Difficulties navigating a parent whose MILD COGNITIVE DISORDER has grown into DEMENTIA

Aleksandra

Hello everyone, I am new. Last year, my mother was diagnosed with early Alzheimer's dementia; then a PET scan was clear, and they said it was a mild cognitive disorder with a tendency to grow into dementia. A year later, the situation is worse, and it is clear that this is dementia. But my mother refuses to go to the doctor to get the diagnosis right. She insists she doesn't have it, and she can do it all on her own. But she can't; she sometimes makes a mess with the medicine and with the money, even though she is still very functional on her own. She takes some care of the house, goes to buy groceries alone, and can have somewhat smart conversations. On some points, she even seems as if she is her old self when a problem occurs. The problem is I don't live there. I go there once a month for a week with my four-year-old son, and I take care of everything (home, bills, cooking, laundry), and she seems fine those days. My older sister, who lives nearby, often argues with her, trying to convince her that she isn't well and can't get her to do anything. Mom refuses her help for some reason and only agrees that I can take care of those things. My father, who lives with her, can't take care of her because she doesn't want him to be involved in her finances or medicine, and he doesn't want to force her. My hands are tied here. Depending on my work, I can go there once a month and then work at night (I work remotely), but it is exhausting. When I mention getting someone to help her around the house or with medicine or bills, she starts screaming that she is well. In consultation with her psychiatrist, we went last year; she is now on donepezil and memantine, and we hope it will make her somehow easier to convince to go for a full check-up. It has been a year since we last went to doctors. She has been like this her entire life, never wanting to go for a checkup since she is a nurse. Now she believes ibuprofen is antibiotics and can't be convinced otherwise. I am desperate and tired of this remote care, but there's nothing I can do right now.

Victoriaredux

Hello—I'm glad you found this Forum, but sad you had to.

Sounds like your Mother has Anosognosia

https://www.agingcare.com/topics/295/anosognosia

It is very common and useless to try to fight it .

On donepezil and memantine, they don't cure - just if the side effects aren't an issue (my LO didn't have any)- can help the PWD tread water at a certain level for longer . But the disease progresses.

On functionality - your Mother seems to be in the challenge part - the patient sounds ok , most of the time, can handle things ,most of the time BUT this is also a very dangerous time- they can get scammed . Cause a car accident and be useless in explaining what happened afterward . Pay bills twice. Forget bills or meds and get upset and deny the whole thing.

Do your parents have up to date DPOA, healthcare proxies, wills /trust? If not a visit to an elder law attorney would be a good idea.

Sounds like someone is going to have to step in and remove her access to their funds soon or she could ruin them financially. Your Mom blaming your sister is very common too- PWD tend to blame their closest relative because they sense they are being judged and their liberties can be at stake. But leaving a PWD with access to car or funds is not honoring their independence but risking their future.

I'm sure other members will leave their thoughts and suggestions . And feel free to read older posts , we tend to cover just about everything from early to late stages .

caregiving daughter

I think most folks with dementia do not realize they have it. Early onset could be an exception.

Bottom line, your mom is refusing to go to the doctor because she doesn't think anything is wrong. At the same time, she is having increasing difficulty understanding the world she is living in, leaving her frustrated and scared.

Get the dangers under control including no more driving. Medication should be supervised.

Does your mom see an internist for anything else? Assuming she has an appointment, send a private note to the doctor a couple days before. Ask them not to disclose the note to your mom. They have certainly seen this type of situation before and likely have ways to ask clinical questions of your mom in a subtle way. You want to get some kind of cognitive ability assessment as perhaps they can prescribe dementia medication. They may be unwilling to do so without a formal diagnosis. Formal is done by a neuro psychologist and it is a couple hour appointment.

If you live in a large metro area, try to find a memory clinic. The practice would be housed in a teaching hospital and staffed with not only doctors but also social workers. In addition, read books/this board and try to find live caregiver training for the family of pwd. I had to learn an entirely new skillset of listening and learning not to disagree with my mom.

Thinking of you

H1235

Welcome. You have been given great advice above. Anosognosia is awful! It also means she may not be able to understand her own limitations. My mom thought she could paint her 2 story garage, but could still carry on a fairly normal conversation, fix her meals and take care of her personal needs. I think there is so many little things they might struggle with that easily just slip under thee radar. At one point I discovered mom hadn’t replaced her toothbrush in maybe a couple of years. I was shocked and felt like I should have beefed more aware. The person with dementia is not able to make sound logical decisions and allowing them too much independence is dangerous (physically and financially). No one wants to force our loved ones to give up their independence, but it has to be done. There will probably never come a time when she is able to realize she needs more help and waiting for that to happen is only going to cause problems. I eventually just did what needed to be done and braced myself for her anger (it was hard!). People with dementia also sometimes lack sympathy and a clear understanding of time. This might explain how she can ask so much of you without really understanding the extent of her ask. I would strongly recommend you talk with her doctor about medication. Its made a big difference for my mom and it did not turn her into a zombie.

Aleksandra

Thank you so much for your answers; it helps me mentally to find the strength to do (as someone said in the comments) "what needs to be done". She isn't a driver; she lives in a small place where it only takes her a couple of minutes to get to the grocery store, and she always takes the same route, so that part concerns me less than the part with the finances and medications. My dad is trying to control whether she takes medicine correctly by removing the one in the morning (she takes it only at night), so she doesn't have access to it and brings it back in the evening in time for her medicine. They also try to keep track by counting pills. When I am there, it is easier; I observe her and just slightly remind her. She doesn't want to use a pill doser (we tried several dosers), and I wrote her medicine on a large piece of paper so she can easily follow. Some days she does it perfectly when I am there to watch, but others she mixes the evening and morning dose. Luckily, these mistakes are not fatal, as she can mix the vitamins with her medicine for stomach reflux or take take melatonin in the morning instead of evening, the rest seems fine but we are worried that she will mix antidepresant and new medicine.
I am starting to think about getting a legal guardian to prevent financial problems, but at the same time I think she won't agree, as she values her financial freedom so much. She has her pension, and she goes to the bank to take everything, give it to the grandchildren, pay the bills, and pay for daily groceries. That is how she has lived in the past years, and I am so afraid that she won't take it well if we cut her off from her pension. I am even considering somewho giving her some type of allowance to make her somehow at peace with everything. Once again, thank you so much for your comments; it means the world knowing that someone understands what we are going through as a family, because I am desperate and torn between my son who needs me all the time and my obligation to step in and help my mom since she refuses help from others.

Victoriaredux

Glad she's not driving.

A few thoughts - her RX and meds - vision and memory can mess up safe dosing. See if the PillPack system will work for this - some pharmacies will prepack into morning , noon doses etc or you can buy the little bags & can set up yourself. But she'll still need watching she doesn't squirrel the set away or just take some .

Having her go on foot to get her pension in cash and then /spend give it away is so risky . Physically she's at a risk of being mugged- for the cash . If she will ever need Medicaid there is a 5 year look back in most states —gifts will delay coverage. What will your family do if she is scammed and then there is a multi-year wait because of the gifting before you can get any assistance with her care bills?

Not getting the right legal papers now when she may still be found able to sign them will mean having to go to court to have her declared in need of oversight. That can take longer, require on going court reporting etc.

She may never say " I'm yielding my financial oversight " -that will probably require some finesse to get her to agree that ' Hey Mom and Dad getting these papers done now will save you money .'

You've been given warning signs she really shouldn't be handling money anymore - please discuss with an elder law attorney the best way to effect this change. Having the first meeting with you , your Dad and maybe your sister but not your Mom may be best so that the whole scope of how to manage the future can be covered .

It's very human to say after a dementia moment in the middle stages - oh it isn't that bad, they sound the same etc etc. But at some point it can be "that bad" and financial recoup/recover may not be possible.

Safety not her happiness is the goal.

sandwichone123

Everyone's lives will be better if everyone agrees to stop telling her that she's got a problem. Her brain is not wired to understand that, but when people say it, the result is that she feels like they're not on her side and she has trouble trusting them about other things.

If you don't already have legal work in order, she and your dad should both get it done. Durable Power of Attorney, POA for healthcare, wills, etc. This should not be because she needs help. They should both get it done "because we're getting older and needs to get our affairs in order."

Diagnosis doesn't really matter (although opinions vary) but at some point she'll need a provider that can prescribe medications to help with symptoms. I wouldn't consider that a top priority right now, though. Top priorities are to support the caregivers that are local to her, and build trust by saying yes as often as possible.

caregiving daughter

There's some great posts here

Can I just extend a virtual hug to all here. We've all been through this. Hug to the op and to all those that replied.