katygal

Member
Joined
Jul 24, 2018
Messages
25
Reason
Lost a loved one
Diagnosis
01/2018
Country
US
State
TX
My PALS and I have decided to use hospice when the time is right. He uses a Trilogy about 17 hours a day, does not want to be trached or have a PEG. He is able to eat whatever he wants (with the help of water to wash it down), he transfers from scooter to chair/commode but anything he does is exhausting. His FVC in February was 26%, MIP 20, and MEP 32. In April of 2018 his FVC was 52% and has seen a pretty consistent decline since then. He feels his breathing has declined since Clinic in February and finds he needs the Trilogy after anything physical, such as eating, showering and going to the bathroom. We are in the "funding" stage of a PWC, an adjustable bed would be helpful, and I would like some training on transfers. In a sentence, he is still mobile but his breathing is very labored. In fact, even with the Trilogy, it is difficult for him to lay on his left side. He hasn't had any chest congestion but does have nasal drainage. He can speak about 5 words before taking a breath and uses Cough Assist 3 times a day.

We are without a Clinic pulmonologist but our local pulmonologist (who is also certified in critical care) suggested that we start the hospice process of interviewing programs, getting an evaluation and when the time is right for us, start hospice.

I can see pros and cons at this time. It is comforting to me when I think I would have support when breathing distress comes or when needing advice and help with issues that arise. I also know it would change our current routine and with my PALS still able to transfer and do some things on his own, we may give up some autonomy and privacy.

I know everyone is different but I would cherish any personal thoughts on this decision, especially from those who have dealt with breathing issues as a primary concern.

Thank you so much for taking the time to read and respond. I love this place and appreciate all the honest sharing of personal battles. I learn so much from each of you.
katygal
 

ReginaS

Forum Supporter
Distinguished member
Joined
Nov 20, 2018
Messages
155
Reason
Lost a loved one
Diagnosis
02/2018
Country
US
State
LL
Our situation is a bit different but maybe some of my experiences might be interesting for Katygal. PALS' breathing is the only thing that's still somewhat OK but swallowing is hard, and movement w. arms/fingers and legs is very tiring to impossible and very limited. He is still getting used to trilogy and uses it maybe 1-2 hours a day.

At first I thought hospice sooner might be a good idea also as I got a bit scared of all the responsibility. I have no medical training. Very recently we got a lift and a hospital bed from the ALS chapter and I am getting trained but we are not really using it yet.
We interviewed 1 hospice service in town and that was very strange but might mean nothing as it was an "intake" nurse and we might never see her again.

pAls definitely qualified but when I asked the question what hospice would do when he is not in pain, still breathes OK but cannot swallow (he does not want tube) the conversation when nowhere. This hospice's criteria for administering morphine is pain or breathing difficulties and I wanted find out if not being able to swallow would fit into the pain category. That nurse started to ask me if I would ask hospice to perform physician assisted suicide and if I would like to see the definition. It's illegal in our state.
There is at least 1 other hospice service in town but they do not include for trilogy under "comfort care". They classify it as life extending measure and would not pay for it.
The third hospice service is for profit and I have not talked to them yet.

We then opted for palliative care at the local clinic and it's what we need at this time. They mentioned hospice too but we can also call that clinic any time, day and night with questions. For now it's good enough.
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,547
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
Oklahoma
We started hospice mainly for the extra help. An aide came 3 times a week as did a nurse. Meds were delivered to our door.

It was also nice to have access to a nurse 24/7 if I had questions.

It never hurts to talk with several hospices and see what they can offer. I interviewed 3 different agencies.

After you talk with them, you can decide when the time is right for you.
 

azgirl

Senior member
Joined
Jan 20, 2014
Messages
956
Reason
PALS
Diagnosis
12/2013
Country
US
State
AZ
hospice great decision for us. They take care of all medications, calls to rt. The new rt comes out monthly which is better than clinic.

do make sure you have all dme in place first. They only provides comfort care.!!

I also get seven hours of paid for cna which is great
!

interview several. Mine uses cheap supplies so we I only use their wipes and gloves, but continue to buy quality briefs and other products!
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
107
Reason
CALS
Diagnosis
1/2015
Country
US
State
Texas
We have been on hospice for a while and are satisfied for the most part. My pals is very relieved not to go to clinic anymore and it is nice to have them on call, like this weekend when he was experiencing pain and they sent a nurse out.

We have an aide for showering and a nurse who comes out and checks on him on a regular basis. He is on trilogy and they are ok with that. They don’t, however, offer cna help that will stay for any period of time while I run errands, that is up to us and not covered by Insurance or Medicare here, so I hired a part time cna one day a week for now, which we pay for.

However, it is a benefit to have all the meds delivered directly to us. He has progressed since starting and it is a relief to have their number here 24/7 and know I won’t get bounced around like we did at the clinic, which, in our experience, was more interested in research than the patient. I can’t tell you how long we would sit in the exam room waiting to be seen, hours is not an exaggeration. And after going to clinic for 4 years and participatibg in two clinical trials, no one has even called to see how my pals is doing. He feels like he was just a guinea pig to them, where hospice actually seems interested his quality of life.
 

ThisPresentMoment

Distinguished member
Joined
May 30, 2018
Messages
123
Reason
Lost a loved one
Diagnosis
12/2017
Country
US
State
MN
Make sure you get your power wheelchair before you sign up for hospice. I would also call ALS to see if they can provide an adjustable hospital bed and a power lift. I would recommend to get any equipment you will need first.
 

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,297
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
I agree with the benefits for sure. We got a bath aide three times a week, meds delivered, some equipment and 24/7 nurse access. We also got music, message, and spiritual therapies and assistance. Trilogy was just fine with hospice.seeing as we were spending about 2k a month on care while I worked, it was wonderful yo have some actual Medicare covered services and help.
 
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