Need help with hospice

[taminator]

Hospice has been highly recommended lately from several people and this may be the avenue we take to get my mom (and step-dad) some help. I know we'll have to "interview" a few different hospice agencies but I have no idea what to ask, what all they can provide, things we need to be aware of, etc.

We're in Texas. Mom has private insurance along with Medicare. She's pretty much total care and not in great shape health wise on top of the ALS (can't walk, 2 hips that are bone-on-bone, torn rotator cuff, just a little use of her right hand, speech starting to slur).

Any ideas, suggestions, help would be greatly appreciated. So hard to "cover all your bases" when you don't know what bases need to be covered!

 

[charlottecorday]

Judith just wrote a pretty comprehensive explanation of her expectations and understanding of hospice in the thread Hospice Information.Hope that helps.

 

[taminator]

Thanks Charlotte! Just saw Judith's post. After reading it I'm not sure about hospice right now. Seems like you give up a lot of "control" with the illness treatment stuff, as far as doctors, etc. Ugh. This is all just so much to take in. And I'm talking about the insurance/medicare part. Add everything else on top and my head starts spinning trying to get a grasp of it all.

 

[eddie315]

Hey buddy from my own experience with my mom hospice should be no out of pocket expense to you. I have found them to be helpful mom is in her latter stage of als, not only do they provide great pallative care but also support to the family and caregivers hope you are succesful take all the help you can God Bless ED

 

[Peg B]

Hi,

I read Judith's post and thought it was very good. I have a couple of things to add. We had my mom on hospice at our apartment for almost a month. We did not particularly like the first home care hospice group. No particular reason but it just was not comfortable having them in our home. I don't remember but I think they started with "here are our rules and regs." I was scared to say no thanks to them, but to me that was one of the most important things because inviting someone in your home is so different than working with people at say a hospital. So interview and get a "feel" for the match for you and your family and them. I found a wonderful Hospice group that worked for all of us. My sister had a different hospice group that I would not have picked but she liked them in her home and they were fine for her and her family. I think you just need to find that match as best as you can.

Hospice is such a blessing and if you have hospice in your home as opposed to a Hospice Center is does not cost you anything. In fact we had the hospital bed before my mom moved in with us. They set up in our home as opposed to her's and just took our word that she would be coming there soon. Also she was just going to come, starting with just the weekends to live with us, but she got up from bed and her leg broke (cancer) but the point is, they let us do what worked best for our family. They were wonderful. God Bless you all. Peg

 

[Madison1943]

Hi, hospice is a no brainer for me because so far it hasn't cost any money and the drugs they prescribe are paid for by Medicare. No more donut hole. And I talked them out of coming over here every week--they agreed to every other week. That's better. They have provided a nurse and PT and a social worker so far. Bathing help maybe later! I hope never. I don't want anybody in my bathroom except me. They'll be coming to help me until the end. No problems at all.

Carol

 

[kelly]

We finally have hospice in our home. We had a series of exhausting nights where my hubby was having difficulty breathing. We decided that we needed a back up plan to make sure that he would not be in a situation that he had to end up being rushed to the ER..and have things happen out of a scared straight situation. He does not wish to be vented...so we needed a plan. The first couple of weeks having hospice in our home was overwhelming..the social worker, chaplain, nurse, home health aide....all wanted our time. We now have a pretty decent schedule. The aide comes to our house for an hour and 15 min each day. She is able to get my hubby in bed, do a tube feeding..put his bi-pap on and do some range of motion with him. Also it gives me a little break. A nurse also comes once a week to take vitals and give my hubby some extra TLC. She is training to be a massage therapist..so an extra bonus he gets a nice relaxing massage from her during each visit. We also have a certified massage therapist from hospice coming once a week. They have approved my husband's pool therapy and physical therapy. We have had some feelings of loss of control and being micro managed..but the positives out weight the negatives at this point. Some things I would consider before signing on..make sure you have your communication devices...wheelchair...etc....as I do not think they cover these high cost durable goods. We still have some resolved issues..but it is all a delicate dance....
I hope this helps..good luck!

 

[taminator]

Thank you all so much for your insight. My step-dad is still trying to get help through their regular insurance. Any time the word hospice is mentioned in front of Mom she gets extremely upset and won't talk to us anymore. It's continually an uphill battle. And ultimately it's their decision about who comes in to help care for her. I know we'll have to bring hospice in at some point and now I have a much better idea of what they do and what we need to look for.

 

[Judith]

Thank you all so much for your insight. My step-dad is still trying to get help through their regular insurance. Any time the word hospice is mentioned in front of Mom she gets extremely upset and won't talk to us anymore. It's continually an uphill battle. And ultimately it's their decision about who comes in to help care for her. I know we'll have to bring hospice in at some point and now I have a much better idea of what they do and what we need to look for.

taminator,
I so wish your mom wasn’t so fearful of hospice. It is such a relief knowing that everything is taken care of. Hospice stays in close contact with my primary doctor as far as prescribing meds. It is no cost to the patient. They work at your pace. After the staff made their initial visits, I decided that I only want the nurse to come out once a week and the chaplain once a month. All the other services, I don’t need at this time, but they are only a phone call away when I would like them.

Judith

 

[charlottecorday]

PegB's info is very important.A hospice companies hardest responsibility is dealing with family dynamics.The RN should have the ability to bring everyone together in the end stages.That is very challenging, but if done,is most beneficial for everyone involved.
The "fit" must be right.This ia difficult as family dynamics can be so complex.For what it's worth, that's my take!