It is only in the past 4 weeks that life has changed so incredibly much.... before it was me struggling to manage the care of my household, husband, 6 & 2 year old children, managing my career (I am a scientist) and managing care of my brother (6 years into ALS diagnosis) while also managing the care of my mother (68 years old) whose health was failing due to cervical spinal fusions and "mini" stroke. Upon seeing her PCP for a 1 week post hospitalization check, I saw her forearm fasciculating madly. The PCP thought it might be a trapped nerve due to my mother's failed cervical spinal fusion from the year prior (the PCP never bothered to check the rest of her body for fasciculations).
We went in for an EMG and the doctor extended the appointment to do the study on all her limbs. We (me mostly) got the shock of our lives when he said (not at all eloquently) it was probably ALS, especially given the family history, but he couldn't say for sure until he saw disease progression or muscle biopsy.
The past 4 weeks have been a flurry of activity getting all the POA paperwork and other financials dealt with and finding a "supportive care" facility for my mother (we just moved her into an "independent" retirement home in June-- her house sold 7 days after the EMG). I have 3 siblings, one has ALS (and is now at a vented care facility that is 3 hours away from the rest of us (insert anger here)), my sister lives very far away, and my other brother thinks he is always right and can do no wrong, but moves so darn slow that he never seems to get anything done. While dealing with financials we learned my mother had given my sister a lot of money over the last 2 years (my mother did not have the money to give) which is going to hurt us if (and when) my mom ends up needing medicaid.
On Monday my mother got her neuro-psycological testing done. I have been suspecting FTD, but her history is very confounded with the cervical spinal fusions & "mini" strokes. The testing is confirming my suspicions, we will see if the neurologist agrees (we see him in 3 weeks).
I've been reading through some of the forums (time is so tight). I can't believe how much of my mother's behavior is consistent with what a lot of you describe. There is NO empathy or compassion for me or the vast amounts of time I take off work & time with my children or husband to make sure she is ok (there is something for my sister & brother, guilt or something, I don't know). It is hurtful and painful and I often get down in the dumps feeling abused.
She is a good actress too. It is so painful to see her straight up like & tell stories to the doctors. She is so upset about not driving (she however, still believes that the "police took away" her license -- I snuck her keys out while she was recovering from her mini-stroke (which has given some lasting dementia)). We are in this incredibly strange place where she remembers some things & not others and I never know what each day will bring. I think she still has "mini" strokes b/c I can see episodic changes in behavior/ attitude. It is hard to explain.
But overall, so many FTD symptoms fit her to a T. She exhibits every item on the list:
* Socially inappropriate behavior
* Inability to apply consequences from past actions
* Difficulty with abstract concepts (the inability to make the leap from the symbolic to the real world)
* Difficulty in planning and initiation (getting started)
* Difficulty with verbal fluency
* Inability to multitask
* Difficulty processing, storing, and/or retrieving information
* Frequent “policing” by others to monitor the appropriateness of their actions
* Loss of fine motor skills like grabbing something with your thumb and forefinger more than gross motor skills like running and jumping
* Moody or “roller coaster” emotions
* Lack of concern toward people and animals
* Loss of interest in activities
* Unawareness or denial that their behavior is a problem
* Antisocial behavior associated with disinhibition
* Trouble planning for the future
As Tillie described in another thread
"he just gets slightly muddled at times, he has become very withdrawn over the years, finds it very difficult to concentrate on conversations etc and soon gets distracted, he is also quite unsympathetic and doesn't grasp emotions and worries, finally he has no interst in doing anything and no motivation what so ever. "
But she is also getting quite mean and rude and it is so very hard to take on my end. When she is like that I just want to throw up my hands and say FINE, if my asking you to take your meds & remind you to use your walker pisses you off so much, ask one of the other kids to help out once in a while rather than take money from you. The best thing about the neuro-psych testing is that now I KNOW there is a disease process and she doesn't intend to hurt me. I am still processing it all and continuing to work through my anger and sadness.
And to boot, I know that it is likely familial and that one day I have a 50% chance of doing the same thing to my children. This sucks so freaking bad I can't stand it.
So, anyway, that is my sad (and angry) wave hello. I am hoping I get through this anger part soon b/c it really sucks.
We went in for an EMG and the doctor extended the appointment to do the study on all her limbs. We (me mostly) got the shock of our lives when he said (not at all eloquently) it was probably ALS, especially given the family history, but he couldn't say for sure until he saw disease progression or muscle biopsy.
The past 4 weeks have been a flurry of activity getting all the POA paperwork and other financials dealt with and finding a "supportive care" facility for my mother (we just moved her into an "independent" retirement home in June-- her house sold 7 days after the EMG). I have 3 siblings, one has ALS (and is now at a vented care facility that is 3 hours away from the rest of us (insert anger here)), my sister lives very far away, and my other brother thinks he is always right and can do no wrong, but moves so darn slow that he never seems to get anything done. While dealing with financials we learned my mother had given my sister a lot of money over the last 2 years (my mother did not have the money to give) which is going to hurt us if (and when) my mom ends up needing medicaid.
On Monday my mother got her neuro-psycological testing done. I have been suspecting FTD, but her history is very confounded with the cervical spinal fusions & "mini" strokes. The testing is confirming my suspicions, we will see if the neurologist agrees (we see him in 3 weeks).
I've been reading through some of the forums (time is so tight). I can't believe how much of my mother's behavior is consistent with what a lot of you describe. There is NO empathy or compassion for me or the vast amounts of time I take off work & time with my children or husband to make sure she is ok (there is something for my sister & brother, guilt or something, I don't know). It is hurtful and painful and I often get down in the dumps feeling abused.
She is a good actress too. It is so painful to see her straight up like & tell stories to the doctors. She is so upset about not driving (she however, still believes that the "police took away" her license -- I snuck her keys out while she was recovering from her mini-stroke (which has given some lasting dementia)). We are in this incredibly strange place where she remembers some things & not others and I never know what each day will bring. I think she still has "mini" strokes b/c I can see episodic changes in behavior/ attitude. It is hard to explain.
But overall, so many FTD symptoms fit her to a T. She exhibits every item on the list:
* Socially inappropriate behavior
* Inability to apply consequences from past actions
* Difficulty with abstract concepts (the inability to make the leap from the symbolic to the real world)
* Difficulty in planning and initiation (getting started)
* Difficulty with verbal fluency
* Inability to multitask
* Difficulty processing, storing, and/or retrieving information
* Frequent “policing” by others to monitor the appropriateness of their actions
* Loss of fine motor skills like grabbing something with your thumb and forefinger more than gross motor skills like running and jumping
* Moody or “roller coaster” emotions
* Lack of concern toward people and animals
* Loss of interest in activities
* Unawareness or denial that their behavior is a problem
* Antisocial behavior associated with disinhibition
* Trouble planning for the future
As Tillie described in another thread
"he just gets slightly muddled at times, he has become very withdrawn over the years, finds it very difficult to concentrate on conversations etc and soon gets distracted, he is also quite unsympathetic and doesn't grasp emotions and worries, finally he has no interst in doing anything and no motivation what so ever. "
But she is also getting quite mean and rude and it is so very hard to take on my end. When she is like that I just want to throw up my hands and say FINE, if my asking you to take your meds & remind you to use your walker pisses you off so much, ask one of the other kids to help out once in a while rather than take money from you. The best thing about the neuro-psych testing is that now I KNOW there is a disease process and she doesn't intend to hurt me. I am still processing it all and continuing to work through my anger and sadness.
And to boot, I know that it is likely familial and that one day I have a 50% chance of doing the same thing to my children. This sucks so freaking bad I can't stand it.
So, anyway, that is my sad (and angry) wave hello. I am hoping I get through this anger part soon b/c it really sucks.