How do caregivers cope with a dementia/Alzheimer's parent with psychosis?

Anxious - you are not equipped to care for your mother's serious mental illness. You know that and said so yourself: "I'm overwhelmed and I feel like running away from the situation and I don't have the strength to be her caregiver..."

You don't have to walk away, but you need to scale way back. Only help as much as your mental and physical health allows. Don't expect other family members to help or visit her. They are probably very ill equipped to deal with her and want to steer clear.

It seems to me your mom should be in a lockdown institution so she can not wander. It would be very bad if she got lost and could not be found in time. Several years ago, a dementia person in my city got lost during the winter time. It was so cold, she hid in a public bathroom to keep warm. By the time people found her, she was dead. Very sad for her and her family.

The next time your mom ends up in the hospital, you talk to a Social Worker there and explain your mom's condition and that she wanders and can no longer live alone. Ask the SW to help place your mom in a home. Tell them (and stay firm) that you are not able to take care of your mom.

Some things my mother did because of an undiagnosed / then diagnosed but untreated UTI:
*chopped up her beautiful Christmas cactus
*destroyed the metal stand it was on
*hauled my father's dining chair out the door, down the steps, and was about to throw it into the canal behind their house when he found her
*sprayed dad and the hospice nurse (who should have recognized the UTI, grrr) in the face with Raid
*poured dry ramen noodles into the kitchen sink drain then poured boiling water down the drain (she said she wanted to clog the drain)
*locked herself in the bathroom one day and smeared feces all over the place, shoved everything she could find down the toilet (again, she said she wanted to clog it)
*smeared feces throughout the house -- walls, floors, carpets, drapes, furniture etc.
*covered her body with scotch tape
*put little pieces of scotch tape all over their vinyl floors
*ran around outside yelling while naked from the waist up
*the culminating event was when dad woke up with her holding butcher knives over him and saying, "Everyone has a day to die, today is your day." That's when he finally called the police (after getting the knives out of her hands) and then he finally told the ER that he could not bring her home again.

This all happened in a span of two or three weeks and involved three ER trips. First trip they did test for UTI (culture that takes days, not the quickie test). Dad brought her home. Second trip was the day after the positive UTI result came in so they started her on IV antibiotics, then sent her home. She refused the antibiotics at home. Third and final trip, he did what has the horrible name of "ER dump." She was placed in a psych hospital, never given any additional antibiotics for the UTI, and they declared she had dementia. No one that knew mom prior to this, including her hospice crew, ever thought she had dementia. I've settled with myself that either this was just more of the untreated UTI or that perhaps she had a hemorrhagic stroke during the same time period.

Mom died three weeks later in a nursing home.

Does any of this look familiar to you? Do you see similar behaviors in your mom? Consider checking for the UTI with the culture that takes days to come back, not the quickie test. Even though your mom has already been diagnosed with psychosis, that doesn't mean all of her recent actions can be blamed on that alone.

And do step back and admit to others what you've already admitted to yourself, you don't have the strength to be her caregiver. The very best thing you can do for mom is get her the care she needs, which is beyond your capabilities. It is an act of love to make sure a person is safe and well-cared for, even if it means we have to step aside and let others do it and even if it means the person we love so much becomes angry with us. It is not easy to do. It will probably break your heart, to be honest. But you will have the peace of knowing you did what was best for her.

If your mother has dementia and becomes psychotic, there are no good or right answers. Don't blame yourself for her situation.

As Polar suggests, the next time she is hospitalized, go immediately to Discharge Planning and tell them that she a vulnerable who lives alone and that you are unable to provide care for her.

Do NOT sign her discharge papers or provide transportation. Make them find placement for her.

AnxiousFear, when was the last time that your Mom was tested for an Urinary Tract Infection [UTI]? For some reason doctors tend to over look this. An UTI can mimic dementia issues, and cause all types of unusual behavior, in an older person.

The test for an UTI is fairly simple. It can be tested at your Mom's primary doctor's office or even urgent care. If it comes back positive, antibiotics can help control it.

Dear Anxious:

Our situations are very similar. I am 58, my mother just turned 91. My mother has long had serious mental health issues, though she was able to keep the problem (originally, a fantasy romance) compartmentalized so she could work. Now she also has progressing dementia.

The 3 responses I see so far are intelligent ones, including the urinary tract infection--my mother had one last time she was hospitalized with sky-high hypertension, and the UTI really did worsen her madness.

Do note, some of the responses I received here when I first joined were from people who were not only not personally experienced with this particular set of problems, but the responses were also callous and discouraging, telling me not to do things that I really should have done right away. Take what you find encouraging + helpful, and ignore the rest.

Big caution: I have been working a full 17 years to try to get psychiatric help for my mother. It has been my experience that mental health care in the U.S. is very poor, because mental illness still is so misunderstood and still very much stigmatized. I have sought help from the most prestigious institutions down to local elder services and even police, and none have come through. I've been just appalled at some really disinterested and unprofessional professionals, many with advanced degrees.

I've ended up living with my mother for the past number of months to protect her from her self-destructive impulses, e.g., giving away 1000s of dollars to telephone scams. It is a very stressful arrangement.

I wish I could share with you the benefit of my years of wrangling with this double-whammy of a problem, maybe save you a few steps, but I don't know if my experience in New York is relevant to where you live, or how to provide my contact information.

If you want to get in touch, perhaps agingcare.com can get in touch with me?

Wishing you all the best as you trudge your challenging road!

My mother is being prescribed Seroquel, Lexapro, and Remeron. It took time for her doctor to find the dosages for each that helped the most. She has moderate dementia and was combative and delusional. Both of those symptoms have greatly eased.

The previous poster is correct: UTIs can cause the elderly and/or those with dementia to have behavioral changes. In our mom's case, when she has a UTI she is combative, super sleepy, not interested in reading (which she loves), and her appetite is affected. We know the signs for her, so if she exhibits any of those symptoms, that's something we look at right away.

You are in a tough situation with your mom. I have been there many, many times. Very sorry you and she have to go through this. My mother signed over POA to my sister before she was diagnosed so that's one thing we don't have to deal with. But yes, it's really difficult to deal with all this and my heart goes out to you. I would suggest you contact her doctor and let him know what's happening with your mom. Take care, honey.

AnxiousFear,

Don't get too far down the rabbit hole of making your own diagnosis of UTI, forms of dementia, which medications may or may not be helpful, etc, but DO communicate your observations and concerns FRANKLY and OFTEN with your mom's healthcare providers! If you feel uncomfortable discussing this in front of your mom, call or send an email or snail mail to her doctor. Accompany her to doctor appointments if you can. This may take more than one medical visit. Yes, a crisis like hospitalization or ER visit might be the perfect time to say you can no longer keep her safe.

Dementia or not, it is important to have POA set up before someone becomes incapacitated. Be sure you or your brother truly WANT to become POA. In Michigan, POA is not a magic tool that suddenly allows you to place someone in assisted living and make decisions against their will. The person has to give permission to "activate the POA" while they are still competent, or they have to be "declared incompetent"... which for me took years for my dad, even though I had POA, and a neuropsychologist and his primary care doctor were documenting the progression of moderate to severe dementia over many years. If POA is not clearly documented, then a judge or court may get involved.

Maybe your mom would agree to set up POA if she realized that it doesn't go into effect without her permission or without doctors and/or a judge getting involved. My dad seemed persuaded by my saying "Dad, if you fell and hit your head and were unconscious, would you want me to be able to make decisions on your behalf until you woke up or would you want a total stranger judge to make decisions for you?"

I, too, had a lifelong anxiety provoking relationship with my father. What I found most helpful was amazing support from my husband, the AgingCare Forum, my dad's primary care doc, a Homehealth team that came after my dad fell (100% covered by Medicare), and a trip to the E.R. when he was especially paranoid and confused. In the E.R. a social worker declared that he couldn't live alone any more and helped me have my dad admitted to a 24/7 memory care home. AFTER he was in the memory home I still had to take him to the neuropsychologist for another evaluation and from there have two doctors sign that he was no longer competent. Unfortunately, there is no easy anxiety free way around this, so keep reaching out, and give yourself lots of grace. Peace to you!

I am so sorry you are going through this. You are in your 30’s! This is the time you are laying the foundation for your life that will determine your next decades. Financially, emotionally, socially, all of it. It’s time to save yourself. Please don’t let your mother’s illness derail your future. Start planning your exit, and that doesn’t mean you are abandoning your mother. It does not make you uncaring or a bad person. NOBODY can live with this situation. NOBODY. Her care needs are beyond your ability to meet them. It’s really that simple. Think of it like this, if your mother had a heart condition that required surgery, would you try to do the surgery yourself or beat yourself up because you aren’t a surgeon? Of course not. It’s the same with the brain. Her brain is broken and has a disease and you are not trained to fix it.

Your exit involves getting her placed where she is safe and cared for so you can live your life and visit her. After she adjusts and is properly medicated by professionals on a daily basis to control her psychosis you can visit and be a daughter to her.

Let her be. She will not accept help and is combative. You can’t do anything about that. There will be an event that lands her in the ER and that can trigger placement. When someone calls you or your brother to come get her, or tells you they are releasing her, you tell them that she lives alone, you will not be caring for her, and she is an unsafe discharge. It may take a few of these incidents but at some point APS will get involved and they will place her for her own safety. She pays for this out of her own money, you and your brother are not financially responsible for it. No money? They will apply for Medicaid on her behalf. If she owns her home you will have to figure out a way to sell it, which may involve petitioning the court to be her guardian so you can act financially on her behalf.

This is a very tough journey for all concerned, it sucks, and nobody asked for this least of all your mother, but you have to save yourself.

I’m not clear if your mother has dementia, psychosis, dementia related psychosis, both or something else and I’m not sure you do either if she is being so resistant about you being involved in her medical care. It’s just my speculation here but if she has landed in a psychiatric hospital 3 times, each time coming out better and then spiraling back again they are obviously doing something that helps her get better enough to go home. I’m guessing again but medication seems likely and she is probably being discharged with things to do, take meds, check in with PCP and get set up with out patient psychiatry or Nuro psyc and not doing those things. This is a very typical scenario for some types of psychiatric patients who don’t have and accept support from family. The hospital levels them out and refers them to longer term outpatient care to continue tweaking meds and following the patient but this doesn’t happen without the missing piece of people who care understanding what’s going on. You may not be able to do anything and need to be prepared for that but your best shot is probably to make yourselves and your desire to help known to the psychiatric hospital, try to visit and either have them help suggest she include you in her treatment when she’s more lucid and leveled out or do so yourselves the next time she comes home leveled out. Start with MPOA or Health care proxy, just have her list you with her providers and the hospital if that makes her more comfortable and work your way up from there. I don’t know how you can help her if the only information you get about what’s happening is from her and she won’t let you participate in her medical care.

Im also not clear about what help she needs when in her rite mind so to speak, does she have other health issues that require assistance or is it just helping her settle back in every time she comes home from the hospital? I ask partly because in thinking about wether she should move and where it really depends on her needs and issues. Wether it’s age related or not she has a brain disease by the sounds of it but senior living facilities may not be appropriate if her real need is related to psychosis, that may take a different set of professionals and that may even mean a team of professionals that work with her staying in her own place. These are all things that again come back to being able to dialogue with doctors with and without her in the room if need be. It’s easy to let the constant fires (emergency’s) as I call them consume you and your life, the hard part is stepping back to recognize that there will always be another fire, putting this one out won’t resolve everything and the state of constant panic will become normal if you let it. You and your brother not only shouldn’t but you can’t fix everything or put out all the fires. By trying to do that you aren’t doing mom any service and your simply burning yourselves out. Your mom needs help and it can’t just be you and your brother doing it, that isn’t working. It’s going to be hard and painful if your mom refuses to cooperate but even though it’s her brain creating that, at least partly, you can’t accept any responsibility for her refusal as long as you’ve given it your best shot. Picture yourself in your mothers shoes, would you want your daughter to give up her 30’s to feel like a failure taking care of you? Would you want her feeling the way you are feeling? Think about doing what you would really want your daughter to do. I would want mine to help as much as she is able coordinating help but not disrupting her life or putting it on hold to be all the help.

This is a lesson I’m still learning, I will also say that there have been some things on this journey I would never change. My brothers and I have spent quality time together, my brothers, mom and I have spent quality time together. We are connected far more often because we share the responsibilities for Mom & I wouldn’t trade that for anything. Recognize the pos’ s

In Pennsylvania, gaurdianship is not always long uphill battle. My mother obtained gaurdianship of her mother with a one day court hearing. She hired a lawyer and the lawyer hired a doctor. The doctor was my grandmother's pcp. He examined my grandmother and then the doctor testifed in court to the judge as to my grandmother's competency. My grandmother attended the hearing. The judge question both my mother and grandmother. I attended as moral support for both my mother and grandmother. That is how I know what happened during the hearing. After obtaining guardianship, my mother only had to make a periodic report to the court as to how my grandmother's money was being spent. This protected both my grandmother and my mother from relatives looking to get money from my grandmother or accusing my mother of "stealing" any of my grandmother's money. As gaurdian my mother also was able to preplan my grandmother's funeral. The cost of the court hearing - lawyer fee and physician testimony fee came from my grandmother's own money as did the funeral plan payment. My grandmother had dementia and was easily taken by relatives asking for money. The gaurdianship stopped all that. Relatives became very angry with my mother but she endured the anger and did what was best for my grandmother's well being and care.
Doing so legally is the way to go especially when other family members are causing grief for the caretaker.