Hospice update

[lisaohgee]

I spoke with my stepdad about hospice. He seemed like he wants to do it; but he's afraid doing it will kill the little spirit my mom has left. He's trying so hard to abide by her wishes, but I told him, she's never going to AGREE to get hospice.

She also has cognitive impairment, most likely dimentia, so she is not thinking rationally or clearly. I told him that's the reason he has the power of attorney. He did agree to starting giving her nutrients through the feeding tube because our social worker explained the extra proteins might help with her pain. She's eating about an egg a day.

Does dementia lead to an earlier death? She's suffering so much.

 

[abbas child]

Lisa, there's a forum for FTD and ALS, if you go to the main page, ALS/MND Support Group Forums. I think your questions about the dementia would be given knowledgable answers there. "Hospice Update" wouldn't necessarily draw their attention. Very best wishes--sounds like there has been some improvement in communication already!
Ann

 

[Katie C]

Hi Lisa. I've read a couple of articles that indicate that those PALS with a double diagnosis do seem to die sooner. Consensus was they didn't really know why but a couple of issues came up consistently: One is that the level of compliance is much lower with the double diagnosis. Another is that families are less likely to use tools such as pegs and vents. Personally I think those are two sides of the same coin.. Glen was adamant about no peg or vent. When it came time that we would have made those decisions, it was obvious that he would have actually fought us about taking proper care of them. And as I've shared before... even though he needed all his food pureed and even though we thought we had everything out of the house that was dangerous.... while I was sleeping he rooted around in the refrigerator and found an apple, which he aspirated, which lead to aspiration pneumonia.

 

[Lobster]

If you are waiting for clarity and compliance from a person with dementia, it is probably not coming.

I realize this puts you in a tough spot. If I were you, I would lie by omission and sign her up for hospice (your stepdad would have to do this) and tell her the nurse, and any other people coming and going, are there for support so she doesn't have to travel for medical care.

Probably easier said than done.

Just ALS is bad enough. Adding dementia seems so extra difficult. I hate this disease.

Your mom is lucky you care so much.

 

[lisaohgee]

I've considering suggesting to him to just say that's it just for help and not hospice. It's hard because I live 40 minutes away and I have two small children, so I only get to talk to him privately on occasion.

 

[michael0314]

Lisa,

I just this week got on hospice at the recomendation of my pcp. It is not only for the end time, but also preparing for the end time and general care. I hope that by starting now,my family as well as myself will be more comfortable when the tough times hit. It is also nice not to have to go to the DR. anymore they come to me. I am sorry your going thru this. I hope in some small way this helps.

 

[Katie C]

Dementia changes all the rules. Hard as it is... the caregivers need to make the tough decisions based on their best knowledge of what that person would have wanted pre-dementia. Sometimes it means being less than truthful. But sometimes it needs to be done.

 

[abbas child]

Lisa, I'm also on hospice. I've gotten phone calls and visits from so many support people, I thought you should know that unless your step-dad can be the first to meet/ talk with every hospice based person, it's unlikely (from my experience) you could keep your mother from learning the name "hospice". But...It can still be "just for help", if you can make it clear to the agency that they never refer to the end or in any way to her eventual death.