Màking hospice decision

[azgirl]

You all are making me feel better. I will discuss this again with both my neuro and pcp. We did interview what are considered the most highly rated hospices in town so maybe I am not a good fit for this service. They both talked to me with "pity eyes " and I know it's well intended but i have hated that from the beginning.

Other than a peaceful passing my #1 concern is making this easier for my husband and children so their well being and input is at the top of my list.

Feeling stupid that i didn't think of asking my drs to prescribe comfort meds

 

[laurel]

az girl, just one more perspective with this difficult decision. I would seriously consider hospice. I am a retired RN. Families often are just not good at making decisions about when and how much medication to give--too many factors as you are close to their hearts. They fear doing the wrong thing and start second guessing versus jumping right in and giving what is needed. Even though hospice might not be skilled with ALS, they are skilled with dying and observing what is needed. I get what you mean about "pity eyes", but better that than indifference I think, and when they know you a bit the pity will go away and just empathy will emerge. However if you have a strong informed relative available 24/7 then the medicating by family can work. I have only seen this go well once though. Thinking of you and sending positive thoughts.

 

[KW1234]

Hi Azgirl

The social worker came on Friday and I was surprised at how much my husband needed to talk to someone about the situation. She reiterated that they are there to support the family.

I was reassured that my husband had support as that was one of my concerns.

Karen

 

[affected]

I'm glad this is helping you look further into this and how it can work for you and those you love Kay. The bigger the team of support for yourself and your family the better.

I do agree those pity eyes will change as they get to know you xxx

Please let us know how it all goes as you make your choices as it will be of great help to others down the line.

Indeed I would never have coped the way I did as a CALS without the stupendous resource here!

 

[lgelb]

Laurel, I know of many cases, not just ours, where meds were managed by family at the end. I'm not saying hospice is wrong for everyone, but I would seriously challenge the idea that it's always right -- too many stories here say otherwise. Like any possible tool, if using it is significantly more complex, frustrating and/or time-consuming than not using it, it's not a worthwhile move.

As always, anyone with questions about dosages and other protocols such as BiPAP management to ensure the peaceful passing that everyone wants and deserves, is welcome to PM. I have also been working on an end-of-life sticky, if this is of interest.

Best,
Laurie

 

[affected]

But please don't discourage hospice either - those of us who have a medical background will always handle many parts of the entire CALS thing differently.

No one is saying anyone here should use hospice even if it make things more complex. I'm sure we are saying quite different in fact, and we all have the right to say our point of view or our experience without being told why ours is not right. I'm sure that the OP is quite capable of reading each response and deciding what sits well with her and her family and that's what it's all about. There are no blanket right or wrong answers here and just as no PALS is like the next, all hospice organisations are different.

Allow for a rounded position please - we give lots of input so the person can decide for themselves as they apply it to their own personal situation.

 

[lgelb]

Tillie, in no way was I discouraging hospice. I was actually disputing one size fits all.

 

[notBrad]

The reason we have decided against hospice is that two of the drugs I am on - rilizole and nuedexta - would cease to be covered and my physical therapy which I get twice a week would be cut back to once a week. As others have said our pcp handled all prescriptions for morphine and others ( liquid ativan - which is great, percocet, etc).