"Going home"

StephenB70 · April 3

Hi - I'm new. I'm caring for my mom long distance. We had her at home with in-home care, but she just doesn't understand that she has any problems at all and wasn't cooperating with the help and just couldn't be left alone safely. So we moved her against her will into assisted living. She is essentially on the "independent" wing - she's not in memory care - but we added various services like reminding her to eat, help with showering, reminders on where to put her clothes at the end of the day, multiple daily check-ins, etc.

After having moved into assisted living, she's been taking her meds every day and eating every day and showering regularly and is in clean clothes. So she's actually doing and feeling better. But as a result, she just can't understand why she needs to be there and we can no longer have any conversations with her because it's all "I need to go back home" and we can't redirect her. So we're basically ignoring all the emails, calls and limiting our interactions because it's just one-tracked obsessed.

Any thoughts?

H1235 · April 3

Welcome! Wow do I get it! We actually saw some improvements in my mom after getting her in a safe place. We talked with moms doctor and have finally found medicine that is helping. It took a long time to find the right medication and dose. We can usually have a fairly nice visit now. I never ever bring up her home in conversation, but when I brought Easter decorations for her room she knew they were from her house. She got a little snippy, but not so bad I had to leave. She has insisted on me explaining why she has to be there. This is not a trap you want to fall into. There is no reasoning with a person with dementia (sadly I learned this the hard way). She accepted her diagnosis in the beginning, but now claims the doctor made a mistake. When she starts in on going home I usually tell her we can change the subject or I can leave. For a long time our visits were very short. She still doesn’t understand why she needs to be there and feels I am mistreating her by making her live there. But with the medication she is not as anxious and angry about it. It breaks my heart that she thinks I would mistreat her. Good luck.

SusanB-dil · April 3

Hi StephenB - yes, totally agree with H1235. Your mom has anosognosia. This is not denial, but rather, the firm belief that nothing is wrong. The way they see their world is their reality (and everybody else is just trying to aggravate them).

You can also try fiblets. Fiblets are friends. If mom insists on the fixation of going home, you can tell her 'there is a watermain break on your street', or 'the power is out' and they are working on it. Repeat as necessary. Best to try to change the subject, but when a LO is fixated on one thing, sometimes that is difficult.

Anonymousjpl123 · April 5

I had the exact same experience with my mom. Very common. It was hard and I had to ignore a lot of phone calls. But when things got worse (and sadly, they will) having already made the move made everything ten times easier.

I would use fiblets. She may always want to go “home” (mine does) but it may not be possible. I would focus on activities there, how nice things are, and just being kind and calm and patient. Say whatever makes her feel better. You are working on getting her home fixed. She will be moving. It’s so hard! But you are doing the right thing.

JM27 · April 6

Hi,

I have the same issue with my father. He is unaware anything is wrong. I was caring for him long distance as well, then it became to unsafe for him. I had to take him from his house in another state and bring him to live with me. He thought he was only coming for a visit and still thinks he’s going to go back home.

I wish I could give him closure. I thought I could take him back with me while going through his things to get the house ready to sell. But reading through this post I realized there is no closure unfortunately.

He is also on anxiety meds and they has helped with the asking to go home. Before it was unmanageable and he would become irate. Low dose Lexipro has really helped with the anxiety and looping questions. Although it will not take it completely away it’s easier to change the subject when he gets in a loop about his home ect.

im glad your able to have you parent in a facility that helps with some of the caregiving burn out.

Thank you for the post it has given me some clarity of making a decision of not taking him back to his when I have to go to start the process of letting it go.

Good luck to you.

BigBlueTruck · April 7

First post. I brought my 86 yo Mom to live with us at the holiday. Wanted to get through the winter. She is much worse than she masked. I knew, the rest saw the mask. Two weeks ago she decided she wants to go home. Every interaction starts and ends with the statement. Nearly every morning her bags are sitting in front of the door. She is unable to care for herself. She stepped in dog feces and tracked it through our house and went back to bed with it on her foot. She believes she can drive. Forgets that all her friends are deceased. Thinks a neighbor in memory care still lives next door to help her.

There is no redirecting her. In her moments of lucidity, she becomes aggressive and verbally abusive. My respite care is unwilling to assume more duties. My daughter has stopped visiting. DE avoids coming home until dinner is over and LO is ready for bed.
Her PCP is of no help, he says this is natural progression and there is nothing wrong. Can a neurologist give me a more detailed diagnosis?

SusanB-dil · April 7

Hi BigBlueTruck - hello and welcome -

Yes, a neurologist could probably help you out more than PCP. However, it sounds like the PCP isn't as knowledgeable as needed for her situation, either. A neurologist would be able to prescribe something for the agitation.

Your mom has anosognosia. This is not denial, but rather, the firm belief that nothing is wrong. It is their reality and everybody else is wrong. This is why she wishes to go home and thinks she can drive. If redirecting isn't working, use fiblets. 'The house is being worked on', or 'there was a watermain break on your street and they are working on it'. 'The power is out at your street, so we are just having you stay here for a while'. Repeat as necessary.

Do you have DPOA and HIPAA paperwork? Also important.

p.s. - you may get more helpful responses when starting the subject anew…

sandwichone123 · April 8

Hello BigBlueTruck,

I am not understanding exactly what benefit more diagnosis would bring. You know what's going on, which is why the PCP says this is natural progression.

What you need is a plan, perhaps a Plan A and a Plan B. Do you want to keep your mom living with you and medicate for symptoms? You might want a geriatric psychiatrist, who can help with that. Do you want to find a memory care home for her? In that situation, often the facility doc is the best choice, as they are specializing in that patient population. Do you want to keep her home, but find some help and support? An adult day care might be an option.

EmilieKOA · April 11

Stephen- I echo all the words of support from others. This is a really crappy experience and I applaud all of us for continuing to navigate it with love.
A really concrete question for ya, though. How did you accomplish this? "So we moved her against her will into assisted living". My siblings and I feel we need to move our parents "against their will" and have no idea how to implement that.
Can you help us by sharing your experience of it?
If it's not something you want to share I understand.
Wishing you stength.

sandwichone123 · April 12

Moving a loved one against their will requires having a valid durable power of attorney (DPOA). Find and make arrangements with the locked facility that seems best for their current and future needs. Work with the facility on plans. You are very lucky to have siblings that are in agreement, as they can help by moving furniture or belongings while you distract your parents. The most common way to get the loved one(s) to the facility is to take them to lunch there. You will be met by the admissions person and/or activities director, who will distract them and you make your escape.

"Going home"

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