Quitting the testing process

Kuliokugs

My mom has been to the first two testing appointments at a senior resource center. The third test is where she meets with the doctor for the first time, and receives her diagnosis. Prior to this testing process, my mom has been happy - very happy - in her home, quietly doing her daily household tasks and sticking to her simple routine.

The reason that we began this testing is because my dad has been referred to the memory clinic - he has received a diagnosis of Mild Cognitive Impairment, and the doctor gave him assignments of daily walks, B12, Magnesium, daily puzzles and more fruits and vegetables. He refuses to acknowledge that he has any memory problems, and will not walk - he is sedentary.

My mom scored only 10/30 for her memory tests - she does not drive, pay bills or do anything beyond simple homemaking. This process of testing has brought fear and anxiety into her life. The good result of the testing thus far is that we are weaning her off Paxil and onto Zoloft, as they told us Paxil can cause memory loss. 

I don't regret the testing she has had so far, but she doesn't want to go back for her final assessment. Are there good reasons why she should stick with this? My mother has always dealt with anxiety, but her undiagnosed dementia thus far has brought with it - in the last few years - a simplicity to her life that has freed her from her usual worries. She is happy, and she states that she just wants to be left alone to do her daily routine. The entire family has observed her happiness and contentedness at home - but this testing process scares her and makes her feel "dumb", and makes her cry. I want to let her quit. I am worried about my dad's ability to care for her, but I feel the testing process is stealing away her happiness. Advice gratefully accepted.

Quilting brings calm

Here is a compromise.  Take her to see the doctor, stay in the room with her.  Let her leave the room at the end so that the doctor can give you her diagnosis and plans for further treatment.  Which will probably just be a prescription for one of the medications to reduce the symptoms of dementia. Along with similar instructions as your father.  

You really do need to know what her situation is so that you can plan for the future caring for two cognitively ( and possibly physically) impaired people is more challenging than for one. 

Kuliokugs

Thank you, that is a good idea, and I'm going to contact the testing center to see if they'll allow me to do that!

Cynbar

You have come so far at this point, it seems a waste to not follow through and get a diagnosis. It can help you with future planning, knowing what to expect. I also think there are some variations in medications used later for symptoms, depending on which type of dementia is present.  Talk to the senior resource center, share your concerns and get their input. There should be a way to either speak with you directly or send the assessment in written form.

Kuliokugs

Thank you, that sounds wise.

jfkoc

Please be certain that through testing has been done to rule out all treatable causes. This would usually be done by your PCP. The memory test your mother had is simply an indicater that further exploration needs to be done.

DrinaJGB

Just last week I drove DH to have another round of testing (#5 over 11 years)- ordered by his neurologist. It was a long and arduous affair, and had to drive through rush hour traffic while still dark in horrific Houston for an 8:30 am appointment. We were both rattled when we finally arrived.

 I kept wondering as I waited for hours just how anyone---much less someone with cognitive impairment---could concentrate for so many hours of testing. Just how accurate could it all be?

  Never again will I put either of us through that.

mommyandme (m&m)

For us, we needed an official diagnosis from a doctor to get her LTC insurance activated. 

For medical or legal reasons it may be a good idea to follow through. 

jfkoc

My husband went through testing once. After that we  had maybe one check in visit a year. I think that is reasonable when possible. A Dr needs to see their patient.

harshedbuzz

You need to get a baseline on your mom in order to make an adequate Plan B. Given that dad already has MCI which could transition into full-blown dementia or could become too ill or predecease her, knowledge of where she is and where she's headed is absolutely critical. You need a plan you can execute on the fly.

You also likely need to know in order to take legal steps to look out for them. If your dad were to become too ill to make his own medical decisions, your mother as next of kin would be asked to unless another person is his healthcare proxy. 

A score of 10 on a MMSE is considered the low threshold for  "moderate dementia".

HB

glitterqueenscare

My Mom became very emotional for the testing too, there isn't really much more information than can get from the tests if she is already scoring a 10 out of 30.  I had a frank discussion with the neurologist who readily agreed that it simply wasn't worth the stress it put her through and we agreed to not continue testing at this stage.

Keeping her comfortable, safe and clean and as happy as I could was my goal.  I feel you are doing the right thing to try to keep your Mom in her happy bubble as long as you can any way that you can and eliminating that last test isn't going to change things one way or the other for her progression but it might make her days a little easier and her emotional state calmer.