Feeling so insecure.

[Anastasia]

So now Ed needs so much care he has been in the care of staff at the hospice for a week and the feeling is terrible.
I dont know what to expect and am wondering if members who have stayed on here after losing their loved ones can help me.
I have spoken with the staff ,however they seem to me to be a little careful about what information they share or maybe each case is different and they themselves are nor sure what lies ahead immediately, let alone over the next little while.
They changed some of Eds medications and started a sucutaneous morphine dosage.
Does this mean ther is no turning back and he will drift away? I am not ready...would I ever be ready to lose contact with him,with his reponsiveness,with knowing he can still hear and understand me.
Hell this is terrible....the journey has been sad it is true and yes we all wish our loved one peace,however I am struggling and now my mind is saying no....not yet..its not time .
I must stop here.Anastasia.:sad:

 

[brooksea]

Anastasia, I'm very sorry and I have no answers for you. Some pALS have been on hospice for a long time, so I believe it does vary, as you indicated each is different.

Just wanted you to know I'm thinking of you and Ed. Hugs to you!

 

[notgivnup]

Anastasia. I am Praying and Hoping for Peace and Comfort for both of you. Everyone is different is all I hear them tell me also. My thoughts are with you. Much Love & BIG HUGSSSS

 

[Anastasia]

Than you for your caring comments...ther are no easy answers I know.....just searching is wat I'm doing I guess.

 

[Sequoia]

Hope more folks will read this and respond with their own experience. Maybe there is a low dose morphine that would help Ed but keep him with you longer? Talk to the hospice folks and see what they say. I know pals who have been on hospice a very long time so it does not mean necessarily the end is near. How is his breathing? Does he use bipap? Praying for you and Ed, for strength and courage and most of all love. Your job is to love him and make that love present for him. That is the best thing!

 

[Miss]

In my personal experience, you are never ready.

 

[susanf]

Praying for you.

 

[Jellycat]

Dear Anastasia,
It's hard for me to answer you because I don't really know enough, but I sense the going is tough and I'm sorry. If Ed is finding it rough, it will be just as hard on you. Is he comfortable? I am aware that hospice is very different from country to country. My pals had some respite stays in hospice which were very life giving and helpful and included medication changes....but we chose to do the last lap at home, with their help.

We used various pain relieving medications during her fight with als but only used subcutaneous morphine nearer the end. At that stage the hospice were at first not sure how to read the situation because it wasn't clear but when I asked they gave me a range of possibilities. When the hospice nurse first came with the subcutaneous morphine I asked a very blunt question in front of my pals. Would this be for the ease of her pain or simply to knock her out, send her to sleep. The nurse was completely shocked, but I asked because I knew my pals would want and need to know this. (and could not communicate the question) This was my pals type of question, not the nurse's comfort zone....so maybe you need to just ask what you need to know for yourself. And if the nurse seems reticent, what about asking to see the doctor or social worker there? And no, we're never ready to let them go...because we love them and don't want to part from them. That's only natural.

 

[10steps]

My husband just finished. his journey this evening. On the subcutaneous, he was aware, knew who people were but as he grew more uncomfortable struggling with breathing it became a higher hourly dose. At the end, he opened his eyes, looked at everyone, we all told him we love him and he could rest and he passed ina matter of minutes.

 

[Al]

So sorry for your loss 10steps.

AL.

 

[notgivnup]

10steps I am so sorry for the loss of your husband, I Pray for Peace and Comfort to surround you at this time, Love and Hugs

 

[cervus]

Anastasia. I'm so sorry you're going through this. As Miss said, you will never be ready for the end, no matter what the situation is. My husband was at home and we were administering morphine through his tube. He wasn't on high doses - not enough to keep him unconscious. He did sleep for 5 days prior to his passing but was aware also, even through closed eyes. He was on morphine to help with his breathing although he wasn't struggling - just needed some comfort. Small amounts of morphine do not suppress the respiratory system as much larger amounts will. Bob was having terrible full body spasms and the morphine helped with that. If your husband is struggling, then morphine is great. If he's not, then perhaps hospice can cut back a bit? Keep talking to your husband and hold his hand and say anything you want to say. He can hear you and I'm sure will appreciate it. Can he squeeze your hand to communicate? Or blink even through closed eyes? Take care. Sending you warmth thoughts and strength. Yasmin

 

[cervus]

Dear 10steps. I'm so sorry for your loss. My condolences and wishes of strength and peace to you and your family. Yasmin

 

[Ms. Pie]

10 steps, I pray that you receive peace of mind and heart. I'm so sorry for your loss.

 

[John1]

My deepest sympathy to you on the loss of your husband 10steps.

John