beginning this journey with my mother. feeling alone

A.RosaWinkle

Hi, I feel really alone. I am new to all of this. This is the first time I have gotten into this website. Will have my first support group meeting next week.

My mother lives far from me and I believe she has some sort of dementia, but early stage. My mother's short-term memory is not good. She has forgotten how to use the cd player, alarm clocks, etc. but is very careful using appliances and driving(no problems yet). She can cook and clean and garden. She may have been declining for a year or more, but was able to hide it from me until this spring.

There are few Neurologists in her area. I called this spring and the soonest they can see her is September 2026. Awful. I had her get checked for a UTI, but had not heard of the MOCA until now. Would it be too early to ask her primary to test her? I stayed with her for 2 months this summer to get to know how her brain is working(and to make some good memories while she and I can). I am in a better position to help my mother long-distance, and will be visiting every couple of months. Obviously, things will change in the future, and I am prepared to drop things and stay with her for more time as she declines. I worry all the time about her(and yes we talk every 2-3 days) and dread getting a phone call telling me she has been hurt in some sort of accident.

She does have a support system in the small town where she lives. There are places to go for help - she does go when she needs to, and neighbors are keeping an eye out. She has a friend who calls her every day. I didn't want it to read like I am leaving her to fend for herself.

I haven't had the opportunity to chat/read/talk with caregivers in my situation.

I appreciate being able to write all of this to an audience that may understand. It's pretty lonely out here.

JulietteBee

Hugs! 🫂

You got this! When the stressful times come, and they will, simply remember to breathe.🙏🏽

SDianeL

Welcome. So sorry about your Mom. Soon your Mom will need 24/7 care. There is no way to know how the disease will progress. You will not be able to manage her care from far away. Your options are to move her in with you, hire 24/7 care which is very expensive or a memory care facility. I would start planning now. Please don’t wait. Meet with an elder care attorney in her state. You will need a DPOA and Medical DPOA and HIPPA forms to access her medical records. Ask the attorney about how to pay for your Mom’s care. I would be concerned about her living alone now. She could start a fire and not know what to do. I would also be concerned about her driving. If she is in an accident she could be sued and her insurance could refuse to pay. There are other things besides memory that dementia causes. Spatial and reaction time difficulties. Read the book “The 36 Hour Day” which will help you understand the disease. Search online for the 7 Stages of Dementia and look for a chart that lists behaviors. Come here often for info and support. 💜

Jgirl57

Welcome ; It is not too early to talk the primary doctor and request office testing for cognitive decline .

H1235

Welcome. I have attached a staging tool that may be helpful. Living on her own is tricky when you are far away. When my mom was diagnosed she was told she was not safe to live alone or drive. I was shocked and disappointed in myself that I didn’t recognize it and I don’t live that far away. Keep in mind that many with dementia have anosognosia. This is the inability to recognize their symptoms or limitations. She is not going to recognize when she is not safe alone in her home. This also means she may try to do things she is not capable of, this could be something dangerous. Assisted living facilities can have a waiting list, so I would recommend you start considering what your plan is when she can’t live alone. Having her in a facility close to you probably makes the most sense. Have you and your mom seen a lawyer. This is very important and should not wait! The usual recommendations are DPOA poa medical, will and living will. Since you live in two different states and she will probably be moved to your state at some point I would run this by the lawyer as well. Different states have different programs and qualifications. You should also consider asking questions about finances. Does she have enough to cover Al or mc? Dementia is very expensive. While on the topic of money, finance and numbers is often one of the first problem areas for a person with dementia. I would keep a very close eye on things. This early stage is when things can go bad fast. Several on here can tell you horrible stories of their loved one being scammed out of a life savings (she is more vulnerable now). Or buying a brand new vehicle while loved loves are considering if they should even be driving. Extremely poor judgment is a symptom of dementia. This site is wonderful. I think you will find it very helpful.

Staging tool

DBAT.pdf

Good article

understanding-the-dementia-experience.pdf

A.RosaWinkle

Thank you all for your kind responses and very helpful resources. I have been a bit paralyzed, overwhelmed, etc, but I will educated myself to do the best for my mother.