my dad is always upset

[dserp]

My dad seems to get flustered very easily he can no longer speak at all and he can not walk at all. His limbs are very weak. But he gets so flustered at my family and I when trying to understand him. He also seems to worry about the smallest stuff almost like since he can't walk or talk all he does is worry about things, and they are things that are very small. I don't know what to do about him getting so flustered all the time. Like I have said previously in other post he has let me know that he is miserable to the point that he would rather just pass. I just can't help but wonder if he is just so miserable that he can't be happy. He doesn't even seem like he wants to try and do small thing to find some joy in. I can not imagine what a day is like in his shoes but I feel like we are doing everything we can for him and nothing seems to make him happy...is there anything that anyone can suggest or have had similar occurrences with?

 

[Diane H]

Antidepressant.

 

[affected]

Antidepressants made a huge difference for both my husband and myself. (we both took them)

However, he was very frustrated by his speech issues too.

How do you communicate with your father? Does he use any technology or maybe a speech chart of some kind?

 

[skipper66]

Antidepressants would help a little. But, basically all you can do is keep on what your doing. Does listening to music relax him? Make sure he gets in sunlight. His situation sucks so the answer is no he won't be happy! But, at least you are making him feel loved.

 

[davbo49]

im there myself. i get mad more that i can't do anything. the cooking not able to eat right to taking a bath or driving or anything. dame right it makes you mad. med don't help much at that point. how would you like to have someone wipe your ass. it's not a happy moment. just beer with him it's hard what he is going through.

my dad before he went. the last 2 years before he died he went through a lot of pain. he wasn't him self but i stood by him even he was hard to be around. shear what time you do have with him much as you can even if it is hard.

 

[cheerleader]

Try to remember he isn't mad or frustrated with his family- it is this d...n disease! It has robbed him of the independence we all value, and if it feels like he is taking it out on all of you, you are his safe harbor to express the frustration of his life! Just know you are doing your best- and he knows it, too.

 

[MaxEidswick]

>im there myself. i get mad more that i can't do anything. the cooking not able to eat right to taking a bath or driving or anything. dame right it makes you mad

Ditto that! m2! :-(

 

[dserp]

I was not complaining what's so ever it does wear on me a good bit. But I have the mind set that I will do everything that I can to help my dad and do make him as comfortable as I can. I just worry about my mom and my sister they have a hard time with it and are wearing down alot. My mom more so physically and my sister more mentally, she has had a lot going on in the last year and I think this kind of pushed her over the top. But as all of you who committed said I know that he is miserable and I can't say that I know what he is going through, because I don't it is just hard as a son to watch ur father be miserable. He tells me all the time that he would just rather go ahead and pass and as hard as that is to hear I feel like I realize that if that happens he will no longer be miserable. I just hate this disease...and just try as hard as I can to make sure he knows that I love him and will do whatever I can for him....

Tillie
he has no communication device all he does is shake his head yes or no and sometimes that is hard to understand. We have tried to get him and eye gaze but he says he will not use it. He also refuse to try and learn to operate his wheelchair. I feel like if he did that he could atleast have the from of going as he pleases but he just not big on trying to learn it. So that makes me feel like he just wants to sit there and slowly slip away, because he can't be happy with his life now.

 

[Janie H]

He is frustrated, not being able to comunicate is awful, he needs medication. I kept talking as long as anyone could understand me, I had to give it up.

Janie

 

[affected]

I think that a communication chart could possibly help.

We used several different ones as my Chris wouldn't use technology to communicate either.

We made one picture chart and it was how I got Chris to start with any charts as he was resisting them too. I took all the photos that we used and we made them silly photos. It was the fun of making the photos that got Chris turned around to using it.

So we had photos for things like - going to bed, sitting outside, sitting on his recliner, toilet, clean his glasses, wipe his mouth or to fetch me. I put them in a word document and it was easy for anyone to hold it up and start to point to a picture.

After a bit I then made an alphabet chart and put the vowels in a separate box and just 3 letters on each line.

It took him a little to get used to, but we got things going and it was far easier than trying to decipher his speech. He wanted to speak and felt we were just too lazy to truly try and understand him. Sometimes just using the chart to get a couple of words would allow us to use a mix of him trying to say things, but also you could often then fill in words for him to nod or shake once you got a couple of words started.

I will say though that as his FTD progressed he began to have a lot of trouble with language and the alphabet chart became very difficult so I just kept making charts in categories like a chart of things he may want when outside, a chart of things he may want when in bed. He would also say yes and shake his head in a 'no' shake, or say no and nod his head in a yes. As his neck became weaker he would often nod after I had passed the line he wanted and I would have to cycle through again. It was still all better than him not being able to communicate at all.

Maybe this is something you could help with, just getting a little communication going. It can be the most exhausting thing for both the PALS and CALS.

I totally get what you are saying, I hate this disease, it pushes everyone to every limit.