I’m so lost - mother is 90, English is a second language

lisn2cats

I am so lost. My father recently passed away - somewhat unexpectedly - and, as an only child, am left to care for my 90 year old mother. I had not realized just how bad her short-term memory loss had gotten (dad never said) and I suspect she has onset dementia, She refuses to talk to a doctor or anyone about her mental health. I attribute this to her asian culture. I know that grief is compounding the problem, but it’s getting worse and I am seriously worried about my own mental health as I am juggling work, figuring out all the paperwork, struggling with her … everything … and not having time to grieve for myself.

In one of her good moments, she agreed that she needs a home care aide but not every day (I beg to differ but did not push it). We met with one, she said okay, I signed the contract and now she is demanding to know why she has someone coming in and that I am somehow forcing her to do things she doesn’t want. She picks fight with the poor aide, calls me to complain, then just as quickly forgets. That’s the tip of the iceberg.

Lately she tells me I never loved her and that I only loved my father. She has accused me, to my face and her friends, that I prevented her from going to my dad’s funeral and no one told her about. This is after I posted it on all of her physical calendars and on the refrigerator…the service isn’t until the end of the month.

I am emotionally drained and, if I could, would like to crawl under a rock for the next foreseeable future, Of course, I can’t and wouldn’t as she is my mom and I love her. But I cannot care for her this way. I thought about social services but see that as a last resort.

And, nope, moving her out of the house is out of the question. Is this all normal?

ARIL

I am so sorry for the loss of your father, and as an only child myself (my dad’s POA and with a full-time job), I find many aspects of your situation and your feelings about it to be recognizable.

I don’t pretend to have answers for you, but I will say this: This is a marathon, not a sprint, and you will have to make the best incremental decisions you can at each point along the way. You are already doing that. Have confidence that that is so. You will do your best as each new decision point presents itself. Sometimes decisions will feel like small things; sometimes they will be major. They will usually come about unpredictably.

Is this normal? Well, as much as it hurts, these kinds of behaviors are not uncommon for a person with dementia, especially a person who is grieving and (likely) frightened about all the changes in her life.

Are there people your mom might listen to? Might she see a doctor about physical needs, and might that person be helpful otherwise? Can you consult her PCP directly for advice? Might the PCP suggest other helpful people (e.g., home health, a social worker) who could begin some care or offer counsel to you? If you are in the US, your Area Agency on Aging could be useful. Are there Asian community centers or religious organizations or other culture-specific resources nearby?

I know from my own experience that it is a hard road to travel, but there are people around who can help—both your mom and you. It’s a whole big operation to find them, but it’s great you are here and reaching out. I hope others will have good suggestions for you. I also hope you will prioritize your own health (not easy for me, BTW, but I know it’s important!). Wishing you well, in solidarity…

lisn2cats

Thank you for your kind words and also advice. I did ask her PCP to conduct some sort of test, in a subtle way, since my mom immediately gets defensive and angry whenever memory or her mind is mentioned. I thought about our County Office of Aging; I'm a little afraid that they will send a case manager and make everything worse BUT it shouldn't hurt to just talk to them. Because our culture (Japanese) doesn't really address mental health or dementia openly or well, it's the one support they lack. We do have a home aide, but she is proving to be not very experienced with my mom's kinds of mental/memory needs. I need to replace her but it was soooo hard to get her in the house in the first place and now mom doesn't want anyone. Her friends (Japanese) visit, but they don't want to become her caregivers. Then, again, (and I feel so horrible saying this out loud), I don't want to be her caregiver either. I'm not equipped to give her the best care.

I do appreciate your suggestions though and will be making some calls this week. It's nice to know we're not alone and that there is hope and support. I might also look for an online or local support group to join….even just to listen.

Thank you so much - you have no idea how much this has helped.

ARIL

You are most welcome. I felt for you and wanted you to feel less alone. BTW, it is great that you are as clear as you are in your own mind about what is feasible/reasonable and what is not. You will do the best you can now, and then at each point along this unfolding path.

PS I ultimately didn’t find my dad’s Area Agency on Aging of much direct benefit, but it was useful for me to learn what their services were, and calling them helped train me to talk to strangers about my dad’s situation, which was not too easy for me at first.

ALCB

I'm so sorry for your loss. Figuring out how to deal with family deaths in and of itself is difficult, let alone when it relates to caregiving for someone with dementia. My family has been very lucky in that my grandmother rarely gets angry due to her Alzheimer's, but it is very common for someone with dementia to suddenly become angry and blame the caregiver—although I don't have much personal experience, I see it on this forum all the time. Especially because she is grieving, she is likely scared to face her illness even if it'll help her. I don't have much advice for you, but I'm glad you found this forum, even if it's for difficult reasons. Know that we're all here to try to help whenever you have questions, concerns, or just want to vent.

lisn2cats

Thank you. I think just finding this forum has been a huge help - and it's only been 2 days! It's nice to know that the struggle and challenges are real, and that emotional outbursts are normal. I need to learn not to react right away and just let the hurtful words flow through me. SO happy to have this space to learn and vent.

H1235

Welcome! I have attached a link for new caregivers. I would recommend the staging tool, understanding the dementia experience and the 10 absolutes of dementia care. These may help you understand where she is at, what is to come and how best to interact with her. Do you have a DPOA? Do you think she would sign one? It’s usually best to present it as a preparedness kind of thing. I would avoid any conversation with her that involves her bad memory. If signing a DPOA is not possible you may need to resort to guardianship. An elder law attorney is best. Anosognosia is common with dementia and is the inability to see their own symptoms. It is very difficult for our lo and for us. I found communication with the doctor worked best through an online portal. There should be no shame in admitting you can’t care for her. I don’t even like the way that sounds. Because finding her a good facility, handling finances, bringing her supplies and visiting is caring for her. So sorry you are facing all of this in addition to the lost of your dad.

https://alzconnected.org/group/32-new-caregiver-help

lisn2cats

Oh my gosh, this group is a Godsend. I DO have a POA (not a DPOA), which I carry with me everywhere (just in case). I cant't believe one of her conditions has a real name…anosognosia. I found the portal where I can message her PCP. Since she has an upcoming appointment, I asked her doc to address these other concerns. I have the link open and am reading every word.

It's like losing both parents at once, except the one I should be grieving with is incapable of reciprocating care.

Thank you. I feel like I have guardian angels. Maybe this is my dad helping me from the other side☺️

ALCB

https://alzconnected.org/discussion/comment/238699#Comment_238699

Not sure if this is the staging tool @H1235 is talking about, but here's one I've found super helpful that a member shared (I forget who—sorry!)

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

Although this is very helpful to prepare for what's next, every person with dementia is different so do take it with a grain of salt to some degree. I just use it so I can prepare myself roughly for where my grandmother's probably heading.

Also, thank you, @H1235 —just joined the group, and it's so helpful!

lisn2cats

https://alzconnected.org/discussion/comment/238873#Comment_238873

Oh my gosh - this is so helpful. Checking off the boxes, my mom seems to be between stages 2 and 3. Yesterday we had such a good day…but only because her friend spent all afternoon with her, engaging her in conversation, and showering her with attention; when I went there (reluctantly) to make dinner, she was happy and almost her old self; then when her neighbor stopped by, she was on Cloud 9. She was engaging, talkative, a little repetitive, but she was my mom again. Today, it started to slip again. She can't find her key (her purse never moved so it was right there), she burned a boiled egg, she joked that she must be super forgetful today because of the weather change, she said she didn't xyx and that she was just only joking (can't I take a joke) - uhh, it wasn't a joke/funny.

Anyway, this is a great guide to follow. I have a consultation with a case worker tomorrow to find out what are the options, consequences, etc. I think that her safety and health have to come first, even if means her not wanting me around anymore. But…we'll see. I don't want to move too fast or move forward based on fear.

I love this forum! Thank goodness!

Giving everyone a warm hug of support and thanks.

john813

Keeping them engaged in conversation seems to help. My father has hearing loss ans ESL, so it's not easy. I feel for you...

lisn2cats

Thank you so much @john813 . It's unfortunate that my mom's condition doesn't just include the regular "stuff," but she's alienating her friends - her support group - one by one by wearing them with unrelenting barages of texts (garbled and often accusatory and even mean), calls, and complaints that no one is doing enough for her. Two of her six friends have already messaged me to say that they can't keep dealing with this and it's too much, which I agree. They are friends and didn't sign up to be her caregivers. She addresses her caregiver/companion as her housekeeper and calls me each day to tell me she's lazy and doesn't spend her time cleaning.

I finally have to block her on my cell for a few hours each day while I'm at work or need me-time.

My friend had a good idea though…since her big thing is "no one pays attention to me" and "no one visits me/takes me out," I'm having her friends take selfies with her when they visit. I text them to her and will be printing out small photos to glue on her calendar so she can see who's been visiting her each day.

I don't know. I didn't sign up for this either and, some days, I get so frustrated and angry then feel so guilty because she's suffering so much and her struggle is so scary for her (whether she admits it or not).

I guess we just soldier on and appreciate/cherish the good days.

john813

That's all we have. I wish you more good days. The hard part is when their friends shun them, too. Trying to keep my father speaking his native language to keep him active....

jkravitz812

Hi I went through a similar situation to you. My mom passed away from Cancer in December and she was my dad’s primary caregiver(my dad has dementia).I believe dad was worse then my my mom let on and he further deteriorated when she passed. My brother and I were both close with my mom and grieving for her while caring for my dad has been difficult. We ended up choosing a MCF for him which he is slowly acclimating too. It’s not perfect but having him in his house wasn’t working either. Some days my dad knows my mom is gone and others he asks where she is and looks for her. Either my brother or I visit him(or another family member or friend) almost every day.I believe a MCF is better for him then being isolated at home with an aid, plus he is safe. At his home he would wake up all night wandering and try and leave. When my mom passed he thought it wasnt his home anymore. It’s so hard watching your loved one go through the stages of dementia/ Alzheimer’s. All you can do is continue to show them you love them and keep them safe and as content as possible.