Old 11-18-2014, 09:05 PM #1 (permalink)
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Unhappy Waving a sad hello

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.
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Old 11-18-2014, 09:26 PM #2 (permalink)
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Default Re: Waving a sad hello

Waving back and saying Hello, sorry you are having to deal with all of this on your own, please keep in touch as there is a lot of support here for you.
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Old 11-18-2014, 09:27 PM #3 (permalink)
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Default Re: Waving a sad hello

Ras30, wow, your plate is very full! So sorry. ALS sucks. Hope things settle down and you can get some help. You are in a safe and supportive place here on the forum. One thought - you said you have a 50% chance of giving this to your kids. Likewise, you have a 50% chance of NOT passing it on. Good luck!
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Old 11-18-2014, 10:12 PM #4 (permalink)
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Default Re: Waving a sad hello

Oh Ras ... tears ...

Knowing is the first key to surviving FTD.

I am still haunted by some of what went down, but I can pull myself up for the most part and remember what his poor hands and arms looked like and remember his frontal lobe was wasting away too and it was not him, it was the disease...

I counted to 10 (or 50) many times, bit my lip, refused to say back some of the awful things I felt like saying so often. I would say them to myself, then put them aside and get back on with it.

One thing I had to do for myself however was use some 'when - then' statements and stick to them. They were far from biting back, they were honest and they were essential for me to survive sometimes. I knew that they didn't truly achieve what they would with someone without FTD, but they were important to me.

eg. as his ability to speak really diminished and he couldn't rail the awful words at me anymore, he would instead become very sullen and pointedly refuse eye contact, refuse to answer any questions from me, just plain ignore me.

So I would have to say - When you choose to ignore me like this, then I am going to sit out the front for my cups of tea or go for a walk.

Then I would be sure to do this. I would continue giving him all his care lovingly, we much attention to detail and with kindness. When finished I would go and sit or walk with a nice view and do something nice on my own. It was too hard to do several hours of care with someone ignoring your presence, and then attempt to sit and relax with them!

It didn't achieve anything as he would usually come around after a day or three, regardless of my statement. For me it was just that I felt I had let him know why I was not just sitting with him being ignored.

Interestingly, whenever someone was here, because he wanted me to interpret, he would spend much of the time with his eyes trying to be locked on mine so I would understand him and interpret. As soon as people left, he would withdraw and refuse eye contact.

They can act in any way they feel gets what they want. The sudden changes in behaviour because of situation or people around at first would stun me. Again, it wasn't him, it was the FTD. It doesn't make them dumb, even if their executive functioning is gone, but the can be cunning. It all helps mask what is going on. No one else saw more than a few glimpses of what I lived, so it felt like telling tales on him if I were to try and explain it to anyone.

I'm glad you have joined here and hope we can help support you.

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Old 11-18-2014, 11:00 PM #5 (permalink)
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Default Re: Waving a sad hello

Thank you for listening. Cheerleader, you are SO RIGHT 50% I won't have it. But man, it feels like the "fates" are not on my side at the moment (rough month over here).
The reason I am the one taking care of my mom is b/c I am "better" at being patient, at SEEING HER FEELINGS and responding to them than my siblings are (i rarely outburst at her, it has happened, but I also count . But it feels so very thankless. I am a very honest person and expect no monetary benefit, well, b/c she is my mother and how many years did she take care of my poopy diapers and love me and read to me and sacrifice for me? It tears me apart to see my siblings take money she NEEDS. To bill her for their time helping her. And while I don't expect monetary benefit it hurts to see her give it to them and I am lucky if I get a thank you (and I rob my children and husband of my time & love to do all this). I have so much anger over that. Taking that in combination with my mother's anger at my "pushing"... it is all so hard to take and I feel awful for having the feelings of "what about me? I am doing my best for you." I am trying and trying to sort out the anger and sadness of it all so I don't feel angry with her for what she can not control (and the anger of the predicament and disease itself). I am not a confrontationalist by nature, so it sucks so bad to do that to my own siblings in a time when we should be there for each other, not fight. I swear the only thing worse than FALS & FTD is fighting over money. All such icky & yucky feelings.
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Old 11-19-2014, 01:38 AM #6 (permalink)
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Default Re: Waving a sad hello

Oh I can feel myself remembering so much from your words, and I could flow forth so many stories...

but I'm not going to, as I don't care to bring it all into the 'now'

What I will say is that you are describing such typical FTD behaviour, and sadly, you are then from the family side describing such typical human behaviour.

I don't know why the ones who do the least seem to think they deserve the most recognition for a little, whilst not giving recognition for a lot.
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Old 11-19-2014, 06:43 AM #7 (permalink)
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Default Re: Waving a sad hello

Waving back sadly, Ras. ALS sucks but the wonderful people here provide amazing support.

Welcome to our little family where we all understand.
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Old 11-19-2014, 09:46 AM #8 (permalink)
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Default Re: Waving a sad hello

Hey, I can't imagine how tough it is. It is so difficult when you feel pulled in so many directions. I will be thinking of you.
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Old 11-23-2014, 11:31 PM #9 (permalink)
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Default Re: Waving a sad hello

Hi Rasl30, it all sounds like what goes on in my place! The apathy, the lack of thanks or appreciation, but then they can thank some stranger or want to give a present to someone who has stolen from them! Grrr, I know.

One last thought about the genetic stuff, remember that in addition to a 50% chance of not having the gene, even if you have the gene or pass it on, having the gene doesn't mean you'll ever get sick. The "penetrance" of some genes is very low, so of ten people with it, only two will ever have symptoms, and they may not show up until they are 85. And now that they have identified the genes responsible, let's hope that in ten years' time, ALS will be cured or at least controlled, just like diabetes.

I've learned that it's a waste of time to worry (although of course I still do), because what you worry about isn't usually what happens. My husband's entire family has died of cancer, and that's what we worried about. He was sure he would get cancer and had every screening test possible and never had even a hint of cancer. Got ALS instead.
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Old 11-26-2014, 09:58 PM #10 (permalink)
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Default Re: Waving a sad hello

Travelbugg-- I really hope it is C9 for the pentetrance alone! It does make life a guessing game though. And worry, oh the worry. I want to concentrate on the here and now & what I can do. I still worry though

Update: I got the official transcript from the neuro psych testing. It was an interesting read for sure. There are so many medical things going on with her. Now I understand why the neurologist was hesitant to officially diagnose ALS, there is a *slight* chance all her symptoms are a combination of her cervical spine & "stroke" issues. With family history, it is unlikely, but there is a CHANCE. I am going to plan for the worst (in terms of aligning her care) but hope for the chance. Oh please, please let there be a chance!
We are moving her to a more intensive "care" facility this weekend. I hope it goes well, she hasn't been to happy about things lately. Sigh.
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Old 11-28-2014, 01:21 AM #11 (permalink)
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Default Re: Waving a sad hello

Hi Rasl. Waving a sad hello to you from here in South Africa. Far away in miles, but close in thoughts. I am so sorry that you are going through so much all at the same time, but I am so glad that you have found this forum. Vent, cry, laugh, ask questions, tell us your stories. Here you will be accepted, understood and cared for. I am so pleased that you have found a good place where your Mom can receive the care she needs. With two small children and a husband at home, you need to be there for them and not lose the joy you find in them. Don't feel guilty for that joy, it is what will fill up your tank so that you can be there for your mother. You sound like a very caring, committed daughter, your whole family (brothers and sister especially) are very, very lucky to have you. Stay strong and stay in touch.
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Old 11-28-2014, 10:21 AM #12 (permalink)
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Default Re: Waving a sad hello

C9 is not particularly low penetrance according to the doctors and research I have seen. My friends in Europe are being told 100 percent! I was told and have read 85-96 percent. My doctors include the ALS neurologist who studies the genetics and led the team that discovered c9. But certainly your chances on inheriting a defect from a parent are only 50 percent
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Old 11-28-2014, 06:09 PM #13 (permalink)
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Default Re: Waving a sad hello

I swear no one tells it better than Tillie, every time I read her posts it could be me talking. Pay good attention to what she says - she KNOWS. Bless you Tille, Ras - your in my prayers.
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