My husband has frontal temporal lobe dementia

Frances43

Registered User
Jan 28, 2017
7
0
Not good, confusion is getting worse. My husband has frontal temporal lobe dementia. For quite some time now, the mood swings and sudden bursts of anger have been difficult to deal with. But, he is becoming more confused , where he lives, what day it is, not knowing family members. Plus going on walkabout at all hours. I have tried to stop him, but he gets very angry and can become violent. Not sure how much more l can take!
 

Woo2

Registered User
Apr 30, 2019
3,652
0
South East
Hi @Frances43 , I am relatively new to tp and don’t have much experience or wise words to offer , but I am thinking of all the people going through this painful journey . You are not alone in regards to this site , always someone around to listen . Sending hugs and best wishes .

Edited to say , just realised you aren’t new and probably know that this site is brill . Sorry I am a scatter brain sometimes.
 

Andrew_McP

Registered User
Mar 2, 2016
390
0
60
South Northwest
When my mother was going through that long, difficult phase (she's more confused, weaker, and less angry now) I was fortunate. She's strong, but I'm stronger. She's tough, but I'm stubborn. She can punch or scratch hard, but I can duck... well, except when I wasn't fast enough. :)

Much of the time I would tolerate the anger, go for long walks with her when she needed to escape, allow her to break things (within reason) and -- when things were really bad -- I'd sneak lorazepam into her food and we'd both have a break for a few hours. And when all that failed, I'd wrap her in my arms and hold her firmly until she'd beaten out all her anger and energy on my back... it seemed the safest thing to do sometimes even though I worried it might scare her and made things worse. But it did actually seem to help... she needed an outlet for her frustrations, disorientation, and fear, so I kind of put myself in harm's way, in a controlled fashion.

But obviously that's not an option for everyone, and especially not when it's a woman looking after a man who's likely to be more daunting, physically, and fuelled by fear and testosterone. So you have to make sure you're safe. That means medication to calm your husband (administered by external carers if he won't accept it reliably from you) or a care home.

In the mean time, try to remember that whatever the circumstances, no matter how crazy, your husband is always right. Agree with him, placate him in any way practical or safe, do not challenge or correct or try to get him to do something he doesn't want. You need him calm first, and only then can you hope to steer things in a way they need to go.

I took forever to learn this, and even now -- when I really ought to know better -- it's still hard to stick to. But you can't steer the dementia, you can only lead a trail of breadcrumbs which might distract it in the direction it needs to go. And if you can distract the dementia, you'll get more of your husband back for longer at a time.

Which sounds rather more optimistic and positive than I've often felt myself. There's no league table when it comes to dementia, and I'm hesitant to say any one form is worse than any other, but FTD is certainly first among equals when it comes to beating your head against a brick wall! Dealing with it is the hardest thing I've ever attempted to do, and perhaps the stupidest. :)

Keep safe and get help. Best of luck.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Hi @Frances43

Id like to pass on a little tip that was passed on to me. Saying "no" to my OH was like a red rag to a bull, so I was advised to always start by saying "yes" and then go on to say what you have to say - even if you are actually saying no.
Eg, when he wants to go out for a walk "yes, good idea - lets have coffee and cake first."

I have also found that having a routine is a must and changing that routine will set him off. Also I make sure that there is somewhere quiet for him to sit with his tablet. He gets stimulus overload, so needs a quiet space with not much going on. Mostly he sits in the conservatory.

Dont put up with violence. There is medication to calm agitation down, speak to the GP about getting a referral to the Community Psychiatric Team.
 

Cazzita

Registered User
May 12, 2018
617
0
When my mother was going through that long, difficult phase (she's more confused, weaker, and less angry now) I was fortunate. She's strong, but I'm stronger. She's tough, but I'm stubborn. She can punch or scratch hard, but I can duck... well, except when I wasn't fast enough. :)

Much of the time I would tolerate the anger, go for long walks with her when she needed to escape, allow her to break things (within reason) and -- when things were really bad -- I'd sneak lorazepam into her food and we'd both have a break for a few hours. And when all that failed, I'd wrap her in my arms and hold her firmly until she'd beaten out all her anger and energy on my back... it seemed the safest thing to do sometimes even though I worried it might scare her and made things worse. But it did actually seem to help... she needed an outlet for her frustrations, disorientation, and fear, so I kind of put myself in harm's way, in a controlled fashion.

But obviously that's not an option for everyone, and especially not when it's a woman looking after a man who's likely to be more daunting, physically, and fuelled by fear and testosterone. So you have to make sure you're safe. That means medication to calm your husband (administered by external carers if he won't accept it reliably from you) or a care home.

In the mean time, try to remember that whatever the circumstances, no matter how crazy, your husband is always right. Agree with him, placate him in any way practical or safe, do not challenge or correct or try to get him to do something he doesn't want. You need him calm first, and only then can you hope to steer things in a way they need to go.

I took forever to learn this, and even now -- when I really ought to know better -- it's still hard to stick to. But you can't steer the dementia, you can only lead a trail of breadcrumbs which might distract it in the direction it needs to go. And if you can distract the dementia, you'll get more of your husband back for longer at a time.

Which sounds rather more optimistic and positive than I've often felt myself. There's no league table when it comes to dementia, and I'm hesitant to say any one form is worse than any other, but FTD is certainly first among equals when it comes to beating your head against a brick wall! Dealing with it is the hardest thing I've ever attempted to do, and perhaps the stupidest. :)

Keep safe and get help. Best of luck.

Love this post. You sound amazing :) x
 

Cazzita

Registered User
May 12, 2018
617
0
Not good, confusion is getting worse. My husband has frontal temporal lobe dementia. For quite some time now, the mood swings and sudden bursts of anger have been difficult to deal with. But, he is becoming more confused , where he lives, what day it is, not knowing family members. Plus going on walkabout at all hours. I have tried to stop him, but he gets very angry and can become violent. Not sure how much more l can take!

You should not have to take any more at all, it's not feasible or safe. Hope you seek help ASAP - call adult social services. Wishing you luck x
 

Frances43

Registered User
Jan 28, 2017
7
0
Thank you all so much. Many of the things mentioned by you all are so helpful. My husband does attend day centre five days a week, which is a God send. He is on medication, l dread to think how he would be without it. He has a phyciatric nurse/social worker who is so helpful. I count myself lucky this is all in place. But l seem to be the one he takes all his anger out on. I try my best not to argue or disagree with him, but it’s not easy.
 

Andrew_McP

Registered User
Mar 2, 2016
390
0
60
South Northwest
Love this post.
Yes, well, don't believe the sanitised hype from Dr. Jekyll. My Hyde doesn't type much. :)

I count myself lucky this is all in place.
I think you should congratulate yourself on a job well done; you've managed to get far more in place for your husband than I've ever managed with my mother. I should be asking you for advice, not pretending I have half a clue! But obviously it's time to get your husband's med's reviewed.

Hope things settle for you again soon. Nothing ever lasts with dementia and we spend our lives chasing a moving target. But when the calm periods come, they feel as glorious as a Caribbean holiday.

Not that I'd know anything about Caribbean holidays... I'm more your 'getting damp in Cumbria' type, though these days I have to settle for scrubbing the drive in the pouring rain (saves hosing it down). I'm dreading the hot weather later this week because it always unsettles Mum. Which reminds me, must go shopping this evening when/if she settles. We've run out of ice creams, and a Cornetto type cornet's about the only thing I can guarantee will cool her down a bit when she's determined to keep pacing about in the heat.

Still, can't complain. The weather so far has been very helpful for dementia management... no extremes like last year. So far. :)
 

julie66

Registered User
Oct 4, 2013
8
0
Hello I don't usually post. But my husband also has frontal lobe plus Alzheimer's, now in his 7th year the first 4 years was hell exactly what you are describing, but thanks to my admiral nurse who helped me by speaking to the mental health doctor who prescribed risperidone on a low dosage , otherwise I don't know how I would have survived. Just speak to ypur GP or someone . Wishing you all the very best