Old 10-05-2018, 03:07 PM #1 (permalink)
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Default Never thought I'd be here...

FTD was my greatest fear early on. Then I thought we'd escaped it.

Now...not so sure.

Memory loss...cognitive impairment (slow processing)_ and now full blow hallucinations and bad behavior. I've been told at least once to find someplace else to live.

Im not taking the mean remarks personally, and I'm working to keep our other caregivers from doing so, thanks to everything I've learned here over the past 4 and a half years.

I think the most heartbreaking is when he tells me that he's stuck to the bed, or insists that we help him sit up on the edge of the bed so he can walk. Then he gets angry that my "pea brain" can't understand the directions he's giving me to get him sitting up. I then tell him that if he can slide his leg a few inches on the bed, I'll sit him up one way or the other. Subject changed.

He demanded a phone book so he could call for a new caregiving team to replace me and the wonderful crew we have. I laid one one gently his chest and walked out. He realized quickly that he could not even pick it up to look at it, and he changed the subject with the aid who was still in the room.

This b*tch is going to make us pay for the good early years.

He told his nurse when she started in the Spring that he wants three more years in order to maximize the disability pay and other benefits in order to leave me better off financially. If it is miserable for him and we can't manage it, is this the one wish I don't have to honor?

Hey, on a happier note the pressure sores are closed and looking better all the time. Extra protein is working miracles.

The other thoughts I'm having right now are not printable.

Becky
One Day at a Time...
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Old 10-05-2018, 03:29 PM #2 (permalink)
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Default Re: Never thought I'd be here...

I hear ya Becky, totally and all the way xxxx
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Old 10-05-2018, 03:37 PM #3 (permalink)
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Default Re: Never thought I'd be here...

Becky,


My heart and thoughts are with you!


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Old 10-05-2018, 04:05 PM #4 (permalink)
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Default Re: Never thought I'd be here...

I'm very sorry, Becky. To answer your rhetorical question, the increased burden you now carry is knowing better than Matt what's best for the two of you.

Best,
Laurie
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Old 10-05-2018, 06:56 PM #5 (permalink)
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Default Re: Never thought I'd be here...

Becky I am so very sorry this has happened to Matt. And even more so that you have to deal with it. This disease is so not fair in any way, shape or form. It is a monster none of us PALS or CALS should have to deal with

Prayers are going up for strength for you.

Hugs
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Old 10-05-2018, 07:01 PM #6 (permalink)
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Default Re: Never thought I'd be here...

Becky,

Is Matt on an antidepressant? Back in 2003, I was angry, sad, and forgetful. It turned out to be clinical depression. I've been on Remeron ever since. One of the benefits of Remeron (for me) is that it makes my mind very sharp and I fall asleep quickly.
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Old 10-06-2018, 04:39 AM #7 (permalink)
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Default Re: Never thought I'd be here...

Becky, that sound so f###ed up. It's good you read a lot here and can rationalize some of it. Getting insulted will yield a bodily reaction nevertheless. At some point you be need to self-protect. Your little deals sound like a good idea to ground him without further discussion.
A look at new and old medication can't hurt. I've read about hallucinating here and about a drug that made someone mean?

Plus being the buffer between his behavior and the aides. I found that part the most exhausting even with a super-nice PALS where I just had to translate sensitivities.

Stay strong! Come here to vent often!
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Old 10-06-2018, 10:51 AM #8 (permalink)
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Default Re: Never thought I'd be here...

Laurie, thank you. You nailed it. It's so hard when he was the strongest, most intelligent, quickest thinker. I'm no slouch, and I know it, but he thougt circles around me.

Tillie, I think of you often. I know you understand.

Jim and Sue, I also think of you often. You are amazing caregivers who have been at this much longer than any of us expected. We are both blessed and, well, tired. Please kiss your darlings for me and tell them I said they are fortunate to have you.

Wish, I took him off one that made him mean (it was for nerve pain, and that is no longer an issue). I feel bad for our aide, who has been with us for over 3 years. He has turned on her and lets her do less and less for him. She has been and still is an amazing help to me, so she stays! Fortunately, everyone does understand that this is the disease, and not him, so we try to keep things light.


Kim, Medications. Oh boy. This man who NEVER did illegal drugs and hated to even take pain meds. is on:
Clonazepam 1.5mg 3x a day for the past 4 years.
Trazadone 150mg at night
Sertraline 150ml at night
Haloperidol 1ml every six hours
Ativan 2mg PRN
in addition to one acting Morphine on schedule and quick acting PRN,, Diabetes meds, and the normal mix for bowels and secretions.

We are now looking at adding one more. I can't remember the name off hand, but it starts with a Z and popped up when I googled meds for FTD.

He can take all of that and still be awake all night sometimes. Not all the time, but I'd be a zombie or dead if I took all of that.

Would you believe that with all of that, he still comes around and makes observations that are right on the money? Gives advice. Flirts. Teases.

He's not completely gone. Yet

What a slippery slope this is.

Love you all.
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Old 10-06-2018, 11:11 AM #9 (permalink)
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Default Re: Never thought I'd be here...

Becky I am so terribly sorry. I expect this has been considered and ruled out? SSRIs of which sertaline is one can ( rarely) cause a frontal lobe syndrome.

Wishing that somehow things get better
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Old 10-06-2018, 11:14 AM #10 (permalink)
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Default Re: Never thought I'd be here...

Nikki, I don't know that what you mentioned has been considered. I've been working with Pallative care doc, but we are going to run everything past his neurologist with the FTD question. Thanks for mentioning that.
Becky
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Old 10-06-2018, 11:17 AM #11 (permalink)
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Default Re: Never thought I'd be here...

Becky I am so sorry and I hope it’s not FTD
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Old 10-06-2018, 12:31 PM #12 (permalink)
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Default Re: Never thought I'd be here...

Whatever it is, FTD, medication reaction, or other, it has got to be difficult.

Becky, you sound like you’re handling it with a great deal of grace and insight. Best wishes to you as you continue to deal with this.
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Old 10-06-2018, 05:39 PM #13 (permalink)
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Default Re: Never thought I'd be here...

Becky,

So sorry this is happening. I have no advice to offer. Only hugs and wishes for strength.
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Old 10-06-2018, 08:10 PM #14 (permalink)
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Default Re: Never thought I'd be here...

So sorry Becky that Matt may have FTD. For me, it was the worst, it really messes with your emotions. Stay strong friend! Hugs!
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