I moved 600 miles to live with my aging mom...and have been faithful to her for almost two intense years with a dozen serious hospital stays, an inpatient rehab stay, and now bed-bound care for several months. We have hired 24 nurse's aides to care for her but I am still going crazy with all the perimeter care she needs. I have 3 siblings helping but two live out of state. The one living near by has serious mental health issues that cause me unbelievable stress as she sabotages the care I give, the planning I do, the decisions I make. I am about to snap. I keep trying to tell my two rational siblings I can't do this any longer; nursing home isn't an option is what I'm told......and the demands continue. I am trying to learn about setting boundaries So I don't get bitter and hateful............but nothing seems to regenerate me any more. I miss my old life - my husband and I see each other about 3 times a year as traveling is expensive and he has limited time away from work. I work part - time outside of the nearly full time work with my mom, but can barely function at work. The job is mundane and way below my training level, strategically chosen so I had the energy to continue caring for my mom, as well as so I can earn some money to pay bills and the mortgage on my house (husband lives in it still; can't join me due to work). All I can say is now I feel FORCED into this role; it has been ok - no, really a gift - to have the time with my mom, but at some point it is ridiculous to upkeep her huge home (my dad is dead; they made no downsizing efforts at all)..........and to do her care, direct her nurse's aide team, try to lead my own life, etc. I am starting to feel like I deserve to get paid for caring for her. I feel really guilty about that as one of the siblings (mental health one) is the one we have to watch about misuse of my mom's money. I have tried and tried to talk with my siblings...but they tell me it's not about my needs, but about mom's. Easy to say when they have their own homes to go to but I have to stay in the house with my mom that has constant people and disruptions in it. I can't eat half the time. I need my space, privacy, a day without all the nagging and stuff to do...it's not my home. It's my mom. I want to be her daughter and am left feeling like her parent, as well as left to feel guilty and shamed by caregivers who demand stuff that I just can't do, or am too spent and burned out to do (nothing that impedes my mother's safety/health). I feel like I am going to have a nervous break down and no one will listen. I have a chronic health problem that is invisible; it makes my energy low and I know that..............and at some point I want to ask why my mom's needs and demands are always to come first? I know it's our family system/dynamics but I just can't do this much longer. I don't know what to do. I can't abandon her. But all i want to do is leave.
You can tell them that you had your turn as caregiver, but now it's their turn. You are moving home in a month. Send them the schedule of caregivers, doctors' appointments, bills for Depends, so they have an idea of what you are dealing with.
Tell them you will be glad to come back once a year for two weeks to give them a break, but you need to live at home with your husband. Can't he develop some mild, unspecified but worrying condition that requires your presence?
So sorry. You love your mother, but you are sacrificing your life for the comfort of her and your sisters.
Bottom line is hubby and I see no end to this situation and we have felt very trapped. Have gone through so many different feelings and emotions over the past couple of years and thankfully most of those are resolved but it does seem like this will not ever end. We're drained, emotionally, physically and spiritually but somehow, with God's help our strength seems to be renewed on a daily basis. But it just seems it will never end.
I agree with sunflo, if you could just move your Mom so that you could be with your husband. Even if he isn't able to actively help you, just his presence in your life would provide emotional support.
Siblings that aren't in the middle of caregiving just don't get it and are quick to Monday morning quarterback. It's not entirely their fault, they just don't get it.
If you have a chronic underlying health problem (I do understand that as well) it is almost double the trouble because that concern is always nagging in the background and is sapping your strength. You need to make sure that you get as much rest as you can between caregiving and job. Don't feel guilty about ignoring non-essential or non-life threatening things. Make sure you get rest and take time for yourself to have a mental break when one of her other caregivers is around.
Set a boundary. Mine is if my Mom becomes bedridden, I physically cannot take care of her at that point and she would have to be placed.
Hope this helps. Just know that you are not alone.
It is obvious that you are burnt out. I'm sure, you, like many others in your situation set out to do the right thing but couldn't envision how the situation will worsen, become more demanding meeting loved ones needs, or how long these caregiving responsibilities can go on.
Bed bound care - what is dr's prognosis? It may be that NH or hospice care is warranted for mom. This might be best solution; as she gets the care she needs, you use her currently monthly income, insurance, investments/savings, proceeds from the sale of the property, etc. to fund her residential care in new facility. You should be able to find a very nice care facility for mom depending on current finances and then when the funds run out, they can't discharge her and her remaining stay would be covered by medicare (that is my understanding from here in NC facilities).
Have you considered having her medically transported back to your home state? You could do all you are doing now in your locale -- whether that be hiring full time nursing care in your home, or having her in AL or NH. This way at least you could regain your life.
Your sibs would have to understand or offer an alternative where they take over care responsibilities. They probably like things the way they are because you bear the brunt of the responsibilities, manage mom's care and this saves/preserves much of mom's funds.
I support whatever you choose. If it were me, I would rationalize that the situation has changed; mom's care requires increased skilled care which you can't provide on your own and that this is taking a toll on your physical and emotional health. There is no crime in feeling this way; you aren't letting mom down. Situations change, especially with the elderly and the care they require (and we all know, it gets worse not better). So if you need, give yourself permission to make other arrangements so that you won't be resentful of mom or family and can spend your last years being the daughter you want to be for mom and spending quality time without the worry and rigors of day-to-day care responsibilities.
Its too bad about the big house and not downsizing. My mom and dad did same, mom is widow living all by herself and its a burden for her to try to manage the house, repairs, lawn, etc. and she refuses to let go "because all her memories of my father are there". My father did a diservice by not moving them or having discussion with her that "it was okay for her to move closer to family" once he passed. Now she thinks she has to keep the house up to honor his wishes. Its awful.