Need emotional support

Michelle_Nana · April 14

Hi everyone,

I'm caring for my aunt who raised me when I was a child. She has early-stage Alzheimer’s and is currently living alone. Her son has been out of contact with the family for about 10 years, and we haven’t been able to find him. She misses him deeply and talks about him every day.

My aunt has memory loss. Because she can't remember things correctly, she she believes things that aren’t happening. She's convicted that family members are against her, stealing her things (which she misplaced), conspiring with her doctor(s) to mess up with her medicines, etc. She accuses my brother who has been very helpful to her of getting around her newly installed digital locks and placing used shampoo and toothpaste in her apartment. What makes this especially hard is that she now believes he is trying to harm her, and it clearly upsets her. She says that she has always loved and treated both of us equally and does not understand my brother's behaviors.

Even trapped in the disease she's such a loving, smart, warm person with a lot of fun. Her delusions include that I hit her once (which I never did), but she still shows me nothing but love.

I often find myself wondering what a world she must be living in, with everyone untrustworthy, unpredictable, and environments unsafe. It makes me so sad.

Today was especially difficult. She refused a scheduled hospitalization which she agreed to yesterday -- it was recommended by her doctor because we're all concerned that she may not be taking her medications correctly. She was upset with me. I ended up in tears and said aunt I love you so much, please don't be taken away by this disease. Let me tell you how the medicines work and why you need to follow my written instructions on the first page of the notebook I gave you.

She said I'll do it just because I love you.

I just don't want to lose her like this, little by little. It breaks my heart to think that she still chooses to love while her reality feels so unsafe and uncertain.

I joined this community because I really need emotional support and to hear from others who might share similar experiences.

Thank you for reading.

lilacgirl · April 14

Hugs. This disease is the worst. Honestly, she probably should not be living alone at this stage, but she is lucky to have you.

psg712 · April 14

Agree that she is not safe living alone, especially with her distorted view of reality. It is a blessing that she trusts you, even when she believes that you have done wrong to her. You are going to have to make hard choices to keep her safe, but that is another way of loving her.

Kiki87 · April 15

Im so sorry youre going thru this. Im going thru it with my mom and it definitely sucks. Feel free to message me

SDianeL · April 15

do you have DPOA? If not I would see an elder care attorney. She needs medications to calm her and help with delusions. Talk to her doctor. I agree she should not be living alone. It’s not safe.

Michelle_Nana · April 15

Thank you all so much for reading and for your kindness. This community is so supportive.

About her living alone: we do know that she should not be living alone. She tried some elderly homes but always had conflicts with people around her because of her hallucinations. We are still working to find a more suitable long-term arrangement.

Good news is: she came over to my place (I'm caring for my elderly mom and living with her), and agreed to hospitalization! She was very sane today and said she knew she had problems and acknowledged that she needs professional help.

I also wrote down the sequence of her medical visits, including doctors’ recommendations, test results, and the reasons hospitalization was necessary. Reviewing this together helped clarify some of her misremembered experiences. I explained that the facility we are considering is not the one she had concerns about, and she understood. She even mentioned that writing things down is helpful for keeping track of information. I was so grateful for her saying that and trusting like that.

Today her loving, warm and humorous personality is back for the most of the time, and she literally solved this issue by coming over to me and letting me arrange her medical care. She literally lifted stress away from me without even realizing it.

Michelle_Nana · April 15

https://alzconnected.org/discussion/comment/270383#Comment_270383

Thank you for this reminder! I don't. I'm not her custodian. Her younger sister is. But in her hallucination she considers everybody else unfriendly, I'm the trusted one for now.

Grenah · April 16

I come here a lot. Had a terrible day. My mother fairly early on was wanting to go home. Of course she has no address for this home and gets very upset when told that she is currently in the house where she resides. She wants to call the police because she shouldn't be in her own house and unknown intruders are stealing from her. The personality on the television was also stealing from her. She has a teddy bear, who is her support/comfort bear. She was convinced that he had been stolen and then put back. Right now she will not let it go, even in the bathroom. She became so agitated that we gave her a Xanax. Never had to do that before. Don't like that we may have to resort to pharmacology. She's awake now but looks and acts like a confused old lady.

Thanks for listening.

Victoriaredux · April 18

@Grenah

It's ok to use medications to calm our LO's brains , that is the part of their body that is failing right?

Can't blame them for anxiety - I'd imagine their thoughts are seeming unpredictable to them. Especially if meds opens up better care options for them and prevents caregiver burn out.

This is a good Teepa video on being "at home" if placed

https://www.youtube.com/watch?v=LmD3zpa13_Q

and another on handling "I want to go home!"

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

Victoriaredux · April 18

@Michelle_Nana

I'm glad you had a good visit but you may wish to read up on how dementia progresses- it's memory loss, and for many lack of empathy, loss of executive functions . Trying to follow schedules, calendars and remembering why those events are planned and necessary can cause stress and then they act out emotionally .

They don't know/remember and "No!" becomes the default approach. It isn't a matter of getting them to understand and then remember events- they simply can't. And pre-warnings of upcoming events can make it worse- they may recall "something about something in the future" but not what or why- so anxiety becomes their response and then you get "No!" Makes sense- its less mentally painful to them .

Our normal way of dealing with future events has to change with a LO with dementia.

Did your Aunt drive to your home? Her DPOA sister needs to step in if that is the case . If she doesn't have time to oversee your Aunt's care she can look at hiring a geriatric case manager but leaving your Aunt living alone and possibly driving or walking distances isn't safe physically and can risk her assets if she has an at fault accident or gets scammed.

You are very kind to help your Aunt, and I'm sorry you have to watch her fade from this horrible disease.

Need emotional support

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