Newly diagnosed and need help

LODaughter

My mom was diagnosed with early stage this winter, but to us she has progressed very quickly.  2 questions:

1)  She often confuses direct family members (thinks her husband is her mother, says her sister is someone else, etc.) and often doesn't believe she is in her own home.  This seems to be odd for what the doctor classifies as mild/moderate.  She does her own personal care, but it's almost like she's seeing things.  Any thoughts?

2)  We took her for a recheck and she is flaming angry at us.  She constantly says that she is just like other people her age and that she doesn't agree that this doctor knows anything and doesn't want to do anything he suggests (meds, treatment plan, etc.).  Says that she never agreed to meet with him anyway.   We are barely starting this process but I already don't know how to guide my dad and our family on this.  Do we ignore it and make her go and make her take her meds?  Do we try to reason with her and explain it?  Do we let her do what she wants and stop taking the meds and stop the appointments?  She's flaming mad right now. 

Cynbar

Sorry you have to be here but welcome to the forum. You'll find a ton of information, support and advice here. Amongst all of us, we've seen about everything.

1) It sounds like you mom is further along than an early stage, but saying that, it's about reacting to the symptoms more than focusing on stages. All of this sounds very common. Many dementia patients don't recognize their homes, ask often to go home, confuse people they have known for many years. The usual approach is to go along with it and redirect as much as you can. Don't try to reason with her, it's not going to happen and will make you all frustrated and angry. Her brain isn't working right, the old rules have changed.

2) It is VERY common for people with dementia to think they are fine. There is a condition for this called anosognosia---- google it, that will explain at lot for you. Once again, don't try to convince her. Most people don't discuss the dementia diagnosis, find workarounds to get them to the doctor (insurance requires an appointment or coverage will stop is a common subterfuge.) You'll get more specific advice on that here, I am sure. It's important she take her meds, one idea is to tell her they're vitamins or hide it in food or drink. She can't make reasonable decisions any more, her family needs to decide what needs to be done and find ways to accomplish that. It's a whole new way of thinking but you'll get used to it. We call them "fiblets", stories we make up to convince a LO to do something necessary without upsetting them. Read through other threads here and you'll see many similar themes. Good luck, this is a tough road but here we're all in it together. 

rzrbaxfan

I agree with the previous post in that it sounds like she might be further along than the doctor thinks.

I was in this exact situation a year or so ago. When things calmed down, I explained to her that she has two options...live with us or go to a facility.  She HATES the idea of going to a facility.  I don't like using that threat as leverage, but I had to do something.  It took some time, but she came around because she loves living here.  Now she goes to the Dr and takes whatever pills I put in front of her.  Not sure if that is because she really understands her options, or if compliance and cooperation is a "symptom" of progression, or if it's a little of both.

I look at it like I do parenting...do whatever works to take care of your loved ones...even if you have to think outside of the box.

towhee

The doctor only knows what he can see a short office visit and what you tell him. It is not unusual for a person with dementia to "pull it together" for a short office visit, thus not allowing the doctor to see their true state.

Seeing things-- PWD in the moderate stages can sometimes have delusions, hallucinations and visual problems. Some medications can affect vision. If she is not recognizing her sister, she might not be recognizing herself in the mirror.  In her mind, she might be 20 years old.

How to work with her? You have to learn different approaches. One major one right now would be the fiblet. You will encounter different problems during the course of this disease that require different solutions.  Learning more about the disease now will help you later. Reading a short article available for free online called Understanding the Dementia Experience is a good start. Also a book called the 36 Hour Day, youtube videos by Teepa Snow called Making Visits Valuable, and youtube videos by Dementia Careblazers.

Hatedementia

I also agree that she sounds further along than the doctor realizes.   They have an uncanny way of managing and not always showing how bad their memory is tho ...  truly ingenious.   We experienced many of the same things you are describing.   Some dementia patients get very angry and frustrated and others very cooperative.   When they are angry ...  you really have to learn the fiblets approach and redirect.   There is NO point in trying to reason... they are incapable and it only angers them more.  Also, go to alz.org and get in the chatrooms, or call the help line ... they sure helped me on more than a few occasions.   Sometimes had to take ME down or give me advice on how to proceed, and how to survive proceeding.  

I would probably try to approach of the doctor insists on her coming in or the insurance needs a physical ...  you can use many excuses over and over as they don't remember...    it is one of the hardest things to manage sometimes but with practice and reading everything you can get your hands on, attend seminars or classes and support groups you will learn you are not alone, and the others can give you ideas.    She does need to take the meds so say they are vitamins if that will work.  

Our loved one got very angry and combative at times.   When the combativeness became a danger to her and others safety we had to add some meds to calm down ...  it is very hard to stage them appropriately as it is an ever-changing disease....  our LO had different parts of different stages at any given time and it kept us guessing to the very end.   Dementia is a very difficult disease.       Having said that, take care of yourselves as caregivers because it's a very tough and hard job ....  play music and encourage the things that they enjoyed...  bask in the moments when they are truly "with" you ...  and go one minute at a time.         

M1

The atypical antipsychotics like Seroquel and Zyprexa can be very helpful in managing delusions and anger/aggression. I would ask the doc about this with a phone call, they may be willing to prescriibe  over the phone. Good luck-

harshedbuzz

LODaughter wrote:

My mom was diagnosed with early stage this winter, but to us she has progressed very quickly.  2 questions:

1)  She often confuses direct family members (thinks her husband is her mother, says her sister is someone else, etc.) and often doesn't believe she is in her own home.  This seems to be odd for what the doctor classifies as mild/moderate.  She does her own personal care, but it's almost like she's seeing things.  Any thoughts?

The people caring for and living with your mom will have a better sense of where your mom is in the disease progression because they know her previous baseline best and she present behaviors across the day. This is especially true if the PWD engages in "showtiming" behavior where they pull it together for a relatively brief appointment with the doctor. 

My dad was like this with his second neurologist and geripsych; for the latter I emailed short videos of dad's at-home aggression and confusion to give him a sense of what we were living with since the guy in his office was playing some other role entirely. 

Until neurology makes house calls during sundowning, this will likely remain the case.

2)  We took her for a recheck and she is flaming angry at us.  She constantly says that she is just like other people her age and that she doesn't agree that this doctor knows anything and doesn't want to do anything he suggests (meds, treatment plan, etc.).  Says that she never agreed to meet with him anyway.   We are barely starting this process but I already don't know how to guide my dad and our family on this.  Do we ignore it and make her go and make her take her meds?  Do we try to reason with her and explain it?  Do we let her do what she wants and stop taking the meds and stop the appointments?  She's flaming mad right now. 

My advice. Stop talking about it. she likely has some degree of anosognosia and isn't able to appreciate that she's changed in any way. Accusing her of memory issues, confusion, memory loss will feel like gaslighting to her and trigger a fight or flight mode that will only make your jobs all that much harder. 

Go out for lunch and the say you need to stop by the doctor for a prescription refill or Medicare-required check up to get her back to the specialist. I personally wouldn't fight over any of the "ALZ" meds; they're only effective for a small population in terms of making symptoms better for a time. None actually slow the progression of the disease running in the background. 

It's possible she's having hallucination and delusions. Dad had these in the middle stages of the disease. Medication- one of the atypical antipsychotics- can be useful for managing these. I would do whatever to get these into her system including hiding it in pudding or telling her some fiblet. Often referring to another condition can help get pills accepted if you say "Dr. PCP wants to add this new medication to your other BP or diabetes meds to help get better control". 

In addition to the issue with mirrors towhee mentions, some PWD "see" people in reflections off windows and glass framed art. Dad struggled with these two fairly early on; curtains needed to be drawn before lamps came on and the art came down. After a time, any portraits- even oils- were a problem and came down. 

HB