Feel like I'm not good at caregiving

*Ollie*

Need some advice on how to handle anxious, negative repetitive talk?  My mom goes into this unbearable space when something changes in her routine or when a problem, even a small one, arises. 

She lives with my husband and I so we are the recipients of this draining space she gets into.  I can not soothe her with words, I cannot soothe her by answering her questions.  It's like she regresses into a different mental space where she is consumed by anxiety and negativity and nothing can get in.   She is completely unaware as to how impactful her behavior and her language is on us.   We start out addressing her worries patiently but because what we say is not really heard, it doesn't matter and we lose our patience with her.  

We are working on getting anxiety medication for her but it is not a quick process here.  Any other ideas?  It just doesn't feel great to get angry, irritated and annoyed with someone who can't really help it.  

LicketyGlitz

Meds will hopefully help her (and you and your husband). A low-dose antidepressant helped ease this stage somewhat for my mom.

What I had to do is rethink myself through it. Like you said, nothing I could say or do would soothe her, so I just worked on how to make it bearable for me, and I started with giving different answers all to the same questions to amuse myself. Sometimes they'd be rational response, but when I was getting really frustrated I would go full-on wacky with my answers. Like asking about my dead dad would get a response along the lines of, "As soon as he gets all the giraffes back to the North Pole he'll be there, but he's having a really hard time of it." Some things would be such odd answers they'd knock her out of the loop trying to puzzle out what I had just said.

And sometimes nothing worked for either her or I and I too got frustrated.

Hang in there!

harshedbuzz

Ollie-

What's holding up the meds?

While I typically suggest a geriatric psychiatrist for psychoactive medication management, for an SSRI (anti-depressant/anti-anxiety med) you could go with her PCP to start and loop in a geri psych when available. These meds can take up to 6 weeks to show whether they'll be effective or not plus they need to be titrated up and weaned off-- so it can be a couple month commitment to find out something isn't effective. A psych who uses GeneSight might be able to test for a faster experience. 

Meds do help calm this sort of thinking but mostly they make a PWD more amenable to non-medication care strategies at this stage. Answering questions in a breezy manner is good. Tone is everything-- the emotional content of a message (warmth, annoyance, exasperation) will be processed long after words are forgotten.

Some folks find it emotionally less taxing to have a standard script each time from which they never deviate. I was more team Lickety pushing the envelope to see what I could get away with often to demonstrate to my mom (who was in denial) that dad was really that far along. 

Validation can be useful-- especially a validation and redirection pivot. First you would recognize and give sympathy/apology for what she's feeling and the immediately distract with a change of topic/activity. Many here redirect with a snack or treat. My dad responded well to a change of topic to football.

HB

M1

I wonder if music would help.  It would both distract, and it's hard to talk over it.  Just a thought, but I agree that meds are needed for the underlying problem.  The music would be a temporary distraction method

NuttyProfessor

My mother is very similar to what you describe, Ollie.  The good news is:  yes, there's something you can do about this, and you need to give yourself the right to pursue whatever you can that works, to reduce your burden.

Medications are indeed important, and it will take some trial and error to figure out what works - taking side effects into account.   However, there are some things you can do right now to help prevent this response.  For example, don't discuss problems in front of her; do it while she's napping.  Or, make phone calls from the bathroom, or leave the house to "go for a walk". Also, talk to her about ONE topic at a time, and be careful not to switch topics quickly, or have multiple people in the room talking at the same time.

Routine is everything for an Alzheimer's patient.  It's interesting that you have noticed that changes to routine causes problems - very observant of you!  Again, what specifically causes disruptions to the routine, and can you think of ways to prevent them?  I'm dealing with this exact problem in another thread...extended family visits causing disruptions to routine.

If you can give examples of the sorts of things that set your mother off, we might be able to give some more specific tips. 

oehlsena

My LO is this way also. What I have slowly been establishing is just answering her every question with a gentle, "yeah," or a more excited "yeah!"  Oftentimes I only understand the questioning tone, and the subject is bizarre and unknown to me or ineligible. The confirmation usually seems to please her, even if she is involved in some internal, unhappy drama. 

My lesson that I learned is never disagree, only prevent. 

*Ollie*

Thanks for chiming in all!  I am going to make a note for myself on what to do when she's spinning and put it on the fridge:  change topic, put on music, offer food,  non-sensical answers.  I can't seem to bring those ideas to the forefront when I'm dealing with her in these moments.  

I finally got an appointment with her doctor for next week.  For whatever reason, she has to outsource the anxiety med to another doctor.  I believe it's someone who works specifically with seniors and behavioral medication.  I'll find out more next week.   

As far as what triggers her to spin...It can be something as simple as her caregiver running 10 minutes late.  She's already anxious (she'll pace a good hour or so before her caregiver comes) and the small change revs her up.   It can be bigger events like if my husband and I go out for the night.   She almost makes it not worth it because of all the drama that ensues beforehand.  

My husband and I still want to get out occasionally, for dinner, for the weekend, etc.  If my mom had it her way, our whole world would revolve around her!

The only way I can think of fending off the shifts in her routine is if my husband and I don't do anything.  This is not going to happen because our mental health is important and we need breaks.  And things happen in life that are beyond our control and we can't stop these things from happening either.   My mom gets freaked out by the normal ups and downs of life.  

LicketyGlitz

If you've been referred to a geriatric psychiatrist that's awesome news, Ollie! My mom's geri psych was critical to our journey. She helped us identify meds to ease dementia behaviors Mom was going through, worked with us to get the right dosage amounts and times. I hope that's who your seeing, ours was fantastic.

Best to you all.

Kapuna

All of this is so helpful and just what I needed to read....I'm feeling defeated, at my witts end and truly in need of a break. He's 70 and advancing rather quickly and I'm younger with stage 3 cancer....a rough week...I'm sorry I have nothing to offer that is helpful right now but thankful for the help I just got here...I feel less alone which is a huge plus...Mahalo

SDianeL

Have you read the book "The 36 Hour Day" ?? it was recommended by a nurse and it has helped me a lot. Someone posted here that you can't reason with a person whose "reasoner" is broken. No amount of arguing will help. I've found that not telling my DH what is going to happen is best. If his caregiver is coming, I tell him right before she arrives. You also can use fiblets to stop some chattering. People with Dementia/ALZ chatter when they are stressed. They are stressed because their brains are not working. My sister has Dementia and her family was saying she was "stubborn" -- I had them read the book and they now understand why she has certain behaviors. Your Mom brain is reacting to a scrambled world. Try to keep things as routine as possible, let her chatter. If she is agitated, angry or has hallucinations medications can help. My DH is on Risperidone low dose and his chattering & arguing hasn't stopped. He does sleep better at night. Learn all you can about the disease and that will help you reduce your stress and not get upset with her. Remember, she can't help it and can't stop doing it. This might help: https://www.alz.org/help-support/caregiving/stages-behaviors/repetition

Iris L.

This post is from June 2022.