Overwhelmed, confused & need guidance

BooBoo2

My DW has been on this downward spiral for over 6 years & I'm feeling overwhelmed- not sure what to do next. I’ve been trying to do everything at home. My DW doesn’t know who I am, can’t stand living in our house & wants to go home but doesn’t know where home is. The delusion of “a girl” coming into our house started out only in the evening now it’s all the time. She hears them all the time - got serious the other day & said they are going to kill our dog. For over 2 hours she was hollering for them to leave her alone. Finally got her under control using quetiapine & she slept for over 9 hours. Talked to the doctor & he said the next time I need to call 911 & have her transported to the ER & tell them you are concerned about her & my safety. Says this is the best & fastest way to get her treated - could take months to get an appointment. This seems so crazy & cruel. What has worked for other caregivers - go to a neurologist, psychiatrist or geriatrician who specializes in ALZ. I could write so much more but everyone on here knows what I’m going thru -

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loveskitties

The doctor is right about going thru the ER.  Trying to get appointments can take months...it took 6 months to get my Dad's first appointment and he lived in a very large city with lots of doctors.

Wishing you better days.

BooBoo2

Can anyone share what happens when I do take my DW to the ER?

bluegreenjill

My Dad goes to the Neurologist every three months and that does not seem to help him. They added another memory medication but he is still getting worse. Sometimes I think he needs something to treat anxiety because he is EXTREMELY paranoid but when I talk to him about it, he says he does not have anxiety and gets defensive.

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M1

Hi BooBoo. Yes, i have walked this road as have many others here. I would ask your wife's doctor what geriatric psychiatric units are in your area and have her taken to the emergency room at that hospital. You tell them what has been going on and that you cannot manage at home. Be specific about threats and hallucinations. They will admit her, do a medical evaluation, and try to get her on a medication regimen that will help. This can take 2-4 weeks to accomplish and stabilize. Then the social workers at the hospital can help you with next steps, about whether she can come back home or needs memory care.

It is not easy, and my hospital experience was actually very difficult for complicated reasons . but it sounds like you both need it at this point, she's unmanageable for you in the current circumstances. Fingers crossed for you.

Nutty623

Hi, my mother is living with me, my brother and my teen son. She had an apt. Of her own up until August. She is having memories of her house that was sold in 2013 and says she has to pack up and go home. Everyday she asks where I live. Two weeks ago she began hullicinating. She hears and sees little boys and girls. She sets the table for them and puts fruit cups and cheese sticks on them. Constantly asking me where they are- napping, out to play with their parents. Then all my shap knives went missing. When I went for the potato peeler and couldn't find I lost it and yelled at her about the imaginary children. She didn't believe me and insisted she would continue to hide sharp objects from them. I figured out where the sharp kitchen utensils were being hidden and left them. I no longer insist the kids aren't real and just tell them the parents took them or the neighbor took them to the park. She has been more relaxed because she was getting exhausted doing dishes and setting the table. Finally, she decided to go back to school. This week she has been hyperfocused on going home. I try to tell her things in a reassuring manner now. It has been VERY STRESSFUL, nonetheless.

Nutty623

Hi, I was able to see my mother's doctor and he told me the hullicinations are part of the course and there is no medication for them. Then he added I will have to decide how to care for her when she can't shower or use the bathroom independently. Perhaps a nursing home. I went home relieved because at least she can still go to the bathroom independently.

Nutty623

I had my mother taken to the ER in June as advised by police and the doctors did absolutely nothing but keep her overnight and tell me the next day she is fine. I hope you have better luck.

Nutty623

Hi Booboo2 mentioned the hullicinations were getting her upset. My mother's doctor said there are not medications for that but I would be interested to know if he gets a different opinion. My mother's hullicinations create unwanted stress for my mother as well and I had no idea that changing my reaction to them was the answer. She doesn't want to take care of the children because it has been exhausting. She yelled out she wished the parents would spend more time with them. She wailed setting the table was tiring. I spent the last week going along with these hullicinations but tried to say things to relax her. Telling her all the sharp objects were hidden calmed her down or the kids were sleeping over someone's house and then sitting down to have tea with her or watch a favorite show. When she asked about them again, did it all over. As for the dishes I have been vigilant to make sure there are never any in the sink. So the frantic activity has died down a bit

Jo C.

Nutty there are indeed medications that can absolutely assist with quelling the hallucinations.  I am assuming that the doctor seeing your mother is not a dementia specialist.

It may be helpful to get an appointment with a specialist in dementia who can be very manage in bringing relief to your mother who is suffering.

As for my own LO when the dementia behaviors were over the moon; inpatient psych care was necessary.  The dementia specialist spoke with a Geriatric Psych Unit Psychiatrist and she was taken to an emergency room in a med center that had a GeriPsych Unit..  The ER doc knew up front what it was for and the care assessment was put into place.

An RN from the GeroPsych Unit came down to the ER; she looked like any other nurse in the ER. She assessed my mother asking questions and then approved her as appropriate for GeroPsych admission.   NOTE:  The patient must fit criteria for psych admission.

You would be best served by finding out which med centers near you have such a GeroPsych Unit and go to the ER there if things become worse and  go over the top; be very clear and specific about the behaviors and needs and do not get caught up in a myriad of details. She is consistently hallucinating, you are unable to manage her care at the level it has become because the behaviors have taken over and she is not sleeping well, perhaps not eating well, has hidden knives and is often very much agitated, etc. etc..  You MUST give enough crucial information for her to fit criteria to be approved for Geriatric Psych care, so do give them that information if such an approach becomes necessary.  Communications are everything. 

However; from what you describe, it may well be that she can be helped while at home simply by adjustment of medications preferably being prescribed by a dementia specialist.  As said, there are meds that help to extinguish hallucinations and delusions (rigid false beliefs.)

Sending best wishes; let us know how it goes,

J.

lisafrenette

Hi. I hope you are doing better as I write this post.  I am a caregiver to both of my parents, both of who have Alzheimer's. Everyone is correct.  Have the paramedics come.  You can't do this alone.  I am not sure where you live but in MN we have a connection to help you find a better place for your DW called 'A Place for Mom.'  You can look it up on line by typing this in.  My Dad has had two extremely aggressive bouts with his Alzheimer's and taking him to the hospital where he could be admitted to help regulate medication has been very successful.  It is painful but trust me, you are doing the best thing for you and your DW to keep both of you safe. 

They will admit your wife into the ER.  They will evaluate her and start looking for mental health geriatric wards where they can look for infections and start her on medication.  Again, it is hard on you and you are not alone.  In most cases, you will be able to visit her.

Best wishes during this tough time.

Jo C.

A little warning re the nation wide placement business, "A Place For Mom," and like businesses.  My personal experience was negative and other Members here have also shared similar experiences.  With my experience, at first, it was just a bit confusing considering the placement information we got; but as I did my research, (from experiencing the results of their referrals), it became clear.

The business states they are "free," but in actuality they are earning a substantial fee IF a person places a Loved One in a facility on the provided referral businesses facility list; the advisor who is the contact person working with a family for placement also receives a good fee for their success in placement in a contracted facility.  The more expensive the monthly fee at a care facility, the higher the fee paid to the referral business.  This type of  service will provide referral information regarding care facilities only to those facilities that are contracted with them.   One does not get information referral for facilities that are not contracted with them to pay a fee for placement.

I found most highly regarded facilities in our area were not on the list including two stellar facilities that I was aware of.  NOTE:  Many care facilities do well with their business and have no need to use such a contracting business entity and pay a hefty fee to help them get patients for their beds.  In some instances, facilities on the list we were given were "iffy" and some were downright negative.   It was horribly disappointing and worse re the referrals we were given; what a surprise that was after the placement business had touted their services and promised so much; this outcome led to my doing some research and discovering the why's of the dynamics we had experienced.   I did much better doing the placement search myself which is not all that hard especially if one can use a computer.

https://medicaidplanning.org/a-place-for-mom-to-go-broke/

https://www.elderlawanswers.com/elder-care-referral-services-attracting-increased-scrutiny-9119

If one needs a Medicaid contracted facility, using Medicaid coverage, that is not conducive to this type business as the fees are not going to be highly lucrative as private pay placement will be.   If the family can pay privately for a period of time first, then the monetary reward will be higher for the placement business; however; this can cause various difficulties for some families.

Advertising is slick and rather seductive regarding such services and advertising is important to them to attract the families and all that entails.

Just a heads up and a caveat emptor,

J.