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Sunnygirl1 Asked October 2014

Will informing the patient of AD diagnosis have any impact on their mindset about going home?

My cousin is in AL and suffers from significant dementia. She has been liking the place for the last several months and crying to return when she goes for appointments, but for the last week she has repeatedly talked of going home. She says she loves the place and the people, but thinks she's well enough to go home now.

I realize she is likely referring to a home that she has in her mind and not her actual home, though she gives many details about the home, the neighbors, pets., etc.

She was doing quite poorly both physically and mentally lately, but she started on an antidepressant a little over a week ago and I think she may be feeling a little better. That's why I suspect she feels capable to go home now. Before, she was too weak to make such an assertion.

She has a fractured spine, fractured hand, needs assistance getting in and out of bed, extremely limited memory, diabetes, and other issues. Her neurologist will be meeting with us soon. She has Vascular Dementia and suspected Alzheimers. I had initially thought there was no reason to inform her if she has Alzheimers, but now I'm not so sure. I'm her POA and HCPOA. I just wonder if it would help her to hear that she can't go home because she has Allzheimers and Vascular Dementia or is it just as helpful to explain she has memory and physical issues that require to stay at a place they can help her. I know you can't reason with her, but I just wondered if anyone has any experience with someone getting that diagnosis and then it helping them stop talking of going home or does it even matter?

Veronica91 Oct 2014
Agree with ladee do not burden her with the dementia diagnosis unless she asks outright if that is what she has. If she asks don't lie to her. Focus on her broken bones and the need for continued physical therapy as the reason she needs to remain where she is "for the time being." Is there in fact a physical home she could return to or is she asking to come and live with you in a round about way?
Another thing to be aware of is that many people at the end of life when they are begining to fail mean that they want to go home to heaven.
i think you just have to keep doing the excellent job you are doing and keep the staff in the loop about any new or unusual behaviour.

Sunnygirl1 Oct 2014
Thanks ladeeM. I did mention it to them. They tell her she has to have someone go out with her in case she falls. She seems to get that.

It's odd what you said about your lady. My cousin gets mixed up too. She gets confused over what is in her room and whether it was the same as in her house. At times she asks me if she's dreaming and if things are real or not. It's heartbreaking. I try to reassure her and tell her she's fine.

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ladee1 Oct 2014
Sunny, you may want to let those in charge of taking care of her, that she has said this..... tho she is unable to do it, they may still need to know.... just in case....you are doing an awesome and loving job..... this is hard for them, and hard for family too..... compassion goes a very long way.....

ladee1 Oct 2014
My experience with this situation, I just keep telling them things like you were saying to her..... I personally would not say anything about her dx, but that is a personal affair for you..... the lady I care for constantly wants to go home.... she has LBD and its like she is in a parallel universe.... the things in her house look like the things she has in her house !!! yes, because she IS home...... the point is, she will continue to ask, and I will continue to validate her feelings, reassure her she is safe where she is.... and have this conversation with her , until she reaches a point she doesn't remember, or she goes on to something else.....I just stay calm... tho her husband blows a gasket sometimes...... I hate the way he talks to her about this.... but have to remain quite until I have a chance to reassure her as I always do......
Just this morning, she was looking in her curio cabinet...telling me who gave here what and she said it all looked just like the one she had at home.... then this look went across her face and she said it was her cabinet...., but she was still confused that it was at this place she is staying..... sometimes I simply try to redirect her if she asks many times in a row.... like, there is some apple pie and ice cream, would you like some..... sometimes she is onto me..... and gives me a dirty look.... it is confusing to me, so can only imagine what goes on in her mind.... I hate this disease, no matter what form it takes.....

Sunnygirl1 Oct 2014
I'll try to just keep things on the same level and comforting her with the progress being good, but still ongoing. That seems to work.

The only thing that bothered me is that she said one day she would go out the front door, but it would be with me. I hope she meant that, but she's never said anything about going out those doors before. She normally hates leaving. We have to beg to get her to a doctor appointments, because she hates to leave the building. She doesn't even go outside on the patio, which is enclosed with a fence. She's in a wheelchair and can't walk more than one step unassisted, so she couldn't get far, but still. I have to wonder if she's getting to a wandering stage. I never thought she would be go there, since she has always been a home body, who hates sunshine. lol

Countrymouse Oct 2014
Sunnygirl, the way you describe the other residents talking on similar issues: that does sound as if it's a sort of background chorus going on, then, do you think? Mood music, more than anything else. Perhaps it might be best not to attribute any real meaning to it, then; just deal with it as you would any other (slightly tedious) repetition. I agree, there probably isn't any way to prevent this happening; but as long as your LO isn't actively distressed by it I should just let it ride.

Sunnygirl1 Oct 2014
Oh yes. I keep talking about how her physical therapy is still in progress and she is working on getting her bones stronger. I keep focusing on her progress and how it's going to take awhile. I tell her that her doctors have to monitor her and do tests, etc. She agrees with me and says she knows it's not something that will happen right away, but the problem is that she repeats that she wants to go home every 30 seconds. It's as if she forgot she told me 20 times in the last few minutes.

I guess I'm hoping for some sliver of rational, when there likely isn't any.

Another thing that concerns me is that yesterday I noticed that two other residents that she sees a lot said they were going home. (I don't that is true, but is in their mind.) One said she was going against her doctor's advice. The other kept saying there was no reason she couldn't live alone. (In reality they lady look very ill and told she has severe heart problems.) Both of these other residents appear to have significant memory issues. I wonder if they are influencing her to talk of leaving too. I'm not sure how to stop that. There's no way to control what they say around her.

Countrymouse Oct 2014
I think I would say to her that I am soooo pleased that she is feeling stronger now, but that her doctors say it would still not be a good idea for her to be living alone. And then go on to explain any aspect of her illness that she expressed an intelligent interest in.

Don't be afraid to tell her about her diagnoses, then; but I wouldn't expect it to make much difference to her conversation. Just concentrate on the positives - it's great that she's comfortable in her ALF.

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