Hi,
My mother is of sound mind, and is not dying, nor with dementia, and is a relatively youthful 72. She has Multiple Sclerosis which has left her with a host of problems, but she still retains some mobility. She has some separate mental health issues as well. She and my father are in denial about the danger she is in.
The pressing issue right now is a severe bowel related issues for which she needs surgery and has put it off for a year while making herself increasingly sicker and eroding whatever quality of life is remaining. She has finally agreed to have the surgery, but will not meet with the surgeon until next Friday. Until then, my father has her on a diet of clear liquids because she has started having intense pain from eating. He did not speak to a doctor about this, and because of her MS symptoms something this jarring to her system could make recovery worse, plus I worry about her having 300 calories a day for 10 days prior to going in for surgery.
She had been taking laxatives or Miralax to manage her symptoms, and was recently in the hospital for three nights with dangerously low sodium levels (she can stroke from this). I just feel that he is being incredibly negligent by not calling a doctor to discuss what is going on (including the new symptoms of pain from eating)
We had terrible fights while I was visiting and for sure did not handle myself in the best possible manner, in truth I cannot take watching my mother be so self-destructive and flippant about her health. This has been going on for many years, the denial, and the not listening to doctors, but she's in her 70's now and she does not recover from these episodes the way she once did. My father is at his wits end with my mother but she really wears the pants in that relationship. I tried to get my brother to reason with my father about the seriousness of this, but I feel that no one wants to hear it from me. I went through this 5 years ago with them, where everyone said I was over reacting and let my mother call the shots, until basically she was in bed for three months and it probably took her almost a year to get her mobility back to where it had been before she got sick.
I know I don't handle this well, and I want to step back and stop being a nuisance, but I am really worried about my mother. I know this is long, thanks for reading-- if you have any advice I would really appreciate it.
Nina
I created a detailed log of my observations of moms health complaints, how she managed at home, inadequate meals, hydration, exercise, memory, other drs and drugs she was getting, etc. I sent the letter to the dr with my contact info as her daughter but asked that the info be kept confidentiL and was for the dr to use in his next evaluation of mom but he didn't need to tell her I wrote it.
Then mom allowed me to accompany her on her appt and even let me be in the room. The dr was excellent and asked a lot of probing questions to her (based on a lot of info in my letter) and my mom would try to lie or deny some stuff but then dr would say, well let's check this, etc. He was able to straighten out some meds, send her to a specialist, and plant the seed for some other things. So this was helpful and you could do same.
If mom is in denial and dad is weak, there isn't much you can do...fighting and arguing won't work...I know that from experience. Go behind her back directly to dr. He can't give you info without her permission but he can use your info to rely on in his evaluation.
This assumes that she is "in her right mind." Apparently she doesn't have dementia. Is she clinically depressed?
You would like your young 70s mother to be around another 10, 15, or 20 years. You would like her to be healthy. Totally understandable and worthy goals. You mother has coped with a serious autoimmune disease for many years. She has suffered disabilities and hospitalizations. She may not share your goal for herself.
You went through something similar with your parents five years ago. Maybe if they had listened to you then she would not have had to spend 3 months in bed and a year regaining her mobility. Or maybe the outcome would have been pretty much what it was. But apparently your parents did not learn from this episode that they should give more weight to your advice. And you did not learn from it that the tactics you are using just don't work with them. So, here we go again.
You are concerned about your mother's well being. Feel free to send a note to her primary care provider, listing your concerns (as sunflo suggests) and also let her surgeon know what is going on with her nutrition in case you think she and your father will not disclose this. Then it is really out of your hands.
Be there for Mom and Dad. Support whatever decisions they make. Make sure they know you love them. You cannot control their decisions about physical health, but you can contribute greatly to their emotional health.
1. Whose life is it, anyway?
2. Tell her doctor what you've told us about undisclosed symptoms.
1. relies heavily on what you say about your mother being of sound mind. How long has she been living with MS? The thing is, this could split one of two ways, too: either she expects to bounce back this time as well, and could be pushing it; or she's had enough and doesn't care whether she bounces back or not. If you're going for option 1, you can speak your mind, you can tell her what you think of her approach, you can ask all the questions you like and do all the research you like - but in the end you have to get yourself to accept that it's her choice. Really hard.
If you're going for 2, you're a meddling little beast and don't expect any thanks - not from her, anyway, though possibly tacit ones from your father, in the end. On the other hand, you'll have given her doctor information that could be clinically vital.
I don't know which I'd pick. I hope I never have to decide. I have blabbed to doctors before now about things I knew they hadn't been told, and it's been well received by the doctors; but I've never done it against the explicit wishes of the patient. I just don't know if I would or not. You know your mother best, though - have a good think about how she's behaving, talk to her (on her own, ideally, not with your father there to put a brave face on for) and see if you can get down to what you believe she really wants.
What anybody else says? - nuts to them. Only your mother's opinion matters more than yours on this.
Your mother is of sound mind so will make her own decisions. Now you could call in adult protective services because your father's treatment is neglegent. That will upset both of them and is not my first advice, Tell your father what I have just told you and let him talk to your mother. You can not force mother to do anything whether it is for her own good or not. you should also contact her primary Dr and let him know how little sustinence mother is recieving. it sounds as though she is in more pain than she is admiting at least to you and before too long will result in a visit to the ER and everything will be sorted out. keep calm and try and distance yourself from any decisions as they are not yours to make. Your support is going to be essential in the near future. Rehab would be nice but she has been ill for many years and will want her own home environment and will probably recover quicker at home unless the long term plan is nursing home care and this would be a good time to transition to this. It is much easier to get a bed if she is already in rehab. you would need to check this but I believe Medicare will pay for 100 days in rehab after a qualifying hospital stay. Your father too may be tired after so many years as a caregiver and would welcome some repite Patients with MS do not usually have the most cheerful of dispositions. good wishes to you
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