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Carolyn2022 Asked May 2022

Does anyone else have an elderly parent with a permanent iliostomy and constant issues with dehydration and electrolyte imbalance?

My 77 year old mom suddenly got her first case of diverticulitis 5 months ago which lead to bowel obstruction, bowel perforation and then 2 bowel surgeries leading to a permanent iliostomy. I have been traveling back and forth from my state to her state to help her all this time. She is very stubborn and wants to stay in her house and die there (her words). I'm trying to convince her to look at assisted living places. She thinks if we give it 6 months perhaps she will get better and stronger. The problem is her iliostomy is a difficult one. She has leakage an has to change the bag about 2x a day...not due to it being full but because her output is so thin and watery. The doctors have her on all kinds of thickeners and medications. Even worse is every 3 or so weeks she starts feeling terrible and nauseated and has to go back to the hospital due to severe electrolyte imbalance. Then she spends about 4 days at the hospital. Then they send her home again. Each stay in the hospital makes her so weak. They have her on salt pills and they have her coming in to do a blood test weekly...but it still happens like clockwork. Once again she is very sick and needs to go to the hospital. I feel bad because I am not there and am busy with work and kids. Even if she were in assisted living, this would happen. The doctors so far are not coming up with any solution. What can be done? I am flying out there in July to show her assisted living places, with the hopes that I can convince her. She is adamant she will not move into one and that her plan B is to just shoot herself (her words). It's extra hard because she was always a spender/shopper and never saved any money for retirement or medical expenses. She she has very little money to help with all this. She's a very stubborn and self-centered person, so it's difficult dealing with her.

JoAnn29 Jun 2022
Doesn't Gatorade help with electrolytes?

The reason an AL would be out of the picture is the staff is mostly CNAs who are not medically trained so can't help her with her problem. There should be a nurse in charge. You would have to ask if they would be willing to help Mom.

Countrymouse Jun 2022
Forget AL. Forget it. Why bang your head against that brick wall? Especially as you yourself point out that it isn't going to do anything to help the ileostomy issues or your inability to be in two places at once doing two and a half full-time jobs.

When you visit next month (June has come around quick!), if you're not preoccupied with the AL argument you will have that much more time and energy to see what can be done to get her diet and management under control, AND because you'll be onside with her (on the face of it, anyway) she's much more likely to engage with you. And if you keep your mouth shut, and it doesn't require her to "back down," she's more likely, maybe, to come to her own conclusion that she needs help in future. AL can wait.

I am secretly building a dossier (aka Book of Wrath) of cases of people sent home from hospital with new stomas and new catheters and not the *ghost* of a chance of handling them correctly. A man with a brand new stoma and no diet sheet - though actually this happens time and again, client and spouse will look at us hopefully and ask "what foods are allowed, please?" as though it never crossed anyone's mind in hospital that it might be a really good idea to tell a patient that before you send him home. A cancer patient who'd been in hospital for three months, then got discharged home alone on Friday with a brand new catheter, four night bags, no instructions, no stand for the night bag, and no inkling of where to get more supplies. It makes me apoplectic.

So. If your poor mother were my mother I would want to know:
what caused the diverticulitis
has that been effectively dealt with by the surgery, or are there remaining issues
what does the dietitian recommend
what do the stoma manufacturers advise
what is at the root of the electrolyte imbalance, and which way round is this going every time she begins to feel so unwell
how are her other organs holding up, e.g. what's her renal function like
what information has your mother been given
has she been properly supported in understanding what she has to do

The thing is, your mother isn't really elderly (77 doesn't count for much, these days) but she is, or has been, really ill. Hardly the best state for her to take instructions on board and then follow them efficiently when she's on her own at home.

Just for example - she's taking salt supplements, and then every three weeks regular as clockwork she begins to feel appalling and ends up back in hospital. That sounds like some kind of cumulative effect, don't you think? Make them draw you a picture of what her levels are when she's sent home, what they are when she's readmitted, and how they think the imbalance is happening over that time. It might be instructive for her doctors as well as for you.

Help your mother get this under control, don't mention the F (for facility) word, and see how she is towards the end of your visit. You might find her much more willing to listen once she sees it's good to have you on her side.
Carolyn2022 Jun 2022
Ok, thank you! This is very helpful. I have been trying to help her figure things out when I'm there and when I'm away but it's hard. The doctors are NOT very helpful. This list you gave me is great.

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CTTN55 Jun 2022
I read in one of your responses to your post that your mother constantly bothers friends and neighbors to do things for her.

She should not be living alone, AND I question (like others) if an AL is enough. I am often surprised how much people think that ALs can do, when the reality is that a greater level of care is often needed than will be provided by an AL.

Do you have POA/HCPOA for your mother? It sounds like she is mentally competent, so you can't force her to do anything or force facility placement.

But you CAN back off from doing increasingly more as things get worse. What happens when she gets hospitalized for 4 days every 3 or so weeks? Do you go there and stay with her until she is released from the hospital?
Carolyn2022 Jun 2022
She is mentally competent, so no I can't force her. I do have medical power of attorney which seems to mean the doctors and medicare company will talk to me. I have flown or driven out to help her 5 times since December. The last time she went into the hospital I did not go, and she was there 4 days and then released home. I set up pet care for her using rover.com and I set up a home aid company to be there when she got home. She probably will have to go to the ER again soon...tomorrow? She's getting the same symptoms where her electrolytes are off again. She had a GI appt on Monday and he changed her meds. And she had a blood test today. The doctors are trying to help her but honestly, they are SO SLOW to figure things out. Ideally she should not be alone. But I don't know what to do. I don't know how to help her with the medical issues. When I am with her she is very argumentative with me. I can't have her live with me. She doesn't want to live here bc we live at high altitude in another state, and she feels poorly when she has visited in the past. She wants to be near her friends and church. She does have a large tribe of helpful people there. I see pluses and minuses to moving her closer to me, but she doesn't want to do that. I don't know how she can live safely anymore. Even the nurses at the hospital are terrible at knowing how to help her and none of them are good at changing her iliostomy bag.
cwillie Jun 2022
Although I don't know anyone with an ileostomy your question has had me doing a little research online. I'm sure you know that this is a very common complication and that the only solution is to be very precise about hydration - and everything else that goes in the mouth. Frankly I'm not sure that an AL will be the solution you hope for, these are not medical facilities and if your mother isn't proactive enough to manage her care at home she won't be any more proactive in an AL. In my experience these facilities exist to provide assistance to those who no longer want to manage their own homes as well as a little bit of help with task such as bathing and medication management, they are unlikely to hover over a resident reminding them to drink several times an hour or to offer a diet significantly different from what is on the main menu.
77 is still relatively young and she seems to be optimistic of improving, if she was given a simple way to double down and chart her own intake so everyone could see what is going wrong would she be willing and able to comply?
Carolyn2022 Jun 2022
Yes, I think you are right. But we have yet to find a doctor who will tell us what she needs to do to figure out how to stop this from happening. They gave us no directions on eating and just said to drink a LOT. Two liters a day minimum of water. So I was all strict with reminding her to drink when I was there and she was getting very good at remembering...but then it turns out because she was drinking so much it threw her electrolytes way off. She was hospitalized again and tried to drink less but again her electrolytes are getting way off. Honestly it's completely baffling. They are doing a blood test weekly to try to figure it out. But they are so far not being very helpful.

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