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New and Hoping for Advice on Where to Start
Posted: Thursday, November 14, 2019 5:17 PM
Joined: 11/6/2019
Posts: 4

I'm new here and just looking for advice on where to start!

We have suspected my mom has had some kind of manic depressive disorder over the years that has been untreated.  She refuses to go to a doctor to address these issues.  She does occasionally go to the doctor for high blood pressure medicine.  She will never let me accompany her.  When I bring it up she tells me to stop asking because she thinks I think she is crazy.  She is now 71 and I suspect she has dementia and that her mental state is deteriorating.  She is saying that she hears and see people that live in the attic. She has stories of people stealing things, moving boxes, drilling holes in the walls, that she sees eyes in the air conditioning vents, and surveillance cameras/lights in the ceiling, and that “they” are watching her.  I have visited and there is nothing to indicate there is anything or anyone there doing anything.  She recently stated making phone calls to the police and they of course find nothing.  She is also a hoarder, and her house is filled with boxes and unnecessary things that she has built up over the years.  The police have said the calls will continue and will be the first of many.  Her panicked calls to me have also increased. Today included a call that the ppl in the attic were after her.  It is so heartbreaking and stressful.

She lives by herself now after my father passed away 9 years ago.  She has been able to care for herself and drive and obtain groceries, etc.  We have not been on the best of terms as she has had a foul mouth and has been difficult to get along with.  I of course still care and love her, and wish to take care of her.  I am at my wits end and just don’t know where to start with things for her.  I have two very small kids that need me daily.  My husband and I both work full-time, are a median income family that live in a small townhome with no room for her.  We also do not think we can afford assisted living, and just don’t know where to start with caring for my mom as her mental state continues to deteriorate. Any thoughts, advice, input would be so appreciated.

Posted: Thursday, November 14, 2019 5:53 PM
Joined: 1/28/2013
Posts: 2647

Yeah, sounds like you're about to join the club no one wants to belong to -- family of someone with dementia.  In this case maybe complicated by another mental health condition.

Where to start?  Read these threads for the experiences of others who have walked in your shoes.  You are actually ahead of the game in that the police are aware of her and may be your ally when things become impossible.

Your best and only option for care may be a skilled nursing facility which can accept Medicaid after your mother's existing assets have been spent down.  Unfortunately, in most states, Assisted Living and Memory Care facilities do not accept Medicaid.  Don't jeopardize your own retirement trying to care for her, and don't feel guilty about it.  Call the Alz helpline for more specific information in your area.

Understand, you are not alone in this.

Posted: Thursday, November 14, 2019 6:43 PM
Joined: 2/6/2018
Posts: 281

I think the first step is getting a diagnosis so you know what you're dealing with. It's possible that this is treatable. 

If you know she has an upcoming appointment (or if you can tell a fib to get her to schedule one), maybe take this well written information you just posted in your first paragraph and put it in a letter to her doctor? You could add something like "My mother has paranoia about me accompanying her to medical visits or knowing much about her health. I understand you cannot discuss my mother's health information with me due to HIPAA but I felt it critical that you have this information in case she is not sharing it with you. I'm concerned about dementia and/or another psychiatric condition that needs to be treated. I am also very concerned about her continued ability to live alone and care for herself without help. If there is any general information or advice that you are able to share with me about how I should proceed, or if you are able to look into these symptoms and possibly talk to her about allowing you to inform me of any conditions you find, I would be much appreciative." 

Are there any other family members that she would allow to accompany her to a medical visit?

This is just an idea for a "preliminary soft approach." Another option is talking to Adult Protective Services/The Office on Aging (Dept of Health Services) in her city. They can give you advice at the very least and can actually get directly involved if they feel it's warranted. 

Posted: Thursday, November 14, 2019 11:22 PM
Joined: 9/15/2019
Posts: 96

I am sorry, I think you are now part of this club.  Sorry you are going through this.  Use this message board, it has helped me a lot.  My Dad was the same way, leave him alone.  I waited for the crisis and it was a 911 call my Dad made saying he was lost and couldn’t find his house, but he was in his house, then he told the police children are in his house he can’t go in.  The police notified APS, and DMV, which may have happened for your mom too.  What I did is I got a copy of the police report.  It cost me $5 and I got it, super simple.  I was his daughter, even different last night, but they were fine with giving me a copy.  I took the copy to my Dad’s Drs office and I left it for the Dr along with a note that I was very concerned about my Dad’s mental state.  The office also made an appointment for me to bring my Dad in the next day.  Getting my Dad to the Dr the next day was not easy at all.  I just had to say they called me because they couldn’t reach you and you have to go in.  I went with my Dad, he drove, and that was the last time he ever drove.  I had to take his keys at the appointment, I had to remove the guns from his house, etc.  APS did come to my Dad’s house and actually were very helpful.  The lady gave me resources and answered a lot of my questions.  

I would suspect the calls to the police have already alerted APS and DMV.  

I am sorry you are on this journey.  It’s exhausting and not fun, so vent away on this message board.  You are not alone.  

Posted: Friday, November 15, 2019 4:15 AM
Joined: 3/6/2017
Posts: 2209

Welcome Chrissy-

I am glad you found our little clubhouse, but sorry you have had a need to. 

My own dad had mixed dementia layered over long standing behavioral health issues. His geriatric psychiatrist believed he had bipolar given his family and personal history. My DH always swore he was more pf a sociopath. Medication made a tremendous difference for him. 

Ideally you should get your mom diagnosed- preferably at a memory center that has geriatric psychiatry as part of the practice. I found it useful to give dad's doctors a written bulleted list of concerns ahead of appointments. Dad liked his geripsych and would put on quite the show of Mr. Personality during those appointments, so I took to emailing him video clips of dad's more challenging behaviors at home in order that he would get a sense of what dad was like when he wasn't performing. 

If you can not get her to see a doctor, you may need to wait for a medical crisis. If that becomes your plan, do locate the one affiliated with a memory center or geriatric psych ward so that you can take advantage of the time she is in the ER or hospitalized.

Have you driven with her? Does her car look as if she's had a couple fender-benders of scraped curbs and guardrails?
Posted: Friday, November 15, 2019 9:27 AM
Joined: 11/15/2019
Posts: 3

My spouse also has a duel diagnosis.  It turns life into a guessing game.  You never know what to expect.  The manic phase of bipolar can produce some of these symptoms. It would be important to have her assessed by a psychiatrist (not a psychologist).  There are effective meds to treat bipolar.  Treatment for bipolar may take away some of the uncomfortable feelings she must be going thru and give you a better understanding of her behaviors that are related to the dementia.
Posted: Friday, November 15, 2019 10:19 AM
Joined: 1/28/2013
Posts: 2647

Interesting you should say that about bi-polar, because dementia can mimic those symptoms.  The loss of impulse control can look a lot like the manic phases.  We have a family friend who has been exhibiting some disturbing symptoms -- hoarding, loss of emotional control --and has been given bi-polar meds which he is refusing to take.  Which may be a good thing because those things are not so good for early stsge dementia.

I am married to someone on  the high-functioning end of the autism spectrum (think Sheldon Cooper), and I have observed similarities in behavior with dementia also.  The brain is a very complex organ.

Posted: Sunday, November 17, 2019 11:36 AM
Joined: 11/6/2019
Posts: 4

Thank you so much for your words! It has been a rough week and just knowing that I'm not alone and others have dealt with similar experiences have helped me so much in dealing with this.
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