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I have been caregiver for my mother, age 88 for plus six years. All doctor appointments, medical decisions, setting up of services (med alert device), etc. Mom will not listen and take advice from PT, RNs and refuses to use the walker consistently. (I am 64, retired. One grown responsible son, 500 miles away. Husband, age 66, retired.)


In the past, I tried to make mom “happy,” took her on outings, did housework, laundry, yard work. Mom also lived with me and husband (his offer) for 22 months. This was a complete disaster despite all my efforts. Currently, mom is back in her house. My 69 yr old brother, Kris lives with her. (He is divorced. Must be at work at 6am, so I arrive at house at 5am) He stuffs his feelings, won’t make the simplest decision re: mom, and refuses to retire. Younger brother and s-in-l will not help at all. Mom resists 99% of my efforts despite me calmly (most of the time) trying to explain I love her, etc. and don’t want her falling again.


When there is an urgent type situation (ex. Mom falling at 10:45 pm, brother calling and saying he doesn’t know what to do, me having to tell him twice to call 911) I am expected to take over all matters involved.


I have mentioned recently that it is getting time to either put mom in a nursing home (she is becoming weaker and unsteady on feet) or have a home health aide come 2-3 times per week, free through her insurance up to 35 hr/wk. I would come 2 days. (BTW: Due to the coronavirus a nursing home is out of the question right now.) Of course this is met with resistance from mom and older brother, Kris. I have tried to be honest in my feelings and stress level. This is something “new” as we were taught to stuff our thoughts and feelings. Kris doesn’t face problems, he ignores them. Mom doesn’t want a stranger in the house.



I realize I have to use tough love. Plus, I know I am the only one who can solve the problem. (No one else will make a decision.). I have told Kris perhaps he should put a lock on his area downstairs so the aide couldn’t go in there. (He trusts few people.). I suggested he put a lock on one of mom’s upstairs bedrooms and put valuables (there aren’t any) in there. He has done neither. I am very angry at mom (for putting me in this situation and being so uncooperative), Kris (his lack of action, etc.) and younger brother (for refusing to be involved). Before 3/23/20, I was coming twice/week to get mom out and help. Since 3/23, her latest fall (broke dominant wrist) I have been here too much: M-F, 5am - 4:30 pm due to Kris always having some errand to run after work. I am burnt out already.


Suggestions please.
Nancy

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
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Frances73 Apr 11, 2020
I hired Visiting Angels to help my parents. They liked some of the aids, disliked others, and ordered one to never return. You have to work with the company to find a good fit and be flexible in your expectations. This is not a highly paid service and many of the aids are not well educated, come from disadvantaged backgrounds, or are immigrants. We had to work through some deeply ingrained prejudices of my parents but eventually found several aids they trusted. I made a point of meeting each aid, introduced myself and gave them my phone number so they could contact me with concerns.
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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.
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Reply to MammaDrama
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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.
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Reply to Samsung137
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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.
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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.
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Frances73 Apr 11, 2020
I had a tough confrontation with my Dad after his 2nd stroke. I bluntly told them both (In their late 80’s) that I was going to hire a company to come in and help with the cleaning, cooking, and physical care for dad. I told them that I was not going to risk my own health when they had the funds to pay someone younger and healthier to do that.
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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.
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Reply to LexiPexi
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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!
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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.
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Reply to Taarna
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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.
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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.
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gdaughter Apr 11, 2020
Bless the good aides. I so feel for you as well. GOOD people are out there but a rarity. Also a scary time for aides with the virus because it's as if every patient the aide has been in contact with comes with them to their next patient...scary time for all of us...
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