How to cope when all the decisions are on you?

My wife is in an  assisted living dementure  unit which cost $10,000 per month. Believe me there no bargain for her care. They won't let m see her because of the virus, they had on patient get the virus already, and she also fell on her face in January braking 3 ribs and 3 bones in her spine. If you can please have an aid take care in your home. I am very Leary in letting her stay there the reasons  I described,

This as you can tell has stressed me out a great deal

You must have Stay at Home orders by now.

Put off any decisions, and confrontations until later, while Mom's wrist heals. Let her work it out with Kris.

You stay home.

Most families have this issue and breaks up many sibling relationships. Once a family caregiver is the dominant one(you), the rest of the family backs off of responsibilities , because they're tired of it or don't want to do it, knowing you will take care of things.

You must have the family convo with EVERYONE - even if they don't care or want to get involved. This all can't continue to be on your shoulders, else you fall over and drop. Prayers sent to you, Nancy.

No suggestion, just a commiseration I have the same, but I am 77. My husband's daughter says that I am just doing the "wifely" things and I shouldn't need help. grrr.

I had a similar situation and had the added worry of being disabled myself. The more care I provided for my mother, the sicker I became. She was refusing to have "strangers" come into her apartment to help her and she wouldn't even consider a life alert device. So I asked my mother's primary physician (who she likes and trusts) to talk to her and tell her that she could no longer live alone and that it was unfair of her to expect me to take care of her full-time. And that if she still insisted on living alone, then she HAD to have a life alert device. It really had an impact on her. Then I finally let my siblings know that I was worn out and if they didn't step up, I was going to leave and let them handle everything. If you're still resisting doing this, just remember that the stress of all this will eventually affect your health, especially your heart. (After the age of 50, women's hearts are more susceptible to heart problems because of the drop in levels of estrogen.) I didn't know any of this until I had a heart attack at the age of 51. Hope this helps.

If ‘all the decisions are on you’, just make those decisions. No guilt!

My parents were against having any 'outsider' coming in, but once they did, they were polite to them and I have had no problems. I have to make the decisions because I knew from the start that if I asked my siblings, they would find fault with everything ( despite not being the one who actually had to do the work) It's time for an understanding with the live in brother that unless he wants to quit his job and give a large amount of help, then an aide will be called in. Tell him if he doesn't lock up then he will be out of luck if something gets gone ( in fact a simple contract to that effect and have him sign it, so you can't be blamed ) That someone would not be willing to help or make decisions is something that I have dealt with and it makes me fighting mad - they have no problem telling other people what to do. Tell them put up or shut up, and get some help.

Nancy, I promised my Dad we would take him in our home. Little did we know we would end up thousands of miles away. The only sibling close to home was able to help out but she worked full time, had 4 kids, and was finishing her college degree with an absentee spouse who later divorced her. When I went to an attorney he gave this advice "When your Dad wanders in his vehicle and gets lost (he did all the time - many miles from home) tell your sister not to pick him up.

That is what happened, he was tested and since he had VA benefits he was put in a home. Even if we could devote full time care for him, we didn't have the resources physically, emotionally and mentally to assure his and our safety.

Decisions need to be made for our LO that are difficult. I was told to emotionally stand back and make the decisions best for your loved one. I know how you feel and how difficult it is. I might soon need to make a decision for both myself and my husband.

Doing the best does not mean you do not love them. Doing the best is because you love them. Bless you all caregivers out there. You've been given valuable ideas.

Someone once said to me (which I didn't understand at the beginning of this journey) - It is not up to the person/patient to decide when a change needs to be made - it is up to the caregiver only (not any other outside people). The caregiver can listen to everyone (patient, doctor, family members, friends), but it is ultimately up to the caregiver to make the decision - as difficult as it may be.

You are doing an amazing job! Kudos.

Now, to get to problem-solving. Make a list of all the things you are doing for your mom: housework, shopping, meals, mom's hygiene and toileting needs, all the socialization, and all the administration for appointments. Talk with a home health care agency about what their aides could do for those 35 hours a week to take pressure off of you. Yes, you will be the one who needs to create the plan of care and days/hours the aides will be working with the agency's management. Then, have a family discussion and kindly but firmly tell them that you are unable to provide all the care that mom needs.... and that you have contacted an agency to provide all mom's help and that your (mental and physical) health is starting to suffer. Let all family members know the days/hours the home health care aides will be there and what kinds of tasks they will complete.

For the first week or 2 while health aides are in mom's home, continue to be with your mom while the aides are doing their care - so you can answer questions. Slowly, start "going to do errands" to get mom used to being with the aides without your presence. Eventually, you can probably be there in the morning until aide arrives and leave for day until aide leaves.

Just wanted to send you a hug. You seem to know what to do, just are fearful of doing it...which is to stop being so available. I could never keep the schedule you have...I'd let her struggle and get to the point of conveying herself she needs help. Your health matters too. Although as PS, the locks are an excellent idea. I'm sorry to say my experience with the aides we had last summer was not positive. Oh, they could be very nice...but mom's bitchiness and lack of cooperation meshing with their total lack of initiative (i.e. I just want to be paid and I'd rather sit on my ass and chat rather than do something that would help you or your mother for your $$) made it so not worth the trouble. Only recently with the virus did I discover a full box of disposable gloves was missing and there was one if not two of them. Lesson learned. Also the locks on the door are an excellent plan. My pup can be reactive so she spends my work day in our room which is kept locked. So all the valuables are locked in here as well. Wishing you all the luck you need...

I am a home health aide. Been taking care of the elderly for more than 20 years. I have seen your situation more than I care to. Here is what happens when the home health aide show up ---- we are told to leave... and when they see we are not leaving, they start shouting at us... sometimes hitting us, or at least trying to. I have been hit in the back, and one time, literally being chased by my male client while he is trying to figure out how to work that toggle on his motorized chair his son just got working for him. (The son did not stick around to see if his dad could work this thing. PLEASE... DO NOT EVER PUT A DEMENTIA CLIENT ON A MOTORIZED CHAIR) First thing he did was run over his mentally ill wife's foot...(she is screaming) then ran into a desk which then came down on him then.... he started up a ramp into the dining room where one wheel went off the ramp. Then he put it into reverse where I had to jump out of the way and injured myself. My point in all of this... aides can only do so much too. Please remember that we are human beings. It is likely that when your loved one is treating you like that, they are NOT going to be any different with the aides.. many times worse with the aides. We also, many times, get accused of taking... yes, stealing and THAT puts us in a terrible position. Yes... I do believe there are aides that do steal but I am not one of them. I have found a LOT OF CASH in one patients linen closet and then phoned the POA. She had no idea. But... when we take patients such as your loved one we are putting our health on the line. When they get to where your mom is... they really need to go into a facility where there are several people who can help with your loved ones care BUT since this virus is making that impossible, you may try an aide. YOU NEVER KNOW. I have had some patients who FINALLY calm down and allow us to do some things for them--not everything you want or they need but... at least we can give others some respite care. Right now.. I have one lady who thinks "I walk on water". It may be that for the first few visits by the aide, the aide will just sit and talk with your mom but then, some patients do NOT like this. Won't know until they try. What does your mom like to do... games, reading, ? Make sure any aides know what these are so she can be ready to do these on that first visit. Any knowledge of interests.. hobbies would be very helpful. Does your mom like to cook/bake? What are her favorite foods? The aide can tell your mom that she can make those (Some aides have no idea how to cook/bake/clean.. so ask the home health agency for an aide that does these if that is what your mom needs) If your mom is modest OR is not cooperative with bathing right now... then don't have the aide do this or anything that your mom is adamant about NOT DOING right now. Best thing to do,..give your mom time to adjust to the aide .... the aide should explain to your mom everything she is going to do...not just go do stuff and NOT inform your mom. Aides are to treat clients with respect... BUT... aides are to be respected by the clients, too. It goes BOTH WAYS. I have had it where the client refuses to allow me to drink even water anywhere but the kitchen while I am cleaning up dog urine, feces and vomit off the living room, foyer and kitchen floors. This happened every day. This poor dog was so sick but the client refused to allow the dog to be checked/put down. This patient let me know she hated me and that I was NOT welcome in her home. I stayed for several months. I needed a job and I knew she needed help. I hope this helps. GOD bless and HUGE HUGS FROM ME.

Oh boy, this is familiar. Lots of points here.
1. You keep saying Nursing Home but maybe Assisted Living is a better option. Sounds like your Mom might be a fit there, more activities, more physical and mental opportunities.
2. A facility may still admit your mom if necessary. My mom's AL is admitting already scheduled move ins, that person will be quarantined for 2 weeks. My mom was recently admitted to rehab after a hospital stay so with adequate precautions it can be done.
3. Unfortunately you may have to wait for a serious injury that puts your mom into hospital and takes the choice out of her hands.
4. Is there someone else who can advise your Mom? Pastor, Doctor, friend or relative that has gone through this? Parents often don’t want to take advice from their kids. After Mom's Dr told her she should consider AL she was willing to go look at some options.

So start doing some research now so when the time comes you have a few options selected. Call and talk to the directors about their criteria for admittance. Check out reviews, ask social media for suggestions. I called a Place for Mom (this is not a plug) and got several good recommendations for the area we wanted her to live, as well as ideas on what to look for and questions to ask.

Get brochures and documents from some of the facilities to show your Mom, it's a scary decision to make, especially if she has lived in the same place for a long time. Stress that the places can do the cleaning, laundry, meals, etc. Some have mini-kitchens so she can prepare some of her own food.

Sounds like you can forget any help from your brothers so it’s up to you to make some unpopular decisions for all concerned. If you take them out of the equation and just consider what is best for YOU what would it be? What is the best solution for your mom? What would happen to your mom if you got sick?

BTW we sold Mom's house to pay for AL. It might be time to tell big bro it’s time to look for a new place to live.

When you do what is right for your mother, you will be doing the right thing. Do you have a POA or other documents that say you can make medical decisions? Your mom's doctor may be a good person to have weigh in on the decision and back you up as well. Because I have to make all the decisions for two parents, I've decided that the advantage is I don't have to check in with or get approval from other people. And because they aren't a part of the decision making process, they don't get to have any input or opinion afterward. Be well. You're making a difference!

mammadrama, I have been trying to get my competent 95 1/2 year old mother into a facility for months. She won’t go. The hospital can’t make her go, a social worker can’t make her go, even APS can’t make her go, neither can her primary care doctor. She refuses to have anyone come in her house because she is a hoarder. The hospital released her home on Monday. They know she lives alone. Nobody can make her go to a facility. She’s deteriorating quickly so I help her when I can and my son helps her. She’s doing worse mentally and physically. She couldn’t take call a bus at this point and go out shopping even if there was no corona virus. I do what I can, when she gets verbally abusive, I leave. I walk out the door. I don’t listen to her crap anymore. My son brings in her mail and garbage cans. She is always good to him and he can stay 5 minutes or 5 hours, or somewhere in between. But leaving her all alone in the house with nobody to help her is not an option.

Sounds like you have fed the beast without realizing it. Brother wont step up because he knows YOU will. Mom expects you to step up because YOU always have. Put your foot down with both of them. You are getting a home aide and that's that! You will have some freedom and they can quit using their distrust as an excuse. Otherwise, they will both PAY you for your time and you are VERY expensive. Time for you to set your boundaries and keep your sanity. You answered your own question. ALL decisions are on YOU, so make the right one and take back charge of your life. Good luck, you can do it.

You need to tell Mom she needs to use her insurance. You no longer can do everything for her. You are a senior just like her. You tire out.

You don't say Mom has Dementia. Is she up at 5:30 in the morning. If not, why go over?

I agree, you need to be firm and look them in the eye and tell them you are cutting back on your help. Not, I would like...its I am going to.

Sounds very much like my family dynamic until I ended it 4 months ago by moving mom into a care facility. I had to do it by having her discharged from a hospital directly to the facility. She was furious. She is still is furious but she is safe and cared for and I have my freedom again. It really all came down to me deciding what I could do and could not do anymore. Read about FOG (fear obligation guilt) and see if that is what is going on with you.
Even though moving your mom is out of the question right now, you can still start your research, find a social worker to help you (sounds like you will need one - I did), talk to a lawyer about what you can legally do if she won’t cooperate, and put a plan together. Try to involve your brother but if he isn’t able to help, forge ahead on your own.

I agree with Nursejess. You need to have a COME TO JESUS MEETING with your family. It won’t be fun.

I had a similar situation with two out of state , very stubborn parents who refused all help, except from me of course. I was the last surviving family member. Dealt with the whole train wreck for 6 years.

Finally moved mom to AL after a bad fall then moved dad in a few days later. It was pure screaming hell for awhile but I stuck to my guns. I couldn’t do it anymore. Was starting to wonder if I’d outlive my folks.

This may sound harsh, but Looking back I was probably better off not having my sibs around. They both had screwed up lives and would have just complicated things.

And if you don’t already have it try to get POA for mom. But she has to be basically competent for this. I had a strong durable POA which helped tremendously.

Some people need very precise directions and telling them to help more won't get you anywhere. Make a bullet point list of everything that you are doing. Now cross off everything that isn't essential, then highlight tasks that your brother should logically be taking on due to his proximity. Tell him these are the things that you can't do but still need to be done - put them on a calendar/daily planner.

In the long term your mother will need more care and if the rest of the family can't/won't step up then a move to a more supportive environment may need to take place - brother needs to be made aware that would terminate his cosy living arrangement. BTW, who has POA, please tell me it isn't older brother!

I think people have ideas in their heads about how they THINK things will be but reality is often much different.

I would have 2 conversations - one with the brother and one with the mother

I would not give them a choice - I would say- this is happening because I am not going to do this at all otherwise - I would suggest that before you get all bent out of shape about it that you see how it goes first. ( I would do home health care first).
You teach people how to treat you and this appears to be a boundary issue to me- you enforce your boundaries and they have no choice