my mom

irene912

My mom has dementia, seems to be progressing fast. She lives alone, I live close by. My siblings live a few hours away.

I'm trying to get her to stay with me but she asks to go home a lot. We've recently started having an aide come. She is VERY resistant to this. She forgets why the lady comes, who she is, etc, etc. I feel like it's causing more grief. Lately she's becoming more nasty & sometimes mean with her comments. She's also mad she cannot drive.

It's hard knowing what the right thing to do is. Do I just keep her at my house? Let her be home some & try the aide longer? I am going to need help, even if she stays with me, because I can't be home all the time & would be hesitant to leave her for long periods of time. Any thoughts or advice from anyone would be greatly appreciated!

MP8

Hi, irene912. So sorry you are going through this.

Have you spoken with her physician about her anger and her derogatory comments? My mother was awful for a while and once got so angry that she tried to hit me with her cane. The doctor prescribed medication and we've had the dosage adjusted when the agitation/anger reappeared.

There isn't a "right thing" to do with regard to your mother's living arrangements. The goal is to keep her safe. I tried having my mother live with me and I was really resistant to the idea of moving her into any kind of facility even though my mother and I have never really gotten along. I just felt it was my duty (not to mention that it was less expensive having her here). When it got to the point where it wasn't safe to leave her alone at all and she refused to go to a day program, I thought about having someone come in but the logistics were too daunting - if the caregiver quit, got sick, or anything else, I didn't have any backup and there are times when I have to be at work, not work remotely. And having home help was also expensive. The whole thing was too stressful. She's in assisted living now and that has worked well for us thus far. She feels independent and has made friends, while I know she is safe. But everyone is different. (BTW, even if you decide to have her stay with you, it would be a good idea to explore care options in your area. There may come a time when you aren't able to care for her and knowing what's available will help you long term.)

Luckily, my mother had a DPOA executed some time ago and had put my brother on her accounts; she also signed medical POA. But making sure paperwork is in order and consulting a certified elder law attorney is important to do before she's no longer able to make decisions.

solerdr

I agree with MP8's comments.

There is not shame in putting your mother in a memory care facility for it is for HER safety. And know that you are doing the best you can for I am sure you have not ever been in this situation.

Moving a loved one is not a sign of our failure; rather, it is an act of love for we must truly sacrifice our own feelings for the safety, and betterment of the ones we love.

Moving your mother to a facility where she will get the care she needs and to a place that provides her safety is an ACT OF LOVE on your part.

All the best to you.

Lisa532

It’s such a frustrating struggle, I’m right there with you. My mom lives alone nearby. I have cameras set up around her house which I check all the time. I do meal prep so she only has to use the toaster oven. She wears a medical alarm in case of falls. I also have a medication device that only opens twice a day with an alarm. All of these enable her to be independent and live in her own home, which is what she’s always told me she wants. I have aides that come in the morning and afternoon. As I work full time. She’s gets angry when she is stressed, so I try to do everything to keep her calm…and that is always changing. I think each person is different, but just try to keep her safe. Quality of life is what I try to focus on. She’s happier with the aides than she is with me. 🤷🏻‍♀️ And she wants to live in her own home. Good luck with all the decisions…it’s a lot. You’re doing an amazing job, in case nobody has told you.

irene912

Thank you all. No, I have not spoken to the doctor about her being mean lately, it's something fairly new. I wonder if its' a medication she started, if the aide is causing anxiety or just the dementia . I've tried holding the new med, to see if things change. Lately, I feel like I just want to keep her with me as much as possible. It's just not good her being home alone. Yes, I feel it's my duty & felt guilty even with an aide coming to her house & my not going there a few days. Lately I've been thinking adult day care will be good but having trouble finding one. She always says, maybe I need to go in a home, but with the dementia, is that what she really wants? I would be sad to put her in a facility, where I wouldn't see her as much & I'm just a visitor. Mom doesn't eat at home or take her meds. She has back pain from an injury & won't take meds for it. I know she's in pain when I visit. Maybe I should take her to look at a place, see what happens. I feel like I'm mourning the mom I used to have. Thank you all for the support.

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Emily 123

Hi Irene,

If you think her meaness was fairly new it might be worth discussing with her doctor and having a UTI ruled out.

It's important to understand that while your mother may look the same to you outwardly, and be able to have a conversation with you, inwardly the disease is progressing and making everything much more challenging for her. Making and remembering a rational decision about moving to a facility will be a reach for her. It may be that making a move will place less demands on her as her ability to manage her home fades.

I would take a stroll through the threads here, by using the magnifying glass on the upper right of the page, to read from others about what happens when you move a parent with dementia into your home.

There are also excellent threads on what to look for in assisted living/memory care.

If you want background reading these are excellent :

https://alzconnected.org/discussion/65171/books-about-alzheimers-disease

https://alzconnected.org/discussion/65993/excellent-handout-packet-dementia-stages-cgs-actively-dying-tam-cummings#latest

irene912

Hi Victoria 2020- Thanks for your response. I'm just trying to care for my mom the best I can now. Don't know if I'm ready to make that step. Am I wrong with that? HOW DO PEOPLE KNOW WHEN IT'S TIME FOR MEMORY CARE/ASSISTED LIVING? If I have my sister's help, I"m trying to keep her with us & care for her as long as we can. It will break my heart to make that step. I have POA, so the legal decisions are taken care of. What I meant is that when mom is home, she does not eat. We leave her food, prepare food, take her shopping...she just won't eat, says she's not hungry...lives on ensure, will take a few bites. She eats very little & is losing weight. She needs pain meds for her back but doesn't/forgets to take them when alone. Just lately I've been overwhelmed. I think it would be good for her to live with me & split time at my sister's. We've had the aide come to my home this week but mom was very anxious, came upstairs & wouldn't even sit with the aide, so it was a bust. And not good because if she stays with me, I'm going to need some help sometimes. She's taken care of me all my life, helped with my kids & babysat them, now it's my turn to care for her.

irene912

Emily 123, Thank you for the message & kind insightful words. I will definitely read messages on here, thanks. And the resources you sent are great. I"m hard on myself. I feel like I'm critical on what i'm not doing or how I react to mom sometimes. Need to work on that. I need to just breathe. Mom's hearing is bad, so sometimes I feel like she doesn't even hear me when I respond or say something. I needed to take mom home last night, her aide is coming today, I have a busy day today, so I won't be home & don't feel I can leave her safely in my home all day alone. She was very NERVOUS going home, didn't realize she had just been there 2 days ago, she thought it had been a week or more. I left so sad & frustrated and thought 'can I do this?, can I handle this?"

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MP8

Hi, again. Another resource is the Alzheimer Association Helpline. They have experienced social workers who are available around the clock at no cost to you.

Someone on this board recommended that I call when I was super-stressed about my mother. I was hesitant at first but (and I've called several times) just hearing a calm voice on the phone lowered my stress, and having someone who listened and understood what was happening AND suggested resources and plans of actions was . . . amazing. I was crying about my mother before calling, and then I was crying after the call because I felt cared for. 800.272.3900

Emily 123

Hi Irene,

Victoria has a great suggestion.

When you feel like your life is being overtaken by anticipating her needs and behaviors, it's reasonable to look into alternative ways to keep her safe and sound. Ideally there should be a balance between everyone's needs. It would be good to at least look at all the options for your mom's care.

It's not your fault that the progression of her disease is outpacing what you can provide for her. Sometimes there's a tipping point, where the person just isn't able to cover up the losses they're experiencing very well anymore, and we realize they require a lot more oversight.

Keep in mind that dementia isn't just about memory, it's physical losses too (like vision and understanding/interpreting what people are saying), as well as losses in managing emotions, being able to think logically, and doing multi-step tasks in the correct order. That's a lot to handle, when it comes packaged in an adult body that has a pre-established parent/child dynamic with you.

Your mom needs routine because she no longer has the capacity to adapt to change, even if it's something simple. Changes are disorienting for her, which leads to her becoming confused and perhaps a bit angry. My mother was also forgetting to eat, forgetting to take her meds, wasn't recalling why she was living with me because her short term memory was shot. She also has anosognosia, where she lacks awareness of her changes. That means she still sometimes gets angry at me, because In her mind I'm trying to manage her life, and yes, she will still try to put me in my place with a few snippy remarks. Love that.

What worked well for her was to be out of my home, into a place where she had sameness to her days, and decision making and tasks were removed from her plate. That let us regain a bit more of our mother-daughter relationship. If your mom has tentatively brought up moving to a place, I'd run with it. Good luck!

irene912

Victoria2020, MP8, Emily 123, Sorry it's been a while since on here. I so appreciate the comments. I've decided to have mom with me most always, unless I'm away. She stayed with my sister & stated, 'don't bring me here again'. I am looking in to respite care, for when needed.

I may have to try the Alzheimers helpline. I've been at my wits end sometimes & I just vent to my husband. Someone else, who can offer advice would be nice.

My sister & I toured an assisted living. I don't think it's time for that. I want to exhaust all other resources before putting mom there. My sister has been pushing it, but lately she realized mom may need to be in memory care vs the more independent assisted living. It was sad touring the memory unit. I want to avoid that as long as I can.

Emily 123, You are so right about mom not adapting to change, doesn't know why she's with me & has snippy remarks for sure.

Now, I"m figuring out how to adjust mom to having an aide around. Right now, we have a fabulous caring person trying with us to make it work. Mom has cut the aide visits short, one time wouldn't even let her in her home & said, "i'm fine today, I don't need anything." And,' I didn't know you were coming.', after her & I talked about it of course. So, I'm having the aide at my house now, just trying to figure out the best way to handle it. Does anyone have experience or advice on that? I'm thinking have our aide give mom some 'alone' time, still be around & in the house, but not under mom's nose, just be in another room & give her some space. Please bring some advice y'all! I so need this to work & want mom to get to know this nice person & have someone else in her life she can trust & chat with.

mommyandme (m&m)

I wonder if having the aide needing help might work? Maybe the aide could ask advice about things, bring something from home your mom might physically help her with. Turn the tables in that your mom is actually helping the aide. My mom loved to help others, probably where my idea comes from.

just a thought.

irene912

mommyandme Thank you. That's actually a great idea. Or something I need help with that they both can do. That could really help! Thank you!