my dad is near death - advice needed, please.

[Emily79]

Hello everyone,
I just joined alsforums in the hope of getting some advice and comfort during this very difficult time. My dad was diagnosed with ALS in September of 2004. Over the past few weeks he has gotten a lot worse. He has stopped eating; can barely drink; and now cannot swallow pills. (He does not have a PEG tube and decided long ago he did not want that, nor does he want any kind of artificial life support). He has not been able to drink any water for the past two days...

He is on hospice and they have been telling us to try and give him his meds in a paste under his tongue. However, this is not working - he just spits it up. My mom called hospice this morning, to let them know we can't get any pain meds in him, and that he is in a lot of pain. Hopefully, they will call back soon and perhaps there is another option (like a patch of some sort?) Hospice was resistent to this idea a few days ago because they want to keep him on methadone for the pain (and that med does not come in a patch form).

My poor dad is so uncomfortable, and in so much pain and he keeps telling us that he wants this all to end. I can't stand to see him suffering like this.

Thanks for listening. We are all wrecks right now. I would love any advice from people who have gone through this before. This is so hard.

Emily

[Icanmanz]

Hi Emily, welcome to the board, wish you didn't have to be here. You did the right thing by joining, this forum is very helpful. It consists of members with big hearts, and we are always on our toes to help each other. May God bless you and your dad. I just lost my 38 yr old son to Als on June 3rd, 2007, so I know the pain you are enduring right now. May God take it into His Hands. I am saddened by the fact that your dad chose not to get a peg. I am sorry I would not know what to tell you. My son got his peg shortly after dx, it was a hard decision for him, but he chose to do it anyway. They are very helpful, especially at the end. I only hope that your dad goes in peace, and not suffer a long time. How old is your dad? Keep us updated dear, and we will keep your dad in our prayers. May God bless you and your dad.

Irma

[Jeannie]

Dear Emily,
I hope that hospice gets back to you soon and are able to give your dad the pain meds that he is in need of. I am so sorry you are going through this. If you don't hear from them soon call and tell them again how uncomfortable your dad is. I am praying for you and your dad.
God Bless
Jeannie

[califsand]

Hi Emily,

I am SO sorry to hear that your father is in so much pain! There are other options besides pill forms of pain medication. Yes, there is the patch for some meds but most pain meds coming in a liquid injectible form. I am not sure why the nurses haven't discussed having one of these machines hooked up, it can be set up like an IV or they can teach you, or come themselves, to administer injections themselves.

When a person stops drinking water and eating, their bodies die fairly quickly and it is not a comfortable experience. Many people choose to stop eating and drinking when they are tired, as your father seems to be. Hospice's job is to manage the pain and create a sense of comfort for the patient during this time. Your father should be heavily medicated or under sedation so he can let go peacefully and I encourage you to advocate for this. Also they should include medication to treat the anxiety of the situation. My father currently is on morphine as well as valium, to control muscle spasms, anxiety and pain. On bad days he gets those on a schedule and though he has a g-tube, on days where he is nauseated, they have to give it by injection. My father is terrified of needles but on bad days he does NOT care. The nurses should work on this with you and if your nurse doesn't seem receptive, call the hospice social worker of supervisor. They are all on call! Your father deserves to have dignity and peace, both things which Hospice stand for! I am sure that they would rather see his care managed by family than see him admitted to the hospital so his pain can be managed there.

With my father living in Hospice I have discussed this exact scenario with them in detail, more than once, and know the plan that they have in place for him when he gets to the point your father is at. It is not far away at this point... please discuss IV pain management with them, it would ease these symptoms and allow your father and your family some peace right now to know he was not in pain.

Big hugs to you and your family during this hard time. Please keep us posted.

Sandy

[Al]

Hello Emily. I am sorry you had to join at such a difficult time. I have no idea what information Hospice has given you but this link may help.
AL.

http://www.hospicenet.org/html/preparing_for.html

[jimercat]

Emily,

I hope you are able to convey to Hospice the level of pain and anxiety your father is going through!!!

There is no reason whatsoever that your father should be suffering like this. This is the 21st century! There have long been meds to help make people comfortable at such times. Like Sandy mentioned, they are available by IV or injection. After all your father has already gone through, he deserves better treatment so he may at least spend his days relatively free of pain with some semblance of comfort.

I'm very sorry you and your family are having to go through this.

[CindyM]

Hello Emily - you are a great daughter for helping your Dad through this! I hope you get some better answers from Hospice tomorrow. Cordially, Cindy

[brendapals]

Hello Emily,
I'm also glad you found us and I am sorry you are having to go thru all of this. My prayer for you is that your dad is pain free. From my days working in long term care, we often used a pain medicine that was liquid form and dissolved on our patients' tongue. Do like the others said and call Hospice 100 times if you have to!
My blessings to you and your family,
brenda

[beaner1]

Hi Emily,
My husband just passed away, so I know what you are going through - my prayers are with you!

The palliative care docs we had put my husband on a morphine (CADD pump) pump for pain - it can be self-administered or set to give a continous dose - there is absolutely no reason for your Dad to suffer! Demand that they do this or something similar - he shouldn't have to suffer so, and you shouldn't have to witness it! You must feel so helpless, and must be suffering too seeing this. Yell, scream, cry, whatever you have to do because there is no need for this to happen.

Good luck, honey - I wish you peace.
Beaner

[Emily79]

Thanks everyone for responding.
Well, we heard back from hospice and they told us to give him his pain meds (methadone) and anti-anxiety pills (ativan) rectally... My mom and one of his caregivers did this, and thankfully, it has worked. My dad has been able to rest more peacefully, and has actually fallen asleep. (This is much better than last night, when he was up in a panic every 15 minutes). Dad told us that he feels like he is at peace, and that he is ready to go. (He is 59 years old...)

Still... I really feel like hospice should have more to offer him at this point... Like IV drugs, as some have mentioned. Also, we had always assumed that when the time comes, and death is really near, that someone from hospice would come out here to help us... but apparently we were wrong. Hospice told us that they only come out after he passes. I don't know. His supply of pain meds is quickly running out, so we will have to give them another call in the morning. If he makes it through the night... :(

I will keep everyone updated. Thank you for your prayers and support.

Emily

[jimercat]

Emily,

I don't know what company y'all retained, but I would certainly fire them if you don't get satisfaction! That may be difficult at this time, so you may have to demand they do their proper job.

The link AL provided explains the roll for Hospice. That is a load of bull about only coming out after he passes!!! There should be a whole care team helping right NOW! Hospice is for those in their last days to make them as comfortable as they can.

"Hospice [care] = Support and care for persons in the last phase of an incurable disease so that they may live as fully and comfortably as possible.

Hospice [care]:

* recognizes that the dying process is a part of the normal process of living and focuses on enhancing the quality of remaining life.
* affirms life and neither hastens nor postpones death.
* exists in the hope and belief that though appropriate care, and the promotion of a caring community sensitive to their needs, that individuals and their families may be free to attain a degree of satisfaction in preparation for death.
* recognizes that human growth and development can be a lifelong process.
* seeks to preserve and promote the inherent potential for growth within individuals and families during the last phase of life.
* offers palliative care for all individuals and their families without regard to age, gender nationality, race, creed, sexual orientation, disability, diagnosis, availability of a primary care giver, or ability to pay.

Hospice programs provide state-of-the-art palliative care and supportive services to individuals at the end of their lives, their family members and significant others, 24 hours a day, seven days a week, in both the home and facility-based settings. Physical, social, spiritual and emotional care are provided by a clinically-directed interdisciplinary team consisting of patients and their families, professionals and volunteers during the:

1. Last stages of an illness;
2. Dying process; and
3. Bereavement period.

Extracted from: Hospice Standards of Practice, National Hospice and Palliative Care Organization, 2000.



I hope you can resolve this and let us know what happens. This is not RIGHT!!!

[Al]

I have never heard of them coming after either. Something's wrong here.
AL.

[califsand]

I know that Hospice services vary by area but I am blown away by what they told you! They should have been sending someone by daily for some time now it sounds like and I'm blown away that they have left your father and your family almost on your own with things! The hospital is always an option, although it sounds like your father would rather be at home.

My father also is 59... ALS strikes people too young!! I'm sorry that you are going through this without the support you all need. It shouldn't have to be this horrible, even though ALS is horrible no matter what level of care is provided. Your father and your family have rights and if it wasn't the social worker that told you they don't come out until later, perhaps you can contact them directly tomorrow and plea for more help. It's bad enough that your father is at this point and you all have to witness it and it's an atrocity that he is in the level of pain he is in!! :(

[Icanmanz]

Emily, I would call Hospice asap if I were you. I cannot believe that these people (hospice) gave you these instructions and left. When my son passed Hospice stayed with us to the end. They helped us with a lot of things, that we didn't know how to deal with. It is bad enough that your dad is near death, how in the world does hospice expect for you to follow all instructions, when you are going through so much? I remember when my son was near death, I was walking around like a zombie. I was going through so much, that at times I felt like I was going to lose my mind. How dare these people? I'd get on that phone this very minute. May God be with you and your dad Emily.

Irma

[sharona]

Hi Emily,
I have had 2 bad experiences with hospice The first was when my son was dying with cancer .The day before he died we went to the doc & he said he could stay in the hosp & they would keep him comfortable that's all that could be done,he wanted to go home we had promised him he could die at home that's what he wanted.The doc told us to get hospice,so we called & she came out. at that time all we wanted was a wheelchair & portapotty because he was to weak to walk to the bathroom &also we wanted liquid pain meds .Well the first thing she said was she didn't think his ins would cover these things .He had blue cross blue shield one of the best pipe fitters union.Well his girlfriend crushed his oxycontin & gave it to him which you aren't suppose to do but the nurse said it wouldn't hurt him give him as much as he needed.It sounded like its was ok to overdose him to die...........Well I got on the phone to the cancer center & had them get his doc to prescribe liquid .The nurse left to go make some calls & to figure out what to do. My son died the next day . The 2nd time was my best friends mom she was in a nursing home & suffered a brain hemorrhage & was in a coma ,she was having seizures & they would not give her anything to stop them because that would be extening her life. My friend never saw hospice come there for the few day's that she lived. So I'm not very happy with hospice in this area where we live .I know others that have been very happy with them,Keep calling & do not stop until you get what your Dad deserves.God Bless.
Sharon

[SMillheiser]

Emily,

Maybe we can help. Go to our website, ALSGuardianAngels.com. Click on "What We Offer". You'll see a grant under home healthcare. We have contracted with Mary Beth Geiss who is nurse with 22 years experience in caring for ALS patients. She is now one of the foremost experts in this area and recognized as an authority. I'm sure she can find ways to ease your father's pain. We have a link to her website. Check it out.

If you'd like to consider taking advantage of the many services she offers, let me know by return email: Info@ALSGuardianAngels.com

Stu 949-488-9894

[Emily79]

Just wanted to let everyone know the sad news. My father passed away this morning at 5:30 AM. We were able to keep him comfortable with the pain meds (thank God) and he was peaceful during his last days... For what it's worth, hospice apologized for their lack of action over the weekend. Apparently, they didn't understand that his death was so close (although my mom did communicate this to them...) I guess the nurse who was out here last Wednesday had it in her mind that he would still be living for several more weeks... so she did not alert other members of the hospice team, and generally did not take our pleas seriously. She felt horrible when she learned that he died (as well she should)

A (different) nurse from hospice did come out here this morning and prepped dad's body and sat with us until the funeral home came. The social worker came as well. Both women were very caring and did a great job. It was SO hard when they took his body away... I miss my dad so much already, I can hardly stand it. I keep passing his empty wheelchair and for a second I think he's still in there. I feel lost because we were so consumed with taking care of him... and now he's gone.

We are struggling the most with how to explain death to my 3 year old son (Travis). Travis and I have lived with my parents since he was a tiny infant. He looked at my dad like a father. We explained to him that grandpa died; that his muscles and his body finally stopped working. And that his heart and his voice and his spirit and love for people went up to heaven. Well obviously that is a hard concept to understand... He keeps asking questions like: why can't his grandpa can't come back? Where did his body go? Where is heaven? What is he doing in heaven? Can we go to heaven? Why can't we go to heaven? and so on and so on... I feel like I am going crazy having to answer these questions over and over again. *sigh* :cry:

Thanks everyone for listening.

[hopingforthebest]

Dearest Emily

Getting off the forum now and on my knees for your sweet Dad and you all!

Patty

[Al]

Emily, I am so sorry for your dad's passing. My condolences to you and your family.
AL.

[jimercat]

I'm very sorry Emiliy!

Believe me, your child will not be able to grasp this. It's OK. Just tell him your Dad has angel wings. Don't try to get to complicated.

It's worse on you than your son. Children can't understand life like we do. Their brains are not developed enough to comprehend.

Please don't stress yourself out about your son. He will go on to find a new focus. Kids are so wonderful! He will start a new obsession tomorrow unless you keep reminding him.

My son's "Memaw' died when he was 3. We explained to him that she was in heaven, she was now an angel. He wanted to know if we would see her again. His (paraphrased) response was that that was great because Brooksea (our deceased collie) and other dogs that had gone to heaven would be there with her!

As for you, please take care and love your family as much as you can.

You've done all you can and you are a great daughter. Your Father knows that.

[msde302]

I wish you peace Emily. I would not dare to assume to know what exactly you're going through. But my mom died last month at 59, after having stopped eating and drinking. On her final night she was unable to take her pain meds. We too had issues with hospice who didn't even come the morning my mom died.

It's been just over one month for me and it seems still like I'm in a bit of a fog. But being with your dad during this time was such a blessing for both of you. Both of you. How blessed and lucky you both were to know one another so intimately. It's unfair and sad, that's for sure. But the heartache has to, I believe, be overcome by our memories of love and laughter with our parents.

I've found myself laying in her hospital bed, crying as I talk to her about what I wish I could have done, and mistakes I've made. But I've also been able to dream bigger than I thought I had a right to knowing that she's with me still, kicking me in the pants and telling me to get on with being the young woman she worked so hard to raise.

[Jeannie]

Dear Emily,
Words can not express how sad my heart is for you and your family. Keep it simple with your son. They don't understand, just make it as simple for him as possible and not scary His heart with heal and he will help you heal. Know that your father lives on in your son.
God bless you and your family,
In friendship
Jeannie

[kelly]

Emily,
May you find comfort with friends and family in days to come. I am so sorry for your loss. Fondly, KR

[Icanmanz]

Emily, dear friend, my heart goes out to you! Let's just make like I have my arms around you for quite a while. I wish I could just hold you, and share my still existing pain with you. I read your post very, very carefully, and my heart ached for you, my tears are flowing. Sweetheart, don't be sad, He took him home. He told your dear dad enough is enough. When my son was expiring I felt my heart breaking, it actually felt like I had the worst case of infection in my heart. It was painful, I could not stand it. You actually feel your heart shrinking in pain, the worst ever!

Your sweet dad is with our Father, his Father. He is in a peaceful place free of pain. Praise be to God! The emptiness that we feel after they are gone is unbearable. My son passed at home too, and to this day I am sleeping in the same room where he passed. I feel his presence as long as I am in that room, my favorite room now!!! Emily, our loved ones are watching over us now. They may be gone, but not forgotten. God bless you, and your family, and your dear Dad may he rest in peace. Bless you, friend! Hugs to you, and lots of prayers!

Irma

[brendapals]

Emily,
My sympathy to you and your family. May you find comfort with God's peace in the days, weeks, months to come.
In faith,
brenda

[leegardens]

Emily,
I am so sorry for your loss.
Lee

[gimpydad'slady]

Emily, my heart goes out to you. May God be with you and your family during this time of need. God Bless.

[califsand]

Oh Emily, I'm very sorry :(

I'm happy that your father is not in pain or suffering anymore, I know that this was a hard week for him and for all of you seeing him go through it. May his spirit find peace and freedom from all bad things. May you and your family find comfort in knowing you were there with him until the end, loving him and caring for him with all of your hearts. It isn't easy what you've been through and all of the feelings are overwhelming I know. Allow yourself the luxury to grieve while you think of the wonderful times with your father.

Regarding your son there are actually many online resources, books and also I Hospice counselors that specialize in helping children to understand when a loved one has departed. He is at a tough age where everything is "why, why why?" and if you feel a need to explain it to him and help him grasp things the best a 3 year old can, there are many resources to help you do that. Others have suggested that it may be best to keep it simple with him and that could be a good option too. I think it depends how much you can handle right now, I don't know if I would be able to handle trying to explain to someone that young myself... maybe making a picture book of grampa would help? Whatever you decide to do it will be the right thing, there are no "right" answers here, only different methods of coping.

My heart is with you tonight,

Sandy

[CindyM]

I am sorry for your loss, Emily. We will be here for you. Write anytime and tell us how you feel. Cindy

[Poco]

Please go over thier head but don't accept what hospice says as final. I had a horrible experience with them as my posts will say, but I would call your physician who approved hospice and tell him what is going on. When I told Dick's physician after he passed what happened he was horrified and was going to get to the bottom of it. Also the emergency physician was very upset and immediately made Dick comfortable and she said he will never suffer on her watch, and he didn't.I was too distraught to handle it at the time but thank God the neighbors were on it. You have options and you need to assert yourself because there is no changing anything after the fact and I don't want you to have any regrets to compound your pain that you wish you would have handled it differently. Please make those phone calls and be strong. I really share your pain
Phyl

[JACKIEMAX]

i just read your posts and the answers from our precious forum friends. this is a wonderful forum and i come here more often now that i am about to lose my husband of less than 8 years to als. he had a peg tube put in months before he ever needed it just for this kind of thing. now he takes ensure through it, plus some meds. he is on a stooland ativan also plus occasionally some morphine. we had to fire our first hospice group for letting him become impacted and he ended up in the ER. my husband would have soooo many more problems without the peg tube. hope all works out for you.

jackiemax

[planningguy]

Emily, I am sorry for your loss, and hope the you family feels the love and support it needs during this difficult time.

I recently lost my mother to a struggle with cancer, and pain management was a constant issue. I did learn a bit about hospice through the process. Our experience with hospice was positive, and it has only been after the fact and comparing notes with others that I have been able to understand a little why.

For us the biggest difference was that my mother's hospice case manager and day nurse was ABNS certified in hospice and palliative care. I had assumed that this was the norm, but have since learned that the certification is still relatively new, and she was one of a handful in mom's state that had earned it.

For us the certification not only meant a better understanding of pain management, but also a commitment to the idea of hospice and palliative care. She quickly conferred with my mother's physician, helped balance her pain meds, and transferred her from push button to continuous drip for her IV meds. Her comment was it was contrary to the whole idea of comfort care to force someone who is dying the indignity and effort of having to push a button every half hour. All of the hopsice nurses gave us their cell phone numbers, and the case manager told us we could call her any time day or night.

Maybe we were just lucky in getting such a dedicated medical professional, but hearing the horror stories talk of trying to help loved ones swallow crushed pills after being told by hospice that there was no better option, I can't help but wonder if a lack of training and patient advocacy plays in.

Robert

[jimercat]

Robert,

Thank you for educating us. That is valuable info! So much to learn and remember...