymore.
do it before you get seriously ill
you are already exhausted mentally and physically - next is physical illness
maybe very serious
best wishes
You deserve better treatment. You cannot let your health be torn down and your life taken away. I know.
I would sit everyone down and tell them this is not working. Remind them that you were never in favor of this from the start. Give them 30 days to solve this and put him in a facility where he can get the treatment he needs. It is not fair to him. You can’t give him therapy. He needs help you are not qualified to give.
Seek help from A Place for Mom to find a good placement.
DO NOT FEEL GUILTY. You have been the good daughter.
This past summer, I made the difficult decision to leave a full-time job I loved to dedicate myself to his care. While it was the right choice, the transition has been overwhelming. Thankfully, I’ve since taken on a part-time job, which has given me a bit of balance.
To prioritize my own well-being, I make a point to have lunch with friends at least twice a week, maintain an exercise routine, and play golf—a passion that helps me clear my mind and recharge. Despite these efforts, caregiving is exhausting work. If you’re in a similar situation, let me remind you: take care of yourself, too. You can’t pour from an empty cup.
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.
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 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.
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.
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.
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.
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.
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...
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.