My mother was diagnosed with early stage Alzheimer's about 5 years ago. She also has many physical issues- back problems, haital hernia, neuropothy and others. She is on a lot of different medications which include adderol, gabapentin , clonazepam, atorvastatin, donepezil, escitalopram, Xarelto, and insists on 2 tylenol PM at night to get to sleep. Tylenol PM has Benadryl in it. She also occasionally takes Tylenol 3 when she is in pain. She had a minor stroke 2 years ago as well. We got her a driving assessment a few months before her stroke and her assessor advised that she relinquish her license and never drive again. She has some days where she is as lucid as someone without dementia, and other days where her memory is not great.
My problem is that she has always been manipulative and angry and blames others for her problems. She insists that my husband and I are conspiring against her to make her life miserable. She claims that we went behind her back and had her driver's license taken from her and she insists that she will do whatever it takes to get it back. Before she lost her driver's license she was getting lost frequently and losing her car in parking lots etc.
Medically, I make sure she has excellent medical care with everything from a general practitioner to a host of different specialists. She sees all of them regularly. She does have the power to, and frequently does, refuse to go to various doctors especially a psychiatrist who specializes in elder care, Alzheimer's and dementia and her hematologist. She tells me things regarding her memory and health which I pass on to her doctors and then she lies to her doctors and either denies saying anything to me or claims that I am mistaken. Her general practitioner is a "concierge " doctor and does consult with her specialists, so everyone knows what her prescriptions are and how and when she takes them.
She has destroyed her bedroom (I'm going to have to replace the carpet, maybe sub floor and some of the dry wall where she has put holes ostensibly to hang pictures and shelves). She is hoarding and spending money she doesn't have.
The interesting part is..... she has actually always been this way as long as I can remember. She is the same only a lot more . I'm not even sure if she has Alzheimer's or if it is just her medication and/or regular aging. All if her doctors and physical therapists seem to think that she has been properly diagnosed. I'm just not sure what to do next. At the moment, (today) she is fine, but what do I do when she starts having fits and getting angry then acts like she is a victim and that we are responsible for everything bad that has ever happened to her.

We have her POA, both medical and durable. She has lived with us for 10 years (this time) , and frankly, I'm tired. My husband and I are tapped out as far as spending any more money on her. We have bailed her our financially more than once and her entire SS check goes to pay for her Gap insurance , some of her medical costs ,and her storage, and her credit card bills. I'm grateful that she is with us and not in a nursing home or some place awful. She is just challenging to have around and has put a huge strain on our relationship with our children and our marriage.

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I agree with the previous posts. Having been diagnosed with AD 5 yrs ago, your mom more than likely is progressing into another stage of the disease. Certainly getting lost while driving is a symptom along with the hoarding. Sometimes AD is misdiagnosed but I don't think so in your mom's case. If your interested in seeing how the dementia symptoms advance Google "Functional Assessment Scale". I'm sure the doctor's discount her "lies" as a typical AD behavior so I wouldn't worry about that.

However, mom has another issue with the Tylenol PM. As you said, it contains Benadryl. It really doesn't contain Benadryl, it contains diphenhydramine which is the main anti histamine in Benadryl. I'm surprised her dr. has recommended that for her. Without getting into specifics, long term use of diphenhydramine can raise the risk of dementia. Many sleep aides and anti histamines contain the drug. For those already diagnosed with AD, the drug can cause significant additional confusion. Any OTC meds with PM will typically have the drug in them. I would check with her dr. to see if he can substitute an alternative for diphenhydramine. While with her dr., I would ask if all those meds are necessary and are doing any good.
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Reply to sjplegacy
joymartin62 Oct 6, 2020
I googled the "Assessment scale, and it looks like she would fall under the "moderate dementia" category. Shortly after she moved in with us, I got her weaned off of Ambien. She was sleep walking and attempting to cook in the middle of the night. If she doesn't have something to help her sleep, she will be awake for 24 to 48 hours at a time. I have gone over her meds with her doctors and pharmacist. We have weaned her off of a few of them at times, but her symptoms always return and we end up putting her back on them.
I made contact with the agency that we have been using for her physical therapy and am expecting a call from a medical social worker in the next day or two. They tell me that the social worker will give both of us tips and information and let me know what options there are available to us. It seems as if Medicaid is really going to be our answer. It is wonderful to have this forum to get ideas and to get other people's opinion and advice.
Thank you for your help .
Any medication that has Benadryl in it has been linked to causing dementia in people over 60 years old, so I would start with removing the Tylenol PM from her list of medications, and see if that helps or not.

Whether or not she actually has Alzheimer's, I guess only her Drs know for sure, but it definitely sounds like she has some mental decline, which as you said can be normal as people age, or with any of the dementias. I'm guessing she must have had the appropriate testing done along with an MRI or CAT scan of her brain for her Drs to make her diagnosis?? If not, what are they basing their diagnosis on?

Now last but not least, in the very last paragraph you wrote, "I'm tired, she is just challenging to have around and has put a huge strain on our relationship with our children and our marriage", but then you say "I'm grateful that she is with us". Really??? How grateful can you really be when you have someone living with you that is putting a "huge" strain on you and your family? I think it's time you do what's best for you and your family first, and then what's best for your mom. And that might very well be, finding the nicest facility that she can afford, so she can get the help she needs, and you can get the break that you deserve as well. Best wishes.
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Reply to funkygrandma59
joymartin62 Oct 6, 2020
You are right. Grateful is probably not exactly the right word. I would just hate to have her in a facility that wasn't safe and clean and COVID free.
We did have a CAT scan of her brain 5 years ago and the neurologist said that her brain definitely showed signs consistent with dementia. It looks like Medicaid is going to be the path we are going to need to follow.
I've removed the PM from her meds and she doesn't sleep for 24 to 48 hours. I got her off of Ambien a few years ago . That drug led to sleepwalking and her attempting to cook in the middle of the night. I am going to check with the doctor again to see if we can come up with something else. Thank you for your input. It is nice to have other people around who understand the struggle,
Thank you.
I was kind of waiting for the "interestingly, she has always been this way".
That kind of says it all. She may, of course, now have a combination dementia and mental challenges. But it seems she is seeing a whole battery of doctors, so there you are.
I am glad you are happy to have her with you. But.....
How is it working out for your children and your marriage? Because of course that is your obligation in life. And if you are neglecting them to give care to someone who sounds like she would be a bit of a challenge for several 24/7 caregivers, that would not be right at all.
I can't know about your finances, but unless you are multimillionaires, the spending of your finances on your mother, rather than saving for children education and your own old age, is another questionable decision.
It seems you know all the choices and have enumerated them clearly. Good luck with your life decisions ongoing.
Good luck.
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Reply to AlvaDeer

I have no idea, based on your mother's behaviors, why you'd be questioning her Alz. diagnosis!! When a brain disorder affects a person, the behaviors they've always had MAGNIFY and become a lot worse. They also develop new and frustrating behaviors in addition which create an unmanageable situation for you to deal with at home, as you are now discovering. You're saying she's a challenge, she's destroyed her room, spends money she doesn't have, and that you and your DH are tapped out and tired.

That said, it's time to look into placement for your mother in a Memory Care ALF or a Skilled Nursing Facility if she needs to get Medicaid to finance it. Trust me when I tell you, they're not all 'awful', my mother's MC ALF is terrific and when she runs out of $$$ in 2021 and I apply for Medicaid, she'll go into a Skilled Nursing Facility in the area that's very nice and who I've had good experiences with.

Your mother is very, very fortunate to have lived with you for 10 years (this time), and a total of God-knows-how many years. It's time for you and your husband to reclaim YOUR lives now and YOUR retirement years. Your mother will be able to schmooze with lots of other elders who are in the same boat as she is, and that's a GOOD thing for her!

Best of luck!
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Reply to lealonnie1

Thanks for your support. It gets lonely out here. We do have her medical POA, but her doctors say that even with that, we cannot make an appointment without her present.
We have and are considering medicaid as an option
Helpful Answer (1)
Reply to joymartin62
NeedHelpWithMom Oct 6, 2020
That’s interesting. My mom’s doctors spoke to me at length without her being present.
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If shes negatively effecting your relationship with your spouse or children she needs to be in a facility. This will not get better.
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Reply to ZippyZee

Sounds like you have been through the mill. I’m sorry that you are struggling with this.

You say that you have POA. Do you also have Medical POA? Do you have permission to speak to her doctor? If so, either make an appointment to discuss it or write a letter addressing your concerns.

If she isn’t on Medicaid I would consider having it for possible future care in a facility. You may not be able to keep her home forever. At least be prepared.

Of course you are tired. I completely understand. I had my mom for 15 years in my home. It’s emotionally and physically exhausting.
Helpful Answer (1)
Reply to NeedHelpWithMom

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