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My mom has mixed dementia and type 1 diabetes. She has been to the ER 3 times and on her second hospital stay in June alone. She has been refusing food, liquids and her meds for days. They can not get her BS (blood sugar) in control extremes of 700 to 17. Yesterday, it was decided she was going to go to Hospice. She really seemed to understand and clearly spoke that she wanted to die. Today, I arrive thinking I am signing the paperwork and she will be transferred to a Hospice care center. She is up out of bed watching TV eating breakfast and taking her meds. Even was willing to work with PT. Is this all a show? She keeps asking to leave and go home but her sugar is in the 400s. She eat half her lunch and seems to be getting angry that she is still here, yelled at nurse giving her an insulin shot. I am waiting for the palliative care doctor to get her to discuss what is going on.


I feel this might be a show, as she thinks they are letting her go home to die not hospice. That is not possible as she has been living in an ALF and her care at this point is to much for them to handle even with hospice coming in. Anyone have a clue, this is driving me crazy.

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Tattoochick, do you think it might be a rebound from relief that the decision is made?

When's that doctor going to show up? Hope it's helpful.
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I just don't, I felt today she putting on a show and really did not understand what was happening. As apposed to yesterday when she wanted to die.

As the day progressed she was starting to become angry. She kept asking about going home. I am not sure what home meant, she could not give me an answer other then home. She started pulling off the heart sensors, and then went for the IV. I stopped her several times.

The palliative doctor and hospice nurse came late in the afternoon (3:30pm) and really spoke directly to her. He explained that she no longer qualified for hospice in her present state. He then asked her where she wants to go, she said home. He asked her where home is and she looked at me. I said I don't know what she means by home. He asked where is home. She said New Port Richey, the town we are in. He asked her if she meant the assisted living, she shock her head yes. I don't think she really understood what that meant. He said she would have to go to rehab (I know the ALF will not take her back with the current four insulin shots a day). He then told her we can direct the skilled nursing rehab / long term care that she does not want transport to a hospital. She agreed, but I still don't think she understood what that means. The doctor said he will have some one from his team follow her care and at any point she qualifies for hospice he can make that happen. He quickly leaves and does not give me the chance to talk to him privately, about how I really don't think she understands what he was talking about just now.

I walk out into the lounge area to call my husband, because I really was panicked. I was out there maybe 3 minutes when the nurse comes rushing to find me, because my mom is screaming for me and ripping the IV's out. I start walking back to her room, when the social worker stops me. She starts to tell me about possible rehabs, when I just stop her and said, I really don't think she understands what is happening today. She just had a fight and ripped her IV's out. Oh yeah, totally forgot that she screamed and cursed out the nurse for giving her an insulin shot demanding she did not want it. The social worker tells me no rehab will take her like that. Really, I think I know that. She goes to find the doctor again. I go in the room, she is trying to get out of the chair demanding to go home.

I sit down next to her, and explain the doctor just was here and said you are not well enough to leave and then you would have to go to a rehab. She says she wants to go home. I again repeat what the doctor says she says she does not remember that. But this time the doctor returns, he asks her if she is causing trouble, she says no you are. He asks her if you wants a pill to make her less angry. She asks if it will make her sleepy, he say no, just calmer. She says ok. He leaves the room and immediately she starts demanding to go home.

Anytime I make a move and tired to stand, she would start acting up again. I just don't know what this is. The nurse and aid came to clean her up as she had went to the bathroom (she is completely incontinent). She carries on like a small child who is being punished. I know she has been definitely showing a major decline in the last two weeks, but this is something.

I feel like I am in limbo. No hospice, no rehab, no ALF, then where does she go. NH right not so easy here in the area. In order to get into a NH you first have to go through rehab, which none would take her like this.

She finally feel asleep and I was able to sneak home. Not sure what will happen when she wakes up or what to expect when I get there in the morning.

Plus, lets not forget they are still treating an infect and her blood sugars still are not very stable.

Anyone have a similar experience, anything, anyone?
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This is so distressing. I wonder if it may be a rebound effect of some sort. She is all over the place emotionally. Of course, the high sugar will affect her behaviour. Tattoo, I hope you get a break. I think you are doing very well in a very difficult situation.
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They may send her to a gero-psych hospital in an attempt to get her stabilized on neuro medications.
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They may pressure you to sign her out and try XYZ. Whatever you do, don't sign her out, because then you will be responsible.
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Tattoo
Sorry you don't need more questions but do you know what they gave mom to calm her down ? I forget if your mom is already on anti-psych meds which I think exacerbate diabetes anyway

My mom acts the same way in a hospital - social worker must find a solution for you
Medicare bill of rights they don't kick your mom out without a reasonable discharge plan
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I believe that they will be looking to transfer her to a lockdown psychiatric hospital. When this was done to a fellow in my care...the nearest one with an availble bed was two States away.

It sounds to me like your Mom is having a complete psych break. Honestly, what she is doing is over the top.

We care givers are living proof that a person can get used to anything....you may be too close to this chaos to see it for what it is....having gotten used to it all a bit at a time. But, looking at this from the outside...this is totally out of control. IMHO ... She needs inpatient psych help
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@MsMadge, the doctor did tell me, but I honestly don't remeber. She has not been taking her anti-physical meds, as she had been refusing any meds, but the I and the insulin shots. I think if she know she could fight them on those she would have.
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Oh Tattoo, this is too sad, too stressful!

I agree that a short stay in a senior psych facility might be just the ticket right now. You're doing fine! Be well, vent here.
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I am trying to figure this out, Tatoochick. Where is her infection? Are they treating it?
What does her doctors think is going on? I haven't heard a diagnosis yet. Hyperglycemia yes but from what? The mental status changes too. 
Have they sedated her? Did she calm down after that?
Something else is going on here physiologically. BS swings from 17-700? 
This is very stressful for you. I hope you get a resolution soon.
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I recall the questions about your mother's insulin issues, but, does she have dementia too? It seems that you said that in another thread, though, I don't see it in your profile. If that is the case, then, I'd consult with a geriatric psychiatrist. As others upthread have said, she may need to be placed in a psychiatric facility in order to get her medications adjusted. If that is her problem, then, I'd try to adjust my expectations regarding her behavior. There is no rhyme or reason. It often makes no sense and it's like expecting her to make sound decisions, plan and live normally, when the brain is not allowing that. The behavior is often unpredictable. I know it's frustrating I hope you do find some answers and can get some rest.
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Wow--whatever you, don't allow her to come "home" in this condition. I can't fathom any hospital allowing that, anyway.
They can keep her calm--please allow that. No doubt the blood sugar ranges are incredible--and that has to be controlled too.
If she WAS on psych meds, and now refuses to take them, all this other stuff is just making a storm of grand proportions.

I also wouldn't expect her to get much "better"---and whether she actually "wants" to die or not isn't the biggest factor here--it's evening out her emotions and calming her behavior. If that calls for antianxiety meds in whopping amounts, go for it. Perhaps then she can make a decision, and stick with it.

Can you take a day off? Have you basically been 'living' at the hospital?? Get away, take a day (inform the nursing staff and dr) and just take a huge breath and try to forget about her. You're so caught up in the mess you can't think.

YOU can't make this decision and I don't think she can either. Have the drs decide where she needs to be and try to help make that happen.

I hope you can have a peaceful day or so---is she this noncompliant when you are not around, also? Sometimes the elderly will "act out" when the "kids" are there and then just be peachy and sweet when we're not.
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😲Ohhhhhh my Tattoochick,
so sorry you're still fighting this and your mom too.
Thinking of you all day
Hugs
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tattoo - let us know how you are. I believe that bro was arriving to take over for a while. Let us know how mum is when you get that info. For myself, I always think the physical issues (infection and sugars) have to be resolved before the behavioural ones can be, as they contribute to the behavioural issues, On the other hand, something to calm her in the meanwhile could be helpful. Hope you got some rest.
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Hi, Saturday. Picked up brother from airport brought him to see mom.
They did give her a sedative yesterday. Sometime in the night she keep trying to get out of bed to leave. The had to restrain her. She did take her meds this morning.

Total opposite of yesterday. She just wanted to sleep, only eat a few bites. Like that all day. They said she did have a sedative in the morning but it was not that strong. Her sugars where 120 at lunch and dropped to 44 by 4pm.

She has had an ulcer on her foot for about two months, we had been making bio-weekly visits to a wound care dr. Everyone said it was stable, in the wound care dr here at the hospital seemed to thing it was superficial. They think that might be the infect however. They have been treating it with IV antibiotics. Her white cell cut has improved.

They did do an CT scan of her head and compared it to the last one done in September 2016. The doctor said there is definitely more shrinkage and now fluid around the brain. This is most likely causing the behavior issues. However, this is not a diagnose that qualifies you for hospice. She would have to go to a neurosurgeon and go through a surgery to treat and if it did not help then that diagnose would qualify her. Crazy right, because how could I put her through that.

From what I understand her behavior is worse when I am not around, the small amounts she does eat are usually only when I am there. I might have to spend less time there, just to get her re-qualified for hospice care.

Happened to see palliative care doctor in lounge area, and told him. He said he would review chart again. She should at least be on palliative care if not hospice.

Home now, another day tomorrow. Mostly like just going later in the day and let my brother sit with her.
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@Sunnygirl1 - yes she does have dementia and has been on physic med for depression, however she is hit are miss with taking them regularly. This behavior of only taking meds when she wants as been going on for years. Even at the ALF when they crush them she would either still refuse or spit out the applesauce / pudding or whatever they tried to hide them in. That problem can't be fixed.

I honestly feel the years of abuse she has put on her body is taking a toll. She has never eaten correctly and there have always been multi visits to ERs and hospital (I remember them as a child). It would only be an overnight stay or just a few hours as her body adjusted back. It just doesn't anymore. Add in the dementia and that behavior of not wanting to do what she should is worse (her form of control I think) and now her body shutting, she just doesn't want to eat (normal as dementia progresses, right?)

I think yesterday was a weird rally day and she felt good and thought she should be allowed to leave and as the day the went on it was making her angry not to be allowed to. I mean I have seen other patients at her ALF (she is in the memory care unit) get angry and agitated because they were not being allowed to leave.

I just think she is in a later stage they the doctors and I realize, but her body does and it is trying to let her go.
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I have a question ?

Did they take a sample from her foot ulcer? Podiatrist didn't for my dad... for 2 1/2 months he tried 3 diff antibiotics)...finally went to a dermatologist..he took a simple swab...his infection was resistant to all three antibiotics...finally got better on a different one 2 mo later plus more proper care
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Yes, the wound care dr has been there everyday checking it. It does not look any different. He said the sample showed the infection came from the skin, meaning not from inside the foot but outside. Like she could have picked it up from somewhere else and not caused by the ulcer. They did want to do an MRI of her foot, however probably did not mention this lately she has a morphine pain pump, implanted for a disc problem. So she can not have an MRI (giant magnet would be bad). They tried a CT scan of the foot but she would not keep her foot still and up in order for the image to be clear.

The pump is working and not an issue at this time.
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tattoo - I suspect you are right about your mum being further on than they realize. I think the next week will see her more clearly in one direction or the other - probably as you think. I am glad your bro is there.. You staying away so she can re-qualify for hospice is a good idea. Take care of you too. This is such an emotional roller coaster ride.
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Mom passed away on Wednesday evening, she went peacefully.
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Condolences, Tattoochick. Is this bittersweet, as it is for so many caregivers? Grateful that Mom is no longer suffering, and, of course, missing her. You can feel good that you did all you could to ensure her comfort.
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(((((Hugs))))) and deepest sympathies, tattoo. Her battle is over. I am so glad it ended peacefully. You did a great job looking after her. Time to take care of you now.
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I'm so sorry for your loss, Tattoo! You did so well by her.
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So sorry for your loss, Tattoochick. Mom's rough ride is over. Be good to yourself.
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