MCI to early stage dementia - a cell phone caretaker's experience

Wiedeman

My 82 year old relative has schizophrenia since thirties and clinically tested MCI two years ago, amnestic type, lives alone in his house and seems to function ok without any support services coming in, 4 months ago primary doctor suspended or revoked license due to delusions he heard. No neuropsychological cognitive follow up since Feb. 2020. I hear big changes in memory declining, he can't figure out all kinds of small problems by himself, gets agitated, stressed, no insight.  I am his cell phone caretaker and coach over the phone, and not proud of it anymore. Reason: daily he tells me every problem he creates and for me to solve and I give detailed instruction (send emails - do this and do that). His phone calls - my listening tolerance is getting less with elongated and sometime psychotic conversations which I label as, "cognitive therapy visits - venting stress."  I am not trained to be a cognitive family therapist or psychiatrist. He thinks he's getting smarter and denies memory issues. Strongly feel his cognitive decline progressed to dementia, early stage pre-clinical, Is there a support group for him where he can vent online or in person with similar people like him? Challenging because he struggles with the computer and doesn't recognize he needs mental health care.  He lives in Berkeley, California and I live in Florida. Thank you for any feedback. It's a challenging situation because I am the only next of kin, and the only person who can listen to him so far.

M1

Do you or anyone have power of attorney?  This may be a situation in which you need to notify adult protective services.  He should not be living alone, that's pretty clear.  You may need to consult a certified elder care attorney sooner rather than later about how to proceed.  You can find one by location at nelf.org.  I'm sorry for your dilemma.

Rescue mom

Ditto to what M1 said. This is really really hard, and it doesn’t get better. He could hurt  himself unintentionally or god forbid, hurt someone else, especially if delusions are happening. He may seem OK on the phone, but you cannot be expected to know, what his living conditions really are day-to-day. Would you know if he went to a support group, even if there was one for people in his stage? Or therapist, even if he said he would?

The national Alzheimer’s Association has a 1-800 phone number, you can Google for that, then call and ask for a “care consultant” for free advice and help.  There are also professional “geriatric care managers” who can be hired to handle long-distance caregiving and help assess needs, etc., but they are not cheap and you have to check carefully on qualifications.

Iris L.

Wiedeman wrote:

My 82 year old relative has schizophrenia since thirties and clinically tested MCI two years ago, amnestic type, lives alone in his house and seems to function ok without any support services coming in, 4 months ago primary doctor suspended or revoked license due to delusions he heard. No neuropsychological cognitive follow up since Feb. 2020. 

He is not functioning ok.

I hear big changes in memory declining, he can't figure out all kinds of small problems by himself, gets agitated, stressed, no insight.

Schizophrenia--no insight

Dementia--no insight 

Read about anosognosia--he will never have insight.

 I am his cell phone caretaker and coach over the phone, 

He cannot be coached over the phone; he should not be living alone.

and not proud of it anymore. Reason: daily he tells me every problem he creates and for me to solve 

By his actions he is telling you that he can no longer manage his life on his own.  But he will not verbalize this due to anosognosia.

and I give detailed instruction (send emails - do this and do that). 

He cannot understand or follow emails.

His phone calls - my listening tolerance is getting less with elongated and sometime psychotic conversations which I label as, "cognitive therapy visits - venting stress."  I am not trained to be a cognitive family therapist or psychiatrist. He thinks he's getting smarter and denies memory issues. 

Again, this is anosognosia--he truly believes he is fine.  This is distinct from denial.

Strongly feel his cognitive decline progressed to dementia, early stage pre-clinical, Is there a support group for him where he can vent online or in person with similar people like him? 

No support group because he does not have insight.  It sounds like he needs to be in a memory care facility with appropriate supervision and activities on his level.

Challenging because he struggles with the computer and doesn't recognize he needs mental health care.  He lives in Berkeley, California and I live in Florida. Thank you for any feedback. It's a challenging situation because I am the only next of kin, and the only person who can listen to him so far.

Long distance caregiving for this situation is impossible.  You might move him close to you or surrender him to a court appointed legal guardian.  The members will have more information.  Also, speak with a Care Consultant at the Helpline at no charge.  They know all about caregiving.  

Iris L

Jo C.

Your Profile indicates this is your sibing; it must be very difficult to manage and also must be very worriesome and stressful; I am so sorry.  Iris and M1 have given some good insight. 

Please call the Alzheimer's Assn. 24 Hour Helpline at (800) 272-3900.  Ask to be transferred to a Care Consultant.  There are no fees for this service.   Consultants are highly educated Social Workers who specialize in dementia and surrounding dynamics.  They are wonderful support, have much good information and can assist us with our problem solving.  Do give them a call to get some professional level advice.  Things cannot continue as they are and there is the possibility of significant danger.

Thank you for caring so much to reach out for input; do let us know how you are and how things are going, we will be thinking of you.

J.