We are waiting for my 54-year-old mother to be diagnosed but in the meantime I’m the only one who is caring for her. I also care for her 15-year-old son as well. She had to stop working and I have money saved to pay her bills and I’m trying to get an at home job to better care for her. Her 15-year-old son didn’t get off the school bus the other day and she went into panic mode basically thinking something had happened to him, but he always come home with his friend’s mother. I told her to calm down and sit down and let me figure out where he is I had to tell her this 5 times with no luck she then got her keys and said she about to go get him and I said no you’re not driving. I know they said to be calm and deal with a person in a nice way but sometimes I get frustrated and don’t talk in a calm tone of voice. My older brother jumped down my throat about my tone of voice. He is basically criticizing me when I’m the one doing all the work and it is not easy for me because I’m still new to this and don’t understand fully at what is going on. Caring for her has its ok moments and bad moments but in certain situations I am not always as calm as I should be but I’m trying. He is not her every day and don’t know what I go through Monday-Sunday. People are telling me how I should be and how I should deal with her but how can they tell me what I should do when they are on the outside looking in and not dealing with what I’m dealing with? What do I do?
- an accurate diagnosis is the most important step. Have her primary doc test for everything that can cause cognitive symptoms but is treatable (UTI, dehydration, vitamin deficiency, over- or under-medication of any meds she takes, even OTC), high blood pressure, etc. Then take her to a neurologist for imaging and exams. Dementia diagnosis is not a single simple test, plus she's so young. My good friend's very active and healthy Mom got ALZ in her early 50's. She lived about 15 more years. Meds for depression and anxiety may help her now so have this discussion with the docs.
- Igloo572 gave critical advice about the money part. Work on this asap. Do not pay for her care out of your funds - this is unsustainable and will be a big problem for you when you need to retire. It will burden your own family. At tax time you can talk to an accountant about whether you can claim her and her son as dependents in 2023.
- get her legal ducks in a row. someone willing & able needs to become her PoA or legal guardian. Try to get her to assign a PoA before she loses capacity (which is judged by an attorney, not a doctor, and not your opinion). Or, do it through online method at Legalzoom.com or Rocketlawyer.com. It will be cheaper and easier and wor just the same, but you will benefit from talking to an elder law attorney about future issues she may have (even tho she's not yet a senior).
- keep coming back here for moral support and guidance. Look through the Care Topics in the main navigation menu. All sorts of good articles and advice.
I wish you success and peace in your heart on this journey.
OP, what the situation with the 15 yr old bio dad? If it’s that it’s best he isn’t involved, then your Mom needs to legally appoint another adult to be his guardian should she be incapacitated.
and please pls do get on doing a SSA SSDI filing. It will take time. But they will do back payments from time of filing. Often folks have to do the 1st filing and get rejected then do a second filing. And remember the 15 yr old, he has to has to be clearly stated as her full on dependent.
I really cannot stress how important it can be for him and the household financially as what usually happens is he gets 50% of her SSDI as SSDI payout is based on her earnings. Even if it’s a low amount, it is still $ that is used by whomever designated to be his representative payee (it does not have to be his mom, could be whomever would be his guardian if need be) to pay for things he needs to can be of use to him. So it’s $ for clothing, for tutoring, for counseling if he needs to see someone to deal with his moms “dementia ”, for college applications, field trips to look at colleges, for costs for him to participate in a sport, a car, any health care that his health insurance won’t cover, like dental work. His school will have to fill out a form and believe me they are familiar with doing these. As long as he’s in high school till he graduates or turns 18, he gets the SSA dependency benefit. The only thing is that according to SSA the $ is to be fully spent, so no saving of it (like $ put into a college fund). Really, If $ is tight - and for the situation you have, it will be - having the extra funds to support a teenager will be beyond important.
The same benefit is also done for anyone retiring at FRA full retirement age filing for SSA retirement income, who has dependents under age 18 or still in high school. It happens often for May - December type of marriage where the dad is older and retires but has kids still in elementary or high school from his current marriage.
BUT ALSO if she’s SSDI and has dependents under 19 and still in high school, they will also get their own SSA $. which will more than likely make a huge difference for your families future.
Shes rather younger to have Alzheimer’s or Lewy body dementia, it might be good for her to get a full on neurological work up. If she actually has something else, like Aphasia, it can have similarities but is very much a different disease and different approach to care.
Depression? Diabetes? Drink/drugs? Anything else going on?
Also, make sure your Mom isn't dehydrated, as that can also cause confusion. Have her drink at least 16 oz of water during the morning and another 16 oz in the afternoon to start.
A Mother worried about her teen missing the bus home is not dementia. Obviously there must be more to it to even suggest dementia?
An accurate diagnosis to whatever has made your Mother unable to work at only 54 is needed.
You shouldn't spend your hard-earned money to take care of your mom. You may need it for yourself someday. An initial meeting with an eldercare attorney may be a free consultation, and the lawyer can tell you what options you and mom have. You should get social services involved ASAP because they may provide help for you, mom and her son.
Not everyone is cut out to be a caregiver, and you may be one of those. That's okay. Your long game can include building an exit strategy and overseeing mom's care from afar. It doesn't mean you don't love her if you're not there 24/7. It means you have a life of your own that matters.
Hide the car keys if it’s unsafe for mom to drive. Don’t argue with her about anything, those with dementia have lost the ability to make rational decisions and arguing won’t help either of you. Make her home as calm and safe as possible. Don’t allow yourself to get into looping conversations that lead nowhere and only frustrate you both.
Most importantly, guard your own health and future. These are your prime earning years, and if you lose your health it’ll make you no good to mom. No one person can, or should, do it all. Ask for help, expect help. Tell others in mom’s life that you will not do this alone. I wish you well in figuring this out
Something is going to have to be set up to take into consideration any minor children. (Who will be the Guardian when mom can no longer make decisions? And it sounds like that time is coming soon)
What assets does mom have that will help with her care and any assets that may be needed for the minor child (children).
And what does mom want as far as her End of Life decisions?
Has mom applied for Disability? (may have to wait until after the official diagnosis) I would do that ASAP.
Will mom have to apply for Medicaid? (maybe have this discussion with the Attorney. )
It may come that you have to place mom in Memory Care. This decision will be difficult but caring for a younger sibling and your mom and if you have family of your own this is going to be a LOT to manage. Sometimes caring for someone means making a difficult decision. It does not mean a failure on your part it just means that her care is more than you can safely manage at home.
You can watch videos on how to deal with dementia. Teepa Snow has very good videos.
Unfortunately a lot of the learning how to deal with dementia is "on the job training"
A few things to try.
Keep your voice as calm as you can.
Keep the tone of your voice lower, don't yell.
If you get real frustrated walk out of the room. (as long as it is safe to do so..for you and for mom)
Look for an Adult Day Program. It will keep mom engaged and it will give you a break from her and her from you.
I would have her checked for a UTI, as that can often mimic dementia behaviors along with having some blood work done, as different vitamin deficiencies can also mimic dementia.
Lyme disease can also cause memory loss, so I would make sure that her doctors are ruling out everything else before they label her with having dementia.
And if and when she is diagnosed with whatever, it's best that you and all family members educate yourselves about whatever the diagnosis is, so you'll be better prepared for what is yet to come.
Here's to hoping that your mother doesn't have any dementia, and that her doctors will get to the bottom of whatever is going on.