My husband

patientkiwi

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Hi My husband was diagnosed with ALS in July 2013. He has had a very slow progression compared to many people and is still doing reasonably well physically - is in a wheelchair full time, hoist for all transfers and is physically weak and has significant voice deterioration but otherwise still doing quite well considering the diagnosis. My question is: His personality has changed a lot. He seems to have no consideration at all for my feelings or needs and is frequently grumpy & unkind so much that he is now very hard to live with - is this quite typical? How do others cope?
 

lgelb

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Welcome, kiwi. I'm sorry you find yourself here.

What you describe is pretty common and if you read the Current Caregivers section, you will see examples. There are several reasons. ALS affects metabolism so energy that is used even in speaking and sitting (not to mention balancing in the hoist) is a scarce commodity. Processing information and stimuli takes energy, too.

Studies suggest that it can be harder to make decisions (loss of "executive function") in ALS even if there is no dementia. And of course there are fewer decisions to make since PALS cannot just wake up and decide to do something, so the ones that are left can seem larger than they are.

I think that the loss of empathy and personality changes that many of us have seen goes to energy deficit and often some blend of depression, anger and fear. Some P/CALS use antidepressants. Others do not.

If your husband has a feeding tube and uses a commercial formula, he may be malnourished or in pre-diabetes, so blending real food or using a less processed formula such as Kate Farm is something to consider trying.

If the changes are recent, or even not, and he is not on BiPAP, that might be a consideration as lack of respiratory support can cause changes as well.

In a previous thread, I described it as when you have a bad headache, you want to lie down and rest because you are fighting the pain and it's exhausting. Your husband is living that exhaustion full-time, his slow progression notwithstanding.

You ask how others cope. Apart from trying to rule out some of the specific causes as above, it can be a matter of waiting out the bad and trying to present choices where there is good on both sides.

Best,
Laurie
 

pittsburghgal

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Hi, Kiwi,

My husband also had very slow progression. His first diagnosis was in 2011 and it seems like he is in the same physical condition as your husband. I also noticed a change in his personality over the past couple of years-- mostly a loss of empathy for me. I discussed this with him and told him that ALS can do this but he got very angry and denied that he had less empathy for me.

At the last clinic visit we had in Dec. of last year, his neurologist told us that more recent studies have found that as many as 80% of ALS patients have cognitive changes. This was much higher than had previously been thought. I told the neurologist that I did see some changes in my PALS but again Frank got angry and emphatically denied that he had cognitive changes, The doctor told him that if he had changes that he would not be aware of them and we moved on to something else.

I have felt that my husband has become very depressed and he refused to take any medication for this when I would often suggest this. I emailed his hospice nurse about this and luckily, she was able to convince him to try an antidepressant. He has been on it for 2 weeks now and I think I see a slight improvement.

I just want you to know that I understand what you are going through. It is very hurtful when you are basically dedicating your life (for many years) to caring for your spouse and they seem to lack any appreciation for this at all. I try to tell myself that he was never like this before ALS and that it is this horrible disease causing this.

I have come to realize that very slow progression is very, very difficult for both the PALS and CALS and not always something to be hoped and prayed for.

Sending you hugs,

Sharon
 

Narrowminded

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Hi Kiwi,

I can so relate to what you are feeling. I have a thread that is still on the forum, but closed. Called “struggling”. You can look for it, if you dare. My DH was DX in 2007 after 2.5 years of trying to figure out why he was limping. He passed Nov 30. We were in it a long time. Although his last 8 years were on a ventilator.

He too was grumpy and very direct and lacked empathy to a point for me. We did get him on an antidepressant and that did help. Fortunately for me, he was already using a feeding tube, so at first I snuck it in him. Maybe not the best plan, but it did help.

One thing to remember, is with any antidepressant it generally takes them 6 weeks to get fully on board, so if you go that route and haven’t already, don’t expect over night miracles.

I have to agree with Sharon on the slow progression. Not always a blessing or at least a good portion of it is not.

Please know I’ll keep you in my thoughts,

Hugs
 
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patientkiwi

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<quoted text removed>

Hi Sharon
Thank you. I have felt that the slow progression is very difficult too - I had set up a local support group 4 years ago and my husband was the earliest diagnosed in the group and is the only one that is still surviving (even though we have had new members in between). The other spouses experienced a short sharp period of stress and challenges then the grief of the loss but have come to terms with it and are now moving on with their lives.

I have been living with increasing stress and emotional pain (and I am not in any way minimising what my husband is coping with; it is just that I feel at the moment that I am hanging on by my fingertips so am trying to find a way to get through this) and there is no end in sight.

He is frequently angry and unkind to me; yesterday I took a much needed day off work so I could treat myself to a massage, lunch with a friend, and do some relaxed shopping and when I got home, he was in a rage with me for not having spent my day off work with him.

I reminded him that I had a day off a couple of weeks ago which I spent with him all day, taking him out for lunch, but he seems to think he has the right to control my whole life. This is the type of incident that happens quite a lot.

Some time ago he tried to ram me with his power wheelchair and I barely got out of the way before he would have smashed my legs against the door. I feel scared of doing things that might upset him yet I can't give in to all his demands otherwise he is controlling my whole life.

He is no longer under Hospice care - they discharged him because he isn't dying quick enough to meet their criteria so they offer no support whatsoever. He won't take any drugs other than antibiotics when required and would not even consider anti-depressants. He frequently tells people that he has never had a 'down' day since he was diagnosed but he sure has had a lot of angry ones.
 

patientkiwi

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<quoted text removed>
Thanks Sue - please see my reply to Sharon. I really appreciate the support and I will definitely see if I can find your previous thread. Because I am the only one in our support group who has experienced a PALS with the personality changes, none of the others in our group really understand what I am going through.
 
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lgelb

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Kiwi, for your benefit and others, I added a link to Sue's thread that she mentioned in her message, above.

As to your last post, I am very sorry that you are dealing with rage and aggression. Is there anyone that he trusts, that might speak with him? Have you discussed trying an antidepressant using "I" statements rather than "you?" He truly may not be aware of the "down" roots of his anger.
 

lgelb

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Two general reminders: please don't quote others' text extensively, as many here have difficulty scrolling and/or are pressed for time.

Reminder #2: the improved Search bar up at the top right is your friend! You can search on member name, thread titles and keywords.
 

Narrowminded

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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
 

pittsburghgal

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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
 

lgelb

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Unfortunately, I cannot link to the site in question due to forum policies, but to sum it up, there is a fairly common gene mutation (C9orf72) as well as several other mutations that can cause both frontotemporal degeneration ("FTD") and ALS.

FTD is associated with the personality and behavioral changes you mentioned, kiwi. It can also be associated with changes in or loss of speech that isn't related to muscles, but rather to the brain itself. FTD may occur in about a third of the people with ALS, but there are other changes in thinking and behavior that are milder and more common as well.

Unfortunately, there isn't a cure for the FTD any more than for ALS, but some CALS here have seen positive changes in their PALS when using antidepressants. Trying to make sure they get restful sleep with the right BiPAP settings, if applicable, and are able to enjoy whatever level of interaction they can with you, nature, animals, other people, art, books, TV, film, music, whatever they relate to, is also important.
 

Nikki J

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And FTD appears in what is apparently sporadic ALS with no genetic mutation identifiable. Less frequently than genetic ( and especially C9 but it certainly happens
 

vltsra

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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
 

affected

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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.
 

patientkiwi

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Kiwi, for your benefit and others, I added a link to Sue's thread that she mentioned in her message, above.

As to your last post, I am very sorry that you are dealing with rage and aggression. Is there anyone that he trusts, that might speak with him? Have you discussed trying an antidepressant using "I" statements rather than "you?" He truly may not be aware of the "down" roots of his anger.
Hi Thank you. I did find Sue's thread and have read some of it and will continue reading related threads - I don't get a lot of time to do this because I also work full time and then need to look after him when I get home while I cook tea, do the washing etc. However, I am amazed at the outpouring of support I have already received on the forum. I have never belonged on a forum before so hope I "operate" it correctly. I can see I can't possibly answer all the messages but hope that in answering one or two, the others will understand that I am really appreciative of their comments / suggestions too.
I haven't even tried talking with him about antidepressants. He is so totally opposed to any form of medication (other than antibiotics when he needs them) and I don't know if that is the issue so don't want to raise what would be an ill received topic unless I feel that is what may be the answer. I am however planning to have a discussion with him this weekend around his expectations of me and how we can balance his needs with my needs so I can continue to cope with all this brings and give him all the love & support he needs. Thank you.
 
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