Past breaking point.

Started by

Hi there, and I just wanna say first off that even just typing everything gives some kind of relief. I am glad that there are sites like this.
My mother has Multiple Sclerosis, and more recently, dementia. She has been in a chair for the majority of my life, and requires total assistance in transferring, standing, bathing, etc. The really tough part is her dementia. She is not able to retain much of anything we tell her anymore, and she gets very aggressive, physically and verbally. I am unable to have conversations I'd like to with my mother, because she will end up hysterical. I am only 20 years old and have yet to further my education/my life because no one will take care of my mother. My father works full time and makes it plenty clear that he has enough on his hands when it comes to helping out my mother. For almost 10 years now, we have been receiving help at home through different agencies. Unfortunately we can never find a stable care giver. Many people have come through our home and stolen from my mother, taken advantage of her, just up and left, or not done even a thing. I have started working at an agency so I could pick up a few days to 'officially care' for my mother. Since the most recent caregiver left about two weeks ago, without ANY notice (to this day), I have been working solely for m mother. I am so frustrated, and I believe that a family member can not be the only care in these types of situations. I have contacted everyone in the agency, who has only left me with "we'll try to find someone else" with no inkling of any time, or if this person is even a good fit for my mother. I feel like a terrible person because I seem to quickly nowadays get impatient easily. I am doing everything in this house, and I am left with no life. I love my mother very much, but working for her everyday has pushed me past my breaking point. I have spent the last years just trying not to end each night in tears. I would love to go to college and further my life, but no one will care for my mother. I am completely out of ideas and I just feel hopeless at this point.
Once again, major thanks for just a place like this even to vent.

7 Comments

Oh freckle that is so sad. Have you or your dad discussed AL or a NH sounds like she needs alot of care i cant imagine how hard it is for her to have MS and dementia. Its hard but you do have your life to think about aswell such a shame that you cant get the right carers in to help i feel so sorry for you but you need to talk to someone maybe her doc? your dad needs to sit down with you and discuss options. Im sure your mum wouldnt want you to be so unhappy im 48 and finding this hard on my own you need to think about the best care for your mum now so you can go to college and have some sort of a life. Let us know if you find a solution. We all get impatient and thats nothing to feel guilty about we are only human and can only do so much.
I hope you find a solution soon and get to go to college, speak to your dad and see if maybe its time for a good NH as her health issues are very hard to cope with on your own.
freckle, these are critical years in your lives. Right now is when you should be building your career and finding your future mate. It is not a time for you to be caught up in full-time caregiving. You need to tell dad that if you lose these years that you will never be able to recapture them -- that you will be glad to help with your mother, but you need to build your own life.

I know your dad is simply trying to hold things together, but what is going on is not working. He needs to explore other options that will be dependable and will allow you to build a life. You are too young to be a full-time caregiver.
Freckle you poor girl.. Please sit down with your Dad and tell him everything you said here..My heart aches for you.
My failure each day of late is loss of patience for the constant confusion and disorientation from my husband of 22 yrs for whom I am full time caregiver. He had an accident almost 5 years ago that resulted in his sustaining a severe TBI and he lost approx 25 yrs of memory-/our entire life together. He has also been diagnosed with dementia 3 years ago. I have no help and am isolated in our home where I care for him. He is functional in that he can walk and dress himself (I must lay out his clothes assist), can feed himself (but cannot prepare anything--I prepare his plate and set up at table), can go to bathroom himself (but is poor with hygiene and dribbles urine so I keep a Depends on him and must clean up around toilet constantly). But he forgets relationships (confuses grandchildren for nieces/nephews or might not always know sons--says it's a 'buddy' or forgets that his parents passed 20+ yrs ago and asks me all the time where one or the other is or that he wants to call mother to come get him, etc. he disagrees with me all the time and when I remind him of his accident and TBI or dementia, he yells at me thAt I am the one with the brain injury or such. He cusses at me frequently and in presence of grandchildren when he never would have used such language before. Needless to say, we have no marriage anymore. He does t even know we are married or sometimes who I am. But then he might tell me a hundred times a day he loves me--repeating so often in very short intervals that I think I will lose my mind, let alone all patience. I feel all I do is go thru daily routine of meals, arguing, telling him I am his wife who had to retire early last year to stay home and provide the 24/7 care and supervision he requires. He doesn't think he needs supervision. He thinks he works. He doesn't know this is our home. Every day he asks if he's spending the night here or if I'm going to. He sits for several hours a day going thru a tote bin of golf magazines or sale catalogs that he tears pages out of with pictures of expensive watches and argues that he needs to leave to go to 'that other building' or wherever to get these items that he says are waiting for him. Or he circles every item in a catalog of sporting clothes or boots saying those are items he is buying. He has no attention span for TV programs and confuses what is on TV with our life. It's just constant confusion for about 12 hrs a day and then he gets up a couple times at night and wanders and wants cookies and milk or anything sweet --eating much ore than he should. I manage to get him to get into shower now only about once a week because he says he has already had one and dislikes it now. He is much bigger than me and when I give him a shower, I have him wet and wash his hair while I scrub his body down so he can rinse and get out. He's not steady so I worry about his falling. He uses to be meticulous about his appearance and grooming but now he is the opposite. He won't let me clean up his facial hair (that he never had before) and refuses to get a hair cut. I put the paste on the toothbrush for him and watch him brush but he doesn't do a good job anymore and recent checkup showed he has 3 cavities needing filled as a result of his now poor dental hygiene. There is no joy in my life except for the moments I can catch with grandchildren before he gets aggravated at them. That makes me angry because he loved his grandchildren so much and would have never raised his voice at them before. I feel so cheated that being 9 yrs his junior (he's 65 and I am 56) I have had no life partner now for nearly 5 years. But then I feel guilty for feeling that way. But it's as if both of our lives ended the day of his accident. I am no longer able to be a wife or a good Mammaw and enjoy those roles like I used to. I HAVE no life. But I think of those for better or worse vows we took. More than anything, i miss the companionship and love of a husband.
i dont think a young life should be sacrificed to save one with no future. thats a waste of human resources.
been reading a b**chin book of frontier america , written on the trail in real time. elder indians would be comforted and left behind for the elements to reclaim.
your mom has been given a lot, she may have to deal with NH in the interest of fairness..
NH -- lovingly tucked into a snow bank --- far apart.
Freckle, I have to agree with those who suggested that you sit down with your dad and have a heart to heart. My daughter is 20 years old and I can't hardly bear the thought of her having to care for me if I were in a wheelchair because of illness and my mind rotting from dementia. I would kill myself first before I let my 20 year old daughter care for me like that.

You need a life. You've done good by your mom (and your dad who also benefits from all of your work and dedication) but it's time to leave the nest and create your own life. You're at the age when it's appropriate to do this. If you continue to care for your mom, maybe for years, you will find yourself lost and alone and terrified because you won't know how to function on your own once your mom is gone. All you will know is caregiving and no one cares about that on a resume.

You are an adult and dad will have to deal with it if you decide to carve out a life for yourself. Doing this does not make you selfish, do not let it make you feel guilty. Do not let your father make you feel guilty. You have done your job as a dutiful, loving daughter. That your dad allows you to care for your mom day in and day out makes me think he is taking advantage of you. He *should* be encouraging you to get out there and live your own life, not stay in the house day after day caring for your mother. But with you doing all the heavy lifting your dad doesn't have to do a thing. It's really not his problem as long as he has you to do the job. And regardless of what your dad may say you have every right to walk away. You're an adult and no one can force you to do this. I hope it doesn't come down to that, I hope your dad encourages you and doesn't guilt you but even if he does fling the guilt around know that you are doing what's best for you. It doesn't mean you don't love your mom. Of course you do. And whatever happens after you make the decision to go on with your life you will always be able to see your mom. But get out now while you still can, honey. Since your my daughter's age I actually get tears in my eyes when I think about her having to care for me the way you've lovingly cared for your mom. I would never want to rob my daughter of this phase of her life. I'd sooner die first.

Talk to your dad. Make some plans. And don't ever, ever feel guilty about the decisions you make. Then come back and let us all know how everything is going.

Keep the conversation going (or start a new one)

Please enter your Comment

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support