Its Groundhog Day

[LauraA]

Why are my feet swollen? Why is my skin red? Why are my legs so heavy? Why am I so weak? Why are my arms tired? Why can't I sleep? Why is my right arm getting so thin? I think I need more physical therapy....I think the medication the doctor gave me is making me weak and tired, I wasn't this bad two weeks ago....why do I have slurred speech?
These are the questions and comments discussed in my home every day of the week (hence the reference to the movie Groundhog Day). I am a working single mother of two teenagers taking care of my 81 year old father in my home with ALS (I do have a caregiver in the home when I'm at work). He was diagnosed in October of 2010 but has has symptoms for about a year---now he seems to be progressing rapidly. He also has dementia, which does not allow him to accept or understand anything about his diagnosis. He has denied hospice and got angry with me for even suggesting it.
I have no other family to help with him and I feel like I'm at my wits end. I know no one can tell me the rate of progression but is there anyone else out there that has a PALS that just cannot understand their diagnosis? I have no other family and the doctors are not very helpful in this area. Any thoughts?

 

[Katie C]

Laura... here's the thing about dementia... sometimes you just do what you have to do and accept that either way he's going to get angry about something! Don't ask him about hospice... talk to his doctor and the hospice people. This won't be something they've never heard before. Our hospice nurse used to say she didn't want TWO patients! And yes.. I get it... Glen would put food into his mouth while choking because he could not make the connection between the two. You might also contact ALSA or the local Alzheimer's Association to see if there's a dementia-specific adult daycare. That worked great or Glen.. he get a change of scenery and I got a much needed break. They frequently charge on a sliding fee scale.

 

[lms9258]

Laura,
Katie is absolutely correct about sometimes having to just do what needs to be done. I take care of my mom, who also has dementia, and find that I almost ALWAYS have to try and figure out what to do. My mother--like your father--does not "participate" in the decisions regarding her care. She says "no" A LOT. You sound like you are very busy, but the best advice I have, is to arm yourself with as much information as you can. You need at the very least, to feel that the decisions you are making are coming from doing the best you can, with what you have. In my case, this has been at the very least, one of the most confounding and frusrating parts of caring for my mom. I glean as much info here on the forum--and elsewhere--so that I feel somewhat comfortable with decisions made, and advocating. Katie is a great resource for advice, she shoots it straight out there--short and sweet. Feel free to contact me if you'd like info, or support.
I am also Laura

 

[LauraA]

Thank you for the supportive words. This forum has been the best aide for me to connect with people when often most people in the medical community don't seem to know what to say. We just have to take it day by day-- thank you!