Status
Not open for further replies.

msmissy

New member
Joined
Mar 10, 2008
Messages
6
Reason
Loved one DX
Country
US
State
ia
City
jesup
Hello,

I've been talking care of my dad for the last 2 1/2 years and his disease has progressed significantly. He's been on the vent for the last year and has been unable to walk for the past 6 months. He's never really accepted his disease no matter how hard you try to help him or make him happy. Now its almost like he wants me to feel miserable along with him. He's on an antidepressant and anti anxiety medicines, but i there are times when he will smile away and other times he just lays there with no expression. Now he's starting to throw temper tantrums like a child. Since he can't talk, he rings a bell when he needs me. So he will ring the bell and want absolutely nothing. I try to spend time with him, but its just never enough. And when i tell him i'm busy he starts to play games, like he'll ring the bell and motion he wants suctioned when he clearly doesn't need it, or he wants pulled up in bed, or he wants wash cloths (which he puts in his mouth for secretions). I can only give into him so many times before i get angry and then once he sees me get upset he'll start getting himself so worked up that he turns bright red and starts kicking the side rails on his bed. I can't believe his behaviors. I'm only one person and i can only do and take so much. I've tried talking to him and telling him if he keeps it up he'll have to go to the nursing home and he makes it clear he doesn't want to go there but its like 30 minutes later he forgets our talk even existed. I'm to the point where i can't tell if enough is enough. I know his wishes are to be cared for at home, but his behaviors are dragging me down fast. Its to the point where i don't see this as rewarding anymore. Any one else dealing with childish behaviors? or any advice?!?!
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Missy. THis is a lot to manage, I agree. I am so sorry you have been thrown this curve ball. You are a great daughter for taking care of your dad. I give you extra credit since you have extra issues, it seems. You might want to do some reading up on dementia.

I can't DX him, of course, but my hunch is that, if this is new behavior for him, something else, along with ALS, is going on. Hope I am wrong. ALS alone is a challenge. You may need an extra pair of hands around the house! Please keep us informed. Cordially, Cindy
 

califsand

Distinguished member
Joined
Sep 21, 2007
Messages
237
Diagnosis
01/2004
Country
US
State
ca
City
sant barbara
Tantrums are frustrating!

Missy I went though that EXACT same thing with my father. It is frustrating when you're doing more than you can and you still can't make them happy. My Dad and I went the rounds and he also made excuses to get me to do stuff or, at times, just to drive me crazy. My theory was that since he has so little control over his life, this gave him some control. After a tantrum, my Dad also would pretend like nothing happened or seem to forget how aggravating he was. Sometimes now I think he wanted me to know what his life felt like, the frustration of being unable to talk or do things for himself.

In October I moved him to a Hospice House where he has round the clock nursing care. They are so patient and his attitude has improved dramatically. He didn't want to go, he cried, he tantrummed, I cried, we argued... it was the hardest few days between when I told him he was going and when he went. But I did it because it was killing me to have him here, he was falling daily and too heavy for me to pick up...unsafe for both of us. Amazingly it only took him a couple of days to adjust to the Hospice house and he seldom tantrums anymore. In retrospect I think that he was striking out at me out of guilt for being such a responsibility for me. It's not logical but it IS a normal reaction for fathers who go from being the parent to the child. My father thought he wanted me to care for him and that it was best but know that he is there I can see that it is the first time since the onset of his illness (about 5 years ago he was diagnosed) that he has actually been content.

I don't know if you have the option of a Hospice home where you are or if you have them coming in to give you support. I know that not everyone wants their loved ones to be away from home either and what is working for us may not work for you. What I DO know is that even though I am still a daily part of my father's care, I am not his sole caregiver or even the primary caregiver anymore and it has VASTLY improved our relationship. We are actually back to a point of being happy to see each other. I have the bonus of being able to sleep at night because he's not here falling and I know that he is in extremely caring and capable hands. It has saved our relationship and now I know that when he does pass I will feel relief for him to be done with his suffering but I will be allowed to feel a healthy grief because I won't be exhausted (emotionally, mentally, physically, spiritually, etc) from being his full time caregiver. You see, my biggest fear was that I was starting to wish his illness would hurry up and take him so we would both be out of the misery and feeling that way was depressing and made me feel really guilty. I was terrifed to move him, felt like it meant I was giving up on him and I was worried he wouldn't forgive me. I was wrong in every way though. His face brightens up when I walk in the room and that makes everything worth it.

Good luck and if you hang in there with him you may want to get hospice to come in and help, they can give you breaks, counseling and tons of support and it's free.

xoxo

Sandy
 

paula-jane

Distinguished member
Joined
Feb 8, 2007
Messages
112
Reason
Lost a loved one
Country
CA
State
Ontario
City
Oakville
Missy,

Sometimes, we take our frustrations out on the people we love the most... not because we want to hurt them... but, because we know they will understand and forgive us. It's not you or anything you are doing.. it's the disease. It's not an excuse to treat you badly, but, there is no other release for your father and he is angry about his situation. I remember my mum did the same thing... and I remember the sadness, helplessness and even anger I felt when it was happening to me. Express your concerns to your doctors or nurses and consider hospice or in home help. It's a really tough place to be when all you want to do is love and help your father. As for communication... is there a chance your father is forgetting what he wants to tell you? Is he showing signs of perhaps being confused and this is frustrating him? Something that helped me get through it was to remember that it is a temporary situation. Good Luck
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Paula-jane. Yours is such a good post, you hit the nail right on the head! I agree with everything you said. These folks are trapped in a useless body that no longer functions. This is very frustrating to them. Nobody wants to be in their place. God bless them all. They cannot help their behavior. Just imagine what it would be like to them if someone was to walk in their room, and tell them we found a cure, we're gonna beat this. Just picture this in your mind for one second, nobody wants to be terminally ill, nobody wants to die. Nobody wants to lay in bed day in, day out knowing that they are slowly fading away, and pretty soon they will be struggling to breathe our beautiful air. Als is a terrible way to die, and all these folks are dying a terrible, agonizing slow death. This has got to be something terrible to be going through. God bless all these courageous people young, and old. JMO

Irma
 

msmissy

New member
Joined
Mar 10, 2008
Messages
6
Reason
Loved one DX
Country
US
State
ia
City
jesup
Thank you all for replying. My mind gets thrown in so many different directions. I try to think positive and remember all that he is going through and how miserable he must feel so i try to make him happy and laugh and smile, and understand the reasoning behind his tantrums. but its like what i do for him is never enough. I give an inch but he wants nothing less than a mile. And then in my head i know i'm doing all that i can for him, but then i take one look at him and feel like i should have so much more to offer even though i don't. And i know he loves me even though he takes it out on me, but i told him one day "you know everyone else is going to remember you as a guy who loved to help other people, a guy who loved to do this or that, but i'm going to remember this bitter man, who wouldn't budge on showing his daughter how much he appreciates her caring for him." and its like it doesn't even phase him no matter what i say. But then i take one look at him laying there seeing his muscles twitch, etc, and i feel so guilty and selfish for saying things like that to him.
And Sandy i can relate to everything you said, especially the part about you wishing this process would hurry up. And then the guilt sets in and why would i wish that for anyone?! We do have hospice available around here, but i was told that you have to have been told you have 6 months or less to live and since his disease is so unpredictable as how long he has to live right now, he doesn't qualify?
My dad was a woodworker so he built our home and everything in it and i know how important it is for him to be cared for here. But lately with all these tantrums i've had thoughts about placing him somewhere, because i know it will make it so much easier on me. But then get led back to that guilt, like taking care of him is the least i can do. Its just one big emotional rollercoaster, one hump after another!
We go to the doctor tomorrow so i'll see what he says about the behaviors.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Good luck at the doctor's! We will be thinkign of you.
 

hearts_and_thoughts

Active member
Joined
Feb 6, 2008
Messages
56
Reason
CALS
Country
US
State
OH
City
Burton
new studies being done

I can't say this is even a consideration for your Dad...but I believe my brother has what is now possibly associated with 25-50% of bulbar onset ALS patients. It is called frontal temporal dementia (FTD) and is unlike Alzheimer's symptoms and other "common" dementias. Atrophy of the frontal lobes occur. Symptoms are associated with personality changes and often include anger tantrums. They have not figured out why it happens in some and not others but they find that the mutated TDP43 gene seems to be found in those individuals who do have FTD and ALS. Atrophy of the frontal lobes many times doesn't present itself during initial diagnosed of ALS, but shows up a year or so after diagnosed. Although FTD has been found in fewer limb onset ALS, it still can occur. It is not currently included in the battery of tests for ALS but some are working on the issues of that possibility. A neuropsychologist has to be involved in the diagnosis of FTD and they are not part of the current regimen of healthcare teams for ALS patients. Here are a couple articles I found:

http://www.emedicinehealth.com/dementia_in_amyotrophic_lateral_sclerosis_lou_ge/article_em.htm

http://www.alsa.org/files/cms/Healthcare/Cognitive_Impairment_Transcript.pdf

For my situation, it changed so much in how I responded by knowing in my heart that it's likely that the huge difficulties I have dealt with are likely caused by the disease (FTD) and not him. Like I said, it is likely this is not even a consideration for your dad...but, it doesn't hurt to know the possibility exists. This new research dating back to 2004 is not known by all current medical professionals.

I hope that you have a good support system. God bless you for all that you do and know that one person can only do so much. Your Dad is blessed for having you.

May you have peace,
Mary Jo
 

givenin

Distinguished member
Joined
Jan 25, 2007
Messages
109
Reason
PALS
Country
CA
State
b.c.
City
salmon arm
hearts and thoughts that was so nicely written and made me think about how things are going here and helped in a big way and I hope it will help msmissy this hard enough to do without some of the other things msmissy mentioned having to deal with.

Thanks for the info
 
Status
Not open for further replies.
Top