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tripete

Very helpful member
Joined
Dec 5, 2014
Messages
1,002
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
Two weeks ago I emailed and asked my ALS nurse to call me. When she did I told her that my headaches had returned and that doing even the smallest things left me out of breath and exhausted. I had been to the clinic two weeks prior to our phone call.

She recommended that we once again have my BiPap setting changed to try and help with the headaches and so we did - it has helped some. She also recommended that I set up and begin Hospice care.

As many of you may remember I do not take any medications and only use my BiPap at night. I do not use it during the day as I have been lead to believe it will extend my existence. I am fortunate in that my "version" of ALS was respiratory onset, so I still have use of my limbs and voice. My hope is that I pass before loosing these, though each day is making it look less likely as my hands and legs are rapidly failing.

None the less I was surprised to hear her suggest Hospice care at this point. Yes my FVC, MIP, MEP are all what they called critical, but I still get up and function each day. I make our meals, I work on remodeling our house, and try to plan vacations, etc...

I am wondering what Hospice can do for me? I will take morphine at the end but would not take it now as I want my head to be clear. So what can they do and should I take her advice?
 
The human body always surprises me. Sometimes it is so frail. But sometimes, our bodies adjust and we can do amazing things, like live much longer than our doctors say we "should" according to the textbooks.

If you're still going strong, keep going. You're in charge of your healthcare decisions.
 
I am sorry this has come up. A good hospice would offer support and develop a relationship with you and your family. Yes it is often medication and equipment but it may be easier when the time comes to have them already on board. Other family members resisted getting hospice for my mother. She died while we were literally waiting for hospice to make a first visit. She declined suddenly at the end. It would have been easier with earlier hospice. Having said this we did ok and it was more logistical than anything else. How much support does your wife have?
 
I just started hospice care last week. My primary care doctor suggested it because she felt that she was not as up to date on the medications and equipment that I need to function now. I started having panic attacks and though I am on medication, it is no longer working/enough. I know that you are not using medication.

I don't know how long I'll be able to cope with this whole process, because I am losing strength everywhere. I don't want to be carried on a machine to get in and out of bed and on and off the toilet. But, that seems to be where I'm headed. I am filled with despair! I was able to ride above it all for a long time, but I think that the reality of it all has finally struck me! What a sad disease this is.
Audrey
 
Pete, Hospice and palliative care are designed to provide comfort. You decide what makes life comfortable for you. It is always best to get things on board early but not necessarily emotionally easy.
 
Pete, I advise everyone to kick the tires. Inviting a medical presence into your home isn't buying a latte, as you know. Ask the recommended hospice (or more than one, if your area has options) to come out and explain what their approach to your current/future situation would be (Medicare will pay for this.) Ask tough questions; as with any other transaction, the response/tone/attitude will tell you a lot. If you feel warm and fuzzy, then go ahead; if not, don't. We didn't use hospice but others here have found value in it. Larry did have all the morphine he wanted at the end, administered by me, prescribed by his PCP.

The recommendation by the nurse can rest on everything from logistics to habit to personal preference. It is not absolute, binding or necessarily appropriate. It's just something she said. Regardless of what you decide hospice-wise, let me know if/how I can help with greater comfort for your BiPAP settings, e.g. if you want to PM me your settings/data I can suggest tweaks.

Best,
Laurie
 
Hi Audrey, You sound so full of despair it saddens me. I'm sorry this is happening to you. My brother was officially diagnosed with ALS in December. Your right. It's a horrible disease. Please just know that there are many of us praying for you and thinking of you. I'm sending you a hug. Jamie
 
I totally agree that you should get every hospice service to come to you and explain every detail of their services.

Do this now. If you had a sudden decline and you did now know anything about the differences in what is available in your area, you would be in crisis.

You may find that one of the services can actually offer you something that would help right now, and be on track to work with you in the way you want things to happen (not that we want any of it to happen). Developing that relationship early I think is a real key to having things happen the way you want when the end does come. But hospice does not mean end stage is here.
 
I just started hospice care last week. My primary care doctor suggested it because she felt that she was not as up to date on the medications and equipment that I need to function now. I started having panic attacks and though I am on medication, it is no longer working/enough. I know that you are not using medication.

I don't know how long I'll be able to cope with this whole process, because I am losing strength everywhere. I don't want to be carried on a machine to get in and out of bed and on and off the toilet. But, that seems to be where I'm headed. I am filled with despair! I was able to ride above it all for a long time, but I think that the reality of it all has finally struck me! What a sad disease this is.
Audrey

Audrey,
You're in my prayers today. My prayer group will be praying for you. Did your doctor prescribe Xanax for panic attacks. I find that dissolving one under my tongue works more quickly. I had panic disorder long before I had ALS. I'm at a point where I had a major decline this past month. It hit my torso area. I was still walking 1/2 mile a day when it hit. Now I find laying in bed on a heating pad feels best. This is terrible. I'll pray and be here for you.
 
Two weeks ago I emailed and asked my ALS nurse to call me. When she did I told her that my headaches had returned and that doing even the smallest things left me out of breath and exhausted. I had been to the clinic two weeks prior to our phone call.

She recommended that we once again have my BiPap setting changed to try and help with the headaches and so we did - it has helped some. She also recommended that I set up and begin Hospice care.

As many of you may remember I do not take any medications and only use my BiPap at night. I do not use it during the day as I have been lead to believe it will extend my existence. I am fortunate in that my "version" of ALS was respiratory onset, so I still have use of my limbs and voice. My hope is that I pass before loosing these, though each day is making it look less likely as my hands and legs are rapidly failing.

None the less I was surprised to hear her suggest Hospice care at this point. Yes my FVC, MIP, MEP are all what they called critical, but I still get up and function each day. I make our meals, I work on remodeling our house, and try to plan vacations, etc...

I am wondering what Hospice can do for me? I will take morphine at the end but would not take it now as I want my head to be clear. So what can they do and should I take her advice?

I would at least interview them, see what they have to offer. Weigh the pros and cons as it relates to both you and your CALS.
 
I really really really hate this disease.

My heart goes out to you Peter, as you make these decisions. I know your wife's welfare and comfort is your number one priority. Maybe having hospice helping will relieve some stress and worry for her?

All the best.
 
Pete, It may help your wife to have met the nurses and have a plan in place. Hugs, I know it is hard. Steph
 
Thank you. I had not told my wife what the nurse recommended until yesterday. She does not like to see my doctors or nurses because they offer no hope just and awful reminder of the fatality of the disease. I am thinking I will wait a little longer until I am more "ready" to believe the end is closer. Like I said I can do everything for myself just painfully and I do not want meds until the very end.

I have moments of weakness where the constant pain and worry for my wife and kids becomes too much. I need to remind myself at those times that my purpose is not to serve myself but those I love, and that what is happening to me is what is suppose to be happening. I am not a victim of this disease, I have never been a victim of anything good or bad. I have way more than I have ever deserved.
 
One of the things that has happened for Julien and I is we have formed a vrry close bond. Steve had been a stay at home dad and with Juliens anxiety and autism being so difficult to deal with. They were very,very close. The counseling and working together thru this disease to help Steve have turned us into a great team. That is a gift this disease gave our family, I hope your family pulls closer together also.
 
Hey Pete, thanks for posting. I also do not take any meds and see the decline daily so your journey is much appreciated by me. Sending good energy your way and also to you Audrey. Love ya both chally
 
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