Am I doing the right thing?

Jbouchard

Hi everyone,

I am caring for my mom with early-onset Alzheimer's. She is 58 years old and she moved in with me last July, 2023. Before then, she was living in her own apartment in a different state and my grandmother was living with her, so she was able to care for her, while still allowing her to feel as though she had her full independence. Now that my mom has moved in with me and my husband, she is hyper-aware that we need to help her with everything. She has lost most of her independence. The transition was difficult for her. She has posterior cortical atrophy, which affects the back of her brain first and foremost, disorienting her visual comprehension and depth perception. Her vision is great, but she doesn't understand what she is seeing, and most times does not see what is right in front of her. She can totally miss a person standing in front of her, but on the other hand, she can spot a crumb on the floor 15 feet away. It has been a very challenging illness to learn from, work with, and make accommodations for. I have put bright colored tape on the floor to help her find her way to her bedroom and bathroom, I have cleared everything off of surfaces so she doesn't get confused and overwhelmed, I have purchased sorting / rhyming / motor skills games for her to practice with, I have tried getting larger remote controls and different colored buttons to allow her to be more independent when using the TV (none of it worked), and so much more. As a teacher of 10 years now, all I want to do is understand her perspective and help her through it. But I have learned that in most cases, there is nothing I can do to help her because there is no way for me to know what she is really seeing.

All of the things she used to enjoy, she can no longer do. She loved playing card games, doing crosswords, reading, playing games on her phone, doing puzzles, making collages, etc. She gets so frustrated and anxious when we try to do activities now that she just shuts down. She tries at first, then gets very agitated and upset. She can barely watch TV anymore because she can't really see what's going on. She can't look at old pictures, which is something that she brings up and we try often, but it always ends in frustration.

Lately, my mom has been saying that I am lying to her and playing "stupid games" with her. I have tried to figure out or understand where this is coming from, but she just gets angry and we get nowhere. She also has this new obsession with thinking that I am putting something on her dog and my dogs. She goes to pet them and she says I need to stop putting "that stuff" on the dogs because I'm killing them. I don't know where this came from and what she means, and whenever I assure her that the dogs are okay and we aren't doing anything to hurt them, she gets very angry and again, accuses me of playing games.

She always states that she is bored and she hates sitting and doing "nothing all day". I've tried so hard to find things for us to do together and things for her to do "independently" that aren't too challenging. But when we do these things, she gets upset with me that I'm making her do things she doesn't want to do and she just wants to rest. Then we rest, and she says she has no life because all she does is watch TV. Whenever I give her a couple of options of things for her to do, her response is always "whatever you want."

Now, I know this is her illness. I'm aware that her perception of things is distorted, and I try not to take any of this to heart. I just wonder what I could do differently in these situations. I know it's best not to argue or try to correct, but what do I say when she thinks I'm lying to her or that I'm hurting the dogs?

In one week, it will be one whole year that she has been living with me. I have enjoyed having time with her, but I have been in fight or flight for that entire year. I've been working full time as a teacher and team leader (we have had homecare workers come in during the day), then coming home to care for her after work, then working on a master's degree at night. I also have five dogs and three cats, including my mom's dog. During this past year, my husband has gone away to treatment for alcoholism, my grandmother's lung cancer has spread to her stomach, my sister has been homeless, and the rest of my 6 siblings have offered no help. I try really hard to keep my stress and anxieties away from my mom, but sometimes it's hard. I just want to do what's best for her. I know she is not ready for placement. I just need advice. I've never been so lost.

Thank you.

Jessica

mabelgirl

My goodness you are carrying a heavy burden. I wonder if you are really in search of permission to place your mom in a facility? There is so much stigma with that move and you may possibly feel as I do, that somehow I have failed her. I think my mom senses my frustration and stress. I think it makes her more agitated. I believe you need to consider what’s best for the family, which includes you. It doesn’t absolve you of ensuring your mother gets cared for if she moved into a facility, as you will still need to advocate for her. I think you need to consider it.

Prayers for peace.

M1

Welcome to the forum. It sounds like she is becoming somewhat delusional and paranoid, and the uncontrolled anger is probably also due to progressive brain damage. She might respond well to an atypical antipsychotic like Seroquel or Risperdal, it's probably worth discussing with her doctor.

Since vision is problematic, would she enjoy books on tape or music? Hearing might be more reliable for a time. Just a thought...

Jbouchard

https://alzconnected.org/discussion/comment/213517#Comment_213517

Thank you for your reply. I do read to her a few times a week. I also bought her a radio that only has one button at the top to turn it on and off, the rest of the controls are hidden so she cannot accidently change the station and it's less stressful for her to use. As for the medication, she is already on so many and she comments on this all the time. She is taking 4 different medications in the morning and 3 more in the evening. I will bring it up to her doctor in private to see what she thinks, though. Thank you.

JM27

Hi there. Sorry you are going thru this. I had my Dad here last year over the holidays and similar to your mom we would suggest things and he would have no input. We would go out and do things and he would not remeber and all he talked about is how he has things to do and needed to get back home.
Not fully understanding dementia I took him back home after 6 weeks. He lives by himself and fast forward 6 month later and he has progressed and things have gotten worse. I have now made the decision to bring him to California to live with me and my family. I’m worried of the what can I dos or say to help keep him busy and independent while he is here. And I worry that because I am making the decision to move him from everything he knows am I doing right. I have an older sibling who seems to have no concerns of my father’s wellbeing. So I have been left to make these decision on my own. I know once my sibling knows I’ve moved him here he will play the well I didn’t know it was that serious and the no one told me.

My main concern is my fathers well being and safety. I will also look into MC for him as well.

This is such a hard thing to navigate and deal with.

Someone on here said try taking emotions out of the decision and look at is as a caregiver even though that sounds cold it might help you make the decision that is right for you, your mom and your family.

Good luck to you!

H1235

Wow and I thought I had my hands full. You can not do it all! I sometimes need this reminder also. Something or someone is going to suffer. It may be your mental or physical health, your career, your marriage… If your mom was thinking clearly would she want you to be in this situation because of her. There is such a negative stigma around not caring for a loved one in your home. It’s too bad. AL will allow you to be her daughter again. She would have some independence from you, her own living space and maybe be less resentful. I would encourage you to at lest consider it and look at what is available. If you don’t want to make this move now you might be glad you looked into it down the road as things get more complicated.

I hate that my mom takes so much medication and the thoughts of adding another to help with her moods was tough. My thought is being angry, down and suspicious must be very very difficult for her. Sure there are probably side effects and taking so many medications cant be good, but she is not going to get better. If there is medication that can ease some of her symptoms and help her lead a better life, I think it worth considering. You are clearly a strong woman you will get through this.

Jbouchard

https://alzconnected.org/discussion/comment/214701#Comment_214701

Thank you for your thoughts and kindness. I appreciate it very much.