Feeling Frustrated | Caregiver Action Network


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I have been caring for my mother since october 2013. She has been placed on hospice at that time for copd. I have moved from my home in the south central us to southern california to take care of her. I quit my job, left my wife at home and we have given up on medical support to help her have a baby. I have given up my whole life, I have seen my wife twice since I have moved to california. I have 2 brothers and a sister who all live in california, my 2 brothers could not handle strain of caring for my mother, my sister can only come out periodically since she likes to babysit her grandchildren. Despite their lack of involvement they complain and they complain and they complain. "mom should take less morphine, she should be up more, she needs to excercise, she should walk more" She is dying and I believe this week starting to go into active dying, (she has pnemonia) she uses all of her strength, and her oxygen on breathing and at this point excercising is going to take the oxygen away from her brain and muscles used to breath (rn has told me this) my family has agreed to provide me a salary of just over $100 a day. They are driving me nuts. I would love to hear other peoples horror stories about dealing with their families so I may gain insight and feel less alone.

Also I give medication as
Also I give medication as ordered, mom doesnt want to be up more, mom shouldn't walk much, her gait is unsteady, she gets weak has lost alot of muscle mass. We have a outside the family POA (thank god) I am dragging him into it more now, we are currently in the process of getting hospice update paperwork that shows that my brother is not POA. Everytime my sister gives me a couple days away I come back and my mom has declined further since my sister is a big source of the walking, less medicine talk she forces these things upon my mom.
I tire of their bull carp. I
I tire of their bull carp. I had a cna and a cma in the state in which I lived. I have been taught how to properly care for patients and properly give medication I gave up my licences to work for a financial institution almost a decade ago and worked for same job until October.
I would not allow your sister
I would not allow your sister to care for your mother if she refuses to give the meds required for her mother to be comfortable and refuses to keep to the physical restrictions your mother has...I'd tell her if she doesn't follow the care plan then she will not come back to care for mother alone...and trust me ...you can call Social services and tell them what's going on and they will fix it. Your a mandated reporter...we all as caregivers are...even if its family...and if not put to a stop couldblead you responsible for anything your sister may ne causing. Your doing a noble thing.. Your sibilings probably wouldnt care for her as needed anyhow...so maybe its best.? This is common amongst the children when mom and dad grow old. Just dont depende or even remember that you have siblings when carijg for your mother...there isnt point to It anyway..its not gonna change much so enjoying the time you have with her ..they are the ones missing out on the last years of her liffe. .youll get the reward not them. Smile and forget about what they arnt doing and feel sorry for people with such lack of care for their mother. :) good luck
yes I know what u are going
yes I know what u are going through I have 4 sisters who only will help out with our 86 year old mom at the point I start screaming and yelling that I need help well that lasts for about 2 weeks and then my sisters disappear I clean cook and take care of mom 7 days a week I looked into programs to get help and mom does not qualify and private pay is way too much money they would put mom in a nursing home just to not hear me bitch at them I cant put my precious mother in a nursing home my husband and have no life he lives at are home and works and I live here at moms
So sorry you to hear this! I
So sorry you to hear this! I can totally relate though. My husband and I have been caregivers to his mom who is 59 and has had Alzheimer's for 10 years now. We have put our lives on hold to care for her in her home. She has 6 sisters who all live close who don't help us. For years we have begged for help and 1 used to take her 1 time a month for 24 hours. One helps with banking and that's about it. We dont even ask for help any more. We have resorted to have a live in caregiver to help is which comes with a pretty price and we still can't do things that most couples can do... like go on vacation. Shoot we can't be far from the house because the caregiver can't handle his mom on her own for long periods of time. I remember 1 time a few years ago my husband called his Aunt for help to come relieve us for a few hours, he was so frustrated and told her he felt like commiting suicide. Her repsonse was I'm sorry but I have plans to go to the library so I can't help you! REALLY!!! We would love to start a family as I am 32 and he is 37... the clocks a tickin! Lol. But... I just have to trust God. I know he has a plan for us. Its hard, really hard.. lots of frustration, anger, and pure exhaustion but it will all work out in the end. We both love his mom very much and I believe because of our care she has already exceeded the life expectancy of an avg. person with early onset Alzheimer's. When we look back at these years we will have no regrets about the love and care she recieved from us. She can't really talk much anymore but she can't still say I love you and those 3 little words are what keeps us going. God Bless you for what you are doing and hang in there.
My siblings visit but don't
My siblings visit but don't do anything to help with PT/OT - even though they told rehab place they would - they come (without notice) and talk and leave (after about an hour) and do not offer anything in way of helping care for her- within 2 week's time I packed everything into storage and moved half way across the country as sibling 5 miles away wouldn't lift a finger except to call and say I was responsible for everything (all bills, etc.) - they were also told items relative to her situation that they 'neglected' to tell me. Am working full time; handling appts and handling everything to do with living (cooking, laundry, meds, mowing, groceries, etc). We're looking into getting someone to come in so I can take a couple hours off and do something for me. Any suggestions?
I took care of both my mother
I took care of both my mother and my aunt at the same time. I'm an only child and an only niece. I had it a little easier than you in that both ladies lived in the same city. I did move them to the same apartment complex right across from each other and eventually after my mom passed away I moved my aunt to an assisted living. There's no reason that you alone should give up everything to care for your mom. My suggestion is to insist that you be allowed to move her to where you and your wife live. Arrange to have her cared for in your home or a decent nursing home in your area. If your siblings don't like that idea let them know that this is how it's going to have to be if they expect you to do all the work and they can also help pay for nursing care since they don't want to help take care of her. shame on them for not being available to her and you.
Steelarmor4Blue's picture
Same on them

Shame on them for not taking care of your mother with you. I'm sorry to hear that you can't see your wife more often. I know that without my Rocky (serious boyfriend) I would be having serious crying sessions, and bursts of anger towards my brother who has OCD. I couldn't deal without Victor my cousin who entertains both of us. I'm sorry that you mom's health's declining as well. I understand what a family member is like when they don't seem to understand the disorder or disease and just want extremes of the person when they don't understand it then they get frustrated at you the caregiver because it seems like you aren't caring right.