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My mom has Alzheimer's and was in a nursing home facility for about six months for health reasons. We visited everyday and every day she would ask to go home. After she improved, we took her home. The first day she was home, she was fine. She went upstairs to the house, upstairs to bathroom, bedroom, etc. The next, it was heartbreaking. She wouldn't come downstairs, she refused to go to the bathroom, or even move from her seat. At one point, we had to call 911 just to have her picked up from the floor to her wheelchair. My sister seems to think that she has just got to get into a routine again. But she seems really afraid of the 2 steps to bathroom. We can't get her to the doctor for her check-ups because she won't budge. If you try and force her up, she screams that we are killing her and screams help, help. It is so disheartening. My sister and I cried because we wondered if we had did the right thing in bringing her back home. Why would she regress in just overnight? What can we do?

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My boss's wife has Alzheimer's, now in her 14th year with it, and I have been learning a lot of what he is going through as he needs to vent to me.

Apparently anyone with Alzheimer's, depending on the stage, needs to follow an exact routine, and any detour from that routine really confuses and frightens the patient. That sounds like maybe what is happening to your Mother.

As for you bringing your Mother home, don't keep blaming yourself, you actually thought everything would be ok. Give it time, hopefully your Mom will get into a routine.
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I agree with freqflyer above. Change is so difficult on elderly people anyway and it's even worse when the person has Alzheimer's. She might just be adjusting to her new living arrangements. She had gotten used to the routine in the NH and now a new routine has to be established and it's going to be very difficult for her. Give it time but be prepared because she may not be able to bounce back all the way. You might be looking at a new normal with your mom once her agitation settles down.
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Thank you so much for your answers. They make perfect sense and we are going to try and not give up. I have another question regarding her not leaving the home because of the stairs (or whatever). She has to go to the doctor for her INR test because she is now on coumadin. Is there a way medicare will pay for someone to come to the home for her blood test?
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Your post brought back memories of when I brought my parents home from various rehab stints. The first few days were really adjustements. They went from having literally a team of supporters, meals prepared for them, wheelchair accessible bathrooms, to a home situation with none of those support factors. I think it was very traumatic for them.

Suddenly they were on their own. I wouldn't say it was terrifying, but it definitely was unsettling. When someone has dementia, I think it would be terrifying.

Can you or someone stay with your mother for a few days, and work with the home care team (which I assume she has) to help your mother acclimate? She may not, but at least you'll have given her as much support as possible.

If you don't have visiting home care (nurse, PT, OT and aide), call her primary, internist or gerontologist and ask for a script. If she has help reacclimating, it might help ease her fear. She's probably terrified of falling, especially in a 2 story house.

Is there a way you can adapt the first floor so she can live there until she's more comfortable at home? If it's a bathroom issue, a commode can help during the acclimation period. She can take sponge baths; I would think a shower is out of the question right now given her fears.

I do hope you can find a solution; this must be so disheartening.



Does your mother have home care, including a visiting nurse? This is my experience and understanding based on what our visitinig nurses have told us.

A visiting nurse can draw blood for PT/INR if she has a script to do so. The sample would be delivered to the patient's PCP for analysis.

I don't know whether they could deliver it elsewhere, but I asked our pharmacists at the anti-coagulation clinic we attend. They were polite but adamant that they will not prescribe and/or monitor PT/INR values unless they themselves draw the blood.

So basically, we still go to the Anti-ag clinic for blood draw. I do understand their position; they need to be absolutely sure the blood was drawn properly, under sterile conditions, and that it is in fact the patient's blood.

So, yes, it could be done, but the question is who would then analyze it, and would you want that to be a primary care or internist? In our experience they have nowhere near the experience that the anti-coag clinic pharmacists have.
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Accidentally hit "submit" before making corrections.

Any blood sample drawn would I believe be delivered to the doctor who scripted for the monitoring. At one point my father's cardiologist handled in the monitoring, in his office, but the volume grew to the point that he contracted with the anti-coagulation clinic of a local hospital.

The comments from the anti-coag pharmacists as to prescription refer to Coumdin refills. They, not the cardiologist, call in the scripts and refills to the pharmacy.

In our metropolitan area there are about 4 anti-coag clinics, all affiliated with hospitals. To my knowledge, they don't provide any in-home monitoring, but it's possible some clinics do.
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Can you get her out even if she's screaming bloody murder? Not sure, but if I could physically handle it I might try it. This time it might be this test. What about the next time she refuses to move and then the next. Look at the Teepa Snow videos for more advice on handling demented patients.
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Stairs are a real safety concern, and NH is all one level, with a walk in shower. They also manage meds. Mom screwed up her Coumadin and her INR shot from 2 to 9.5 and she fell. Patients always ask to go home, but sometimes it is not workable. Keep your options open. If she did well in a NH and improved, perhaps her best option is Assisted Living.
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