New Here! Any advise is appreciated

BelArram

Hello All!  I'm new here.  My mom was diagnosed with dementia in February.  I knew this was happening.  I took her in 2 years ago for testing but she did great on the tests..  Fast forward to February and was diagnosed.  I am married with 2 middle schoolers on top of taking care of my mom.  She still lives on her own but I help her as much as I can.  I manage her medications, drive her to where she needs to go(doctor said she cannot drive because she now gets lost and doesn't remember the most common streets she use to drive).  Now, she is so upset that she cannot drive she threatens to leave and not tell us where she's going.  I have installed the Life360 app on her phone.  We ask her to come visit with us at our house but she refuses, but yet she is mad she is confined to her house.  The last week has been very upsetting.  She has a trigger and is now accusing my son of cussing at her and yelling at me because she is so mad.  She is mad at everyone.  Now that summer is here, my children stay at her house while my husband and I work.  She has cared for my children since they were born.  I hope her trigger goes away and she is able to manage herself in a calm and peaceful way.  TIA for any words of encouragement!

M1

Welcome to the forum Bel.  None of this is easy.  There are many experienced caregivers here.  You sound like you have a lot on your plate.

You didn't ask this, but it's hard not to wonder whether it is appropriate for your children to be staying with her any longer.  Who is taking care of whom there?  Sounds like it might be a difficult situation for your kids as well as your mom, particularly if she is triggering on your son.  It is very hard to have to change things that have been in place a long time, but that was the first thing that occurred to me when reading your post.  Is she capable of handling an emergency, if one came up with one of your children?  Particularly if she cannot drive?

My partner also is furious at not being able to drive, it is an ongoing argument that recurs every few days, including today.  I am not in a position to get rid of all the vehicles (we live on a farm that requires a pickup truck), but if you mother is no longer driving, can you get rid of the car?  It might be out of sight, out of mind.  And you can use any fiblet as an excuse--taking it in for a recall is one that gets mentioned frequently.

Since this is a new diagnosis, it is also worth asking whether legal matters are taken care of--do you have power of attorney for financials and healthcare?  Do you need to think about Medicaid application should she need placemetn in the future?  You do not want to wait on getting those things addressed, and a certified elder law attorney (CELA) is the place to start.  Good luck; there is a lot of good information to be had in these forums, as well as good support. 

Rescue mom

M1 already raised my main comment...should mom really, with Alzheimer’s, still be caring for the kids? She is verbally unpleasant and accusatory with them, and they may still be too young to accept “it’s the disease talking.” Plus she can’t drive—what could she do in an emergency? Do you really think she could handle it properly? Can she attend to their regular needs, when she’s so caught up in her own emotions (as expected for Alzheimer’s patients)?

Earlier, you said she threatens to leave and not tell you where. (I assume she cannot get to the car). I wonder if she is capable of actually carrying through on such threats. Many people with Alzheimer’s (including my husband) say they’re going to do something, or say they will do something, but are not capable of the next steps to actually do it. If she does wander,  or tries to run, when the kids are there, are they supposed to stop her?

 If you think she really might run, do you have local cops or emergency folk you can alert in advance that she has Alzheimer’s? Many cops will file that, and many caregivers do it. They may be needed to find her, and you don’t want cops to think she’s just being uncooperative.

If you look through these forums, you’ll find lots of advice and suggestions for how people deal with their LOs anger at not being able to drive.

You’re hoping her triggers “go away” and she learns to handle herself better. I’m sorry, but that ship has probably sailed. People with Alzheimer’s do not get better, and they cannot learn such things. Their brain is broken. They can no longer reason or use logic; almost all become very self-centered. 

I’m sure she cared for the kids wonderfully before, when she was well, and they surely have great memories of that. But she is no longer well. How will they remember this? M1s points about planning other arrangements and paths through this are very wise.

harshedbuzz

BelArram-

I am sorry for your need to be here, but happy you have found or little clubhouse.

I think it's important to understand that dementia is not just about forgetting- the damage the disease causes also impact cognition in terms of higher order thinking and executive function. Those changes, along with personality changes, are often the first things close family might notice. 

Because of those changes, you should probably make other arrangements for your kids- camps or perhaps staying home together. She's not capable at this point to recognize and react relaibly to an emergency. And your son is likely too young to fully understand the attacks she's is making on his character. There are posts here regularly with grown adults struggling with accusations made by a PWD- this is beyond a tween.

TBH, it sounds like your mom's days of independent living are quickly ending and other arrangements will need to be made to keep her safe. In your shoes, I would make sure I had the legal paperwork in order to act on her behalf and start touring MCFs or interviewing HHAs.

HB

LicketyGlitz

Hey Bel, is there a geriatric psychiatrist on your mom's care team? If not, are you able to ask her PCP for a referral? Your mom sounds like she's hitting the rage stage and could use some medication assistant to help alleviate some of her anger. My mom's geri psych doctor was the most useful medical person on our journey. Medications don't cure the worst of dementia's manifestations but they can often times make them more manageable.

It takes time to find the right med and dosage amount and time of dosing, a good geri psych doctor will work with you and your mom to hit the sweet spot so everyone's getting through dementia with a little less trauma.

Good luck!

Cynbar

It is very likely she will suddenly recover and become calm and rational. Her brain isn't working right, and I think she might be farther along the dementia path than you are aware. I know it's not what you want to hear, but I don't think it's safe for your children to be with her. And you can't really expect them to handle her rages, especially if the rages are directed at them. I know it can be difficult for me to handle , and I'm an adult with (sadly) lots of experience at this point. She's not thinking clearly and can't be expected to. So sorry this is happening, it's difficult for every family of a PWD to realize that everything has changed. Actually difficult doesn't do it justice. Please come here often and ask any and all questions, you'll find a lot of support and advice. Some of it may not be what you are expecting, but it all comes from the heart.

John2.0.1

Based only on what you've said so far, I'd echo concern about having your middle school kids living there. It's almost certain to only get worse and worsening can proceed faster and faster. Should your kids have to deal with it day on day. It could be traumatizing to them.

How far away does your mother live? Does she have financial resources for an in home adult aid? You probably need to think sooner than later what care facility she can afford if she can't live with you. That will come and probably sooner than expected.

Do you have durable power of attorney set up because the day will certainly come that she will be incapable of giving informed consent. If she'd willingly set that up it's better than having her declared incompetent.