My husband

[patientkiwi]

Kiwi - Tillie aka affected has a link in her profile to a very good article about FTD. I’m not good at linking things like Laurie is, so maybe she will come back and do that too. I really believe you would benefit from reading that article.

Another suggestion, and I see you are in NZ, so not sure how things work there, but could you call his Dr when you are away from home and explain what’s going on. Then have him make a suggestion, even calling the drug something other than what it might be. He may be able to get your husband to take something. Maybe anti depressant isn’t even the right med, but he might have something for aggression he could suggest. Does your husband have any trouble sleeping? Maybe the Dr could say it’s to help with sleep or something like that. I hate to go around our PALs backs but some times desperate times call for desperate measures, at least at first.

I’m around if you need me.

Hugs

Hi Sue He doesn't have any problem sleeping - I do and that is part of my problem because lack of sleep makes me so exhausted on top of everything else. I am trying some natural remedies for sleep to see how I go. I will keep that suggestion up my sleeve as an option but it would feel wrong to deceive him. I am going to have a discussion with him this weekend to see if I can make him see that we need to balance his needs against mine and that if I am to continue looking after him, I need to have some respite breaks and I also need him to stop using me as a whipping boy - not that I will use that term in the discussion but you will understand what I mean. Will post an update after the discussion to let you know what happens. Thanks for your support - I have been overwhelmed with the amount of support I have received on this forum already!

 

[patientkiwi]

Kiwi, your words describing "hanging on by my fingertips", "trying to find a way to get through this" and feeling that "there is no end in sight" really resonate with me. My greatest fear at this point is that this will continue for many more years and I don't think I have anything left in me to be able to keep caring for him. I have been caring for him by myself for all these years and it is taking a toll on my physical and emotional health.

My husband has never been physically aggressive toward me but, then again, he really has no ability to do so. I face the anger and loss of empathy for me. I think the anger has been better since he started the antidepressant. He does seem to reserve the anger for me and the hospice nurses think he is a great guy who is handling his disease so well. If only they knew!

I'm glad you found us here. It really does help to rant to others here who deeply understand what you are going through.

Sharon

Thanks Sharon. I really relate to the fear that it will continue for many more years - I am afraid that the toll it is taking on me will mean that it will ruin my health to the point that I don't even last the distance. Am going to have a discussion with him this weekend around balancing his needs and mine to see if I can get him to understand that if he continues the way he is, I won't be able to care for him anymore.

 

[patientkiwi]

Welcome Kiwi...my PALS is also a slow progressor. At the beginning of March this year his condition deteriorated quickly and his neurologist thought he showed signs of FTD. He was uncommunicative and sullen. The neurologist prescribed a high dose of antidepressant which frankly seemed to make him frantic. I cut the dose by half and that seems to be OK for him. His mental state improved greatly when we started bipap. In my opinion he definitely was affected by CO2 buildup - many of the other threads here confirmed some of the other symptoms he was having.

I agree that slow progression is not always a blessing and don't know how I'll get through 10+ years of this. Several of the CALS who I started with on this forum with have lost their PALS and have moved on but I'm still here. Trying to be thankful that for now he appears to have stabilized again somewhat - we had a lovely 3 1/2 years before things reached this point. He can walk with a walker (though his left foot is going), can still feed himself, and can speak clearly unless he has had something very cold to drink.

I dread the thought that he will no longer be himself at some point. Increasing stress and emotional pain...yes I agree...but your PALS' anger toward you is really hard on you. Can you get any kind of caregiving support? I found that having a third party here (friend or caregiver) helps me a lot because it puts a third person in the mix. He will do things for others that he might not do for me. Hope you can get some help.

V

Thanks, your support is much appreciated.

 

[patientkiwi]

I totally hear you patientkiwi. Anyone who has not been through the extra hell that is FTD will say all kinds of things that we know shows they have no idea of what it is to live with.
If these rages were not part of your husbands previous character then I would suggest there are behavioural changes indeed caused by fronto temporal degeneration. This is a very deeply distressing thing to go through, and I still find it difficult to read clinical things written about it as they don't even begin to address the reality of living with it.
I am not allowed to link to the information I provide on this inside a thread. However if you go to my profile you can find your way to it I hope, as I have written extensively on FTD and living with it on my site.
If you build up enough posts to private message here too I would happily talk to you as often it is very confronting to say in public things that are going on. I only survived because of very private peer support from others dealing with FTD, so I'm happy to help out.

Hi Tillie I'm real new at posting on forums so not sure how to navigate to profile etc. Will look at this tomorrow night as have run out of time tonight. Just wanted to acknowledge your post and thank you. Will return to it.

 

[affected]

If you click on the blue patientkiwi beside any message you have typed here and go to your profile, I've left you a message there that might make the process a bit easier for you ☺

 

[Narrowminded]

Kiwi - at the bottom right of each post is a like button. You can just hit that to thank someone. No need to reply to each and every post. Use this page to pour out your feelings like you have been doing. Many or sometimes no one will reply right away with support. Since we have all been there, none of us expect a direct reply. We know how busy it is and crazy and you catch when catch can.

The discussion is good. I had many of those with my DH over the years. Sometimes, for me they were effective for a few days, sometimes not at all and other times longer. Don’t be upset if he gets angry about just having the convo. However, make sure you start things with “I” as opposed to “you” which will make him defensive. Such as I am feeling overwhelmed with all I have to do, taking care of you and work etc, could we please figure out a way I can best help you, so you are comfortable. As opposed to You are making me so overwhelmed I don’t know what to do and your anger just makes it worse.

I hope this helps. And again no need to reply directly to me. And also the forum suggests keeping quotes to a minimum as some are using eyegaze to navigate here and it can make things difficult. We are all aware of what you might be addressing.

Hang in there, you can do this despite what you may feel like. I had those same feelings and so has every caregiver on this forum. However, you will make it.

Hugs

 

[patientkiwi]

<quoted text removed>

Hugs
Thanks Sue I didn't know how to get rid of the quote which is why it was coming up. I hope that I have managed that this time but if not, I would appreciate some help on that.

 

[lgelb]

To avoid quoting text, look for QUOTE two places in your post, and remove both of them, and everything in between. Also, you avoid having to do that if you enter your response in the blank box at the bottom of the page, instead of hitting "Reply" just after another post.

 

[patientkiwi]

Thank you.
Today I had the discussion with my husband. It did not go well at all. Basically he told me that he believes that because I am still working full time in a job I enjoy and that keeps me mentally stimulated, and also gives me a wee bit of 'social' time in that I can chat with my coworkers, that means I don't want to be with him. He isn't sure whether he still loves me.

When he has gone into respite care in the past, I have always visited him once during the week and he has never mentioned this before but he thinks I should visit him daily and because I don't, that means I don't want to be with him. Usually I am so exhausted that when he goes into respite I need to just have some quiet time to myself and if I visit him daily then I wouldn't get that time to relax. Everything I do that means I am away from him for a few hours or longer means I don't want to be with him - in his eyes.

He doesn't think I do much at all in the way of caring for him because his carers "do it all" - they do an awful lot because he is hoist for transfers and needs 2 people to get him up, showered & dressed, and put him to bed etc, but I also do a lot to look after his day to day comfort and needs when they are not here and overnight as well as at the weekends. Not sure what to do. Very hard to struggle on when he is so totally lacking in empathy that he cannot even try to see things from my perspective.

I have often tried to imagine myself in his shoes and try to look after him the way I would want to be cared for, but obviously I'm not meeting the grade in his eyes. He said if I went away (this was his idea, not mine) he would manage because he would just buy takeaways for tea and even though he cannot get himself out of his lazyboy (he sleeps in one because it is more comfortable than a bed), he would be perfectly fine in the house on his own at night. I don't want to give up work for a number of reasons yet it seems that is the only way he would be happy even though I won't be. I hate this disease and what it has done to our relationship!

 

[affected]

Were you able to read what I have written about dealing with FTD?
This is all completely typical - it really hit me because I could nearly quote this stuff verbatim.
Again, anyone who has not dealt with FTD will never understand what is being said to you and how it affects the relationship - it is far beyond someone 'taking it out on the one closest to them' and far beyond, 'being depressed' and far beyond 'dealing with a terminal illness'.
I am so sorry you have to cop this on top of ALS. My Chris was convinced that he was not 'high care needs' because he could just manage some standing transfers during the day. Therefore looking after him was pretty easy.
If you can find a way to step back from it all, and begin to understand how the disease process is working in his brain, it won't stop it hurting, but it will help you not buy into the discussions and work to keep his quality of life as high as possible, regardless of what he flings at you

 

[Narrowminded]

Kiwi - I’m so sorry the convo did not go well, but I sort of suspected that it would not. As Tillie says so well, logic does not apply when dealing with FTD. If you haven’t read her info yet, please do.

Hugs coming your way

 

[patientkiwi]

OMG Tillie - this morning was the first time I had had enough time to read through your information on FTD. I had tears in my eyes as I related to so many of the things mentioned. I can't understand why health professionals do not look out for this and provide support for the spouse around how to deal with it. I was on the verge of thinking I would have to walk out because of the things he said to me yesterday - didn't need me, could manage on his own just with the carer visits, didn't know if he loved me anymore and so on - and I am so exhausted emotionally that I thought maybe he'd be better off without me. But I still love him and I couldn't do that anyway in reality. I will take up your suggestion of noting things down. And I really relate to what you mentioned about others just saying stuff like "oh, they always hurt those that they are closest to" - which to me was just a brush off that trivialised what I am experiencing (my GP did this to me when I was in tears in her office recently - she meant it kindly but it was not helpful). I have bookmarked your website and will return to it for reference regularly. Thank you.

 

[affected]

I'm so beyond glad it could help.
Definitely people mean well, but they cannot begin to understand, and we hope they never will experience it and get to understand.
Do return and read it as often as you need, and I will help as I can too

 

[patientkiwi]

Hi everyone
Just giving an update of my week. After the 'discussion' we had last weekend when my husband made it very clear that he hated me going to work, I have not mentioned my job at all this week and he has been calmer and easier to be with. It does mean I can't share the funny things that happen in my day too which I find sad because we used to be able to share everything and support each other through everything. I feel I have already lost my man and that at times I am living with someone who is familiar and yet a stranger. It breaks my heart. But I have survived another week!

 

[Narrowminded]

Kiwi I’m happy you found something, that for now is giving you at least a little cooperation from your husband. Could be he resents that you can leave the house and that you have to be the “breadwinner”. Might be a hit to his ego. Even though you both worked before, he could still feel like the breadwinner when working. Plus it does take you away from him and he may be very scared when you are not there, so blaming you work is and getting mad at you for having to go there, might be the only way he knows due to FTD how to deal with it.

Hugs as you move forward.