My mom was recently diagnosed with dementia. How can I start planning for the future?

Welcome, SkyBlueCSS!

I think there are a couple of things you can do to "gear up".

Talk to mom about appointing you POA for medical and financial. You are going to need these to be able to get feedback from her doctors (you can still TELL them anything, but they can't give feedback unless you are on a HIPAA form or have POA for healthcare.) Financial POA does NOT mean that you can do what you want with mom's money; it does mean that if she becomes incapacitated, you can make sure her bills are paid.

Understand that MOM'S money pays for MOM'S care, not yours. Do not co-mingle your funds and when you are at the eldercare attorney sorting out the POAs, ask the lawyer to explain this to you. Mom's savings, assets, income (from SS or pension, income from RMDs, etc) go to pay for her care. NOT YOURS.

If mom is going to run out of money for her care, you need to be mindful of Medicaid regulations in HER state. Make sure that the eldercare lawyer you engage actually understands Medicaid; if s/he talks about "hiding money from Medicaid" politely excuse yourself and leave.

Read EVERYTHING you can about all kinds of dementia. Demetia is not just about memory loss; it is often about loss of judgement, reasoning, abstract thinking skills, the ability to process language (both aural and written) and inititating tasks that have many steps. My mom, for example, had a wonderful memory until the very end. But she could not figure out the sequence of steps to dress herself and would have wanted to start with her outer garments first.

Getting a good assessment of mom's cognitive issues was invaluable to us; it quantified what parts of mom's thinking processes were no longer there, what was damaged and what was still intact. A good neurologist or neuropsychologist will take the time to explain this to you.

We also found that getting mom a switch of docs from her regular internist (who thought everything was fine) to a geriatrician (who saw immediately what was wrong) was a valuable step. Even more valuable? He got mom to see a geriatric psychiatrist, who was the one who figured out that mom's overarching problem was anxiety and her unobservable (to us) cognitive decline.

Finally, learn that you need to take care of yourself. No ONE person can care for a dementia patient full time, alone. Find home care options and if mom objects that she wants "no one but you" stand firm that you can't do this alone.
((((hugs)))))) and again, welcome!

Books:

The 36 hour Day
Atul Gawande: On Being Mortal
Townsend and Cloud: Boundaries
Roz Chast: Can't We Talk About Something More Pleasant?

and yes, Teepa Snow is INVALUABLE.

Many yeses to BarbBrooklyn's response. You are young to have to deal with this issue. This forum is a great help but an in-person support group may be very valuable to you. Teepa Snow has some very good videos on dementia on YouTube. There are also some good books, whose titles escape me but others may provide. Depending on your mother's financial condition, and your current employment situation it may be possible for her to hire you for her care but this will require a written contract. When you go to see the elder law attorney, ask about this as the laws/rules differ from state to state. When you get your bearings, you will need to lock down and protect her sensitive information (SSN, bank acct numbers, passport, etc). If she uses a device you will need to monitor her activity as dementia changes one's judgment, logic, and reasoning and makes them more susceptible to scams and fraud which are very prevalent. I wish you all the best as you navigate this and peace in your heart that you can only do what you're able to do.

Here's some tips I learned from taking care of Mom and having her DPOA.

- Make sure the POA is a Durable POA. "Durable" means the POA remains in effect while the grantor has loss of mental faculties. A plain POA becomes null and void upon that loss.

- Get your mother's finances in order as soon as you can. Get yourself included as a signatory on the accounts so you're authorized to make transactions on her behalf. Now's the time so she can come with you to the bank and sign any papers (do so on those days when she's thinking clearly and understands what she's signing).

- Learn about your mother's insurance policies. Perhaps contact them, especially if the companies are local. Bring your mom and introduce yourself. You can give them a copy of the DPOA while you're there. If they're not local, contact them and speak with them to send them the DPOA so you're authorized to act for her.

- Deliver the DPOA to her local hospital and doctors' offices and include your contact information. My mom had a large plastic bag-full of medicines. Rather than carry all those to the doc's or the hospital, I made a computer list of them, the names, the dosage, and what ailment was it prescribed for. Actually, the staff preferred the list because it made comparing the list to what they showed a lot faster and easier. It was ALWAYS kept current and printed.

- Talk to your mom about her end-of-life wishes and ask her where her will or living trust is. You can ask her to review those wishes / will / living trust on a day when she's thinking clearly.

- Have a frank talk about if / when you decide that you can no longer care for her by yourself. Talk with her about the eventuality of her needing in-home care by a hired aide and about her thoughts or preferences of a care facility. I cared for my mom who had dementia in her own home. There was no way I could have a full-time job and care for her, especially toward the end.

- I see from your profile that your mother's living with you, but does she own any property? If so, take a look at the registered name. If it's in her name, ask her to notarize a "Transfer on Death" document on the property or ensure it's in a living trust. This way you can explain she still owns that property; it just makes it easier and cheaper on you to transfer / sell the property.
-- If your mother has utilities get yourself included as an authorized contact. Without that authorization, dealing with them is a nightmare.

- Since your mother's living with you, will she pay rent, her share of utilities, and for food? Notarize a contract (on her thinking-clearly day) stating what she will pay you and for what. This will avoid any appearance of impropriety and will be very important if she needs long-term care and any Medicaid look-back into her finances.

- Check with her lawyer to make sure it's all legal and proper. The lawyer may also have other suggestions for you.

- You mention student loans. Will your mother pay you to take care of her? If so, make sure you get paid for Social Security and taxes. You must take care of your financial and job futures.

I'm sorry you're both having to go through this.

BarbBrooklyn is boss! A short reinforcement to what she has already posted: get to a good elder care attorney. Make sure all documents are in place such as will, DPOA, living will, etc. Start organizing all documents and paperwork that you may need for the future such as deed to the house, leases, information on financials, insurance policies, deed to car, divorce paperwork, marriage certificates, death certificates (of her spouse if needed), birth certificate, original social security card, any previously purchased funeral plans or cemetery plots, and so on. You will need five years of bank and other financial statements if Medicaid may be in her future. Most states do a five year look back on all financial transactions and asset transfers. Different states also have different rules on preplanning funerals if you plan on Medicaid at any point in time. Do not co-mingle money. Do not try to “hide” money. And please do some self examination to determine what you can manage on your own. Don’t feel you need to take on her physical care. It’s okay to find a facility.

So many great advice here. Please heed them, because they are correct.

To make things bearable for you as her primary caregiver, employ therapeutic fibs occasionally to give yourself some relief. Remember to forgive yourself if you make a mistake or get angry. We all experience that. Easier said than done, I know. But with practice, it gets easier.

As you're plowing through paperwork, be alert for things that don't make sense. My mother had three wills in her study, from different years, stuffed in different drawers and files. The most recent one was buried on the bottom of the pile, while the older ones were out in plain sight. At one point, she signed a 72-page document that was a combination will, POA, and trust. Then a couple of years later, she did a new will, and separate POA, so she threw away the 72-page document. But she did not realize that throwing it away did not invalidate the trust, because she actually had titled her house into the trust. I did not discover this until I was trying to help her with her property taxes, gathering house documents. I took mom out of the memory care residence for the afternoon, on a fun outing to a real estate attorney whom I had contacted to draw up documents to take the house out of the trust and back into her name alone. I was nervous because mom had not really been out in public since her devastating fall and sudden drop in cognition. I urged her to wear the new clothes I bought for the occasion. I made sure she had her hair washed and styled. I supplied her with her purse, wallet, and ID, so she would look like a competent adult. Mom did great! We had an unscripted moment of mother-daughter bickering, but that just made it more realistic. While mom admired the art on the walls of the office, I paid the real estate attorney in cash--cash because I did not want my mother signing checks, and I knew she wouldn't agree to pay hundreds of dollars for something she didn't understand. After we left the office, down in the lobby of the building, mom said, "Well, that was easy, and we didn't even have to pay!" You too will have many fun adventures like this. Arm yourself with info, then go for it.

Immediately start researching methods to place your mother into a suitable facility. If funds are a problem, Medicaid can step in. Contact your doctors and also the Office on Aging as a start to get answers. You are in financial conditions which mean you can't - and are not legally obligated to - pay for her. And if you are 37, you are young and have a life ahead of you. If she is getting dementia, you will be a slave and the rest of your life will end - not good. You MUST start looking into options now. You are educated, most likely working and paying for your upkeep - you cannot assume this burden. You will be destroyed. Do it now.

I'm sorry you're burdened with this at such a young age. My advice is to create a community of support for yourself. I would begin by asking her drs about in home certified nurse practitioner who will come to the house for check ups. They are able to do so much on behalf of the drs. Ours is invaluable to me for my mom. Speak with a couple of your mom's friends and see if they will come and sit with her s couple times a week so that you can get out and breath, exercise or just have quality time with yourself. Enjoy the good days and brace for the bad ones. Praying had helped me greatly. I've been caring for my Mom a long time but she is beginning to decline. Don't give up all your life and all your friends. I did, and now I have to learn how to have a life again. Just a few thoughts for now. You need breaks for sanity and rest. Check your community senior programs. Some offer respite care where you can take her for a few days and rest if need be and they may also offer other programs. Medicaid or Medicare may also offer daycare services however may not be a good idea right now. Find some joy with her and cherish memories. Put up pictures to remind her, ask her questions to keep her present, music therapy will calm her (what she likes)and be firm. My mom knows she's going to eat, drink and take her meds I don't play about those issues. I established that at the beginning and haven't had a problem. Don't forget to breathe. God bless..here for you.

Dementia usually gets worse over time and it can be like a regression to childhood and even baby-hood. There are some medications that are supposed to slow it. It is not clear how effective they are. Speak with her doctor. Someone with dementia can live for many years. She may get to the point where she needs 24/7 care, has to be fed, clothed, toileted, etc. Now is the time to put things in place to deal with this possibility. Get all of the paperwork in order: her will, her living will (medical instructions), power of attorney (POA), banks also may have their own POA. You may need an attorney to help with the will, depending on her assets. It's best to work with an attorney who understands elder issues if you do. Discuss this with your mother (and hopefully she's ok with it), but it's best for you to take over all of her financial matters. Change the addresses for her bills and financial statements to your address (you'll have to let them know that you have POA and may have to send a copy of the POA). I was able to change my mother's accounts to Joint Accounts (my mother was OK with this). You don't want to do this with her credit card, but you can be a second person and get a card on her account with your name. You don't say whether she is on social security and Medicare. This makes a difference with the financial aspects. Also speak with a social worker who specializes in elder issues or get connected with community organizations that can help you navigate the choices for elder care. With mild dementia she may be able to live independently. But as it worsens, she may have to live in an assisted living (memory care) facility. When this happened with my mother the red flags were: garbled check payments, getting lost when she went out, not taking her medications properly, poor hygiene, doing illogical things...If you can, and if she agrees, try to help simplify her life, not only by taking over her financial matters, but also check her home and "elder-proof" it the way you would child-proof a home. De-clutter, have clear open pathways for walking. Get rid of slippery rugs. When my mother moved into memory care there was no stove or microwave and they said to get rid of the scissors and knives (this depends on how severe her dementia is).