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ninadora Asked February 2014

How involved should I be in my Mom's health?

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

Labs4me Feb 2014
Nina there is no doubt you want what is best for both your dad and mom. Elderly parents can drive us adult children nuts with their stubborness and indecisiveness. It is like dealing with the terrible two's stage, teenage years mentality in an adult body, leaving with us with a damn if you do and damn if you don't. All I can suggest is do the best you can with the hand you have been dealt. Elderly are notorious for not compromising. Do the best you can and take care of yourself. Good luck!

Countrymouse Feb 2014
Ignoring a rectal prolapse is a little extreme. And the impact on your dad - say, for example, if we imagined the genders reversed? - is verging on abuse. Shop her to the doctors, citing facts and dates only - they don't need to know the I said she said bit, it isn't clinically relevant. Mind you, if she's already awaiting surgery it's a bit late; and with luck it'll give her a good, constructive shake-up. But I'd still get a detailed record down on paper - you might need it for future reference.

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ninadora Feb 2014
Reality check I'm all for, I just didn't really understand where the "you want your mother to be young" etc was coming from... I'm all for hearing I have to let her make her own decisions. it's clear to me that I'm in over my head and I came to this website to find out what the best way to handle this is, and by that I mean the appropriate compromise between keeping her safe, and honoring her wishes. She is nuts and irrational when it comes to the rectal prolapse, but she's also lucid-- and I don't have a hard time hearing what everyone else said-- I just think that answer was weird and presumptuous. Anyhoo, she receives mental health care, but is on plenty of meds and has been my whole life.

Labs4me Feb 2014
Sounds like your mother could benefit from a mental health professional.

Veronica91 Feb 2014
Nina I had written a long post and it disappeared on me which happens a lot on this site. So this time it is brief. Mom makes her own decisons. She is in a safe place and will be treated and have surgery. Your Dad has had enough and may leave. Are you ready or able to pick up the load for many years ahead. Start looking st alternatives now but get the facts about Medicaid and N/H placement before anyone starts to panic. Mom is going to refuse N/H for sure so you have to back Dad up. If he is not there she can't come home end of story. You both will face a lot of bullying from authority figures so stand your ground They can.t call a cab and send her home, they have to keep her. It has been done before. It's cruel and unatural I know but the only way to sanity. If she agrees it will be so much better but I doubt she will do that. ASAP Research the facts about Medicaid everyone is afraid they will take everything. Dad can keep his house and car and household effects and a certain amount of money. Don't expect an inheritance when they are both gone Medicaid will be first in line for that. I think Jeannie was trying for a reality check she is not in the habit of making nasty comments and has had a lot of hard experience herself. You may not like my post either but I try and tell it like I see it. Blessings. Don't be guilted into anything You will not be a bad person if you help make hard decisions for your Mom.

vegaslady Feb 2014
Gosh, if you had explained more originally it would have helped in the answers you received. I suggest contacting the doctor and surgeon and go over things in detail if you haven't already. Living on 300 calories is not very life sustaining and is probably abusive, even if well intended. APS may be appropriate. Leaving her to her own devices at this point is not. Step in.

ninadora Feb 2014
@jeannegibs I'm here precisely to hear what everyone is telling me, that it is her life and Her decision. I accept this, but your answer was rather nasty. My mother is clinically depressed,, has mild bipolar disorder and smokes copious amounts of marijuana and there's some abuse of prescriptions as well.
The denial she is in can be harmless (cooking dinner for everyone) to more harmful-- causing bad falls, and the afore mentioned electrolyte imbalances. I don't need her to be any age than what she is--

I just want her to stop guilting my father into sleeping in a bed soaked with her own urine, or to clean up her diAhrhea when they are able to afford help. I have seen her descend into a completely irrational state regarding this surgery she needs, including lying to her doctors and insisting her 12 hours a day on the toilet is an MS symptom rather than a huge and frightening rectal prolapse. So, yes I get it from reading these boards-- this is not uncommon, but it is frightening to me when one moment she sounds like your
Mother, and the next she is acting nuts. For her to make herself this sick, to remain in bed for days at a time on copious amounts of drugs is extremely harmful to her continued mobility and when this is all said and done she will tell us all how much she regrets not allowing us to have a PT to help her move in bed.

So I get it, when it's bad enough she will take action, and she is now in the hospital awaiting surgery because it did indeed get bad enough, and she had to go to the ER. I live in fear of my father leaving, because this seems to be where the conversation is going of late. The truth is my mother cares more than any of us about retaining mobility and youth-- she's just sort of losing it. I do hear everyone though-- I have to let her make her own bed.

Anyhoo-- I'm venting, but I just think your first paragraph was out of line.

jeannegibbs Feb 2014
You are over reacting. Let your mother call the shots.

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.

Veronica91 Feb 2014
Thanks pstegman. I did not know that little gem. Any other shocks we should all know about?

pamstegma Feb 2014
veronica, medicare for rehab dropped from 100 days to 20 days effective 1/1/14

Veronica91 Feb 2014
300 calories a day is not going to put her body in the best condition for abdominal surgery. Recovery will be long and difficult are they expecting to do a cholostomy?She should be in the hospital NOW then she can be fed intravenously while she waits for sugery which sounds as thought it is becoming at least urgent if not an emergency. Your fathers choice of treatment will make her very weakand play havoc with her electolytes which could cause kidney failure if not sudden death.
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

Countrymouse Feb 2014
I see this two diametrically opposing ways.

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.

sunflo2 Feb 2014
I did the following with my mom and felt better that my observations and perspective would be on record with the dr since my mom is often confused or in denial about her health or well being.

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.

sempfi Feb 2014
Gee, it sounds like my life with my mom who has dementia. My father passed away in December of 2014. It has been extremely hard to get any help from my sisters or my mom's own family. I am the only the person takes care of her. But your not along in the matter when the family does not deal with it on a ongoing basis. I would suggest like the other woman just kinda plea with her and try to convince her of this surgery and how much she would feel better. If you can get her in the hospital I think she will behave better and will be more willingly go with your idea.

Good Luck. David

pamstegma Feb 2014
If you can, accompany mom to the MD visits and tell him the unvarnished truth, but only if he asks you for it. Also learn to avoid the fights. Listen, suggest, plead but avoid the battles. The patient wants control of their life, so if you can convince them the decision is theirs, they will go for it. You have to be tricky and convincing. Encourage her to go to rehab after surgery; I told myself it was a vacation with three meals a day. Make it her choice.

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