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She refused any tests and so no idea how far cancer might have spread. The biggest issue, and I think it has to do with the dementia, is her anger at being assisted at the toilet and, when she is unable to walk on her own, at being changed. She screams and fights with the caregiver and anybody else who is trying to touch her, yet she must have assistance with this. My father (also 94) is understandably upset and angry at the caregivers. She will trust him most of the time but he cannot be there for her all the time. He accuses everybody of mistreating her. Understandably, she cannot be allowed to sit in urine or feces but it breaks my heart to hear her angry complaints. Is this normal in dementia patients? Any ideas? Thanks a million.

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I'd consider comfort care - likely hospice. I certainly wouldn't go for a lot of tests. Your mother may be suffering from pain that she can't express and the caregivers who are touching her make it worse (in her perception). Your dad is reacting normally to the fact that they seem to be hurting his wife. Hospice social workers and the chaplain could work with him to help him feel understand what is going on.

If you have a chance, please update us. You are going through a terrible time.
Carol
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Call in Hospice. They will medicate the anxiety and the pain.
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People with dementia can get very agitated and don't always understand that someone is there to help them and not harm them.

You're right, your mom can't sit around in wet or soiled pants. Have you considered talking to her Dr. about an anti-anxiety medication? If just the physical fighting could get under control she can complain all she wants but those pants have to be changed.

Your dad just hears his wife in distress and reacts. I think it would be upsetting for anyone in his shoes. Maybe you or someone else can discuss with him the importance of having caregivers for your mom and that they're not actually harming her, that it's her dementia he's seeing and hearing. Does your dad understand dementia? I know he lives with it but does he really understand the disease of dementia and what it can do to a person? Maybe a little education might not be a bad idea for your dad.
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I've heard of some people with dementia who are in mental anguish and they cry out and appear to believe that people are hurting them. I would discuss with the doctor. Sometimes, the person with dementia is in pain, but cannot verbalize it. So, she may be feeling pain, possibly due to the cancer, and can't describe due to the dementia. Thus, she cries out.

I don't know that I would recommend lots of tests, though, I would ensure that she is kept comfortable as possible with medication. If you dad believes the caretakers are hurting her, then I would be careful to explain what is really happening. Is he able to comprehend? Being around that kind of situation around the clock can be very stressful. I'd try to get him away for breaks.
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If the problem is really bad and the situation is completely out of control, if this were my situation I would have her hospitalized, and make her a Do Not Resuscitate. Have a doctor check her mental competency--they can get her social services and under Hospice care for comfort care.
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Yes, anything is "normal" for a dementia person depending on their thought processes. In this age range she/he were raised during a time when modesty was paramount and no one usually saw you naked or discussed toileting. Let her be for now, and tell caregivers they are to respect her wishes when she doesn't want something and be very mindful of when she grew up. ASK what you can do to help her, rather than "telling" her. Let her do as much of the toileting as possible and offer disposable wipes to keep the genital area clean. A mild anit-anxiety med might help, but speak with her doctor about other resources. She probably is afraid and in pain. Best wishes!
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What kind of home health care agency are you using? Are these CNA's? LPN's?

Just a thought, if they don't have any formal training, sometimes they could be handling your mom in an inefficient way that may cause her pain. Although, I must say, while running a home health care agency, there were many situations similar to yours that came up. A lot of the times families would complain and I would send our RN in to see what was going on. She would state that the caregivers were doing everything they could and that it was just a situation where the client would not be happy with anyone helping them. Have you thought of palliative care? I agree with the comment about hospice. They are very good at what they do! If you can have an agency that works on helping your dad out too, whether it just be support or even giving him a break, you have a winner.

Wishing you the best of luck though this tough time.
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My mom had AD. She was stubborn and didn't want to be touched. As I visited many AD facilities I saw many patients who yelled a lot. Discussions with doctors revealed that underlying anger comes out in AD patients when all inhibitions are lost. A mild tranquilizer may help.like Xanex aka alprazolam. There are antipsychotic drugs that also work. I am a pharmacist and did not allow them to be given to my mom, as they leave a person too unemotional and too quiet. A big question to consider is your moms quality of life. Is she ok when people are not touching her? Can she be in a good mood naturally or is she always angry? My mom was pretty calm most of the time. I always went along with her perception of reality, and stopped correcting her all the time, as she could never remember. Fighting an AD patient just makes thing worse.
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Yes,all the yelling is 'normal' for some patients. We have no idea why the patient is upset.It may be anger or fear. They have lost control over their thinking.
I agree that hospice is the very best solution.
And some palliative care to calm her and ease the burden of such a disease.
We are all in these situations together.
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My husband has Alzheimer's, he is on a lot of medication already for anxiety, depression, etc. There are nights that he sleeps well (takes medication for sleep) other nights talks and has meetings like he is at work (in his sleep). Days that he is angry and so impatient, others weak and very mellow. No med change. Why one day OK, another not?
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