Update

Melodie6220

New member
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Joined
Dec 2, 2021
Messages
6
Reason
CALS
Diagnosis
11/2021
Country
US
Hello. It's been a while since I've been on this forum. I was really hoping we could turn this thing around, but no... Things have really gotten serious. My husband has Bulbar and is progressing. He really struggles with the mucus. It's in his chest pretty bad I think. He is incredibly stubborn and doesn't really tell me what's going on, so I only know from observation. He is constantly clearing his throat and beginning to cough. He still has a voice but it's incredibly hard for him to speak clearly. It's becoming more and more difficult to understand him. I've urged him to do the text to speak app but he won't do it. I think if he thinks if he starts using these tools given he is giving into the illness.
It's really beginning to affect us (our marriage). I try so hard to help but he is just mean sometimes. I know he's angry. Does this get any better? We have recently really started arguing over petty things. He has never been like this. Always been so incredibly patient and loving towards me. It's very difficult to help him and I've become very reluctant to talk to him about anything. He still won't tell me what his end of life wishes are. I'm basically on my own. I'm wondering if the disease is affecting his personality. Any thoughts on how to handle this would great.
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
693
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
I was the same as your husband, then I was put on antidepressants and my whole outlook on life changed and for the better. I now use aTTS app and I am very happy with it.
Al
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,141
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Hi Melodie, indeed there can be huge personality impacts.
It can be from a number of causes including:
* breathing issues impacting on clarity of thought processes
* many PALS have some slight changes due to 'dealing' with the impact of what is happening
* FTD - a specific dementia that often accompanies many ALS diagnoses

The FTD has many real hallmarks. If you go to my profile you can find a link to information I wrote about my experience in dealing with FTD on top of ALS and an explanation of FTD that may help.

Antidepressants and antipsychotic meds often do help to some degree.

I'm so sorry you are dealing with this - it is exhausting to be living this 24/7 and incredibly frustrating.
 

Mary2

Distinguished member
Joined
May 1, 2021
Messages
264
Reason
CALS
Diagnosis
04/2021
Country
US
State
GA
Hi Melodie, We have advanced directives that a lawyer had us sign. The form is not very good. Recently, a palliative care nurse sent us a form that the health dept here in GA uses that is much more specific about end of life options. For example, hydration and intubation issues. PALS reviewed this and filled this form out. Then in GA a doctor signs it. Maybe your PALS would be willing to fill out a form such as this. Of course if your PALS has some FTD or mental status changes he may not fill the form out. I hope you post here as often as you want because the people on this forum understand exactly the exhaustion and frustration you are experiencing.
 

lgelb

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Nov 5, 2009
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00/0000
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WA
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Seattle
Melodie, the most common reason for meanness is being sad and angry about being on a road through and to paralysis and death. We have all been meaner than we had to be at some time, with less reason.

Some PALS have FTD, many have some changes in their thinking (including less of an ability to empathize with others and see their needs), and if he needs BiPAP and isn't on it, of course, that could prompt all the symptoms of lack of refreshing sleep.

Mucus can build up if there is not enough air flow, so if he's not on BiPAP, I would certainly ask the clinic about it. Warm liquids, papaya or pineapple juice, sometimes soda can help. A suction machine and/or Cough Assist may also help, likewise a room humidifier (a BiPAP includes its own humidifier).

Every PALS will have some negative emotions about their condition. I am sure you have heard the phrase that "depression is anger turned inward." How they were before isn't necessarily aligned with how they handle that. Sometimes it can be people who have had a great life who find it hardest to face what is to come. Some PALS find respite in work, social activity, other passions, and/or religion, and a CALS can be vital to helping them adapt activities to their physical abilities.

It's pretty common for the even those closest to find it hard to follow the PALS' conversational lead at times, which can include a lot of silence and processing. And inescapably, the PALS' physical and emotional needs come first. But if you keep talking (sometimes in bite-sized moments) and listening, you can find common cause in helping him live the best life he can, until he can't.

Best,
Laurie
 

Mana

Member
Forum Supporter
Joined
Feb 5, 2022
Messages
23
Reason
CALS
Diagnosis
01/2022
Country
US
State
NC
City
Chapel Hill
Melodie, I am just catching up and so sad to read your update. Your kind words have helped me and I want you to know I will hold you in my heart. I believe in your strength.
love,
Mana
 

Zephyr

Member
Forum Supporter
Joined
Feb 2, 2021
Messages
12
Reason
CALS
Diagnosis
02/2022
Country
US
State
CA
City
San Andreas
My husband also has bulbar, and at times is a royal butthead. (To put it nicely.) I often think it is because they are scared, angry, and frustrated, and we are the closest person to take the aggression out on.

For example mine likes to point and grunt instead of using the text to speech speaker. After a few failed guesses on my end he usually will toss the tv remote,and sometimes give me the finger.

Lately I just say, " honey please don't be mean to me, I'm doing the best I can." It ticks me off, cause I feel like he's being ungrateful. But I reply with love, because I can't feel what he is feeling.

I also think they are more in their world, and less in yours now; understandably so. It still hurts & I am sorry.

Their road is awful. Most on here have better advice than I do. I am just saying I feel you.
 
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