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catcaniac

Distinguished member
Joined
Dec 11, 2010
Messages
189
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
North Carolina
City
Sneads Ferry
I've never posted in this section of the forum before but after this week, I am wondering if it will be something I will now be frequenting. How do you know if your PALS is developing FTD? We won't be going to any more doctors with the condition he is in. We finally got his doc to make a home visit last night but I had way more questions than he obviously had time for. We had been planning to take Eric to a pulmonologist on the 14th of June but the doc said he thought taking him out would be too difficult on him. Since two days ago, Eric has had severe anxiety attacks. There was an incident with the nurse and the vent and for two days straight, he was begging me to turn it off and bag him. He hasn't slept in two days. I guess I am asking about FTD because last night, I gave in to his demands almost non-stop all night. He has to communicate with the eyegaze and it is very frustrating. That said, he manages to get out commands at an alarming rate. By about 4 in the morning, two hours taking commands, and 48 hrs with no sleep, I was crying and I explained to him that he was hurting my feelings. That I was doing everything to make him comfortable and I didn't feel like he appreciated it at all. He indicated with his eyes that he wanted to say something. I went to the Tobii and went through all the command letters. He said no to them all. I then asked him if he needed to type something on the letter board instead, me crying the whole time. I thought sure he was going to type out he was sorry or something. Instead he types, "trach run". Which meant he wanted me to change the dressings on his trach. I lost it. He no longer acts like he has any concern for my welfare. Many times, he seems very confused and doesn't make sense. I am now thinking that he has developed this FTD along with ALS basically taking every physical ability he has but his eyes. When we ask him questions, other than care, we get commands back about his personal comfort. I think at this point, if I don't attribute it to the ALS, it would be too difficult for me to handle. It does make sense as he was always such a caring person to me. Any insight would be appreciated.
 
I would say he definitly needs an evaluation. Whether it's FTD or anxiety or depression, there are medications that can help with the symptoms. And YOU need a break! Tell whatever medical help you have coming in what's been going on. If they don't listen.. call their bosses. You deserve the help!
 
I'm so sorry to read your post. My husband passed away two months ago. He was diagnosed in Oct. 2010. We chose not to vent or do a feeding tube if the time came. Fortunately we only had to face the vent question once and then he died two days later. I truly do not regret our decision to not continue with something that will inevitably lead to being locked in. I know there were times I felt pushed pretty hard and I tried so hard to stay loving and helpful. It is not easy.. and there are so many feeling that come out that you end up in a spin.. Dear Katie, you are doing the best you can. Get more help, find an outlet and let more friends into your world. That has helped me during Dave's illness and beyond..

You are not alone.. and this forum will help you find others in the safe boat..

Hang in there..
 
Lack of empathy is a very clear sign of FTD in ALS. Lexapro works well if there is depression, also for OCD.
Wishing you strength. I truly know how difficult it is for you.
 
Often ALS patients develop FTD in the final stages. It is much more common than earlier believed. I am so very sorry you have had such a horrible 48 hours+ with no sleep, etc. What would happen if you made sure he was stable and said time for some sleep and you went to bed? It is awful for me to think or type this, but it sure would be easier (I think) if my PALS could not walk anymore. He can walk just enough to be dangerous.

There is an all day caregiver conference in Raleigh June 21 and there are many sessions on dementia. I realize it might be impossible for you to make it but wanted to let you know. I am planning on attending.

Either way, definitely contact your hospice nurse or someone for help.
 
Stephanie,

Believe me, I consider what you have suggested often. We don't get hospice because of the vent. But the facts are that Eric is used to being suctioned any time he has secretions. I fear that he might choke if I just went to sleep. Lately, he has begun to wet the bed and I think that may be some of his concern and why he is not sleeping. I got my dad to get me some condom catheters and I just put one on for the night. Hopefully, tonight will be better than the past two. There isn't any way I could make the conference as there is no one but myself or the nurses that come occasionally who can handle him with the vent and all. Really, the nurses have difficulty handling the vent, even with me in earshot. I am supposed to get nursing care for 12 hrs daily but I usually am without a nurse at least every other day and many times two days in a row because they can't find anyone who will drive to us and take Eric's case. In some ways, you are right. I have no worries of Eric falling, trying to drive anywhere, yelling, trying to hurt anyone, complaining about eating, etc. But the physical exhaustion of caring for someone who can do nothing for themselves just gets to you sometimes. You are always so helpful and I have read many of your posts lately and can't imagine how you are coping with the many things you and Phil are going through right now either. This disease just stinks for everyone who has it and especially for those of us who love our PALS and have to grieve the wonderful lives we have lost with them. Maybe if you are going to the conference, you can share some tips with me on the forum. I would really appreciate it. After all, I am about 3 yrs behind the ALS learning curve.
 
I can only imagine how exhausted you always are with as much 24/7 care you provide. You are amazing! I hope you can get some down time. It's like the hospice social worker told me today -- this is not a sprint, it is a marathon we are running and we have to make sure we are getting our "gatorade" to keep going.

I will gladly share everything I can from the caregiver conference. I hope the catheter works tonight and you can get some rest. I know you guys have been thrown into this as fast as I have ever seen anyone. You are right, this is an awful disease. Take care of yourself too.
 
Thanks for all of this guys. I am sad for you all but will be looking for coping ideas from your thread if that is alright. Back when it was just ALS, it seems like a walk in the park compared to these days. Just ALS, the physical stuff, is almost predictable but when you throw the anger and un-just attitude in, it is impossible to know what to expect. I am ingraciously including my family with your suffering group, we have no formal "diagnosis", only a doctor's prescription for depression which remains unconsumed. The kids and I have been taking the tongue terror in stride, but there will be a breaking point. Meds for the FTD/depression, whatever, are useless until Tom gets to the place where everything is in a tube. He WON'T take anything and he doesn't care that he is hurting us. I am sorry that PALS are afflicted this way and sorry for the CALS that get the extra beatings from it. I pray for time outs for us all, so that we can remain strong.
 
Tom's Support, I am sure you have already thought of this, but are you able to give him the FTD/depression medication without him realizing that is what it is? Doesn't he take other meds that you can just add in others without him really having to know exactly what it is for? In the past I have told Phil - on the rare occasion he would ask - the medicine was "for his comfort".
 
That's what I had to do with my husband, too. (with the doctor's blessing). I learned to hide the pill between two fingers so that, when he asked to see them, it wasn't visible. we now have all medication throught the tube, so it is no longer an issue.
 
I also had permission from the psychiatrist to crush pills or empty capsules and just mix it in with something... pudding and applesauce work very well for this. I know this is difficult to understand for those not dealing with FTD, but going back to the toddler model helps: you wouldn't ask a toddler to take their medicine, you would find a way to get it into them, even if it meant hiding it.
 
I tried the sneaky once, depression meds and it was working, however, Tom is a tricky beast and hiding the crushed pills became a no go. He threatened lawyers if I was caught sneaking pills again.
For now, the doc has prescribed medication to reduce the phlegm which, by the way, also aids in sleep and will help with the depression. When he announced THAT yesterday all I could say was "HA HA!"
Tom has actually agreed to take the meds so I believe the phlegm scares him as much as it does me. What a relief.
One day at a time, as usual.
 
Sometimes ya gotta love those side effects! Good to hear, hope things are a little better!

Stephanie
 
What did the doctor prescribe for the phlegm?
 
bless you both at this time
 
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