@compmom, hugs. your journey sounds so so hard.
You have a legion of invisible supporters out in the ether hoping for the best for you and your mom. All you can do is all you can do.
My mother called me 28 times between 3 and 6am yesterday morning, with 18 messages left, each and every one exactly the same: “I need some water, please, get me some water.”
I had the MD paged when I arrived and insisted on the tube being taken out- no more suffering I thought. But no change at all in her perserveration. Then I noticed white sores on her tongue and asked for nystatin, which they gave. (When do I get me medical degree? They are all too busy to notice things. Not their fault.)
She was more agitated, and demanded water even when I had given her some, even trying to climb out of the bed to lunge at the sink, and also started screaming “help.” The one on one aide helped. This must be delirium. She had moderate dementia but now you would think she had had a lobotomy.
Today we find out if she will have a colostomy done tomorrow.
Question for anyone who knows: what would have happened if I had not taken her to the hospital? We had her on hospice recently and the MOLST says no transport to hospital, no IV’s etc.
The surgeon AND palliative person I have to advise, both tell me this IS the palliative approach. That the alternative is too awful to contemplate.
But this hospitalization has been so painful to watch, with so many procedures, the tube and now colostomy. This is NOT what we intended for her. The misdiagnosis of constipation got us into the system and now we cannot get out.
The alternative is that all those intestinal loops would soon explode apparently.
I got 8 calls last night and called them to give her sleep med early. No calls this morning. That’s good.
From NPR this morning:
Is It Alzheimer’s Or Another Dementia? The Right Answer Matters
https://www.npr.org/sections/health-shots/2019/03/18/703944116/is-it-alzheimers-or-another-dementia-the-right-answer-matters
@compmom I cannot answer your question but my heart goes out to you. Even if all the medical professionals are great there is so much burden on you as the caregiver and advocate. Is anything like Xanax appropriate at all? I am not a fan of drugging up our elders but it seems like it would be compassionate to relieve her stress (and yours) a little.
@compmom What a tough situation. I really feel for you. I don’t know the answer to your question either. I do know that the same information was relayed to us. Once my mom was placed on hospice there would be no way that she would be sent off by ambulance to the local hospital. Instead if she got very sick she would be sent to the hospice hospital. Right before she passed she was scheduled to be admitted to the hospice hospital. We were watching for the flu outbreak there to be resolved and she passed. I did worry about a blockage with my mom. She did seem to have a lot of bowel issues at the end. She certainly wasn’t concerned about moving her bowels. Getting a colostomy at that age seems so daunting for all involved. I’m a rectal cancer survivor and I know how tough those are to manage.
I’m so very sorry @compmom. Is there any way she can be given Ativan? Hospice allowed a liquid form for my father as often as needed - even every 15 minutes if he needed it, then less frequently after he calmed down.
The intestinal blockage sounds like a horrendous way to go. FWIW, I would have done the same thing because the alternative is so horrible. Can she be discharged to hospice after the colostomy, and given enough painkillers and anti-anxiety meds to keep her calm? No feeding tubes, no IVs, just letting nature take its course?
Sending loving thoughts your way.
@compmom this is so hard. You are doing the best you can, so don’t second guess it. I, too, second the use of tranquilzers for your mom, it will help relieve her suffering. Hugs and energy.
You guys are SO great. Good news. She passed swallow test. And we have a choice of her going home in a few days, colostomy or sigmoidoscopy. This surgeon did the gentlest shortest sigmoidoscopy you can imagine so we are comfortable with her doing that again but INR is being treated with Vitamin K first and she will be covered with Heparin afterwards. I am second guessing that too but it seems good to avoid future trouble and it will let us know how narrow the stricture is and how aggressively to soften stools. She has an awful yeast infection in mouth and throat and that is why she repeatedly wants cold liquid. To soothe. She cannot understand this and cannot remember doctor being here and cannot even remember that she just had a sip. Very frustrating. I am her caregiver here too and diagnosed the thrush because they are too busy. Wonderful nurses but too busy, not their fault. The system is overburdened. What about people without kids? We are out of the woods but will be arranging full services with Palliative at home. Thanks everyone !!!?
That’s great news @compmom. Things are moving in the right direction. I really like that surgeon’s style.
I agree the folks on this thread are so great. It was a wonderful support when I needed it. I’m glad it’s helping you too.
I think @compmom, at our hospice, they would bring her to the inpatient hospice facility. There is even a hospice floor at the hospital. Once there, the palliative doctors would round and determine the palliative options, which may include surgery. Certainly leaving a bowel obstruction would be terrible and uncomfortable. Your poor mom. How awful that she can’t drink and how awful her mouth must feel. Good news there is a light at the end of the tunnel. Hope you get some sleep again.
We just called Apria to find out why an Rx we’ve been trying to get filled for months still hasn’t been filled. They said they finally got the Rx via fax. Now they need MD notes which explain why this Rx is needed and other (cheaper) options aren’t sufficient. .
We are now making a visit to the md’s office tomorrow @11:30 to see if the amD can write up some great notes to get Medicare to pay for this.
Compmom, can she manage ice chips? And can you manage her care at home?
Thanks GTAlum and lookingforward. She managed ice chips yesterday but the need is continuous. Her demand for cold water or ice is literally every 10 seconds.
I thought of getting her a baby teething ring and will do that today. Two so they can be rotated. Hope the nursing staff will refrigerate for me. I am worried about the yeast- it must have come from the tube itself and at the very least traveled down through esophagus. I ordered a clear liquid meal for her that had NO sugar! I don’t think she can take the azole meds so not sure what will happen if Nystatin doesn’t work.
Sigmoidoscopy today and no doubt discharge once her INR is back to normal. It has been high so they gave her Vitamin K. She previously had a stroke off Coumadin so they will use Heparin or Luvinox to keep her safe until the iNR is in range.
Discharge plan is uncertain. I had talked with Pallative Care at home and they will start her on maximum services according to the case manager, at the AL. But the person from Palliative Care at home came to talk to me and seemed pretty concerned about this plan since even maximum services means only an hour a day, and she is currently supervised at all times. We all know assisted living doesn’t involve a whole lot of assistance. I will be there all day but I am feeling tired to be honest.
I have said for years that I would prefer to live with her. I sold my house in 2014 and live in a tiny apartment but could rent with my mother. Some of you know that right after I sold my house my daughter had a serious brain injury after being hit by a car, and during her recovery I got breast cancer. I haven’t figured out my housing long term because then I jumped right into caring for my mother so I live within range of her.
People caution me about living with her and it is nice to drive away when she is doing better. But when she is not doing well, I end up on her love seat, trying to sleep with her snoring and moaning, and don’t have any of my stuff, my work, with me. The money involved really bothers me too.
Most people do live with their older parents. I admire all of you who do. I am going to revisit this with social worker and MD.
Sorry to take up so much space and not be helpful to others right now! On the other forums I help, here I am venting and benefiting and will help soon 
Hang in there @compmom - you have had a lot of very challenging situations. And living one now. Prayers that you will continue to navigate the choppy waters for the best outcome for your mom and you.
@compmom I just want to say, to you and everyone else who posts during a crisis, that it’s all immeasurably helpful. I’ve learned about things to plan for, watch for, keep in mind. And it hopefully helps those of you posting feel supported and less alone – what a great win-win. This thread is a blessing.
We’re here for you, compmom. Vent away.
My concern is how very much you’re in the thick of things, but not a medical pro. How can you find a way lean on that medical support and their knowledge, their experience, more than an hour/day? Your mom has been in crisis. Are you truly up to the role you envision?
Hugs.
Hugs @compmom. So hard!
@compmom, if the plan is for her to go back to her assisted-living place and you to stay with her there, would it be possible for you to bring something more comfortable to sleep on than the love seat?
(((((hugs))))) for sure. You are in the right place to share and vent.
Hi @compmom , I am sending you virtual hugs This is so difficult and you are doing everything you can. The living situation is a tough one as loved ones go in and out of abilities, health situations and mental and emotional states. There are no easy answers to whether to live with them or having them live at AL , NH or MC with you practically living there. Please take pride in the fact that you are taking very good care of her and we all see it!
Her tummy is distended again. The choice now may be colostomy or hospice. Have calls out to PCP and two hospices to balance surgeons view. My brother wants hospice. But I asked my mother and despite dementia she wants colostomy! She is in pain again so things need to hurry. I am undecided, was leaning toward hospice, but my mother can still decide. No artificial respiration period. I draw the line there. Confused!!