Dealing with Anosognosia?

Sleepless in Sleep

I posted a similar thread awhile back, it was about friends who were telling my parent that they didn’t ‘notice’ any problems, and the problems this was causing us: https://www.alzconnected.org/discussion.aspx?g=posts&t=2147554320&boardid=77

That is less of an issue, but one of these friends had the bright idea that my parent should fly halfway across the country, to New York City no-less, and stay with them for a couple of weeks... they would have their daughter pick my parent up at the airport, no problem!

Of course my parent thinks this is a great idea! For clarity: my parent is 30-50% into stage 5, recently scored a 12 on the MMSE, I have to do all IADLs, has some hallucinations, baths self (needs help with prep and temperature), etc. etc.

 I tried to redirect for days, without going into details I left the friend a brief message that it just wouldn’t work out, but the friend didn’t get the picture. It kept coming up.

I finally had to get onto the phone with this friend, and explain to them that it would be inappropriate for me to go along with this. I did go into more detail about my parents situation. They told me that my parent had always said things are “going good,” and that they had thought my parent was ‘just’ in the early stage(s). 

Anyway, I am now the bad person and my parent is very upset. I think they will eventually ‘forget about it,’ but they seem to be able to hold onto these more anxious/important memories for awhile. 

Here is my issue (finally): my parent is now continually asks me “what is wrong,” telling me “I can do this,” the friend will “be there to help them,” etc.. I then feel obligated go through a handful of examples to explain the problem. I know this is not what I am supposed to do, and that it ultimately doesn’t work, but what can I do? I feel if I just ignore or attempt to redirect their questions/demands they just get more angry and feed more resentment about this. But ultimately that may be the better option of crappy options?

lizziepooh

You need to lie. This is now the new policy on everything going forward. Reason does not work so lying is best. 

For this particular situation, I would write a letter to your mom as if you are the friend and say that their house flooded so she can’t have any visitors for awhile. Also her phone was lost to the flood along with all her possessions so they will need to write letters now. She will send a return address once she knows where she will be staying. Love you and kisses. Talk soon.

And tell the friend not to answer your moms calls for awhile. And tell her to call you when she wants an update on your mom.

Or something similar.

You may have to be more open with people about your parents situation in the future. 

If they are friends then they deserve the truth and they will want to help.

I had to tell my mom’s friends. After I told one friend, her husband mentioned my mom’s diagnosis to mom. She went ballistic on me. It passed and I made a note to myself to always tell them not to mention I told them or that we spoke. No issues going forward and they were a real help. We coordinated things behind the scenes and then they called mom to talk to her or arrange a visit.

lizziepooh

I suppose you dad does complicate things since it not just you that needs to sell the lie, your dad will need to too. Can your dad be an ally in this, do you think?

MN Chickadee

Have you tried a therapeutic fib? Trying to reason with a PWD in stage 5 will do nothing other than make you the bad guy in the situation and cause resentment and anger. "It turns out Friend can't host you this summer, she had some family stuff come up. We'll try again in the fall." Follow with a distraction like reminiscing about past trips or an ice cream cone or whatever.  Rinse and repeat. You will likely have to be very forward and honest with the friend, communicate to them how compromised your LO really is so they see they need to go along with this.  Just keep pushing the trip off another month or two indefinitely - it is very likely the PWD will forget about it before too long if the friend quits mentioning it. Could you tell the friend to come to you for a visit? That would satisfy any guilt you may have at keeping them apart, and allow the friend to see for themselves what kind of shape your parent is in.

Mlewis501

Lizziepooh has it right.  Start telling the lies.... repeat, repeat, repeat....

Sleepless in Sleep

Thank you all for the replies.

I guess if things don't improve in the next day or so, I will try to get the friend to help me in a 'fib' to divert them away from this. Better than ignoring them/it.

I have always told my parent I will not lie to them, but that is obviously not going to be possible. I think that things have been a little easier for us up untill recently because they always knew I will not waver... will feel like a betrayal.

Thanks.

M1

Don't worry about lying/being dishonest:  this about keeping our loved ones safe and giving them as little anxiety as possible.  I do things I'd never thought of doing before:  tearing up checks she writes to animal charities (an endless sinkhole, $13,000 in one month last year), hiding the keys, making up excuses for doctor appointments.  I think it's a good suggestion to say something came up and the trip had to be called off.   She may never know the difference.

Iris L.

Sleepless, I read your earlier thread.  I have a different thought.  Frankly I'm amazed that the friends are not more aware after more than seven months.  PWDs who are progressing lose the ability to have a rational back and forth conversation.  You say that the friend's daughter would pick your mom up at the airport.  To me it appears that the friend may be losing some degree cognitive judgement herself.  If they are both at or near the same place cognitively, I see no harm in letting them "plan" their vacation, with the idea that it's never going to happen because neither could execute on her own.  But perhaps the daughter is not aware.  How close are you are to her?  Bring her into the loop.

I had been planning a long trip to see a relative at your mom's stage last year.  Due to Covid that didn't happen.  Now I won't travel such a long distance for a five minute conversation before the repetition begins.  I'm not sure if she knows who I am when I call, although I call every day.   Her changes are very apparent to me.  I had to adjust my expectations. 

 Iris L

lizziepooh

Sleepless in Sleep wrote: 

I have always told my parent I will not lie to them, but that is obviously not going to be possible.

No, it isn’t going to be possible. Your new reality involves lying. To care for your loved one you will need to lie. Are you ok with that? It does not sound like you are…

[Deleted User]

The user and all related content has been deleted.

lizziepooh

Call it what you want but it is lying. It is that. Don’t dismiss people having a problem coming to terms to that. These are the types of people one should want for their cause. Yes?

Sleepless in Sleep

Yes, I don't like it, but I will be able to lie for their (and my family's) own good.

To answer a couple of points:

1. This may seem a little trivial in the big-picture, but my parent is single and I am the only remaining child. On-top of that, I have a young family and significant responsibilities. These added disruptions take a toll. My goal is to try to keep my parent happy and safe for as long as I can before we need a professional environment. We keep a pretty tight routine, and it seems to be working, for now..

2. I do not think my parent's 'phone friends' understand the extent of the condition. Most of my parent's friends do 'literally' 90+% of the talking. It is a mighty struggle to say much of anything when you talk to them.

3. My parent also meets with a 3 friends in-person about every two weeks. I do drop-off, and I think my parent saves their "showtime" energy for these friend-breakfasts. One of the group understands the full extent, and I trust them; they are 'in-charge' for this meet.

I think some of these friends just feel bad, and I appreciate that, but they are causing all kinds of struggle at home.

Again, thanks for the replies, it helps to 'hear' all of this.

loveskitties

I don't know how computer savvy you or the friend (or friend's family) are, but perhaps a zoom conference between you LO and the friend once a week would make up for "no trip".

That way they can see each other and chat just as if they were together.  

Stuck in the middle

When my mother got into her late 80s and began to worry about losing it, she didn't ask me to  always tell her the truth.  She asked me to not let her do anything stupid.

I'm a results oriented guy.  Lies, zip ties, whatever it takes.