My PALS has become mean

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Chickenoots

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I am in process of developing a plan where I list all the things he must do at his September doctor appt: full ftd testing, psychiatric care with a doctor knowledgeable about als, medication for depression, psychological counseling with a therapist knowledgeable about als. He will have to not only agree but follow through. I will have spoken with the social worker prior so that his doctors will know and hopefully be on board. I would like to have phone numbers and prescriptions ready for them to give to him. If he says no, which I fully expect, I plan on having a list of people who will have agreed to let him stay with them. It is possible he will lose his job (he is a pastor and I have already gone to our church for help and that was a disaster and a joke). I will have to get a full time job etc. Both our daughters are on board with my 14 yo bursting into tears of relief. I plan on speaking with my 14yos psychologist before implementing any of this.
I am scared and have all the emotions possible. I am almost positive he will say no. I plan on having his same friend with us. I’m wondering about bringing 2 of his friends. What do you think??
All advice is welcome
 

affected

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Many many PALS with FTD refuse testing.
This will be very confrontational and a huge hallmark of bvFTD is that they honestly have no recognition that their behaviour has changed. With paranoia in there as well, being 'told' they 'must' be tested is likely to cause an explosion and refusal and convince him that his paranoia has been right all along.

Just so you know this and are not surprised.

Many PALS are not formally diagnosed via these intense methods, often for these very reasons.

I do wish you all the best, it is not at all easy.
 

lgelb

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As Tillie says, people with FTD seldom say, "Oh, I get it, of course, I will do anything you want." And they will typically consider your demand unreasonable. That means, you have to be ready to separate yourself from him on your own hook if that's where this is going.

I would not expect you can get rx in advance without his having been evaluated (I hope not!)

I don't think he needs both psychiatric care and counseling, per se, and possibly neither. Short story, those should overlap for him and neither may actually apply if he has true FTD.

If you make a long list, it's an invitation for anyone, not just him, to say no. I would keep it to the first thing, which is that he needs a complete neuropsychiatric evaluation with a psychiatrist, neuropsychologist, neurologist or whoever is responsible for those in your clinic. The social worker can tell you who that should be.

Then the requirement could be, do the eval and follow through with all recommended medication(s) and other care.

But I agree, the alternative to his complying should be clear with the list of other places he can live (does each household understand fully what they would be committing to?), and you should be prepared to follow through, given this is the path you've chosen.

Also, given that he may lose his job, the household he enters would be supporting him apart from savings(?)-- I would make that likelihood clear to them, since it sounds like you would need your salary for you and the kids. Since you are in a small town, you're going to be linked and discussed by everyone no matter who lives where, and should be ready for that, kids too.

And he would need to have Medicare apart from his job, if he doesn't already, and apply for any state or federal benefits for which he'd be eligible. It doesn't sound like he could do that on his own, so that would likely be your lookout regardless.

Best,
Laurie
 

affected

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Counselling is of no use with bvFTD because it is the frontotemporal lobe of the brain wasting just like the muscles of his body are wasting. It's truly tragic because in many ways the person you knew seems to be there, and is there, and in many ways they are not.

The effect on executive function means they cannot help formulate any kind of plan, as that is too complex, and definitely cannot follow through on enacting a plan.

Medications can reduce the rage and calm them a little, but it won't reverse behaviours.

FTD is a terminal disease even without ALS, so it will be important for you and the kids to understand this and realise that if he has FTD he will simply continue to decline. The memory most often is not affected, and he will not forget anything and that feeds the paranoia.

I don't know what the answers are for you and your children, but like Laurie, I want you to understand that this is not a treatable condition. It may be better for you to ask for an appointment of your own with his neurologist and discuss the FTD with him. In many places FTD is diagnosed more through evidence from the CALS. You could consider starting a diary - keep it as objective as possible, documenting patterns of behaviour. Do not show this to your husband nor threaten him with taking this to a doctor.

Again I'm so sorry you have to deal with this.
 

Elkhorn3

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Echoing what Tillie says here. The FTD brain is fighting against its own deterioration, involuntary paranoia, loss of control, and ambient dread. It is incapable of perceiving impact of its behavior on someone else. Ultimatums are useless. Your ALS care team is your greatest ally - but don't be surprised if even they don't really understand FTD that well. For us, it's been only possible to diagnose retroactively, looking back over the last year or two. Now I can see that FTD reared its horrible head maybe 18 months before he ever had a physical symptom.

It's all so, so hard especially on you and your girls. He may not be able to understand or respond to your demands, but you need respite and support. I am so sorry.
 

Chickenoots

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You all are right. I have read those things but am even more desperate and not thinking clearly. My daughters neuropsychologist believes he has FTD. The social worker at the clinic believes he has it and told me to go ahead and act as though he does.
I found out he’s still texting women and talking about me. He’s texting men, too, but he was told by our church to stop texting women. He’s going to replace our roof ($8k) and charge it, yet he had a fit when I told him our youngest needs new glasses. He’s given away our lawnmower and now we pay with money we can’t spare for someone to mow the lawn. Today is our anniversary and first he texted me our weekly budget (Controls via money) then he texted me “happy anniversary”. I also ate a ton of candy last night - I’m an emotional eater. 🥴

My als association has started a group only for caregivers and I need to follow up with that today.
 

affected

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You are going to need a lot of support - take all you can!

I took antidepressants, saw a counsellor regularly (which was brilliant as that was time not to whine about all that was happening, but to stop and look at how I could respond to it all for my own mental and emotional health), and was in contact with others going through caring for someone with FTD, and then had my family here.

I co-admin a group on fb specifically for caring for someone with ALS + FTD, if you would like that very private support too, I can ask a moderator here to send you a private message from me with some details. Sometimes with this you need to a place you can talk that is completely private.
 

KimT

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I would also see an elder law attorney to find out your rights in declaring him unable to make financial decisions. You need to protect yourself and your children, physically, mentally, and financially.
 

lgelb

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Agreed. I would do that first, as changing where he lives wouldn't change the need to control what's left of your money. If FTD is documented in his records, I would take/send those to the attorney.
 

Chickenoots

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Affected, I would really appreciate joining your fb group.
 

affected

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I've asked mods to send you a private message from me so we can get that going 💜
 

BlsdMama

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DeeDee,

What you wrote resonated so deeply with me. Exactly this. All my plans and dreams for the future? Gone. I was hardest on my husband. I was so bent on “preparing” them for life without mom that I was being tough on them. And my husband and I parent very differently. I kept trying to change him because I could see our kids needed both parents and when he kept being him, I was angry.
Finally, one day, he said, “You’re letting this disease make you a bitter person.” I was livid. Yes and why? Easy for him to say- he’s get see the baby turn 10. He’d get to see our girls get married. He’s going to meet our grandkids and live life.
But later, in quiet moments, I thought on that. He was right. And did I want my kids to remember Mom like that instead of the person I was? The littles already can’t remember me able to run or play games. Wouldn’t bitter and angry memories be just so much worse? I had to give it to God - my anger, my resentment, my need to prepare them....

I’m not saying things are always perfect. Heck, we lose our physical identity and that’s very much part of who we are. But definitely allow that this anger may well be a part of depression and diagnosis.
 

Carolina76

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I understand completely! Thank you so much for posting. My husband was diagnosed with ALS in July and it has been a whirlwind. My husband has always been hard to live with. I've seen counselors and taken antidepressants many years of our marriage but I finally got to the point of not caring so I could cope with his verbal abuse. Last year before we knew what was going on with his health, he became so verbally abusive that I secretly purchased a travel trailer and was prepared to move out when he was diagnosed. I wondered at the time if his illness may have something to do with his behavior because he had gotten worse with me and even started on our family. When we found out he had ALS I felt so bad and so guilty for even thinking about leaving him at such a time, There is no way I can walk out now. Thanks to your post now I know that it is his disease making him worse. I'm so glad that it is common and the doctors know about it! If things get bad now I know I can talk with his doctors.
My prayers are with you, God bless you.
 

Chickenoots

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Carolina76, I am new to this but I would keep the travel trailer. It will be your place where you can get a break and doesn’t mean you are leaving him. I never thought about a travel trailer. That’s really a great idea.
 
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