You are just tired...tired of answering the same question over and over and repeating yourself, tired of denial, tired of not being able to do what you want, when you want to and as fast as you think you should be able to do, tired of all the demands and being the responsible one, tired of your questions (and answers) being mis-interpreted, tired of your own reactions to things that you would not have reacted to before, tired of the endless list of tasks (check 1 off which adds 2 more on), tired of leaving vmails for "simple" questions, tired of new hurdles that you never anticipated, tired of people who prefer to be an obstacle rather than a resource, tired of pressing numbers on the telephone when "representative" or "agent" doesn't work, tired of being put on hold, tired of waiting....tired, tired, tired.
I would try and find a mental health therapist who can help you with your emotions through this very difficult time and get you started on alternatives. See if your PCP or your insurance has a list of people or recommendation.
In the meantime, we are here to support you. However, we cannot provide timely personalized, accurate advice. Only a professional can do that for you.
So it's mom's wish to stay out of a nursing home, but at what cost?
At the expense of you going insane caring for her for 4+ years which can turn into 10?
At the expense of you dreading waking up in the morning, hopeless, looking at another day of changing diapers, wiping butts, listening to her carrying on and ranting with dementia?
At the expense of your entire life?
When a parent makes a request of their child such as this, its 100% selfish and never takes the full picture into consideration. Never.
If your mother told you 10 years ago that she'd acquire dementia, become incontinent and STILL want 24/7 365 care from you, what would you say, knowing what you know now?
And would she ask such a ridiculously monumental thing of you, knowing ahead of time what a huge burden she'd wind up being?
That she'd be asking you to sacrifice your LIFE and your well being for her, for no good reason, too, all because the thought of a nursing home didn't sound too nice.
Put into those terms, the whole thing sounds absurd.
Because it is.
It's time to take YOUR life into consideration now and realize there's more than one way to care for your mother. Without leaving your blood all over the floor in the process and perhaps dying before she does.
Its time to realize and acknowledge there are TWO equally important lives that matter here, not just moms.
It's time to look into managed care now, before you wind up hospitalized and mom is forced into a nursing home ANYWAY.
There's nothing wrong with you except compassion fatigue on top of sheer exhaustion and probably some well earned depression thrown in. A serious recipe for disaster.
Please take another look at this situation and the options available for mom. My mother did quite well in Memory Care Assisted Living for the last nearly 3 years of her life, honestly. And I promised dad I'd always take care of mom when he was dying, which I did.
PROMISES REQUESTED BY DEARLY LOVED ADULTS BEFORE THEY SUCCUMB TO DEMENTIA SHOULD NEVER BE HONORED/APPROVED WITH FULL AND WILLING CONSENT OF THE CAREGIVER.
Ok, I’ve said it. And I believe in what I said. My mother wanted to “die at home”, or at very least, in the public geriatric residence that was literally walking distance from the home she’d lived in her whole life.
I loved her dearly, but our relationship as mother and daughter had never been the best, and she was 24/7 care when contrary to what I KNEW was not in HER best interest as NOR mine, I brought her home with me and became her FULL TIME caregiver.
She was stubborn and disoriented and angry, and could not be trusted, as a constant fall risk, for ONE SECOND alone. (I slept on an air mattress on the floor beside her bed).
When she finally returned permanently to the very good care facility where she’d had 3 months of rehab, my life became “different”. I made daily visits, worked full time, did her bills, provided her disposable undies……but slept in my own bed and was able to take a shower without hearing her screaming for me.
Nay1001, The care of family with dementia is not irrevocably assigned on the day of your birth. You have a responsibility to stay well and treat YOURSELF with respect.
My mom had been bouncing from health crisis to health crisis for most of my adult life and I had been dreading finding her dead at her home every visit so I never imagined that she could live to age 99 or that a person could become so completely physically and mentally dependent, and that they could continue on that way for years. Mom never made me promise not to put her in a nursing home but I knew she was terrified of the idea because of her experiences when she worked in one before her marriage, so I took care of her as long as I could. Sometimes it's just too much for one person to handle.
Nay1001, “WTF is wrong with me?” The only thing wrong with you is that you’ve gone beyond your caregiving limits. So many of us do. Those of us who have cared for a LO with a dementia related illness know how the constant demands of that care can wear us down to an unimaginable emotional and physical rabbit hole. Every new day is, as Yogi Berra said, deja vu all over again. The obligation you feel (like, it’s your job) to continue to care for your mom beyond what you call burnout is dangerous for both you and her. You’re trying your best to keep her out of a “nursing home”. Did you promise her that? If so, I’m afraid you’ll have to renege on that promise. This situation is no longer about your mom’s wishes, it’s about your own mental and physical health. You admit, you’re at the end of your rope, you’re tired, you have no patience.
You are not experiencing burnout; you are not just tired. There is a condition called “compassion fatigue”. It is beyond burnout. It is the result of years of constant demands on you to provide for your mom’s care. It’s sort of a caregiver’s PTSD. These feelings can cause loss of empathy for your mom, cause you to feel hopeless, resentful, and a diminished sense of self.
How do you cope with it? You remove yourself from the situation. Like ChoppedLiver says, memory care facilities are not the nursing homes of old. You can no longer honor your mom’s wishes. Would you feel guilty in placing your mom in MC? Would you feel like you’re neglecting proper care for her? Probably. I was faced with that situation also, as I’m sure others in this forum were as well. I decided that if I could find my wife an acceptable caring facility, one that could ensure her safety, manage her medications, and understand her illness better than I could, that, indeed, I WAS taking care of her.
It’s time to look at care facilities. See for yourself. When you do, forget how attractive they may seem, concentrate on the staff/resident interaction. Does the staff really seem to care for the residents?
Once that’s done, seek counseling for yourself to help get you back to living your own life.
I would try and find a mental health therapist who can help you with your emotions through this very difficult time and get you started on alternatives. See if your PCP or your insurance has a list of people or recommendation.
In the meantime, we are here to support you. However, we cannot provide timely personalized, accurate advice. Only a professional can do that for you.
We care...
At the expense of you going insane caring for her for 4+ years which can turn into 10?
At the expense of you dreading waking up in the morning, hopeless, looking at another day of changing diapers, wiping butts, listening to her carrying on and ranting with dementia?
At the expense of your entire life?
When a parent makes a request of their child such as this, its 100% selfish and never takes the full picture into consideration. Never.
If your mother told you 10 years ago that she'd acquire dementia, become incontinent and STILL want 24/7 365 care from you, what would you say, knowing what you know now?
And would she ask such a ridiculously monumental thing of you, knowing ahead of time what a huge burden she'd wind up being?
That she'd be asking you to sacrifice your LIFE and your well being for her, for no good reason, too, all because the thought of a nursing home didn't sound too nice.
Put into those terms, the whole thing sounds absurd.
Because it is.
It's time to take YOUR life into consideration now and realize there's more than one way to care for your mother. Without leaving your blood all over the floor in the process and perhaps dying before she does.
Its time to realize and acknowledge there are TWO equally important lives that matter here, not just moms.
It's time to look into managed care now, before you wind up hospitalized and mom is forced into a nursing home ANYWAY.
There's nothing wrong with you except compassion fatigue on top of sheer exhaustion and probably some well earned depression thrown in. A serious recipe for disaster.
Please take another look at this situation and the options available for mom. My mother did quite well in Memory Care Assisted Living for the last nearly 3 years of her life, honestly. And I promised dad I'd always take care of mom when he was dying, which I did.
Best of luck taking care of YOU now.
Ok, I’ve said it. And I believe in what I said. My mother wanted to “die at home”, or at very least, in the public geriatric residence that was literally walking distance from the home she’d lived in her whole life.
I loved her dearly, but our relationship as mother and daughter had never been the best, and she was 24/7 care when contrary to what I KNEW was not in HER best interest as NOR mine, I brought her home with me and became her FULL TIME caregiver.
She was stubborn and disoriented and angry, and could not be trusted, as a constant fall risk, for ONE SECOND alone. (I slept on an air mattress on the floor beside her bed).
When she finally returned permanently to the very good care facility where she’d had 3 months of rehab, my life became “different”. I made daily visits, worked full time, did her bills, provided her disposable undies……but slept in my own bed and was able to take a shower without hearing her screaming for me.
Nay1001, The care of family with dementia is not irrevocably assigned on the day of your birth. You have a responsibility to stay well and treat YOURSELF with respect.
I too am an only child.
“WTF is wrong with me?”
The only thing wrong with you is that you’ve gone beyond your caregiving limits. So many of us do. Those of us who have cared for a LO with a dementia related illness know how the constant demands of that care can wear us down to an unimaginable emotional and physical rabbit hole. Every new day is, as Yogi Berra said, deja vu all over again. The obligation you feel (like, it’s your job) to continue to care for your mom beyond what you call burnout is dangerous for both you and her. You’re trying your best to keep her out of a “nursing home”. Did you promise her that? If so, I’m afraid you’ll have to renege on that promise. This situation is no longer about your mom’s wishes, it’s about your own mental and physical health. You admit, you’re at the end of your rope, you’re tired, you have no patience.
You are not experiencing burnout; you are not just tired. There is a condition called “compassion fatigue”. It is beyond burnout. It is the result of years of constant demands on you to provide for your mom’s care. It’s sort of a caregiver’s PTSD. These feelings can cause loss of empathy for your mom, cause you to feel hopeless, resentful, and a diminished sense of self.
How do you cope with it? You remove yourself from the situation. Like ChoppedLiver says, memory care facilities are not the nursing homes of old. You can no longer honor your mom’s wishes. Would you feel guilty in placing your mom in MC? Would you feel like you’re neglecting proper care for her? Probably. I was faced with that situation also, as I’m sure others in this forum were as well. I decided that if I could find my wife an acceptable caring facility, one that could ensure her safety, manage her medications, and understand her illness better than I could, that, indeed, I WAS taking care of her.
It’s time to look at care facilities. See for yourself. When you do, forget how attractive they may seem, concentrate on the staff/resident interaction. Does the staff really seem to care for the residents?
Once that’s done, seek counseling for yourself to help get you back to living your own life.
I wish you well.
A more important question is what can you do so you don't feel like this anymore?
WHY? How did it happen that had to move in with her almost four years ago? Are you an only child?
Did you give up a job? What is your financial future?
Why is your mother's "wish" more important than your physical, mental, and (probably?) financial health?
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