Hi, I am 24 years old and my mom is 56. The start of last month she went to the ER with pains in her belly and we found out her colon was perforated and she went septic. It's a miracle she survived. She spent a month in the hospital basically unconscious, and moved to a skilled nursing facility on Christmas to recover. Since she got there, all the nurses tell me she is non compliant. She has a colostomy bag now that she refuses to learn how to deal with, she refuses to walk or participate in PT (she walked before all this happened). And she is on dialysis because of the damage to her kidneys from the sepsis, she is coming off of it early every time. I have no help and she has me run up there twice a week to bring her ridiculous things (pens, certain color highlighters, foods she doesn't eat). I live 40 minutes away and always have to make 2-3 stops running errands for her before I get to the facility. I'm at my wits end. The nurses say I should just stop coming and that way maybe she will try to get better for herself. She says she wants to live but I don't know. Has anyone ever gone through this? They also tell me she is faking pain to get meds.
Dialysis magnifies that; being connected to a machine for a few or several hours, literally immobile in a chair, creates a sense of confinement that also challenges one's image of mobility and self sufficiency.
I'm not personally fond of psychiatry or psychological intervention, but I think in this case it might help her to regain a positive image of herself and work through this hopefully temporary setback. Her whole life has literally been upended and changed, and not necessarily for the better. I think anyone would find this change difficult to accept.
This is what I would do:
1. Contact the physicians who were involved with the colostomy and the dialysis, and find out if they can recommend a social worker, or psychologist or psychiatrist. Also find out what prognosis is, especially as the dialysis and its duration (if not indefinitely).
2. Ask the nursing home social worker the same questions (except as to the medical prognoses). In my experience most rehab facilities either have a social worker on staff or can recommend one, who can then address the larger psychological issues. sx
3. Make arrangements for a consult with either or both, but don't be specific enough to frighten your mother into feeling that either the colostomy or dialysis issues are becoming more complex. The goal is to create an environment in which she can freely express her frustrations at the loss of control over her own body and life and the pros can offer paths to that acceptance.
4. Make a list of the things she asks for regularly, and the next time you visit, review them to see if she needs additional items, or others that haven't been supplied yet.
And be aware that she may just want the attention and not the items, so think of ways that you can provide that...reading to her, playing her favorite music, taking her to activities at the facility, etc.
When we first went through this when my mother fell and broke her leg, my sister (nurse), father and I took turns visiting, so that she wasn't alone and didn't feel abandoned. I went with Mom to therapy, reading a gardening magazine or something with animals so that I could share photos with her if she needed a little mental boost.
My father brought in a portable CD player with CDs of her favorite music. If she became frustrated, we had a musical time out. None of us spoke, we just sat and read while Mom relaxed.
I also brought music, took Mom and another patient to the music room and played for them. I think that's when Mom was the happiest.
Our point was to try to provide positive aspects to balance the negative. That's what I'm hoping you can do for your mother, and you, since you'll benefit as well.
We didn't do everything right; we were all just learning, but Mom was a lot better emotionally and physically than when she first went in.
5. If the nursing home has animal and music therapy, plan your visits around the latter, and find out when the animals visit. It's hard to time the actual room visitation as it depends on how long the animals visit with others.
One of the first things I did during the many rehabs we subsequently went through was to first make contact with the Activities Director and make sure that my parent was on the list for both musical events and pet therapy.
A soft, furry, cuddly dog can banish a lot of the negativity of being ill and compromised.
6. What I'm suggesting is probably going to be criticized by someone as pandering to her, but my point and plan are to first address the overwhelming issues, and move from there into a more acceptable outlook on her new situation.
Me, I would tell Mum which day you can be there and that you can make one stop on the way to pick stuff up. You are 26 and have your own life to live.
Be very clear when you are at the rehab that you cannot provide any care or support after discharge.
I'm trying to take a different perspective, i.e., that this CAN be a temporary situation, and my focus is on that. That's been my experience with my family, although I wouldn't deny that it's easy to slip into the be-all, do-all, go-to person for an ailing parent, even after the immediate crisis.
Sometimes it's an issue of balance, and standing one's ground.
So the first thing is to have her evaluated and treated for the likelihood of depression.
Secondly this will take time. Let me ask you this? There is often the hope that the bowel can be reattached in these cases. This is not rectal cancer, but a perforation that need to heal, and for that there needs to be no stool running through that portion of the colon. Is it possible that the kidneys will recover? They often do in a case like this?
IF there is the possibility that ANY or both of these things are reversible then that will give a lot of incentive to get back up.
I had a mastectomy. Many women cannot look at themselves for months after. I am just saying, this will take TIME and understanding.
Encourage her to talk about her feelings. Look for some forums for feedback from people who are dealing with this. This is not going to be easy. Removing yourself is not going to help this adjustment. Please see to it she gets the help she needs.
Whoops, just read another response and see you updated she will not need these things forever. THat is excellent news. Good luck.
Also, you may want to consider getting a Medical Information Release form from her doctor. Have her fill it out and designate you as her representative so that her doctors can legally disclose medical information to you when she's not present and you are 40 minutes away at your home.
Your mom needs to be enlightened about what will happen if she continues to be resistant and non-compliant. Is it possible she had some brain damage during her coma that is causing her to behave in this way? Does she have local siblings or parents who can help keep her on track? I'm just concerned that you are so young to have to be her point person as this can evolve into something that could easily overwhelm you (as it often does to the best of us). Blessings!
What was her living situation before the hospitalization?
Tothill: “Be very clear when you are at the rehab that you cannot provide any care or support after discharge."
YES! I started immediately thinking along Tothill's lines. What happens to her after discharge? If she's got you a runnin' now, don't you think it's going to continue (and get worse!) once she's discharged? Are you willing to be in charge of her colostomy bag?
If you don't want to become her caregiving slave, be very firm when they try to discharge her that you are NOT able to be her caregiver. The discharge planner will try to guilt you into it (as will your mother), but don't give in if you don't want to become her caregiving 24/7/365 caregiving slave.
Do you have siblings? If so, then where are they?
I know what it's like to have a nonparticipatory sibling. I would just not count on him, but I most certainly would document the times he's been asked to come and doesn't show up, or other instances of his refusal to participate. I suggest documenting b/c at some point, these kinds of siblings want what they consider their share of any estate funds, but consistently refuse to provide support.
Having gone through some "static" periods during our family's course of rehab, injury, rehab and more, then end of life, and now post death, I know what it's like to be literally frozen in a mood, and mode, and have difficulty getting beyond it. It still happens to me.
There are times when it's necessary for a little boost, and that's what I'm thinking you can provide to your mother, but I'm not suggesting or even addressing the long term care issue.
If your mother can get past the current disabilities and think more positively, that's major progress. That's one of the reasons for the music and animal suggestions.
Since the facility doesn't have that, I would do some research on animal organizations that do provide therapy. I may have cards for some; I'll see if I can find names of the organizations. Believe me, petting a dog for even 5 - 10 minutes can make a difference in someone's day.
With no music programs, can you bring a radio or some tech device that plays music, along with ear phones? When my father was in palliative care, one of the religious staff sat with him, just holding his hand, but he also turned the tv to an all "easy listening" channel. It soothed me, and I believe it soothed Dad.
Some people probably won't believe this, but once when my father had a serious setback, was intubated and in an induced coma, I visited him regularly, and sang songs from his church hymnal. I also played his favorite music on a portable CD player.
He was connected to a machine which monitored brain waves, so I watched the brain wave monitor which I sang or played the CDs. There was definite reaction! The nurses agreed with me, as did one of the attending physicians. I've always been a strong advocate of music therapy.
And I know that there are organizations which provide it, but offhand I can't remember any names. If I can find some, I'll post back. I think one has harp players.
And thank you for replying to my post. It's helpful to know that the feedback is being considered!
See All Answers