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

Hey there,
I'm in a situation somewhat like your own. I'm 36, only child (daughter), taking care of my mother who has dementia, and father is in skilled nursing. Everyone has been giving you really good advice in terms of what needs to be done. I just wanted to say you're not alone, and that there is support out there. It's a growth period that can seem never ending at times, but you'll get through it. People and services are out there to help. I recently discovered a book by Anne Basting called Creative Care - she also has a TED Talk. It might help you reframe some situations you find challenging. Sending you a huge hug!

Hi Sky,

I was 28 when my mom was officially diagnosed, but she had been off for at least 2-3 years before then, so it's hard to say how long she's been living with her disease. My mom was only 65.

I am also her only kin, single, and live across the country. I have been doing remote care taking and hiring on the ground help (4 caretakers total, rotating hours, 12-14 hours a day) and let me tell you -- it is EXHAUSTING. There are many things I wish I would've done differently upon her diagnosis but just remember to take it one day at a time and cherish the time spent with her now. Once she progresses, which she will, it will hurt and you will wish you were more patient, loving, and supportive throughout this difficult time for her. Get a POA as soon as possible, add yourself to her bank accounts, create a will (if assets exist), and find a local social worker (or office of aging) to help you with the social benefits & paperwork. Get her into social programs like adult day care or Senior Center classes if she's coherent enough. During COVID all of this is much more challenging but Senior Centers are starting to open back up for outdoor social distanced programs. Keep her mind active and do whatever you can to keep yourself sane and available for her. This will be a really challenging chapter in your life but please, take it day by day and do not be too hard on yourself. Lean heavily on your support network through this. <3

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.

Imho, you would do yourself a favor by reading the book, "The 36 Hour Day."

Sky, you have received really good advice. I just want to add a couple thoughts.

No matter what promises you may have made, please know that there will come a time that you cannot provide 24/7 care, work and live your life, and save for your future. The sooner you introduce the idea of helpers coming into the home, the more likely Mum will accept them.

You do not say they are there for Mum, but to free up time for you. Whether is a cleaning lady, gardener, online grocery shopping etc. Make these things the norm, while Mum has more cognitive ability.

If she is still able, get together with her and start collecting financial data. Where are bank accounts or safety deposit boxes? Are you on those accounts? Can you get into safety deposit box? What are her regular bills, set up autopayments if possible. If there are passwords for things get them written down now.

Get POA set up for Health and Financial. You may need a letter of competency from her doctor for some people to honor that, but wait to get that until the POAs are signed and notarized.

Check out Assisted Living facilities in your area, preferably with Memory Care also. My mom started out on Assisted Living but her dementia progressed faster than we thought it would due to a fall, and she has had to move to Memory Care. Covid has made things more complicated; I think it might have gone better if I could have been there helping her in person more. Even if you plan on her coming to live with you, plan ahead. I tried and couldn't do it. It was stress 24/7. It affected my health and stressed my family.
There arent as many opportunities for respite right now with virus restrictions. You have to be more isolated to protect her, and have to be very careful who comes in to help. Early in the process, I could go out to lunch with a friend or to a movie to shop alone for a break while my husband or others came over but not at this time. I know many people want to stay where they are, but try if you can to convince her to move close to you. Even if she is in care, you will get called regularly. If she is still independent for now, she will need help more and more. My mom had great friends and neighbors but it becomes more difficult to help her remotely.

If finances are an issue, check out aging resouces in your community. My mom was lucky enough to plan ahead with Long Term Care insurance/savings which pays for her care. It is about 6000/month.
Medicaid laws vary from state to state, so check that out if you think she may need it for care. You don't want to make fininacial decisions that will affect her eligibility negatively.

Find people who are walking the same path you are. Someone here mentioned a children-only support group that has shut down. I stumbled upon daughterhood.org, for daughters acting as caregivers, and finally found people dealing with the same challenges I was facing. They're doing zoom support meetings right now. Good luck! And take care of yourself. Find joy wherever you can and embrace it. Your happiness is just as important as your Mom's.

Join the Age center’s caregivers support group on Zum, the fourth Wed at noon. Read The36 hour Day. Also, if Age is open, they often have other literature available. They are on Center Street in Austin. If no one answers your call, leave your telephone. Consider consulting an attorney who specializes in Elder Care. At least complete a power of attorney for health care decisions and a durable power of attorney for other decisions, mainly financial, While she is still in the early stage.. The practicioner who made the diagnosis can also give you some references.
Put I’m Still Alice, the book, on your reading list.

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).

There is a lot good suggestions here. Please read them carefully and make a checklist of things to do. Each person is different so the progression of dementia can be slow or faster. It will be also complicated by other health issues that will arise. As an only child it will be much more difficult for you alone. You will sooner or later have to make difficult decisions. I wish you good luck and take of yourself because it will not be easy.

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.

BarbBrooklyn has hit some high points many with which I agree...but zoning in, if I understand this, mom is not in your state? Regardless, you do want to find a CERTIFIED elder law attorney, and there is an organization they can belong to, google that...from those in your or mom's area, call around and try to find one that works on a flat fee for task. That is way better than hourly and more compassionate on their part.
Check out your local Alzheimer's Assn...in our area we have/had a support group for adult children only. It was great even if you go for a few times, you will meet people in the same situation (or via phone/on line at this point). I had a wonderful group but the facilitator was part of that and she departed due to internal operations of the organization diminishing the value. Slowly people departed, never to return. That was sad. But they can still be a resource.
I have to say...I would NOT immerse yourself in everything written about it or you will drive yourself insane. There are similarities for everyone...but often what could happen never does. Take it a day at a time, be grateful for the stability. Practically, you'll want to do the legal stuff and maybe have her bills sent to you. Sometimes you can do that on line. I started by paying by mail and checking the new address box with their name and c/o with my address.
And remember...you are so not alone. And sometimes a friend is right around the corner...you wouldn't believe how many people are impacted by this. I was chatting with a couple people about bread on facebook or nextdoor, and it turned out this person lives blocks away and is caregiving for her father...
As trite as it sounds, take good care of yourself...
OH, and wherever your mom is, you'll want to connect with the local area agency on aging...they may even have a big book that is free that will tell you about local resources...

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.

Yes, you certainly have your hands full at the moment. An only child without relatives is also not the ideal situation but it is your situation, unfortunately. I’ve been in your shoes about 20 years ago and this is how I handled the unfortunate situation. I had to prioritize things: Make an actual list of all of the things that see overwhelming..#1 - #10. List them in order of how important each one is to you and mark each one with either “I have control over this” or “I do not have control over that”, etc. At the top of your list might be your student loan concerns...such as how do I make the monthly payment if I’m having to spend extra time with my Mother -getting her settled, etc.? As much as possible keep going to work....you are paying back college loans that you incurred but hopefully you have a career that you enjoy and that is sufficient to make your student loan payments. Work is your salvation...or at least it should be and I truly hope that it is. In the middle of all that is going on in your Mom’s life, you have to remember that you are only 37 and you, too, have a life that needs to be lived....in order words make time for new colleagues and friends. At least for me, my female friends were invaluable in helping me face a new day with new challenges. Hold on to those friendships no matter what....they are YOUR support system. Try to see your Mom on a regular basis...not every day but several times a week. This is something that you’ll have to make room for in your busy schedule. After time has passed you’ll find that things will begin to settle down regarding your Mom’s diagnosis and needs, your career and paying on your student loan. Be patient with yourself and please be your own best friend. There is really only one person that you can count on 100% of the time and that is yourself.

At the moment things see overwhelming and somewhat hopeless. You are wondering: How am I possibly get everything done..there is no one to help me, right? Wrong, now is the time to get ahold of your friends and let them know that you’ll need their emotional support in the upcoming months. If you have good friends they will reassure you that they can be counted on if you need anything....that is what friends do for one another. If you don’t have any friends and you don’t have a good support system then I’d be having another type of conversation with you. Just let me know...Corvette2006. Call on me anytime and I’m more than willing to help if I can be of assistance. Best of luck. You are young and you have a long life ahead of you, God willing, but you need to know how to manage now, right? Drop me a line if I can help in anyway.

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.

Others have given great advice about legal and financials. I suggest you also educate yourself about the disease process. Try to find out which type of dementia your mom has - vascular (caused by strokes), Lewy Body (part of Parkinson's Disease), or Alzheimer's disease (most common). Once you know the type, read up about the stages of dementia and the usual disease course. Then, you can start to plan for her care with her primary care physician as your ally.

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.

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.

My father has been forgetful several years now but was officially diagnosed last year when I could get him to see a Doctor. It hasn’t been easy at all. Last year he took a step down and started having moments of confusion. I’ve been trying to read up on dementia as much as I can to know what I can expect. We had him move into our guest home so I can check on him daily. But when things get worse I know I won’t be able to keep him safe In our guest home (Plus I have my own health problems) so I will have to find a memory care place for him. I really didn’t think it would be this difficult. It’s definitely caused a lot of stress on me. Of course he’s always been stubborn and doesn’t like To be helped, so I guess I should have realized it wouldn’t be easy having him live here. Hope things go better for you. It’s always nice to have a diagnosis so we can prepare for what’s coming

You didn't say whether you were living with her at this time. You may consider cameras in her home connected to your smartphone to keep a watchful eye in case of fire or deciding if she is at risk for any of the following situations. Things to consider now or in the future are safety in shower, cooking on the stove, opening door to strangers, giving personal info to someone on phone or at the door, forgetting to lock the door, leaving stove on, falls, agitation, accusing you of stealing from her, paranoia, driving (getting lost, etc.). Notify your local precinct of mom's situation in case of 911 call. Caregivers, live-in help if you have your own home, AL or Memory Care for considerations for the future. Join a local Alzheimer's Caregiver Support Group where others can give advice to you. Certain areas may also have a support group for your mom. The organization can also assist you in many ways & help with respite care if needed in the future. At this early stage suggest to your mom ways to try & keep active with her mind (puzzles, word search, games,etc.) & body. You also need people to support you both, friends, a church family, & neighbors. When permitted attend socials, concerts, plays, zoos, anything where she interacts. Use this forum as a resource & for issues that come up. Get her POA, MPOA, Advance Directives & Will completed if not done yet as soon as possible. Talk with your mom about issues that concern her. If she has photos, etc. that need names or dates put on them do so soon while she can still tell you. Dementia courses are all different so try to handle what you can while she can help you. Good luck & don't forget to make time for yourself along the way. Have her pay you for your assistance especially if it takes up a lot of your time. Make a list of things to do and check them off when you complete them as there are many things that she'll need help with. Keep her involved as much as possible.

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.

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!