ftd and obsession or fixations on a person or sex

[mrvaughan]

I know that this is a very tough subject. I hope that it does not offend anyone, and I mean it to be more of a reaching out to see if there are others that seem to have the same issues. 5 1/2 years ago, after my husband went on a vent, we tried to keep our sex life going. He could not move his arms/hands/feet/legs etc, and vary rarely could maintain any kind of stimulation. I totally understood. He was sick, in pain, probably didn't feel the greatest about himself, couldn't lay flat, had different kinds of drugs in him, needed to be suctioned every 1/2 hour, etc. I admit, I was not motivated to be the "sexy wife" because I had turned into the "caregiver". Suctioning out his trachea, helping clean up the "accidents", digging food out of his mouth after he insisted on eating something he shouldn't, all are things that I don't mind doing (well okay, for some reason, I don't like flossing teeth), but it didn't add up to me wanting to maintain a physical relationship. We kept trying, but he always blamed me for not trying hard enough (to put it mildly and leaving out a lot of conversations) so about 4 years ago, we stopped all together and settled into what I thought was a comfortable relationship.
7 months ago, he started staring at me and constantly wanting me in his sights. He talked about sex constantly, and was badgering me to try again. His only conversations he could have with me were either complimenting me excessively, or angry because I should be a better wife to him. Without going into details, his demands for a physical relationship has blocked out any other conversation or thought about me. He tells me I'm weird, not normal, that I need counseling and help so that I can be a normal sexy woman again.
We talked to our neurologist about this, because my husband was trying to change all his pain medication around since he was totally convinced that the medication was stopping him from having a normal sex life. We have had 3 visits with her over the past 5 months as my husband has gotten increasingly demanding. She did tell us that many of her ALS patients have developed an obsession with sex. That one had divorced his wife, that another had fooled around with a nurse on his wife . She said that when someone is on a vent for a long period of time, that they seem to develop a mania. This was not really known in the past and just in the last few years there has been more research on it. In Japan, ALS patients are more likely to go on a vent, and the mania and obsession appears to present itself.
This has been a very hard road that we have been traveling. We have had good times and bad, but it just doesn't seem fair that after all the "giving" that I have done as a caregiver wife, that all that seems to be left in my husbands mind is that he wants me to start and maintain a physical relationship, and nothing else that I have done or am doing is worth anything. I do work full time, I maintain our household, provide the insurance, host the family every Sunday so he can see people, be his health advocate, give him a shower, assist the nurses in helping him with everything imaginable, try to keep our children and grandchildren happy and around…………. etc. I guess that is enough said. I really do want to be a good wife, but I really can't be a "sexy" wife right now, I wish that he could understand that.

 

[affected]

wow, this is a really tough one indeed.

My PALS is not on a vent, but he has had an obsession with se x too, he hasn't mentioned it much for a few weeks, but he did have a serious fall.

I just know the conversations when I read your post, they aren't something you want to repeat, but believe me I think you said enough for me to know the gist of them.

My PALS constantly says he is revolting, he hates himself, he may as well be dead, and he knows that for me the sex is ... well ... he does realise it I know, but he can fixate on it.

He has said he wants to give up and die because he can't have the full intimacy with me, accuses me of being to blame. He has also said I'm just waiting for him to die so I can meet someone else and have a great time.

I think you will know what I mean when I say, the conversations with FTD all revolve around them saying opposite things constantly. I just can't describe them well here in text, but I think you will understand what that means.

I don't know the answer. I met a new CALS recently and she looked at my PALS and quietly aside asked me about this, when I told her briefly how it is here she simply said - I'm going to pay for a prostitute who does disabled people. I said, would he be OK with that? She said yeah, we've been married 37 years ...

Hugs to you, I so 'get' everything you said!

 

[mrvaughan]

It has been such a support to me to see that others are going thru the same things that I am. Thank you for understanding and not judging.

 

[affected]

it's a life-saving support to be understood, and sometimes talk about things you wouldn't say to others not in the same position as we are

 

[Santa joe]

Wow! I thought I was the only one....this is something I can't discuss with my two grown sons. As much as I love my husband, I am so tired I don't think about sex. My husband is on a vent and meds and as you mentioned above having a difficult time. I wish I could be the wife that I was. But to be honest - sex is the last thing on my mind and the first thing on his. Another thing ALS has taken away.

 

[Katie C]

Obsession with sex-related subjects and imappropriate statements are both classic FTD behaviors. PLEASE (once it gets out of moderation) check the following link. It will answer MANY questions! !site_name

 

[mrvaughan]

Thank you Katie, I looked at the website, and looking back on the behavior of my husband, he fits a lot of the FTD symptoms even before he was diagnosed with ALS. I am not sure which one came first. It is so hard to not to get mad or be offended, but it helps that I can tell myself over and over that it is the disease and not the person who is saying or doing this.>>>>

 

[Katie C]

Glen's FTD symptoms definitly predated the ALS symptoms. I've read some articles where researchers are beginning to wonder whether it's ALS with FTD or FTD with ALS. Not that it really matters except that getting a diagnosis for FTD is even harder than getting an ALS diagnosis. Many mental health and primary care providers are so locked into the idea that dementia is a memory disorder that they miss the behavioral variant entirely. Glen actually had a psychologist who told me that there was nothing wrong with Glen, but that my son and I just had personalities that were to strong for him! Luckily for her, I've never come across her again!

 

[affected]

Another thing that concerns me about the tests are that my PALS had one the day of diagnosis that was fairly short - about 15 minutes.

He passed with flying colours and I think he would again today.

He won't grab you hand if you tell him not to, and he can name a lot of words starting with a letter you offer him. He is still an intelligent man and an adult.

He can remember things I forget, and he can see solutions to simple problems.

They can, to a large degree, put on a good act too with the behavioural variant. I've had him being so nasty and spiteful and carrying on, then say a nurse arrives or something, and he is all smiles, everything is good, answers questions. The person leaves and he switches again.

I will note that as time progresses he is bit by bit showing behavioural issues to people and it is being noticed.

My husband also started showing FTD signs well before the bulbar symptoms. I know that I was concerned he was depressed, and FTD does share a lot of similar symptoms to depression.

I think it's the total lack of empathy that is the part I find the hardest. We have only been together 4 years, and bulbar started 1.5 years ago, and I think the FTD started a little over 2 years ago. So I was never really sure enough of what was truly 'him' and what was changing.

The best thing for me is that his children are seeing it now and are starting to tell me a little of their concerns for the change in his outlook on things (they are seeing the paranoia and consequential delusional way of seeing situations) and it's becoming a great comfort to me to know that the man I met 4 years ago was really who he appeared to be, and the man he is now is the result of this disease.

 

[Katie C]

Tillie... I agree... the lack of empathy is one of the very hardest to deal with. I kept saying I now know that empathy and inhibition were very important evolutionary traits as they make it possible for humans to live together!

 

[Barbie]

Not that I can compare--but even my husband who I do not consider FTD; he can be so un-characteristically rude and thoughtless. all the kids, me and him were standing and talking to their visiting aunt. he looked at me and told me to shut up and I talk too much. the whole group's eyes bulged out and mouths fell open. I was so P. O'd but I knew that at least others saw it and recognized it as not the way he is. the Kids have seen it many times, but he has never done that in front of others like his sister and our kids friends.

The only explanation is ALS--he has always been the most kind and loving man.

 

[affected]

@Barbie - it took me so long to sort out what was going on. Was he just depressed and trying to deal with the most awful dis ease in the world, or was there brain stuff.

I think every PALS must have a lot of struggles and won't be 'quite' the same person, who would be dealing with this happening to them? So your hubby may have just burst at you in frustration albeit uncharacteristic of him.

I know that as I struggled to work out what was going on with my husband it was the emergence of patterns of behaviour, not just the odd incident, or just a bit of frustration. I admit too I was excusing him to myself for a long time.

I can't go into too much detail here obviously, but it's kind of a whole package that has become apparent.

Thanks Katie, empathy sure makes living in one house together so much better!

 

[Barbie]

I do understand what you mean Tillie. I feel for the families dealing with FTD. ALS alone it so horrible...I wish you didn't have to deal with the FTD also.

 

[affected]

I still keep trying to tell myself maybe he is not really 'that' bad, and we may have a few better days at times. We used to have good weeks earlier in the start of the behaviour/mood/outlook changes, then maybe a couple or few bad days. Now we have bad weeks and a couple or few good days.

It is like watching the person 'waste away' in themselves, just like you watch their bodies wasting away.

Still it does make it slightly easier for me to handle, just knowing that this is the disease too.

 

[mrvaughan]

Hi Tillie,
I am with you there. We have probably 1 good day to 14 bad days. It is like watching a person waste away in themselves. My daughter says he has a black soul. She doesn't mean "black" like a bad soul. She means "black", like a black hole in the universe. So she says that there appears to be missing parts in his soul, and he is no longer all there.
I makes it so much easier for me to handle, now that I know this is a part of the disease. Unfortunately, there are the other parts, I am going to have to go to court to declare him incompetent. I have his financial POA and his Health POA, but I am not sure if that covers everything that he might try to do… spend all our money, talk someone into helping him get a divorce, making poor medical decisions. etc..
I feel so terrible when I think that I just want this all to be over….. but when it is over… what then ?
Mary