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Elaine Ramos

New member
Joined
Feb 22, 2008
Messages
6
Reason
CALS
Diagnosis
03/2006
Country
US
State
New Mexico
City
Albuquerque
Does anyone experience this? My husband has bulbar onset of ALS for 2 years now. He has a lot of pain and takes several pain killers throughout the day. He is generally himself, but sometimes he forgets what we spoke about. But he also sometimes accuses me of doing things without his knowledge. It is very frustrating because I feel he doesn't trust me and he even says he doesn't. It's very hurtful. I'm trying not to get into arguments with him but tonight I lost it. He keeps accusing me of the same thing for over a month now even after we've discussed it but he seems to forget. I don't know if the ALS is causing this or if he is just being mean to me. I switched jobs to take care of him; I care for our 2 teen daughters, pay the bills, grocery shop, get the girls breakfast, off to school, make lunches, pick them up, take them to their activities, make dinner, wash clothes, work fulltime from home, deal with the doctor appts, hospice, and all the piling bills. My health has deteriorated through the past 2 years because I don't have time for myself. But, I'm generally upbeat, happy and joke a lot. I try to not let him rob me of my joy when he acts like this because then I get depressed, sad, and cry and then I can't do all the things I have to do. Anyone else going through the same thing?
 

hope

Distinguished member
Joined
Oct 1, 2005
Messages
230
I am so sorry you are going through this. My husband has als and I have seen changes in him. At times it can be difficult. He is not the same at times. There is a book out about an actor who had als and it is called Not That Man Anymore, I am reading this book now and I find it very helpful. I think there is so much pain to deal with it that it causes some of the changes. The frustration of the disease can cause someone to be different at times. I think the one who is the closest is the one who hears most of the frustration because I think they feel comfortable enough to vent. It is not pleasant for the caregiver but I think that is what happens. They do not want to leave there loved ones or be in this horrible illness and they do not know what to do. I have learned when some days are difficult or moments to give a kind hug and go and do something else for a little bit then return and things seem okay again. I believe it is part of the illness. I just keeping giving hugs through the good and the bad days. I hope this helped a little bit.

Sandy.
 

witzz

Member
Joined
Dec 6, 2007
Messages
19
Reason
Loved one DX
Diagnosis
06/2007
Country
US
State
NY
City
New York City
Hi Elaine,

I'm sorry you're going through this. I know that ALS can sometimes affect the brain and cause some dementia...but I'm also wondering if it might not be the painkillers your husband is on. I suggest you ask the doctor about that. My grandfather had Parkinson's and we thought he also had Alzheimer's, but we found out later that the dementia was caused by the painkillers he was taking to deal with the Parkinson's. Good luck! You are such a great caregiver for your husband and I know it is hard. Hang in there!

Best wishes,

Witzz
 

CindyM

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Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
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Hi Elaine- It is my strong personal belief that caregivers should not try to go at it competently alone. It is simply too much to handle for one person. Your ALS clinic should be able to put you in touch with low-cost or no-cost care for at least a few hours a week, and if you had an extra pair of hands around the house, the two of you could maybe figure out what is causing this behavior, or how to deal with it. There is nothing wrong with asking for help!
 

DonnaJ

Member
Joined
Feb 6, 2008
Messages
25
Diagnosis
07/2001
Country
US
State
West Virginia
City
Culloden
Yes Elaine your not alone. I am going through very similar things with my husband. He also has bulbar onset and has had als for 8 years. He is, I believe, suffering with dementia and ocd (obsessive compulsive disorder). I could go on and on about the things he does and its wearing me down. I'm sorry I have no answers for you except maybe if he will agree to take paxil, prozac, (antidepressants). We have gone through hell the last few days trying to convince my husband he would feel so much better if he would take the prozac prescribed. He told hospice and the doctor finally that he would but that he didn't feel good about it. When the medicine came he backed out on me. I can't force it, but I just know he would do so much better if he would just try. He has big time control issues.

Good Luck and prayers,
DonnaJ-WV
 

paula-jane

Distinguished member
Joined
Feb 8, 2007
Messages
112
Reason
Lost a loved one
Country
CA
State
Ontario
City
Oakville
Oh Elaine,
my heart breaks for you and your family.
This a very difficult time for all of you.
I'm sure that your husband would never dream of treating you badly or making you feel badly. Bulbar ALS can be very unpredictable for many people.
I wish I had some words of advice. Please make sure that you get a break and that you look after youself! You are of nooooooo use to your husband or family if you become ill! ALS is bigger than everyone... try to get some help in the home.

Paula
 

Paul Wicks

Member
Joined
Feb 15, 2006
Messages
22
Reason
CALS
Diagnosis
06/2015
Country
UK
State
LO
City
London
Elaine,

As others have mentioned, ALS can be associated with a form of dementia called FTD; sadly doctors and non-profits have been slow to warn people that this can occur which means there's little good research about how to cope. One very important thing to bear in mind though is that for some people, cognition is affected by breathing and sleep quality. Is your husband using NIV/BIPAP at night? Has he had breathing tests done? People with bulbar symptoms are at particular risk of nocturnal hypoventilation which can cause memory problems. Also the pain meds could be confounding the picture somewhat.

You might find this leaflet by ALSA helpful: http://www.alsa.org/files/cms/Resources/FYI - Cognitive Impairment for Families.pdf

All the best
Paul
 

momof3

New member
Joined
Feb 15, 2008
Messages
1
Reason
CALS
Diagnosis
01/2007
Country
US
State
New Jersey
City
somewhere
My husband was diagnosed with bulbar als in 1/07, when he as 47. He had slurred speech that began almost imperceptibly about three years before his diagnosed. He was being tested for about 18 months before his diagnosed. For the past month he has been relying solely on his PEG for nutrition. Since the early fall, his speech is basically incomprensible, but he refuses the learn how to use the Dynavox that we received in February. He will write a short note, but only after several attempts to speak. Sometimes he can't seem to understand why I can't understand him.

His deterioration was relatively slow until last summer. Since then, he has dropped about 40 pounds. He is extremely fatigued, but refuses to sleep with the BiPAP. His behavior has changed drastically. He was a very successful, Type-A executive. Now he doesn't seem to care about much except praying for hours a day to "survive." He has become very disengaged from our childrens' lives (ages 14, 12 and 9). He'll watch them play baseball, etc... but I often have to encourage him. He has bocome very dependent on me, and often has a hard time making decisions. He has also left all the financial/insurance/medical plans to me.

He went through a stage of violent outbursts (e.g., throwing things, yelling at me) but this has subsided.

In summary, I often think he is "Not That Man Anymore". I will definitely read that book. Maybe it will give me some insight.

It's hard not knowing what the future brings. One year ago, I would never have guessed that his disease would have progressed this quickly.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello Momof3. I am sorry to hear about what is happening to your family. This disease is tough on all concerned, but younger families such as yours have their own issues. I am glad you found us, though. Write back any time! There are lots of folks in your shoes around here and all have lots of great ideas on how to cope. Cindy
 

robinswife

New member
Joined
Oct 5, 2007
Messages
7
Reason
CALS
Country
CA
State
B.C
City
Surrey
I feel the same

I just want you to know that everything you discriped is exactly what I have gone through for 3 years I Finally stopped all the giving to my husband I felt he was very angry and was tring to make me feel angry I had to tell him that I need time for me and the girls .It took me a few weeks of going out and doing what I wanted before he stopped complaining . I enjoy him more now because when I go out and do other things I have something different to tell him . I know that its very hard sometimes . But deep down we also know that he loves and appericates everything . god bless you and stay strong!
Robinswife
Does anyone experience this? My husband has bulbar onset of ALS for 2 years now. He has a lot of pain and takes several pain killers throughout the day. He is generally himself, but sometimes he forgets what we spoke about. But he also sometimes accuses me of doing things without his knowledge. It is very frustrating because I feel he doesn't trust me and he even says he doesn't. It's very hurtful. I'm trying not to get into arguments with him but tonight I lost it. He keeps accusing me of the same thing for over a month now even after we've discussed it but he seems to forget. I don't know if the ALS is causing this or if he is just being mean to me. I switched jobs to take care of him; I care for our 2 teen daughters, pay the bills, grocery shop, get the girls breakfast, off to school, make lunches, pick them up, take them to their activities, make dinner, wash clothes, work fulltime from home, deal with the doctor appts, hospice, and all the piling bills. My health has deteriorated through the past 2 years because I don't have time for myself. But, I'm generally upbeat, happy and joke a lot. I try to not let him rob me of my joy when he acts like this because then I get depressed, sad, and cry and then I can't do all the things I have to do. Anyone else going through the same thing?
 

Clbrink

Active member
Joined
Oct 26, 2007
Messages
44
Reason
CALS
Diagnosis
11/2003
Country
CA
State
Ontario
City
Burlington
I am experiencing the exact same thing, although it is compounded by alcohol, tobacco and marijuana addictions. At the moment I am in a catch 22, my husband knows that no long term care facility will take him due to those addictions, so he openly admits it when signing up for respite, so now there is no respite either. And... since he has openly admitted to smoking pot, without a permit (Canada issues permits for medical reasons) the social worker has a legal responsibility to report this to childrens services! now they can come to my door and remove my 2 children.

My husband refuses to stop, I am faced with a decision for the children or him... not a fair decision to make but an easy one at that, I will always choose the children first a choice I had hoped he would of made as easily, but has not.

Besides that the accusations that I control him, for example I put the remote out of his reach... well, I do, not on purpose, I just move it when I put him in the lift, transfer him, then one of the kids calls me or I go back to making dinner etc... and I forgot the remote... No he has not lost his voice, he just refuses to use it since he figures I did it on purpose!

I am so burnt out that I think I have dementia! It is not uncommon for me to walk in a room and look around with a dumbfounded look on my face... "what was I looking for"... and grocery shopping... that is a chore, brain exercise, even with a list, I am all over the place! The kids and I joke about it, now when they see me backtrack, they say "mommy has a pea brain today and giggle!"

Humour helps, but I know what it is to stand at the kitchen sink, doing dishes, silently with tears rolling down my cheecks, thinking if one more thing happens I will collapse... I have some tough choices ahead of me, at this point it kills me to know that whatever choices I make I will be the enemy... This 4 years after diagnosis... I have been waiting for what I call "that moment" where the anger is gone and every moment is so peaceful and meaningful, for those moments that the children will carry with them for their entire lives with love and pride! Memories of their Daddy...

He could do so much, but he has stripped himself of all that not ALS, it is his anger...
 

beaner1

Active member
Joined
May 8, 2007
Messages
58
Reason
CALS
Country
CA
State
Alberta
City
Redcliff
Clbrink,
You need some help girl! There should be some kind of respite care for you through your health region - call them and get someone in. If your husband doesn't like it - tell him tough luck! His options should be that either you get some help, or you'll drop him off at the nearest hospital, and let them take care of him. You need to take care of yourself too - your children need you. I know what it feels like to be that tired, and to have someone so stubborn - my husband was like that, and the only thing that made him change was a near-death experience. He got pnuemonia, had a heart attack and has been hospitalized ever since (almost two months). His doctors refuse to release him until he's better (not happening - keeps getting pnuemonia), but my husband also realizes what we were put through was wrong, and isn't so keen to leave the hospital now - he finally realizes the kind of care he needs is extensive (24 hrs/7 days a week). It's hard for your husband too - he's dying, and it's a terrible way for someone to die. He's angry, scared, and hurting - do you blame him? The sad thing is that we always hurt the ones we love - he is taking out his anger and frustration on the one closest to him - that's you. Try not to take it personally (I know - easier said than done!) - but be insistent about getting some help!

My husband's change of heart came about only when he almost died - and sometimes he still says hurtful things - that has to do with the meds he's on - but it's been a slow process for us.

Good luck to you, hang in there, and make sure you get some help - you have to make yourself a priority now - your children only have you!

Best to you,
Beaner
 

Clbrink

Active member
Joined
Oct 26, 2007
Messages
44
Reason
CALS
Diagnosis
11/2003
Country
CA
State
Ontario
City
Burlington
Thank you beaner, just after I posted I had a conversation with a friend, they told me straight out that I have been and was the enabler that I was just as much to blame for the problem. I had to agree, I am the one who runs to get him the booze, I am the one who has lit his joints... why? to keep the peace? but there is no peace now... So I have put my foot down, knowing full well that it will be difficult -No more alcohol and drugs in this house- his answer, no more money... I said ok, but you will need to get somebody in while I work. (what else could I say?)

So he called his dad, his dad (enabler #2) arranged a hotel room for him, he got me to pack some things, then I called a cab for him (wheelchair accessible) and he left. This morning he came back with 2 bottles of bourbon and has not said a word... I took the bottles, put them in the garage, and will be getting them out as soon as our friend comes to pick up the pot today it will all be gone.

His dad was very upset with me, and I somewhat understand or try to... that is his son, and he told his dad "I only have 6 months left, I just wanted to enjoy it"... He was diagnosed 4 years ago, and throughout those 4 years he has set dates that he would never see again... "I will not make it to another birthday"... "I will not see my daughters birthday again", landmarks to give an excuse rather than living for the moment. I understand the fear, I understand the anger, the pain... I had in the past moved out of our home with our children, while he was on a waiting list for a place nearby, long-term care... He never moved, there was always an excuse, but it all came down to his lifestyle that he was not able to change and not willing to change. He ended up in the hospital for 10 days with pneumonia, I thought things had changed, "that moment" had arrived, his dad wanted him to go to chronic care 2 hours north of where we live, he and I agreed that we would give it a try at home, he came in and with time nothing had changed.

My only option is to stick to my guns regarding the addictions, he can smoke his cigarettes outside, withdrawal will be difficult, he does not fit in anywhere, the only option is chronic care, not an option that anybody would like. my only choice is: that if there is a chrisis I am to call 911, they will take him to the hospital that has an ALS clinic 10 minutes away and from there he will be transfered to chronic care.

The forever optimist that I am... I am still waiting for "that moment" hopefully it comes sooner than later... I want him to go outside and race his 4 year old daughter, him in his chair her on her bike... it is priceless! (it reminds me of being a child and how I looked at my dad) for him to allow her to climb up on his lap so they can read together on a regular basis, to ask our 11 year daughter old how her day was, to go to the bus stop and greet them or send them off with a smile on his face... To take interest on how they are today and to share so they can be better tomorrow.

That is what I want, I want to be allowed to have a bad day, not to be told by him that his life is over, I want to get up in the morning without the worry of what kind of day this one will be... I want peace! I want for us to live the best life we can through these challenges.
 

beaner1

Active member
Joined
May 8, 2007
Messages
58
Reason
CALS
Country
CA
State
Alberta
City
Redcliff
Clbrink,
I feel for you...that's all any of us want - to have peace, to love each other, and to enjoy what time any of us has left. Sometimes it's just not meant to be - some people always choose to look at the glass as half-empty and not be grateful for what you do have. Live the way you choose to - don't let others bring you down, and don't feel guilty or buy into his BS.

The fact that my husband (who I love dearly!) of 25 years has ALS absolutely sucks, and it's just awful that we aren't going to get enjoy the fruits of all our hard work, and he's not going to get to walk his baby girl down the aisle when she eventually marries, or get to enjoy grandchildren - but we have still been very fortunate in our lives. We have two of the greatest kids ever (I'm a little prejudice!), we have wonderful friends and family, a great home, and in general, have had a pretty good life - I choose not to be negative. I want to spend as much quality time as we can together - we're not going to get quantity. My husband was very much the half-empty type - I just refused to buy into it, and he's come around now - but there's not a lot of time left, and so much has been wasted! Frustrates the hell out of me, but what can you do about it now?

Just remember that you are the master of your own destiny - don't let the roadblocks stop you - find a way around them, and appreciate what you do have (Great kids, from the sounds of it!).

Hang in there!
Beaner
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Clbrink, I am wishing you peace and serinity as well. I wonder if it would help to talk to someone who can help sort out the issues and prioritize them. Al-Anon often does just that, and for free! There is usually a meeting nearby - often several a day. The folks there can help you figure out what parts of your life are impossible to change, how to change what you do have control over, and how to cope with the rest.

Please keep us up tp date on all this! Cindy
 
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