Appreciate some insight

Tstovall

I am new to this organization, just joined. I'm in need of some help and advice concerning my mother. A little history is that my mom and I spent 5 and a half months together going to a hospital last year and unfortunately lost my father, he was 84. During this time, I saw some things that I didn't know were going on with her (she is almost 79). For the past 5 years she had been focused on caring for my dad and as my brother and I don't live with them, our communication was primarily on the phone with some visits. During the time I lived with her during my dads' hospitalization, I realized she was hearing voices that weren't there, stumbling through trying to find her words, having huge anxiety, afraid people were getting into the home, and getting very little sleep, etc. I got her eyes checked, got her hearing aides and really thought she was not hearing correctly at the start. I finally got her to go to a dr and she was prescribed an anti-anxiety medication for the daytime and an anti-hallucination medication for night which aids a little on sleep. She passed an MRI and it showed no sign of Alzheimer's. We tried different dosages and they didnt seem to help. She refuses to see a phycologist as people will think she is crazy so the dr suggested a neurologist. She did the cognitive test and 1/2 hour phycologist visit but didnt want to as the MRI says she is fine. They came back and said she has Alzheimers. She refuses to asknowledge it and says she doesnt have it. In the months since my dads death last october, I have made it away for a week to 10 ten days then driven back to be with her which involves sleeping on the love seat in the living space (its a small summer trailer). I end up staying several weeks before trying to leave again. I've seen the audio hallucinations first hand and they are usually late evening, night or first in the morning. She gets agitated with me for not believing her voices and I get so upset with her. We end up arguing all the time and no matter what I say and how I say it she doesnt believe me. She cares for herself with washing, laundry, cleaning. She cooks minimum with usually microwave options and I have to load up the freezer for her when I'm not there to cook. She is beginning to mess up her checkbook and I've had to correct the balances each month the past several. My brother has made it clear he will not get roped into this mess and he cant deal with it. I cant deal either but I'm not going to leave my mom without help. I have finally convinced her to sell her home in a winter State and consolidate. She is currently having a home built that she is excited about but I'm extremely worried that she wont make it there and we will have some financial issues. She keeps avoiding the POA discussion as it needs to be updated with the death of my dad as it was only for them. I even brought her to her attorney out of state asking them what we needed to do and they sided with her and said she didn't need to do anything (they must have mis-understood what she was asking). I'm extremely exhausted and stressed, let alone given up my own life trying to make sure she is ok. Neither of the drs seem to help. The nuerologist didnt give us any information--it was like yeah its Alzheimers and see me in 6 wks. I've since asked about medication for the disease and her aide called and said you can give her "this". I have pushed off doing that as I don't understand pros/cons and what they will do (and I need to be there to watch for the reactions). I really don't know what to do anymore. I call (or mom calls me) around noon each day and I call her around 6pm again. Today my mom thought my dad was being relocated (from his grave) and "they" told her its underway. I spent an hour explaining to her he will never be moved and it's not authorized and she doesn't believe me. She even went as far as to say that she saw the transport when she went to the post office. Now I got a text from the place her trailer is in saying that she spoke to someone whom she told them that "they" (the voices from her refrigerator) that dad was being transported and asked them where the nearest military base was. The people at the park told her she was probably dreaming it and she told them no. So, I'm now figuring out how to get back to her. I'm really doing this on my own. I am single without children and do not have the ability to deal with this and be a full time caregiver--I just dont know how people deal with this and I feel like I'm crashing and don't know what to do. She won't acknowledge any issues so I don't see her every getting real help. I would appreciate understanding how everyone is dealing with this and if there are any resources I can reach out to better understand and medications I should ask the drs about. I'm sorry for the long vent but felt people should get a little history.

M1

Welcome to the forum. I'm sorry you need to be here but you have come to a good place. I am also sorry for the loss of your dad. He was probably propping your mom up more than you realized; this is not uncommon.

Two thoughts: you need to get POA asap, no questions asked, because it is clear that she can no longer make rational decisions for herself. The corollary is that you need to stop discussing everything with her and just do it. You cannot reason with a broken brain, and as you've seen it just elicits defensiveness and resistance. This forum is a good place to learn workarounds. White lies/"fiblets" are compassionate in this setting---say whatever it takes, if you have to say anything at all. The hard part of this is that it upends the normal dynamic--you, like most of us, are probably used to being deferential to your parent, but now the roles are reversed. Think of taking care of a toddler. Reason doesn't work.

It also sounds like, if she's hallucinating, that she should not be living alone. This is very dangerous for a number of reasons, from fire and flooding risks, to falling, to wandering, to being scammed. You are already seeing the financial implications. It is likely going to upend her plans for moving into a new house, but: so be it, you can sell it. But it all comes down to changing the way you are thinking about this, and getting the POA asap. You need to be the one to contact an attorney, not her. You may have to tell her that you are updating your papers too, that is sometimes a strategy that works.

Again I'm sorry, none of this is easy. I'm sure others will chime in.

Tstovall

Thank you for responding. I know the importance of the POA. Logistically it is more than difficult; especially when I have a non-participant as she doesn't think she needs it. She is several States away in the "summer" area and I have to drive her back 3-4 days, and then drive her the 45 min to get her to the attorney in her primary residence area. I have a fear that the attorney will get from her that she doesn't want to do this and all the travel and heartache will be for not. I will probably do it regardless (and soon), and tell her something about cleaning up the yard at her primary residence that is for sale to get her to drive back with me---but this is sooo difficult. It's definitely on my mind 24/7 and everything is just taking soo much nowadays.

I'm really not sure what to do about the living situation. She doesn't like people in her space (let alone thinking people have been there)---she has always been that way her whole life and this isn't just an Alzheimers thing. We have never lived together (other than me on a loveseat in her home when I'm with her). I recently retired early almost 2 years ago thinking I was going to travel and work part time doing things I love until I hit full retirement age--neither has come into place. I don't have a house in the burbs to accommodate us moving in together (and quite honestly, I mentally am having a hard time dealing with anything anymore). It really bothers me when people say to me "your going to have to make changes and insinuate that we need to move in together". I am not qualified or equipped to take this on myself---and it breaks my heart when people that don't understand make me feel like I'm some evil person. How to you enact a long-term care policy (never mind legally) when she doesn't want anyone there and doesn't think she needs it? How do you convince someone that they need help when they don't think they do? I've thought about how to approach the dr in the next appointment to explain to her what the diagnosis means so I have someone else besides me telling her. I'm open to any suggestions.

Jo C.

Hello Tstovall and welcome to this Forum. I am sorry for what is happening and can understand your confusion and upset as well as the significant stress this is causing.. M1, who is a physician by the way, is correct in the information provided. Your mother is not safe in her environment and really needs 24 hour care. That will take a bit of planning.

The key to this is to first get your own self into better shape to deal with this. Knowledge is power and you desperately need to gain knowledge re dementia very quickly. It will all come down to how you learn and deal with all of this without being part of the problem yourself due to lack of knowledge. We ALL have a big time learning curve; I certainly did and once you know more and understand you will find ways and work arounds to having a better outcomes. it will take time, but eventually all will be set into place. This is going to be a long Post, apologies extended.

First helpful thing would be for you to quickly and thoroughly educate yourself to dementia and the various dynamics. That is a must so you can see what is on your plate a bit more clearly. ALSO: An MRI most often does NOT show Alzheimer's Disease; an MRI is not a measure to confirm the dementia.

ALSO, do NOT mention to her that she has dementia or Alzheimer's; she will only block you and dig her heels in even more thoroughly. You cannot reason with her; she has no ability to utilize logic, reasoning and judgment; her brain is "broken," so to speak and will never recover. She cannot accept and reason as you do; her personal world is now different and is not involved in real world reality and she is totally unable to see or understand anything different. Do NOT keep discussing business and arguing with her and expecting anything else other than hostility and refusal. She cannot accept nor process no matter how you try. The use of fiblets is now necessary as well as getting legal advice from an Elder Law Attorney Specialist; that specialty is important.

Do speak to an Elder Law Attorney in her state and ask about all of the dynamics and what to do to get her to help and to have legal options to care for her. If your mother still will not do Estate Planning so you get a DPOA for Health Care as well as a DPOA for Finances, then you will need to speak to the attorney in your mother's state about applying for Guardianship or Conservatorship over her person and business. That will involve the court and she will be able to have an attorney for herself, but with her behaviors and medical input, it is a very good chance at your getting the Guardianship which will enable you to do all and sundry that needs doing whether she approves or not. Do NOT tell her anything about that dynamic in advance or threaten her with it. Hopefully, it will not be necessary.

If you can get to the specialist(s) that did the exams that confirmed the Alzheimer's Disease diagnosis, you can request the specialists and other providers to write a letter outlining the presence of Alzheimer's Dementia AND that your mother is no longer competent to format her own plan of care and is no longer competent to conduct her business. This will be a good document to have to present to the professionals you are dealing with. DO NOT SHOW THIS TO YOUR MOTHER OR TELL HER ABOUT IT - THAT WOULD BE A DISASTER. If you can obtain such documents, that will also assist the Elder Law Attorney.

If you are going to go back to the Neurologist with your mother in six weeks, then before the appointment, write a detailed memo outlining all the changes in behavior, function and all; as well as the dangers; be sure to include the hallucinations and delusions (false beliefs). Get that to the doctor to read BEFORE the exam so he/she can do an accurate assessment. Let the doctor know that the words dementia or alzheimers sets her into a tailspin and she refuses all help when those words are involved. Let them know of the danger at home and refusal of any care. If this information is in the specialists hands, then he/she may be able to write that letter outlining your mother no longer being competent to format her own plan of care. Make copies of that letter and guard the original very carefully. And as said, do not let your mother see that as paranoia would probably become severe.

It would be good for you ALONE to make an appointment with an Elder Law Attorney in your mother's state and get all the information you can re the legalities and what you need to do to position your mother and yourself as best as can be. Do let him/her know how severe the dementia and danger is and how she can no longer care for herself but refuses any care. Be SURE you write down a journal of all the danger and things lacking so you do not forget to communicate it.

If you want to try and do a DPOA, you can try BUT do not call it a DPOA; which says, "Power," instead, mention you need to do Estate Planning and the attorney said he will do two without charging more and she can do her Estate Planning at the same time. Of course clue the Elder Law Attorney In first. Worth a try. She may still resist and refuse; if so, then discussing the Guardianship becomes very important.

This will not be an easy fix; it will take some time, but having an Elder Law Attorney guiding you in your mother's state can keep things more even by not making mistakes.

Your question as to how to enact care will hinge on getting help from the Elder Law Attorney. Once steps are taken, then all will begin to fall into place in tincture of time. I am sorry there are not easy answers, but it will eventually be resolved. I did not have an easy time either and oh my; no DPOA, it took time but it got done. The Alzheimer's Assn. has a 24 Hour Helpline open 365 days a year that can be reached at (800) 272-3900.. There are no fees for this service. If you call, ask to be transferred to a Care Consultant. The Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are very supportive, good listeners and a good place to get feelings and concerns out. They also have information and can often assist us with our problem solving.

NOTE: If your mother becomes ill and needs medical assistance, then her doctor or even the ER may be able to be of help. Privately, out of hearing of your mother ask the doctors about an inpatient Geriatric Psych Unit nearby. This is an option. It will take a physician to declare she is a danger to herself or others and she is a danger to herself by her lack of care and refusal to permit assistance. If admitted to GeroPsych, she can be assessed on a 24 hour continuum and medications initiated as appropriate. If necessary, for her well-being, she can be transferred to a long term care facility directly from the hospital. If she become ill and needs to go to the ER; you can speak privately to the ER physician and let him/her know the severity of the dementia and danger in the home - they can make arrangements from the ER to a GeroPsych Unit, but will need an accepting psychiatrist to take her as a patient; that can take a few hours, but she will be safe. If she needs medication it can be provided for her comfort.

It is a matter of one step at a time and it is really difficult as we begin to learn, but it is also surprising that once we get started, things actually begin to work well for the best.

Let us know how things are going, I send best wishes to you from one daughter to another.

J.

Jo C.

Here is a link to a writing re dementia; some of this will explain some of your mother's dynamics; other info therein will be a little later as your mother's dementia advances; it is good though to catch the bits that explains the changes in your mother's brain:

https://www.smashwords.com/extreader/read/210580/3/understanding-the-dementia-experience/Huge

Alzheimer's Assn Info: Suspicions and Delusions - also see the side bar for more information:

https://www.alz.org/help-support/caregiving/stages-behaviors/suspicions-delusions

Tstovall

Joe C - appreciate the first link, extremely helpful!

Tstovall

Would love any links for caregivers that live outside the home, what we should do to help our loved one, how outside help is introduced, etc.

Jo C.

Hello again. We are permitted to Post on any of the Forums; this particular Forum is not as well traveled as some of the others.

To get more experienced input, it would be helpful to place your inquiry/request on both the Caregiver Forum and also on the Partner/Spousal Forum. Even though your situation is not one of a spousal relationship, there is much experiential wisdom to be gained on that Forum and all are welcomed no matter their relationship to the person with dementia.

J.

Anonymousjpl123

So sorry you are going through this! As others have said, definitely get the POA. What worked for me is saying I needed to get all of my affairs in order, and this was just one of many things we were updating. If she doesn’t have a living will, you can say you also want to update that. Include it as a list of things that you are working on, and it may not seem like such a big deal.

I also agree - meet with one (or more!) elder care attorneys so you have an idea of what you’ll need to bring etc.

One other piece of advice: PLEASE don’t feel guilty about not having your mom live with you. My mom begs me to let her live with me every week, and I too feel the pressure from people that I’m somehow selfish for not doing this. It’s not feasible: I live alone, have no extended family around to help, and she would need to be with someone all day. Most importantly, her living with me would absolutely break me. Regardless of anyone else’s opinion, that is a totally legit reason. Please don’t ever feel bad about taking care of yourself through this - it’s the best thing you can do for you and your mom.

Quilting brings calm

Deleted as the comment I replied to ( and reported) has been deleted. Or at least has been blocked from me.

Tst- welcome to the forums.