I need help - I'm so burned out, torn, and confused that I can't even make a decision. I've been caring for my dad post-stroke for 7 months. I have 2 brothers - one who doesn't give a crap about dad, the other is a controlling bully who wants the best for my dad and doesn't care if it is at my expense. This brother and I are trying to plan for dad's future.
I have been across the country, away from my home, husband, and job (I'm on disability post surgery) for most of these 7 months. I went home 3 times for a total of 16 days. My husband is emotionally abusive at times, and a great guy about to turn into an abusive guy all the other times. We were not on the best terms before all this happened, but we had a stable life together. My husband has never been supportive when it comes to situations where his needs are being neglected, so he has been enraged from day 1 of me flying to be with dad. Right now he is packing up my stuff, changing the locks, letting my exotic reptile collection die off, and telling me he's parking my car in a parking lot to get it towed. I am trapped here with the virus lockdown-nothing I can do-seeking a lawyer.
My dad has financial resources, so when he was released from the hospital in December, we put him in the best skilled nursing facility we could find. Dad is a 200# man, now with hemiplegia - I witnessed the caregivers almost drop him several times. CNAs by law here can't lift more than 35 lbs so no one wanted to try to get him up - PT/OT was a joke. Dad had dysphagia/a feeding tube, but the staff often almost accidentally fed him. The facility decided it was unsafe to transfer/shower dad, so he got only bed baths for a month before we decided he was going to die if we kept him in a facility. We flew him to a stroke rehab hospital and kept him there for 8 weeks. Now he is stronger and I am able to transfer him, toilet him, groom him, dress him, change diapers, etc, all by myself.
We hired 24 hour care when we returned from the stroke rehab hospital to dad's home 2 months ago. We realized we had the same problem as at the care facility - someone was going to drop / otherwise neglect him. Dad needs to live with a family member to watch over/assist his caregivers to prevent physical/financial harm coming to him.
The biggest problem with this is Dad moved away from all of us when he and mom divorced and he refuses to live near any of us now. So he wants to stay here - which means either a nursing home or 24/7 care with a family member supervising.
My brother is pressuring me to be the family member who gives up life (1 year, 2, 5 10?) to stay with dad. I have health issues and I am pretty shaky right now. If I keep doing this I am going to ruin my body. With the coronavirus outbreak, we discontinued the caregivers two months ago and I'm doing it all myself.
My brother is running the business and he stands to make a lot of money if I am the caregiver and he doesn't have to be. We have an aunt who may be willing to be a paid caregiver for dad, but we aren't sure we trust her judgment. My brother guilts me saying that if I stay here to care for dad I'll be financially set. But I want my job and life back. I am required to be back at work in two months or I'll lose my job. I've lost my marriage. I am 50 - how will I recover my life if I stay here?
My brother wants a house for us all to live in - and me to do all the work. I'm tired. I don't know how to even make a decision. I feel alone, anxious, trapped, and used. If I go home and leave dad in my aunt's care, I would feel guilty for leaving dad and I'd worry she can't care for him as well as I do. If I go home my support system is a lot less now that my husband is doing god knows what, I haven't talked to friends for months and I have to find a new place to live. I don't want to start a new life here, especially one that limits my living. Please tell me how you've coped with situations like this and made decisions. I need advice and hope.
a) I need help
b) I have health issues and am pretty shaky right now.
c) If I keep doing this I’m going to ruin my body
d) I’m burnt out, torn and confused
e) I don’t want to start a new life here, especially one that limits my living
Let me be real clear here. YOU HAVE ANSWERED YOUR OWN DILEMMA.
You are a human being with a brain, a heart, a soul, emotions, and her OWN life to live. You have permission to live your life. That right was given to you the day you were born & it doesn’t change just because others think it should.
Dad ... and what he wants ... he’ll adjust. And of course, nobody will care for him as well as you do, but please go back and re-read letters
”a” through “e.”
As for the husband? Sorry to say, he’s not worth your time. Move on. A person who really cared about you would be supporting you, not packing up your things. Buh-bye.
This has been going on for years........and now since April 2020 lying in bed after yet another fall.........brought to the hospital and hospitalized and then a SNF....and I feel the PT is too aggressive for her and I see no viable goal in sight. So I wanted this rehab stopped......she's bedridden...can't stand for more than a few seconds......who could see possibly be ever use a walker now? And these 2 person transfers from bed to a wheelchair..............in a woman who's skin is fragile............I didn't want it, and have had many bitter arguments with the SNF. The whole thing has been awful beyond my wildest dreams.
As I was reading your post about your mother’s fierce independence and the anguish that it has caused you, I thought that unless your mother is of unsound mind (and in many cases, even if she is!), she has the right to make decisions for her life - even if they’re bad ones. Even if she had allowed you to be with her and help her the way you wanted, the outcome may have been the same. You might find some peace in accepting that she has lived her life the way she wanted.
I felt that rehab at the SNF for a 94 year old woman with vascular dementia and can no longer stand for more than a few seconds with help and these two person transfers are enough.............my mother has poor skin integrity also as I witnessed myself......and was told by one of the medical assists to the nursing home doctor. I can't see this rehab anymore........and because the Palliative Care Nurse at the hospital first told me that my mom didn't qualify for hospice........as that is what I wanted.......my mom has ended up at rehab in a SNF..........I have had many arguments with them and it has been extreme anxiety and depression for me.
I'm seeing if I should get a second hospice evaluation for her........as I don't know how long the one from the doctor at the SNF will take to occur.
I'm filled with grief from hours on the phone, stonewalling from the SNF, arguments, a 94 year old mother who previous to all this for years insisted that I not move out and help her.
I'm ovehwhelmed.
I told her that she was not walking safely with a cane and begged for her to use a walker she has but never uses, or preferably just to get a wheelchair............she refused and accused me of not being encouraging to her and being glad that she's trying to walk with a cane. How could I be encouraging, when she's having so many falls?
I had to call EMT to get her up so many times. Since the second to last time, she was just lying in bed and hardly moving or drinking. I again slipped to the floor and I called EMT. She was dehydrated, atrophied and had hypotension when they lifted her. They took her to the ER where they found she had vascular dementia and a UTI. She was transferred to a SNF, and I only heard of this from a text from my cousin, as I was out to the vet for my cat that morning.
This has been a living nightmare for me.......I couldn't have imagined it in my worst nightmares. My mom was/is so stubborn, and now it's all come to this.
I told her to do something before all this........look into assisted living, home health care to help me, but she refused. And now with all her wanting to stay at home with just me to look after her, she's ended up in a SNF and I want her evaluated for hospice ASAP.
I feel so alone in all this. I'm resentful of my mom too for allowing things to progress this far, and not thinking of my welfare......not letting me move out and come for visits, it would have made her or myself arrange for some kind of care before all this.
Now I'm dealing with some very difficult people at the SNF, some who I can't get a long with. I wanted to get her out of there, but I kept getting stonewalling even when I found an assisted living facility with an enhanced license.......who originally said they could manage a person like mom.......but then after a call to the social worker at the SNF, all of a sudden my mom wasn't being considered and I really couldn't find out why.
My contacts with the social worker at the SNF have been awful..........I had mentioned hospice a couple of weeks ago and she said no.
It has been very difficult for me to talk with my mom's doctor at the SNF.....and finally I got a call from one of his assistants that it is in the works for my mom to be evaluated for hospice...........when when?....I had contacted another hospice agency but the person with the medical team at the SNF didn't want they're phone number.
All this has caused me incredible grief........with my mother, the SNF and the original hospitalization. I feel I cannot care for my cat and dog in the way I wanted for them, because so much of my time has been devoted to my mother.
I am very angry and resentful.
I've even had to hire a lawyer about getting mom on medicaid.
he needs to go into a nursing home for 24/7 care. You need to get back to work to support yourself and earn retirement income.
give up control and always ask yourself the question...is this in my best interests.
You need to do what is best for you and I think dep down you know what that is.If your dad refuses to move then either hire competent 24hr care or a suitable care facility.If your husband can't support during this difficult time then some decisions should be made because it seems he's doing just that.
Find housing if you do move back prior to and reclaim your life including your mental,physical,and career.Goodluck to you and I mean that whole heartedly.
I felt trapped as well, things do get better.
(50 is the new 30)
I found a free support group in my area (Googled it) because my friends were not equipped nor willing to handle my pooh.
I found at the support group, good resources available in my area and life changing corrective criticism. I was being too controlling. I worried no one cared as much as I did. No one would do as good a job as I did. My health was at risk. I HAD TO MAKE THE CHANGE. It's not easy for me to stand up for myself or to put myself first, but once I did....wohoo!!
My husband is a great guy too. He can be equally as childish with the expression of his emotions . The thing is, my husband will change his behavior (if it's hurting me) after we talk...we truly communicate. If he didn't, specially with the stupid pooh your husband is pulling, I would rather be alone then abused. You have to make your decision.
Take one issue at a time.
You need to physically go to a support group. The virus is making that hard for you but that doesn't mean you give up. See if they have a zoom meetings or a counselor. They understand that caregiving is a more difficult challenge because of a pandemic.
YOU ARE THE ONE THAT NEEDS CAREGIVING...TAKE GOOD CARE OF YOURSELF FIRST.
It's amazing how things tend to resolve once you focus on you.
My mantra "This girl can do it"
Find yours.
Do you have POA so that you can pay for things from dad's checking account?
If so, you might consider doing what I did when my wife was in a nursing more than ten years. Namely, I hired ladies to sit with her for two hours at the evening dinner hour and keep her company...I went for breakfast and lunch every day. I did not have to be with her 24/7 by any means...She was profoundly handicapped. Paralyzed on one side, unable to speak and yet very cheerful. I sometimes gave aids a twenty and it gave them incentive to look after my wife in special ways...(I might give each aid a twenty two or three times a year.) It is against the rules, but I'd say my wife insisted on it.
My observation is that you have extended yourself beyond your capabilities and your "engine" is like a car out of gas but still "running" slightly on "fumes." Despite anything dad or brother might say, you would be justified in spending much less time at the nursing home. Consider going for breakfast and lunch and hire someone to be with him at dinner....(Those who haven't experienced what it is like in virtually every nursing home, might say, well, the staff will take care of feeding him if needed, toileting assistance, and so on.) True, but NHs are chronically understaffed and there is only so much an overburdened nurse or CNA can do. I have observed times when one CNA was covering 15 rooms, each of which had two occupants. On a "good" day they might get lucky and have just ten rooms to cover.
I do not know how dad behaves when you are not there, even for a little while. That is possibly the long pole in the tent. But, rest assured that if you continue as you are now, many will say very nice things about you at your funeral. Again, God bless you.
Grace + Peace,
Bob
Recently she developed a UTI, and was just lying in bed and I screamed I had to call someone to see why she can't get up. She slipped off the bed and couldn't get up. I called 911 and they brought her to the hospital where she was admitted only to be transferred to a SNF for rehab.
I do not agree with the aggressive PT at the SNF........a 94 year old woman, with loss of skin integrity, being treated to try to stand, which she can't for more than a few seconds, having 2 people assist her from the bed to a wheelchair, attempts at using a walker when she can't stand!
I have had a lot of grief dealing with this nursing home. I spend hours each day trying to find alternatives, but everything is nixed. I am told my someone that my mother is to be evaluated for hospice, which is what I wanted in the first place.........but I don't know when, where, as unfortunately I was too overwhelmed and glad to think it was "in the works" to ask. I did find out it is not with a hospice network I found on my own that asked for a referral from the SNF, but the medical assistant didn't want that number.
Hours upon hours each day I have been doing this since April 20 about, and I am worn out. I have little pleasure in anything and don't spend the time with my young dog that she needs.
I was overwhelmed for years trying to live and help my mother with vascular dementia, and since she has had to go to a SNF things have become even worse, trying to deal with them.
I am resentful of my mother refusing extra help earlier, and leaving all this to me, and I dislike the facility she's at presently as some of the workers have extreme attitudes, and they seem to nix any other placement I want for my mom.
It is very waring to be at this hours a day, and sometimes I feel just walk away from it all...........I can't stand it anymore.
I hardly eat.......and when I do, I drive to fast food chains, and seems I can't be out of the house for any length, as waiting for phone calls, etc.
This is no decent way to live. I think if I don't change, it just might drive me crazy or kill me.
I can only speak of my experience, I chose to put off my life to take care of my mom full time with Vascular Dementia (after multiple Strokes). Money is a problem for us, there is not enough. I resigned from my job to take care of her...my choice, it was a tough one, but one that was done and now I have to deal with it.
I’m not married, however your husband the way you are describing him sounds very abusive (toxic relationship) maybe it’s best for you that he leaves. Why would you stay with someone that’s not supporting something you want to do, whether right or wrong? As I always heard, there are plenty of fish in the ocean!
You only have one Dad. Once this Pandemic is over you can hire help again and start to rebuild your life, it’s not impossible, you just need some emotional support.
Good luck in whatever you choose, be happy in the end, stay safe.
On another note, you cannot let animals suffer because of an a**hole husband who is acting childish and violent. Call an animal group that is supportive of your reptiles and ask them to go get them because they are not being cared for.
I miss my Cool High Mountain Desert Lake Life. Now I live in a Africa Hot climate I will never adjust to and live with the uncertainty of a life I thought I had planned out pretty well. It's taking me almost 18 months to stop listening to all the lies about my decision to take on this caretaking role for both my parents. I was not supported by my husband who blamed me for ruining our lives by quitting my high paying job with great benefits but because my home and work life was so stressful, it was an easy decisions for my provider to put me on disability. Oh but the stress of guilt and uncertainty almost got the better of me. I was a train wreck
One brother helps with the finances and we have the same sense of humor that can only be appreciated by people who see and understand our challenges. I have two other bothers that are totally off the hook and only call when prompted, sometimes, but with the same excuse " they don't answer their phone
I have 2 friends that are good listeners and not fixers? Only they know all the ugly stuff and I don't have to start from the beginning to relive it all. One is a close friend I've only known a few years and the other is my spiritual counsel. Too many friends, too many unsolicited answers.
Have you reached out to your local Hospice who usually have caregiver support groups? I'm amazed how just listening helped me find comfort and answers to what seem to be impossible tasks for my situation. You're so not alone and hearing others struggles and success will give you hope but most of all, tools to help you!
They didn't ask to be put in that situation & are fully dependent. It is cruel to them as well as you.
Having a husband that would do this would make my decision to leave him pretty easy. And taking care of those creatures would embolden me to care more for myself.
Can you get a neighbor or anyone to take those critters away?
Please consider this - your brother stands to make a lot of money - if YOU are willing to give up YOUR life for a dad who moved away from you and your family. Ask yourself if maybe you are looking for an escape from an unhappy marriage? I'm not being harsh, I understand. Your dad could live for years and caring for him WILL affect your physical health and it's already affecting your mental health. You are being taken advantage of. You need to make a decision - to go or stay - and don't take it lightly. Care giving will change you and takes a toll that you need to be aware of. Read the threads in this forum.
Your brother can place your dad. You can help find a place for him. There are good facilities out there. Yes, even now, with the virus. As far as dropping your dad, facilities have lifts to help move people and are very familiar with this type of need.
I am so sorry you're facing this. You are a loving, compassionate person and if you don't make a decision based upon what YOU want and what's best for you, you may be living with regrets for a long time to come.
PS Should you decide to stay, you need legal advice to protect your future. Very important!
I really feel for you. Not knowing your personality, I can only tell you what I do when life comes bearing down on you hellbent on breaking you.
Slice things out of your life. All of us carry things we don’t actually need, or responsibilities we put on ourselves that are not actually our responsibility. So I ask myself — what here is unnecessary, harmful, unhelpful or otherwise rotten?
First, your marriage. Based on what you’ve written, you’re married to a horse’s a££. Slice him out. What you had may have been “stable,” but it was a stable pile of dung if it’s as unsupportive as you make it sound. If your partner in life can’t be there for you at your worst times — you don’t need that partner. He’s making life heavier/worse for you than if he didn’t exist at all. Whether or not he is actually doing those things, I’d get myself back right now to go get my car, my stuff, and drive right on back. That’s step one — he’s out.
Second: One brother doesn’t care, the other is up to something suspect, and you’re stuck with it all. The one who doesn’t care can go pound sand. Done. The one who is manipulating you appears to have some kind of control (financial or otherwise). Once you’re back with your things in tow, you need to sit down and figure out who has what and is entitled to what with Dad alive and with Dad dead in the future. In writing. I wouldn’t trust him....
Third - “perfect” care doesn’t exist, not without millions. I’m a big believer in caring for your parents but (1) it can’t kill you or else it’s a moot point. You get no awards losing your mind trying to provide perfect care. You retaining your life and sanity with imperfect care for your parent is much more preferable — can we agree on that?
If nursing homes are an option financially, start researching all of them. You need one that is clean, accessible to you from where you plan to live where you (and the suspicious brother) can oversee care. You’ll have to do your duty and your part — but anything beyond that is not your sole responsibility.
And floating atop all this is YOU.
What city/state (within reason) would you like to live in? Why? Doing what job, ideally? What makes you happy? And how much of this overlaps with where Dad can be? (Where he wants to be is secondary — and irrelevant — to where he *can* be for the two children to oversee his care.)
Find the middle ground here. I mean, you can’t move to Madrid to be a painter just because you’ve always dreamt of it with absolutely no talent in it, but Dad can’t keep you locked down (figuratively and literally at this point) just because he needs you when he’s clearly unable to care for himself. Go spend a few days in a hotel writing it out, thinking, crying, sleeping, binging on TV. Make a list.
But I’d start with putting your dad into a care facility. I wouldn’t pay a family member to care for him. It’s easier paying a stranger and dictating his quality of care. Sell his home, use his assets to help him and yourself to get settled to orient your new life around what you want and providing him care and the oversight required to get him the best care.
You can’t know what to do until you know what you WANT or wear you want to be headed. OK, you’re 50 — not better than 30 to start over but way better than 70. Nothing can be done about that. But use this tortuous time to rebuild the way YOU want without anyone dictating the terms.
And stop letting these men dictate how YOU live! You decide that and then THEY need to make adjustments in order to keep you in their lives in the capacity required.
But step one is pretty clear (to me): get rid of the waste of space you’re calling your husband....not on his terms, but yours. You’ve now been shown that when you need him, he’s not a help but an anchor hellbent on drowning you. Cut it off.
let your aunt help you, you cannot do it alone, people are being very selfish with you and that is part of your stress. Put it in gods hands that your aunt can learn.
I agonize every day about not taking my father out of the nursing home into my home but he’s 300 pounds and paralyzed and very angry and uncooperative. I don’t feel it’s fair to put my family at risk of having strangers who might bring Calvin into my house. I am 62 years old and at this point feel 80 since this pandemic started.
I’m sorry I can’t help you but I do empathize with you and I will pray for you and for others who are in your position. It is a very painful position to BN enough of your making. And it hurts when people take it advantage of you.They do it because you have a big heart. But it’s not really very fair
Call your local police department back home and report what your husband has threatened to do with your possessions and car. Report him to your local SPCA for animal abuse for the reptiles and if any have survived have them surrendered. Have the police accompany you to the family home to retrieve your possessions. I am not sure what the laws are in your state, but here I had to rights to 50% of everything we owned, as well as 50% of his debts (I had no debt).
I would expect that your brother that has nothing to do with Dad has put up boundaries. You need to go this too. Stop asking how high when Dad, hubs or brother tell you to jump.
You are not responsible for Dad's care, period. You are not responsible for doing your brother's bidding.
6 years ago, when I was 48 my life turned upside down. It had nothing to do with caring for parents, but let me tell you I had a complete mental breakdown, my marriage ended (this happened first), I had to go on medical leave, I discovered I could not trust my mother as far as I could throw her, my daughter had a drug overdose follow by 2 suicide attempts. All of this in 6 months. I was reeling. I did not think I would survive.
But I did, I decided that I could only focus on me, I got counseling, I made plans to go back to school and yesterday would have been my Uni graduation ceremony.
And just as I put my life back together you can too. But you must make yourself the focus, not Dad, not pets, not your hubby nor brothers.
Airlines are flying, trains are running as are busses. Get back in touch with your friends back home. Send a text or short email, pick up the phone and call. Call the woman's shelter or WAVAW organization and find out what resources are available to you in the short term.
Ask your friends who have gone through divorce who their lawyer was and who their ex had, would they hire them again? I did this when I got 2-3 good recommendations regarding one lawyer I called and booked an appointment, my 30 minutes free consultation ran for 1.5 hours.
Go back to work. Get settled in your new life as a single woman responsible for only you.
Forgive my bluntness...reading between the lines I can't help but get the feeling you went from an abusive childhood home into an abusive marriage. Unfortunately, for children that are abused by their parents, it becomes the norm. That you recognize your husband is abusive will be extremely helpful for the next steps I hope you will take.
You need way more help than you can get from an online forum. You need to think very seriously about seeking professional help for yourself so you can break this heartrending cycle you're stuck in. By all means, come here for venting and cheering, but we can't give you the kind of help you deserve. And make no mistake. You deserve way better than you're getting from any of the "men" in your life - husband, father and brother.
There are resources out there to help you, many at low/no cost. Once you reach out, there will be kind, professional people with the information and resources to help you.
For once you need to put yourself and your needs ahead of anyone else's, including your children... because if you continue on this path you will be teaching them that abuse is not only ok, but the norm. You don't want to set them up to continue in this cycle.
Please, please start this today. I won't lie and tell you it will be easy, but it will be worth it.
I wish you nothing but good things.
You should also have equipment to better help you and more safely care for your dad. A Sit To Stand or a Hoyer Lift would make transferring him so much easier. (since he has strength and can walk a Sit to Stand would probably be the easiest)
2. You should have a WRITTEN caregiver contract.
This should be detailed and you should have it for a limited time so the contract can be reviewed and changed if you continue with this JOB. The salary you get should be "legal" where taxes are taken out so it does not disrupt your SS quarters and so that you are not hit at the end of the year with taxes you have to pay. And the contract should allow for increased wages as or if he declines and needs more help. "Room and board" are NOT payment and are not your salary. And there should also be other caregivers that come in and relieve you. One person can not work 24/7/365. Besides that would not be legal either.
And this #3 probably should have been at #1 spot.
3. You need to talk to someone about YOU. Do you really want to return to a man that is "emotionally abusive" and I don't get this..."a great guy about to turn into an abusive guy all the other times." A "great guy" does not turn into an abusive one. Go home and get your car and drive back to your dads. (or have a friend get it and your stuff and drive it to you. ) This does not sound like a marriage that I wold want to stay in, it does not sound healthy. And I have to say when I read the "headline" on this post my first thought was that your primary responsibility once you are married is your family, your husband, your children but as I read on I no longer felt that way, your primary responsibility is to YOURSELF and if you have children to them. Staying in an abusive relationship is not healthy for you and not healthy for your children if you have any. (sounds like your brother is a lot like your husband if he is the bully you indicate..is your dad the same? )
Sorry probably should not have gone here....
Everyone has valid needs but compromise will be hard when dealing with strong personalities.
I would look for professional help, whether social worker or legal (both experienced in elder care) or personal counciling. You may need all this & more!
Agree with Gladinhere, start getting paid right now. Also get paid Aides in to help you & give you some time off. Then you can breathe & begin the process of change. It will be hard - but necessary.
Strength to you for this process.
Why aren't you the paid caregiver? Financially set? In home care is very expensive and you should be paid now. Wait until dad passes there may be nothing left. Then what?
There is nobody in this world that will be able to care for dad the way you do. Some of us actually convince ourselves of that. Get paid for what you are doing. Even one month will give you something so you can figure out where YOU want to go from here.
What's the job? Can you live comfortably on its income?
Your description of your husband does make me wonder why you would be so keen to return to your marriage. Realistically, have you felt this way for a long time, or has his response to the family crisis changed your perspective?
Again, if you don't mind my saying so, you do seem to have rather a lot of rather controlling people in your life: father (his way or the highway), brother (ditto), husband (ditto, with spiteful bits). What shape would YOU like to see the next 1-5 years taking?
Let's put you first, for a change. You need: gainful employment/an income; a secure home; boundaries that protect your physical, mental and emotional wellbeing. What do you need to do to get those in place FIRST? - then you can move on to what you can contribute to your father's care plan. Hint: not living with anyone who is in the habit of forcing decisions on you would be a good start.
You have allowed yourself or been bullied into the belief that you and only you can keep your father safe and well. To prove to yourself that this cannot be true, imagine that your disability or your stress levels or some unforeseen event take you out of the picture: what would happen? I'm sure that the quality of care you provide for him is excellent, and that is one advantage of your being present, but you yourself identify that there are other significant benefits - to him, and to your brother, but not at all to you. All you get out of it is relief from guilt, at the cost of all of your own interests.
Who doesn't trust your aunt's judgement, and about what? It strikes me that the key difference between her and you is her clear-headedness on the point of money.