Recording someone with dementia

ronsalk

Registered User
Thank You Amy, I am in the U.S. and one of the issues is that she will have to pay for a specialist visit according to the type of health insurance she has. Not that she can't afford it but she is very, to put it mildly, "Thrifty", and since she doesn't believe there's a problem, she doesn't want to "Waste" the money. I've told her not to worry, that I will take care of any co-pay there may be but still no go. I will continue to work on it. Your advice and comments are much appreciated.
 

ronsalk

Registered User
Hi there
Before my mum and dad were formally diagnosed and they spoke harshly to me or others, I would pick them up on it, all to no avail. At that time I couldn't understand, why THEY couldn't understand what they were doing. Over time and with more knowledge of dementia I learned just to let it go as (a) they don't realise that they're doing it, and (b) will promptly forget that they've done it in the first place.
Now, when dad tells me that mum's going to punch me in the face if I don't take her home, I just ignore it and humor him. It's difficult I know, but you just have to keep plodding on until you can get a result.
Recording her would be a good idea but only to highlight to professionals what her true behaviour is like.
Is it possible to arrange for the psychiatrist to visit your mum at home? Our community consultant psychiatrist came out to assess both my parents at home which made things so much easier. If you can be there too you can keep him right on her true behaviour (when she's out of the room!)
Hope this helps.




I am afraid a psychiatrist to the home is not an option here in the U.S.
 

Bod

Registered User
Aug 30, 2013
1,958
0
I appreciate the feedback and have nixed the idea. I am still faced with the challenge of getting her in to see the neurologist. She has agreed once and I made the appointment but when the day came she refused to go so I had to cancel. Does anyone have any ideas that might be of help? it will take a couple days from the time the appointment is made 'till the actual appointment.

Don't tell her!
Make the appointment, go for a ride out in the car, "just got to see someone, who'd like to meet you"

Bod
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Ronsalk, Bod's advice is what I was going to say. You make the appointment and give the doctor's office only YOUR contact info (so they won't call her). Then don't tell her where you are going. If she asks when you get there, just be calm and nonchalant. Oh, it's just a routine thing. If needed, deflect blame elsewhere, to her regular doctor or the insurance company "requiring a checkup" or "for the paperwork" or similar. Tell the office ahead of time that your mom gets agitated about discussing payment, and then you handle that separately with them over the phone. They should be used to dealing with these sorts of issues!

I always told my mother "it's all covered by Medicare and your secondary insurance." She believes this about the nursing home fees! (I wish.)

I would also communicate any info you want the doctor to have, in writing, ahead of time (fax, mail, email, drop it off) and take another copy with you.

I used to sit next to my mother at appointments, but slightly behind her, so I could nod, shake my head, or use facial expressions to indicate to the doctor, the validity or accuracy of her statements without her noticing.

I hope something in there is helpful. Don't be shy to ask questions. I know none of this is easy.
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Ron, as you are in the States, I would like to mention one other topic. It's not related to what you asked about, but it's a piece of information I didn't have, when I needed it. I hope you will please forgive any distress or upset this causes. Then we can go back to talking about how to get your mother to the neurologist!

What I want to tell you and all the other American posters is, should it ever come to it, don't be afraid of the Geriatric Psychiatry Unit, also called GeriPsych, also called the (Senior) Behavioral Health Unit, depending on the hospital. I know that they get a lot of bad press, especially in the States, and especially on another Alzheimer's discussion forum that shall remain nameless. I think everybody thinks it's still the 1960s and Nurse Rached and all that. I'd like to say, that was NOT my experience.

When the UK posters talk about having someone sectioned, it's basically what we in the States would call, having someone committed (also a scary term, with negative connotations). I think the more up to date terminology is an "involuntary admission" or something like that; again, it depends on the facility.

This generally means a secure (locked) unit in a hospital for as long as it takes, but usually at least a few days, to figure out what is going on with the person. It's not exclusively for dementia, of course, it could be any number of issues, physical, neurological, medication problems, you name it.

In my case, that was what had to happen to get my mother diagnosed, and into the care facility she needed.

I hope it won't come to that with your mother, and I don't wish to alarm you unnecessarily. It's just that it's not something that is widely discussed or understood in our health system. If I'd known in advance, not to be afraid and how helpful it would be, it would have been less stressful when the ER doctor (at another hospital where my mother was taken after a crisis) brought it up to me. I am fairly experienced at navigating the US health care system but had NO IDEA about this, and of course at a stressful moment, it's hard to cope.

Should your mom ever have to go to the ER for an injury or accident or other health problem, and it's clear she either needs further assessment and/or can't return to her home immediately, it's something the medical staff may bring up.

So I will get off my soapbox, and I am sorry to hijack your thread.

I hope you're able to get your mother to the neurologist, get a diagnosis, and start to get some help. My mother's primary care doctor sold this idea to her (of the neurological assessment) as "a specialist I want you to see so you will sleep better," as that was the only problem my mother would admit to, but he was an exemplary primary care physician. I know they're not all that helpful.

If you will bear with me, and again apologies for anything upsetting, there are some other issues to consider, such as legal and financial issues, and also getting support for you and your mother.

Depending on where you live, there may be some support groups and possibly other resources in your area. If you go to the homepage for the US Alzheimer's Association, you should be able to find a link for listings in your area, by state and county, for support groups. Failing that, call them, and they will help you figure it out.

Also depending on your area, you may have a state, county, and/or city wide organization to help with senior citizen services. It's called various things, like the Council on Aging, or the Committee for Older Adults, Eldercare, or Senior Services. If you Google "[name of your city] and senior services," you should get a hit. If that doesn't work, try the same thing with your county of residence, or state, if it's a smaller one. If that still doesn't work, the local office of the Alzheimer's Association may be able to help. And if that still doesn't work, any local social services organization, or nursing homes, should know and be able to give you their name.

I have attended various workshops, lectures, and support groups run by my local Senior Services organization and the Alzheimer's Society. In addition, some nursing homes and even hospitals, or health systems, offer these types of classes and support. It has been a wealth of information and a huge help.

On the paperwork and legal front, if you don't have Power of Attorney, you want to get that taken care of ASAP. You want a very good elder law attorney for this. If you can't get a recommendation through friends and family, you can try the local Bar Association, or the local Senior Services office. This is very important. I had a lot of heart-stopping stressful moments before I got the Power of Attorney sorted out, although to be fair, I didn't have much trouble getting the doctors and hospitals to work with me (it helps that I'm an only child and my mother has no other relatives). However, doing anything financial without one, is basically impossible.

The elder law attorney will be able to guide you about other issues and paperwork, such as a will, durable Power of Attorney for Health Care (a living will), longer term financial issues (the dreaded spend down to Medicaid), and so forth. But get that PoA in place, first thing. Again, a good attorney will work with you, and not make you bring your mother to an appointment she doesn't want to attend, but instead will come to you.

I feel sure I've overwhelmed you, with a lot of information you didn't ask for, but on the off chance it could help you or some other American reader, I'm including it. It's stressful to have to figure out all this stuff on your own, as if the dementia weren't enough to deal with!

Again, please don't hesitate to ask questions, and very best wishes to you.
 

Amber_31

Registered User
Jun 29, 2016
79
0
I recorded my mum once, a year or two ago, accusing me of stealing something like a cushion. I did it, because in her moments of compus mentus (those were the majority back then) she would always deny having made accusations. I was hoping that hearing the recording would inspire a degree of self reflection and understanding of her actions. Oh how foolish that was. She was just very upset to hear the recording - not at herself, but it just strengthened her belief that everyone and everything was against her and that something nasty was going on that she didn't understand. Of course she didn't listen to what was said - she didn't identify herself, she wasn't able to derive meaning from having heard a recording of herself talking in the first person. So it served no purpose between us whatsoever and I was deeply remorseful for having upset her.
 

ronsalk

Registered User
Thank You so very much Amy, all the information was indeed a bit overwhelming but definitely very enlightening. It's a comfort knowing there are people who genuinely care about what other's who have been touched by this condition are going through. :)
 

Relm

Registered User
Jan 24, 2011
49
0
So... one makes a recording and shows it to the person causing the distress.......
1) They get disturbed and upset.
2) They deny it's validity.
3) They become angry and accuse people of abuse.
4) They forget it's existence.
None of this actually achieves anything positive.

You make a recording and make it available to a medical professional at a time when the recorded person is not able to see it..... it provides an audible or verbal or pictoral demonstration of one's concerns, thus providing useful evidence.

One then asks the Medical Professional to visit the patient or to make an appointment for the patient to visit under a general " Well Person Clinic" ruse.

Recording a person with dementia can be pretty pointless as the person probably won't understand what you are showing them or, if they do, they may not accept the validity of what they're being shown. Of course, this is partly true of people without dementia too!

However, as Cragmaid suggests in the quote above, it may be useful to record and show the symptoms to a third party although medical professionals working with dementia patients have probably had so many encounters with relatives raising a concern that it's likely not to be necessary to have a recording to persuade them.

Bear in mind that mild dementia still permits the person to choose not to seek treatment. For a long time my mother wouldn't go anywhere near medical staff to discuss her memory problems for fear of being whisked away from her home but, in the end, her symptoms became sufficiently severe that she simply couldn't manage without outside help - and at that point decisions about health treatment were made by others. It was a very difficult year or two before this happened and in the meantime her strategy to avoid seeking outside help was to demand all help be provided by family members which led to people being pushed to help beyond their limits. I hope you can avoid some of this.
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Ron, I'm sorry if I overwhelmed you with info. All of this can be challenging to navigate.

If you have specific questions or concerns, please speak up, we will do our best to help.
 

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