Now I'm sure

[affected]

Sadly I have come to the conclusion that my PALS does have FTD.

No I haven't had it diagnosed by a doc tor

But I have had many discussions with other health professionals in our care team, some small things that they have now witnessed and with my ALS coordinator. All agree that his behaviour is consistent with FTD.

Then the clincher was today when I said he couldn't safely shower after his fall 1.5 days ago resulting in 7 stitches, black eye and concussion he went into a fury. Tried to physically attack me (but with no arm strength he couldn't do me damage), screamed at me about being a bully, having him where I've wanted him so I can take away his dignity and that he hates me.

I spoke to his daughter a bit later and she said that she has noticed he is becoming really paranoid and sees things that happen strangely and the relief for me was just huge. So I told her about how FTD works and she said it makes perfect sense. She only sees him for short periods of time occasionally, so if it's obvious to her, and she knows him far better than I do, then it is a relief for me to acknowledge that my wonderful, kind, generous, caring man has not turned on me, this disease has taken another toll on him physically.

As if all the rest isn't bad enough, to know that he is going to end his days in anger and paranoia is going to break my heart more completely than if he really was just angry at me with full brain functions.

I HATE THIS DISEASE!

 

[AKjo]

I am so sorry. I haven't personally had any experience with FTD, and can only imagine how much more it complicates things. I HATE THIS DIEASE TOO!

 

[ottawa girl]

This news saddens me Tillie,

All I can do is pray for you. Strength and courage and bravery. I hope you have all the help you need and that you get time for yourself as well.

Wish I could do more.

 

[vickim]

Tillie I am so sorry. You are so brave and caring. I will say an extra prayer for you.

 

[LinCan]

My heart goes out to you Tillie. You are such a loving caregiver, and having to deal with both these things (dementia and physical changes) must be truly daunting. Having had some experience with dementia, I know that you are no longer dealing with that same person, and it must be heartbreaking on top of the other challenges.
Sending my prayers,
Linda

 

[zoohouse]

I am so sorry Tillie. I know that it is hard not to take the paranoid insults to heart, but you know they are not true. You are wonderful, and gentle, and I know you would probably give your right arm if it meant he would not have this disease. Also the fact that your step daughter is supportive speaks volumes. Take heart, that there will be a time that our Lord will reward you for all the love and care that you administer. Here is a hug and a prayer for you.
Phil 4:13
I can do all things through Christ which strengthens me.

Paulette

 

[Katie C]

Tillie... call or email his doctor and get a psych referral asap. Getting him on the right meds can make a huge difference in his life and YOURS! Be prepared.. you may have to lie about what they are, or even hide them in food.. but though they won't bring him back to the person he once was, they can ease the paranoia and anger and make both your lives a bit gentler. Hang in there.. we're here for you.

 

[affected]

thank you everyone for these responses, I can't say how much I appreciate them.

I know I need to get him evaluated, it has been on my mind for months, but I so fear the reaction he will give. He already yells at me - you think I'm stupid, you think I've lost my mind and things like that. And he has such paranoia that I can only imagine what he may interpret having cognition testing done to mean.

He does not have any true memory problems, he would not forget and what if he got through a test with reasonable results - he would never let me forget it. I am intending to make my own appointment with our doc tor and discuss the issues with him, I want to document a bit first so I present something logical. I've found it really helps to walk in to an appointment with stuff in writing and hand it to a doc tor as it is clear and they can keep it on file.

I may be able to get it so that he is asked if he would do some testing to see how things are going or something, especially as he has agreed to the anti depressants. We may find a way to evaluate him and get the help to him.

I refuse to buy into the nastiness, and I refuse to give him less quality care in retaliation. But I also do not just sit with him in silence being pointedly ignored.

I know this is the disease working on him and I love him completely and will do all I can to help. I try not to take it to heart, knowing it is the disease.

He is talking to me now because I got him in and out of the shower today. It took a bit as he was ready to just rocket off again and I could barely get through to him that I was taking him in there for a regular shower. I tried to explain yesterday that it wasn't necessarily the end of him being in a shower, but that he had just suffered a concussion and serious head injury...

Again, thank you all, any and all ideas and tips are truly appreciated.

 

[Barbie]

OH Tillie. I am sending you a really big hug. Really sorry this is added to your burden. ALS is a horrible disease.

<3

 

[affected]

I feel like there is an echo with the 2 threads here

We tried to talk a little last night as he said that he would be better off going into a nursing home as they would give him structure and feed him better...

No more, it went on and no I didn't even think to try and record this, I so wish I had because the constant paradoxical positions were so obvious.

Anyhow at the end I asked about his nasty behaviour and he said that my behaviour has been unforgivable.

Wow, that about sums it all up I guess.

I've got a weekend of family and friends now, so hopefully some stuff will be witnessed ...

 

[vickim]

Tillie, try not to let his behavior hurt you. He is not the wonderful man you married, it is the disease talking. I am so sorry you are going through this. Hopefully you can get him some meds to help. I am praying for you both. Try and get a break while there are family and friends there.

 

[Katie C]

Tillie I'm so sorry. It's so hard to live with a stranger you don't even like while trying to remember that he once was a person you loved more than life itself. Yes he may get mad at testing (though Glen's docs never actually told him that's what they were doing) but really if it gets him on some medication, it will be worth it in the long run. Sending hugs.

 

[affected]

Thanks Vicki, I can bat most of the stuff away without it truly hurting, but some of it sure gets tough.

Fortunately his son and my son witnessed some stuff today too. This may help as other family members can back up that he is not behaving rationally.

I think I will get my own appt with the GP this week.

 

[mrvaughan]

Tillie,
I am right there with you too. You have my love and support and I don't even know you. This is also wearing me down, so I really don't have any advice. Just try to surround yourself with something you love (I have my grand daughters). I use to sing that country song by Rodney Atkins and sing it at the top of my lungs. It seemed to help me.
If you're goin' through hell keep on going
Don't slow down if you're scared don't show it
You might get out before the devil even knows you're there

I've been deep down in that darkness
I've been down to my last match
Felt a hundred different deamons breathin' fire down my back
And I knew that if I stumbled I'd fall right into the trap
That they were layin'

But the good news is there's angels everywhere out on the street
Holdin' out a hand to pull you back up on your feet
The one's that you've been draggin' for so long
You're on your knees might as well be prayin'
Guess what I'm sayin


If you're goin' through hell keep on going
Don't slow down if you're scared don't show it
You might get out before the devil even knows you're there
When you're goin' through hell keep on movin'
Face that fire walk right through it
You might get out before the devil even knows you're there

 

[KCAE]

Reading these posts has gotten me and my wife discussing how to word a medical POA to give her options, with a neurologists concurrence, to either medicate me against my wishes, or put me in a home. No care giver deserves this, and I would not be of sound mind to know any difference.