Mom Won't See Neurologist

nikopapp

Hi All,

 I'm new here and things have spiraled quickly.

I noticed some fairly large red flags 2 years ago and set up a neurologist appt for her.

Flew out and took her, and she was at the time willing to go, and open about things.

That was November 2019.

Her mother died at 69 from Alzheimer's, and was in an MC for a year or so prior to her passing.

That was in 1996, and ever since my mother has been terrified that she will get it.

So she was aware that she was having some issues.

Enter Covid, and I was unable to see her.

We all got vaccinated (she lives with husband, my stepfather) and I began asking when it would be ok to visit.

She wouldn't give any real answer, and I talked to my stepfather one day finally.

He told me she had changed and he was worried about her, and that I should come.

I flew out (I live in CA and she is in NC) and made a neuro appt.

She found out about it from the reminder call the day before and called me.

Told me she wasn't going to go at first, was very upset.

I talked her down, and she agreed to go.

Well, when my plane landed I had texts from my stepfather that she cancelled the appt that morning.

I tried making another one, but she flat out refused to go.

Over the next 3 days, she continually lost it on me and stepfather.

She was not the same person I had seen a year and a half ago.

At one point she pulled a knife on me and told me not to come near her.

It came to a head yesterday. 

Stepfather called and said she pulled a knife on him and demanded he leave.

Made him give her his keys to the house, and he grabbed a few things and left.

He was apologizing repeatedly to me, but said he can't take it anymore and she has been worse and worse and he has gotten an hour of sleep a night in the last week.

I had planned on going there at the end of the month and was prepared to do a wellness call if she was aggressive, but I had to make the call yesterday.

My stepfather is 75 and has cerebral palsy, and mother has always somewhat bullied him.

So now I am being told that they will do the hold for her, but that they cannot diagnose her.

This was a big reason for me doing it (besides the fact that she isn't able to be alone based on what I saw 5 weeks ago).

I don't know what to do from here if they won't diagnose her.

She couldn't find her phone or her keys so she isn't able to contact anyone and doesn't know phone numbers or anything.

I am trying to figure out when to go, but I don't want them to let her go home alone.

I have POA luckily since she did that a few years ago knowing this could happen.

I have researched many, many hours, and spoken with professionals.

Has anyone been able to get a forced diagnosis?

Jenflex

Hi Nikopapp. I am so sorry this is happening. It sounds just awful. I am glad your stepfather is out of the house, and that you are looking for support, including from this community.

It sounds like you have contacted law enforcement. When they do the hold, hopefully you can at least get the ball rolling.  With POA, you may be able to place her in a MC facility pending more testing. And, the hold/hospitalization should be helpful with regard to getting some meds on board to perhaps stabilize things a bit.

Again, I am so sorry this is happening. Best wishes for a good outcome.

Quilting brings calm

First -repeat the following on a loop to all personnel wherever it is she is currently at- I cannot take care of her. I do not live here.  My stepfather is unable to take care of her and is afraid of her.   Refuse to take her home.  She will need to be placed, evaluated, diagnosed and have her medication properly determined.  

While that is being done, search for a longer term place  for her.  That will  be hampered by the fact that she pulled a knife on two people. 

Third- please breathe,  this is a marathon not a sprint.  It is also not anyone’s fault.  Not yours and not your step-fathers.    

We are here to  give virtual hugs and to listen while you vent.  

terei

I am not clear on exactly where your mother is.  I am going to assume ER or hospital. Quilting is right; keep repeating that she cannot come back into the home, that you want her transferred to a geriatric psych ward...just say it over and over.

She should be held in a ward til she is diagnosed, medicated + not acting out any longer.  At that point, she should be placed in an appropriate facility...I assume memory care, directly from psych ward to MC, no going home.

Clearly her husband cannot care for her + neither can you. At this point, I would place her near where she is living now til you can determine whether you want to have her closer to you or.....stay where she is + manage it from your location. Start making calls to facilities now so you are at least aware of availability of rooms.

To others:  any time a PWD threatens bodily harm, they should be taken to ER + then to geri psych ward.  It is the perfect opportunity to have them diagnosed/assessed without getting their agreement, which is sometimes problematical.

nikopapp

Thank you for the responses-

I have repeated to all staff that no one can take her, and I was adamant that she could not be alone at home.

She is getting transferred to geriatric psych currently.

I am looking into facilities in her area, as bringing her out here near me is just not a plausible option nor do I think she would benefit from that.

It was a shock to go from thinking I may have to go out in a couple of weeks to call for the wellness check, then she would be able to be at home and have in home help for now- to such a sudden turn and now she cannot go back home.

She handled all of the finances and anything to do with the house, so that throws another wrench in that now I have to take care of that stuff suddenly.

I can and will, but my poor stepfather has turned his phone off and is non-responsive to anyone since Tuesday when he text me he was going to bed.

I don't know if I will have to sell their house and move him somewhere, or anything just yet.

Such a drastic change so suddenly, and it is so hard being across the country and I have relatively young children that I am stay at home dad for.

Thank you all for allowing me to vent and your guidance and help.

I'll update back when I can.

jfkoc

   You are in a very difficult position but you will get a lot of support and info here.

My suggestions would be to 

check that the POA is durable

check in with your step-fathers family...he may not be able to live alone

get current information to her PCP     

tell yourself frequently that you are doing the best with a nearly impossible situation

nikopapp

Thank you jfkoc-

Yes, durable POA.

My mom knew she could get it and luckily she did take care of everything in advance years ago.

Burial plot, eulogy, trust, POA- it's all solid.

I went through it all when I went there in May to make sure and find out what, if anything, I needed to take care of.

Spoke with stepfather today and asked him to think about where he wants to be- I know he cannot be alone as well.

Both parents have long term care, so I am going to look into AL for him as well.

She was transferred to geriatric psych early morning and I am going to go out Sunday to visit her Monday, and to take care of finances and get everything sorted at the house.

Stepfather will come to meet me and we will go over everything.

He isn't ready to see her, nor do I think it's a good idea for either.

I told him to think about what he'd like to do and I will support and help him with whatever he chooses.

I have anxiety about seeing my mom, but need to.

They say she is denying dementia and what happened with husband, but I asked and they will diagnose.

They said I can request an MRI, and that is what I want the most, and they will do it.

Said she is so sweet, walking around, and ate.

Not a surprise, as I know she wants to leave ASAP and this is what every doctor has told me always.

Such a problem for getting her diagnosed and helped, everyone thinks she is so sweet and nice.

Not to say she isn't, but no one believes the anger and irritation that she has at home.

So frustrating.

I am now letting go of the anger and feeling for her, being in an awful situation that she couldn't help and she thinks she will be going home soon.

Trying to cope with the heartbreak of it all and having to be the one to do this.

Thank you all for your support and help.

M1

Nikopapp, you shouldn't feel obligated to visit your mom on the psych ward, they may discourage it or limit visitors, especially if you are a trigger for her anger. Especially early after her transfer. You should read about anasognosia, which is part of the disease-different from denial, she really doesn't recognize her deficits. Also, I understand wanting the MRI, but imaging is not usually diagnostic, it may not show much so don't be surprised if that's the case.

Glad she's safe and getting care, and that her papers are in order, that certainly helps. Good luck and keep us posted.

harshedbuzz

nikopapp-

You are amazing managing so many moving pieces at once while keeping your eye on the bigger picture. Strong work.

My dad was a bit like you describe your mom's behavior. He could showtime to beat the band. On one hand this made him a challenge to treat given how well he could pull himself together for a visit with his geripsychiatrist. At home he'd be verbally aggressive and non-cooperative but in the office he'd be telling jokes, in Yiddish, with her Israeli-born doctor. Dad was a little Irish guy who looked like the son of a garden gnome and Santa Clause. I took to emailing his doc short videos of dad acting out at home so he had a truer sense of what we were up against.

The other side of this behavior, for us, was positive. Once we placed dad into MC, what remained of his personality drove him to be polite and cooperative with his caregivers. They saw a very different side than we did.

HB

jfkoc

"They say she is denying dementia and what happened with husband, but I asked and they will diagnose."

Of course she is. Are they actually discussing this with her?????

Please know about the protocol for diagnosis and make certain they follow all steps.

nikopapp

She is getting evaluated today.

I spoke with Mom asked her how she is, and she said she couldn't eat the food there and she is worried because of her low blood sugar.

I told her that her labs actually showed elevated blood sugar, so that isn't a problem.

Nurse told me she ate breakfast and lunch-

She was telling me that she is worried that stepfather will take all the money and wanted to talk to her banker.

I told her I'd come out to visit if she wanted me too, and she said "I'm sorry, who is this?"

She is telling everyone and me, that my stepfather has been horrible to her and she was acting in self defense because she was scared.

I absolutely know this to not be true.

She scored a 23 on the MMSE they did - in June at her PCP's office she scored a 27.

Scored 30 when I took her in November 2019.

They are aware that she is very aware, and trying to conceal what is going on.

I asked to do all steps for evaluation and diagnosis so I can at least do something and get things going.

So the journey continues....

towhee

Often, one of the first things persons with dementia have trouble with is bill paying, either not paying or paying more than once. Since your mom has been in charge of the bills, it would be a good idea to first check the status of her long term care insurance and then her property tax. Even if you see where the premium was deducted from her account, check further. Every time my LO got a premium notice she wanted to cancel the long term care ins because it was too expensive. Also, some banks and financial companies will not accept your DPOA, either because it was signed too long ago, or they want their own form. It is best to check this out as soon as possible too. If she has her social security direct deposited into her bank account, some advise to leave that arrangement alone and just set up another account under the POA title into which you would immediately transfer those funds.

I hope the proper medication and care can help your mom.

nikopapp

Yes, that is also why I am going, to get into her computer and go over all the finances with my stepfather.

I want to go to the bank and get on the account and have everything I need to take care of it all with him.

They both have long term care, and I need to find out everything about that as well.

Social worker called and I am meeting her on Wednesday.

Again, thank you so much for the guidance and support.

Iris L.

nikopapp wrote:

She was telling me that she is worried that stepfather will take all the money and wanted to talk to her banker.

Paranoia is common.

I told her I'd come out to visit if she wanted me too, and she said "I'm sorry, who is this?"

Also common.

She is telling everyone and me, that my stepfather has been horrible to her and she was acting in self defense because she was scared.

Again, paranoia.

I absolutely know this to not be true.

They are aware that she is very aware, and trying to conceal what is going on.

She doesn't sound aware to me, she sounds like she has anosognosia and paranoia.

I asked to do all steps for evaluation and diagnosis so I can at least do something and get things going.

-----

It will help you to learn as much as you can about the characteristics of dementia.  Then you will know where the professionals may not be up to date. Keep reading and keep asking questions. 

 Iris L.

Cynbar

Long term care policies differ widely, but many (if not most) have a 90 day elimination period. This means that you will have to pay privately for the first 90 days. Read their policy carefully and don't hesitate to call one of the company's representatives for clarification, but be aware of this while you are sorting out their finances.

I am a medical social worker myself so I have great respect for my colleagues. But be aware that the social worker you will meet with works for the hospital. Some are more determined than others to push patients out, not necessarily to the best placement. You should be proactive and contact the local memory care facilities, which it sounds like she needs. The social worker will be helpful, I'm sure, but won't advocate for your mother the way you will.

I don't think anyone has mentioned this yet, so I will ---- all of you might benefit from hiring a geriatric care manager in your parents' location. This person is an experienced professional, usually either a licensed social worker or nurse, who would evaluate the situation and help you make a plan. The care manager also would continue to monitor and provide assistance, basically become the on site coordinator of their care. This is a private pay position but can be very helpful when family is far away, doesn't know the local resources and won't be there to supervise. Ask the social worker or your parents' doctors for a recommendation, or Google it and see what is available where they live.