Not sure where to start in the Forums

Mark_M

Hello,

My name is Mark. My mother is in Stage 4/5 (my assesment based on a Behavioral Assesment Tool from Dr. Tam Cummings). My mother lives in Texas and lives with my little sister. I live in Virginia and my other sister (middle) lives in Washington. My mother and sister have lived together for 30 yrs and very codependent. Unfortunately, this is how my sister fell to be the primary caregiver.

Mother was diagnosed with Alzheimer's in 2023/2024 but I didn't know about the official diagnosis until 2025. We have noticed the memory decline during that time over the phone but wasn't aware of symptoms until a Thanksgiving visit in 2025 and I asked about a posible diagnosis.

Now, I'm trying to help my sister out as she's obviously overwhelmed in her current situation. I've been doing tons of research online and podcasts and that's been overwhelming for me as I don't know where to start helping.

My middle sister recently visited and shared some demensia symptoms that I find troubling and wonder how well my little sister is truly handling things. We are almost more worried about my sister's mental health as a caregiver than my Mom's struggles with the disease. That sounded weird when typed out....

I've already seen so many wonderful conversations on this forum so super excited to participate. I'm not sure how I'll be able to convince my sister to register and ask questions though. I don't want to come across as "you SHOULD do this and this...".

Prior military in a specialized field, and I am a high-degree "problem solver", to my own detriment, and can be overwhelming for others I am trying to help/guide. It's a struggle...LOL

Thank you for listening and hopefully I can provide as much mentorship as I hope to get from everyone here!

V/R
Mark

April23

Hello Mark, and welcome. First of all, so sorry you have to be here but glad you found this forum.

I think you are wise to worry about your sister as well as your mom. There are many stories of primary caregivers suffering health issues, ignoring their needs to their detriment, etc. It's easy to do. Full-time caregiving of a PWD is an all-consuming 24/7, 365 situation.

Does your sister have medical and durable POA over your mother? If not, does someone? Normally the POA should be the primary caregiver but if that's not the situation, whoever has POA needs to work with sis to get her the resources she needs, as she is somewhat limited without it. The POA is the decision-maker, ultimately. So hopefully one of you is already in that role.

If you want to start helping sister, the best way to do that is to ask specifically what she needs. Is it physical help? Time away for herself? Local resources? Tools on how to best communicate with mom? Help at night? Help with doctor's appointments? A support group? The list can be long. Asking how you can help is the first step in getting her what she needs.

Who is taking care of finances and paying the bills? Not mom, I hope. Also mom should not be driving.

If you are seeing things that trouble you, there are most likely more things that you aren't seeing. But also realize that dementia will progress and new symptoms will appear no matter what anyone does. It progresses and doesn't get better no matter the situation. Of course you want the best care for your mom and you may have real concerns to address. But don't automatically think that because mom is progressing that it must be due to lack of care. There may be issues, or it may be natural progression, that is for the family to determine. Can someone visit sister and mom soon? Being around them and seeing the dynamic will help.

After asking sister what helps she needs, my second piece of advice would be for the siblings to educate themselves on the disease. There is a great book, "The 36-Hour Day" that has lots of helpful tips for caregivers (which all of you are, ultimately). It will also help you stay ahead of the disease as it progresses. The James L. West Center for Dementia in Fort Worth does amazing educational webinars and videos if you want to check them out.

This is enough, others will have great insight. Come here often for help and advice,.

H1235

Welcome. You have been given great advice. My brother was mom’s caregiver early on for a short time. Based on that experience I can tell you that not everyone is cut out for caregiving. It’s not that my brother doesn’t love mom or that he didn’t want to care for her, he just had absolutely no clue, was in denial and had no interest in learning about dementia or how to be a caregiver. I’m not saying that’s what you are dealing with, but still you might want to consider if this is something you think she is capable of. Caregiving is really a 24/7 job. Is your sister trying to work from home and manage your mom? While I think it’s a great idea to ask your sister what she needs, if she is in way over her head, she may not be able to think clearly and express her needs ( anxiety and exhaustion can be crippling). You or a sibling may need to plan a weeks stay with them to really get a feel for what is happening. Don’t be fooled by a good phone conversation with your mom or a short visit. I think you are in a very tricky situation. You want to give resources and advice, but she is the one living it everyday and it would be easy to come across as meddling and making suggestions that really won’t work in her situation. Some people feel an overwhelming obligation to care for their parent in the home regardless of the sacrifice that it requires and sometimes even to the detriment of the person with dementia. Some people are determined to be a martyr. Be cautious of this kind of determination. Maybe I’m just projecting some of my own experience with family. I obviously have no idea what the situation is. I will attach a few resources that might be helpful. Good luck navigating this very difficult situation.

understanding-the-dementia-experience.pdf

Anosognosia and Dementia - AgingCare.com.pdf

https://iona.org/therapeutic-fibs-ok/

https://www.helpinghandshomecare.co.uk/care-advice/what-is-show-timing-in-dementia-patients/

https://www.medicalnewstoday.com/articles/confabulation-dementia

https://www.creditkarma.com/credit/i/how-to-freeze-credit

SusanB-dil

Hi Mark - agreeing with what's been posted, but also just want to suggest that maybe your sister could check out adult daycare for your mom? Maybe a couple days a week? We called it the community center for MIL. Unfortunately, MIL is beyond this, now, but for your situation, it might give your sister some respite through the week.

Also - yes, Teepa Snow and Tam Cummings videos are helpful. The book 'The 36-hour Day' as well. Can go to any chapter or section that is relevant at a given time.

ARIL

Glad you found your way here, and your remark about your problem-solving tendencies made me smile. I too tend to think that things go better when I’m in charge. LOL.

Others have given very good and thoughtful advice. Having dealt with a situation involving dementia from long distance, I agree that the phone calls show only the tip of an iceberg. Visiting for multiple days and staying in the house with them is the only way to learn what the situation is. It may be quite alarming on multiple counts. Keep lists. Also think about people who might be helpful with information or direct assistance: physicians, friends, other family, neighbors, clergy, the letter carrier?

And yes, legal matters are critical and a top priority. Is there a POA, and if so, who is it? Who is managing the finances? How do the three siblings get along? What is the communication like?

I hope you and your sisters will find good ways to work together. This journey is very hard, and family drama is common. I’ll also say the obvious, but I hope it will land OK with a fellow problem-solver: Try to listen first. Hear your Texas sister. What is her life like? I sense that you and the Wash. sister are skeptical about whether it is reasonable for TX sis to be caregiving… but you’ll want to see what the situation is actually like for her and your mom. Your problem-solving skills can be put to good use making sure information is gathered, everyone is heard, and a clear plan can be made that will maximize well-being for everyone. That’s written on the idealistic side, of course, but you are tackling this matter by trying to learn, and that strikes me as hopeful.

Wishing you well.

JulietteBee

Hi @Mark_M! Welcome to the club no offspring has ever wanted to gain membership to. However, as members we are grateful this resource exists. A place wherein we can vent, seek clarification, and as needed, just share our deepest fears or aspirations.

As others have pointed out, no matter what you or your sister saw, in your visit, things are 100% worse for your at home sibling.

In the islands we have a saying, "See me and come live with me are 2 different thinks." People with even advanced dementia showtime really well, capable of causing the occasional visitor to question everything they have been told of their LO's condition. They can be extremely lucid on the phone, and at their doctors' appointments. What no one, except your baby sister sees, is when mom takes of the 'mask' when she finally arrives to her "safe place" and let it all hang out.

Plan to spend no less than 7 days wirh them. At first, silently observe. Mid visit, reflect back your observation. Last day - day and a half, make suggestions as to how to improve rapport, how to render support, and to work in a collaborative effort, and give sis ideas for respite.

Men are all problem solvers. However, what they some times fail to realize, sometimes a person may not have a problem for you to solve. Instead they simply need a safe place to land. Your goal in all of this is to be a good listener. Listen more than you speak. Then when you do speak, make your words be filled with approbation and appreciation. Words that will infuse your sister with a sense of hope, love, warmth, and recognition that you will NOT allow her to become lost, forgotten, or consumed in her caregiving role of your mother. Hugs!🫂

Grenah

On a personal note, concerning your sister's mental health. My own sister, who I live with, who shares caregiving duties keeps suggesting that I find counseling of some kind. Time for me is an issue that she doesn't quite understand. I tried one support group, it didn't work out. Have your sister just read some of the posts here. She may find it very therapeutic and informative. It is also anonymous, if that is an issue for her.

Keep stopping by.

Anonymousjpl123

Hi Mark - I am the primary care giver and have two siblings not really involved in my mom’s care. Nothing is perfect, but what had helped so much is all of us just being honest about what’s going on.

You have every right to be worried about your sister and mom’s safety and every right to say it! I haven’t always loved others’ opinions but am eternally grateful that I didn’t isolate so much I made all decisions on my own. At one point I would have taken my mom to live with me and it would have been a disaster. I gave another sibling full access to financial info just to be sure I don’t miss anything.

There is so much you can do not being the primary caretaker. You can research financial and legal stuff (e.g, POA, etc) and options for care, financial options, etc.

I agree with others being a safe place to land is enormously helpful but I also know as sole caregiver my siblings and other relatives opinions have been invaluable, even when they are annoying.

Glad you found this forum. Good solid advice from people living it here.