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!
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 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.
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
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.
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.
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! :)
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?
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?
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!)