When is it time for hospice?

[GilWest]

Mom is in a nursing home and continues to decline. Has anyone dealt with their PALS and hospice?

 

[krnNdug]

GilWest

I just went to my 1st ALSA support group. I would suggest you contact either ALSA or MDA and speak with them. They may be able to help you. The director at our support group told us about a lot of options hospice care provides. It doesn't need to be in the last 6 months. They may be different in different parts of the country but ALS is terminal and they provide palliative care as well as hospice care, but it affects other therapeutic benefits if you elect to go on hospice so you need to be well educated.

Good luck.
Doug

 

[GilWest]

GilWest

I just went to my 1st ALSA support group. I would suggest you contact either ALSA or MDA and speak with them. They may be able to help you. The director at our support group told us about a lot of options hospice care provides. It doesn't need to be in the last 6 months. They may be different in different parts of the country but ALS is terminal and they provide palliative care as well as hospice care, but it affects other therapeutic benefits if you elect to go on hospice so you need to be well educated.

Good luck.
Doug

Just contacted MDA this week. Nobody had ever suggested I do that. I just found out that mom met the criteria for hospice a few months ago. From what I understand, hospice has there own equipment they bring in, other than augmentative communication. Mom does not want to be vented, and hospice can be discontinued and re-continued at any time.

 

[Atsugi]

We did hospice at home.

We were told that, while on hospice, our medical options were limited: We could only use the hospice provided physician, and we could not use the emergency room. Life saving was not an option.

At some point, hospice switched from palliative care to "crisis care" and a nurse was present 24/7. Our nurses were of various experience levels. One had never dealt with patients. None had dealt with quads. Everyone SAID they were qualified, but it always turned out that they had no idea what ALS was, and how to deal with it. I trained each one at the beginning of shift.

All in all, I was satisfied, because it enabled me to sleep from time to time.

 

[krnNdug]

I did not know it cold be stopped and restarted. The ALSA rep today said we had to be careful when we decided to go on hospice. She said the ones around here now provide palliative care for long term terminal folks, but again, I would talk it out thoroughly with insurance and hospice. I will be interested in what happens with you and your mom. She obviously needs care being in a nursing home. maybe someone there can help as well.

 

[vlcare]

My husband has been in hospice since April 9. Since that time, we have never met either of our hospice physicians. The nurse maintains phone or text contact with them. They authorize prescriptions (i.e., dieuritic meds, UTI and blood pressure meds). Nurse comes once a week to check vitals. Aide comes twice a week to bathe. Hospice nurses on call 24 hours a day to help if you freak out.

Equipment provided: one hospital bed and one tray table. Incontinence briefs, foley catheter and skin paste are provided. Bed linens were not provided.

The primary goal of hospice is symptom management for pain, infection, anxiety, agitation. Hospice provides acetic acid solution so I can flush catheter twice a day.

We utilize home health care aides 4 hours a day to assist with all other daily needs.

We entered hospice care on the written orders of an oncologist. My husband has both ALS (3/2010) and a para spinal tumor discovered in April of this year.

 

[Santa joe]

I'm still waiting on a hospice agency to come in. The doctor is having a hard time finding one that will accept vent patients. I have home health (bed sore) that I am very pleased with so I've not pushed the issue. Be sure you know what hospice will offer. Hospice is a whole new ball game.

Debbie

 

[jellis86]

A PALS friend has been on hospice since 2010...she still lives at home. She also goes on respite a few times a year.

From what she was told, PALS don't have to follow the six month hospice limit because ALS is progressive with a bleak outlook.

 

[rosec]

My PALS has been on hospice for about seven months now. They provide all the meds, hospital bed, alternating pressure mattress, suction machine and Jevity for tube feeding. We have to pay for the Trilogy machine separately. The doctor has visited three times so far. We get a nurse visit once a week and home health aide five times a week. We are on private insurance because my PALS still works a few hours a day.

 

[tinyandme]

Rosec~ your PAL is on hospice and still working? That's amazing! Must have an awesome attitude

 

[rosec]

Yes, tinyandme. I think working, even a couple hours each day, keeps his sanity. Which in turn helps me keep mine. We are extremely grateful to his employer and his boss. He can hardly speak now, but can still type using an on-screen keyboard and mouse, two mice actually, a normal one and a foot pedal mouse.

 

[Frosty123]

I wish I had a dollar for every patient family that has said to me "I wish we had known about hospice sooner" I would donate it to fund research. In addition to some of the benefits listed in posting above there are professionals trained in the end- of- life process, support and respite for care- givers in an in-patient setting. While it is true it is not all the support, I.e. 24 hr care that one might need, it can truly ease some of the burden both financial and emotional. As palliative care departments grow along with more inpatient facilities it is my hope that some of the misunderstandings about what we can and cannot offer will be made clearer to all people. Basically we want the same thing you do for your loved one, for them to enjoy whatever time left in the very best environment with the very best care for not only the patient but their loved ones and caregivers. Being on hospice is NOT A DEATH SENTENCE. Many of our patients actually improve and are discharged after having their pain managed. We are there to help, not take over. It will always be,the patients desires that we try to meet, be that at home or in a facility. Do not be afraid to call in this extra support, you can run the entire show, and if you don't like it you are free to try another or none at all. Please do not hesitate to contact me with questions, I say call them in early and think of it just as more free care.

 

[Frosty123]

One more thing, you may remain in hospice care as long as there is decline from when you sign on, you will be evaluated by a doc every 6 months but it is rare that there hasn't been some form of decline so they are just reviewed every 6 months. Basically you can't "use up" this benefit.

 

[Barbie]

my husband was on hospice 11 months and then discharged. he did not decline fast enough is what they told us. not all Hospice offers palliative care. we won't be going back on until the very end.

 

[MaxEidswick]

>because ALS is progressive with a bleak outlook.

lol