Should I tell Dad he has Alzheimers?

moore3

Is it more helpful or hurtful to remind my Dad that he has Alzheimers? My Dad refuses to move to AL. He says they are doing fine. We try to give him examples of why he's not but it feels like this is more hurtful than helpful, especially since he won't remember the conversation. What do we do/say instead? I find myself considering my words before having conversations with him. How many times have I wanted to ask him, "Dad, do you remember when…" or "Dad, what did you eat for breakfast?" and then stopping myself because it's futile.

M1

Most here would say don't mention it. He likely has anosognosia: he really thinks everything is fine, he cannot see that he has deficits. This is quite different from denial.

I tried telling my partner early on when I was worried, and she about took my head off. Then I thought that hearing it from our doctor would have an impact—but our doctor laughed. This is where you just have to learn to work around it, and do things without telling him, or with compassionate fibs to smooth things over. My partner has been in memory care for two years now and continues to think she's fine. Doesn't understand why she can't come home; we continue to tell her she's there for rehab after a hospitalization. I tell her she'll be coming home eventually (and think to myself, she will either be already dead or in her deathbed when that happens).

I'm sorry it's so hard, but this is part of the steep learning curve.

SusanB-dil

Hi moore3 - sorry you are dealing with 'this', but best not to say anything further, as M1 has posted.

Wondering about AL, however, and not memory care? Sometimes a person with alz can maybe be in AL only for a very short time, as they really need more assistance than AL can provide.

mabelgirl

OH I wish there was someway to make my mom understand there is something a miss! She now says I use magic to move her stuff when she can’t find it. She swears she knows where she put her stuff and it just doesn’t walk away!

I have a swore tongue from biting back what I’d like to say in these and other situations, and generally I just give the reminder or just help locate stuff (only to be told ; of course you know where it is you put it there).

I personally do believe, on some deep deep level she has some moments where she does recognize there is something wrong but then it’s gone.

Prayers for you to find something that you can do as our LO won’t change.

harshedbuzz

@moore3

With all due respect, because we've all been there, you are breaking the cardinal rule of Dementia Fight Club. One never tries to reason with a person who has a broken reasoner.

You dad no longer has the higher order thinking skills to follow, accept and recall the argument that AL is needed. On top of that he likely has a degree of anosognosia that prevents him from appreciating all of the losses he's had that are driving this need.

Cobbling onto @M1 getting laughed at by their doctor, when the neurologist told dad he had Alzheimer's, dad looked at the man and said, "that's the best thing I've heard all day".

The bottom line is that the people in charge— whether you or mom— make the move happen by whatever means necessary. I can appreciate you find lying uncomfortable. Everyone does. You're in no way unique in this respect. IMO, in a battle between kind and honest, kindness always wins.

I suspect a hospitality model AL might not be the level of care needed. If mom needs more than a daily well check with medication distribution, meals in a dining room and light housekeeping she may do better in a higher acuity personal care apartment. The facility will expect mom to look after dad for the most part. If dad is a elopement risk, he's going to need MC.

In touring, I would be wary of a community with an entrance fee who promises all manner of supports with the intention of turfing them out or to more appropriate levels of care.

In terms of fiblet, I'd send mom and dad to a hotel for the weekend while you set up their new apartment and then bring them there "for dinner".

HB

Quilting brings calm

He won’t believe it or understand it and won’t remember. All telling him does is start an argument. My mom has been told several times by doctor’s and she never ‘hears’ them or processes it. She’s even read the name aloud on the memory clinic door and never processed it.

You’ve got to invent reasons for the move - rehab or something wrong with the current house etc.

Emily 123

Like others have said, he doesn't have the capacity to really process or retain the information now, so there's no reason to try to explain his diagnosis or give him examples. It sounds like you're at the point where the easiest thing to do is work around him to get things done. That's ok. He's not going to be able to use critical thinking about a move because of the disease, and it's going to be too much information for him to process if you try to get him to participate. Way too challenging for him, too. The upheaval can be a lot for a PWD, because a daily routine takes the place of a PWD's memory, so you want to kind of bubble-wrap him away from the process. When the routine's disrupted there's less mental bandwidth to create a new one, especially because he can't imprint new information. It can take a while for a PWD to start 'remembering' a new place and routine.

We do use 'Remember' in conversation a lot, don't we? You don't realize it until you try to stop! Don't beat yourself up. Practice trying open-ended conversations that don't challenge him to recall. Instead of asking if he remembers something specific, start with telling him about the thing you recall. He can enjoy chatting without having to remember it. So instead of 'do you remember when', try 'I was thinking about a time when we…''

It helped me to read up so I could understand what things were like for my mom. This helped:

https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience

And this—Your dad probably won't check every box, but he will move through the stages consistently if it's Alzheimer's.

Tam Cummings assessment tools/AD checklist

https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

The Teepa Snow videos are good, as are these…lot's of stuff out there!

https://www.youtube.com/watch?v=ncKhXQtnyfI

https://www.youtube.com/watch?v=AgscXNg5jOQ

5 losses: 

https://www.youtube.com/watch?v=awBm4S9NwJ0

kfunk

https://alzconnected.org/discussion/68754/should-i-tell-dad-he-has-alzheimers

I have had the question about my mom. At a neurologist appointment the doctor said my mom has mixed dementia. After that appointment my mom would say she didn't like that doctor and when asked why she would just say I don't like what he said, never saying what it was. The social worker shared it is probably best not to remind my mom of her diagnosis. However, my mom can tell something is not right with her thinking. and becomes upset and wants to know why she can not find words. Several times she will not remember that she has eaten a meal then want another one and if told she already ate she becomes very upset. I too find myself choosing my words carefully as to not upset her. Instead of saying remember I will say.. share with me about… I have also been told to tell therapeutic lies such as others have mentioned. It is not that we are lying but rather allowing our LO to have peace in the moment and not think about things they can not understand anymore.

Best of luck

kfunk

Thank you for sharing these videos. I found them all very helpful.

concerned_sister

"It is not that we are lying but rather allowing our LO to have peace in the moment and not think about things they can not understand anymore."

I like the way you phrased that.

pnw23

I came here today with a very similar situation. Almost 94 YO Mom with mixed AD/VD thinks she showers more than she does and doesn't need the AL aide coming by 1x a week to remind her. (We were trying this out with some other new AL services, as a hygiene nudge.) She said she felt like she was in grade school, needing a reminder, then directly asked me, "Do you think I'm losing it?" and my heart winced. Seconds later she said she "thought" she showered almost every day. Then, "Don't I?" Crushing. Anyway, with insight from this thread and other supports, I redirected to a broader angle but she hung up with a tone that indicates she's questioning herself today. The bigger pic is she's having a good memory week, asking questions like she used to, remembering some recent things. Everything you have all shared is so helpful. Thank you! And thank you @moore3 for posting the original question. I hope these insights are helpful. So hard to be in this situation but at least we have each other.

Mama’sGirl

thank you so much for these videos.