Hubby Update, Nearing the End I Fear

I'm sitting here on my bed, next to my husband as he breathes with a deep gurgle in and out. He had a bad "health episode" last Friday evening and has not been the same since. He now only sleeps, only to wake to pee and take a few sips of water, and then nods back to sleep again. And this waking does not happen often.

Friday evening at 5:30 he woke from a nap stating he "doesn't feel good". An hour or so after that he complained of severe chest discomfort and that he couldn't catch his breath, and he felt like there was phlegm in his throat but he didn't have the strength to cough it out. That evening was horrible. We dosed with max amounts of pain meds and anti anxiety meds, the hospice nurse came out and I was on the phone with hospice two other times. I honestly didn't think he would make it through the night. But he did. And now all he does is sleep, and I'm afraid to leave his side. His sister came yesterday to visit because I told her he wasn't looking too good. He hasn't eaten since Fri morning, and only sips little bits of water and soda.

Up until several weeks ago, my husband was obviously ill, but stable. He could fend for himself while I was at work, took lots of naps but could get up to use the bathroom and get something to eat.

Then, he had a bad backwards fall. Knocked the breath out of him and he got a huge knot on the back of his head. I was at home so I helped him up and into bed and iced the head. Hospice came the next morning and put him on 24 hour care to monitor the pain level and pain meds. The help was really welcome, as I had "hit the wall" so to speak, as far as being a caretaker. I was put on blood pressure medicine for the first time ever as my anxiety and general health was not so good myself. Bad that hubby had to fall, but good I got extra help. I moved into the spare bedroom and got fantastic sleep for the 8 days they were here. The first time in years I had been able to sleep through out the night.

The hospice got his meds and pain stabilized, and so their job was done after eight days. But it was very clear that my husband's mental acuity and physical stable ness had not returned. I could no longer leave him at home alone.

Last Monday I had hospice here through midnight. On Tuesday I stayed home from work to arrange for caretaking services. On Wed the new caretaker came and I went to work, comfortable with our "new reality".

Then came Friday night and his condition deteriorated more. I don't know what to expect or how long he can remain in this condition. I'm planning on taking tomorrow off and talking to my husband's head hospice nurse to find out more and what their recommendations are.

It's all so confusing and upsetting.

My hubby just woke and looked at me. He said "I feel better, I really do!" I smiled and answered thats great sweetie, I'm glad you feel better! Then he drifted off to sleep again. So sad...

Although I haven't written on this forum for months, I have been reading and following almost daily. It's a wonderful place to feel like you are not alone while dealing with this horrible disease. May peace be with you and your households. Pam

Pam, what you are going through is so difficult. Perhaps it would help to post on the Caregivers thread for support, though you will get it here, too.

It does sound like your hubby is near the end. Has hospice explained how this usually goes? Sometimes, there is a precipitating event, like your hubby's fall. In any case, the person starts sleeping a lot. The "gurgling" is the "death rattle" which indicates that death is near. The patient often rallies before slipping into a coma and then passing on. Once in the coma stage, death usually happens quickly--24 to 72 hours. Call in hospice to be there 24/7. They will alert you when the end is very near. Take off work if you want to be there. I'm sorry if this is too much information, but I find I have less anxiety (about anything) if I have some idea of what will probably happen.)

Big hugs,
Connie

More liquid morphine will put an end to their suffering...

CreativeSoul,
So so sorry to hear. It is such a very hard time and takes such strength to help your loved one through this journey. It is not for the faint of heart and my heart goes out to you as you as you help him and comfort him.
I am thinking of you both and am lighting candles for comfort. We are all here for support for you, feel free to write whatever you need to.
I know there are no words to comfort you through this...remember to breath and tell him all you need to tell him.
Will be thinking of you tonight.
Angie1953

My prayers are with you and your loved one this night.. Sandia

Pam,

Thinking of you this morning and praying you are in a peaceful place....

Marie

CS. Thank goodness you are on 24 hour care again...it is too much for just one person!  Thinking of you through the night tonight.  Carol

We had hospice and quite frankly they weren't much help...I was lucky that when he started hurting so bad he couldn't stand up anymore, I had already made an appointment with his Doc, who put him in the hospital which he agreed to.

Doc told me that even though I would like to take him home, it is unlikely that I could do what needed to be done at home to control the exteme pain. (Thanks Doc, for being honest.)

Hubby and Doc had made a deal that Doc would make sure he wasn't in extreme pain. Glad we did what we did. But, there was also no such thing as 24 hour hospice care here, they came in 2x a week for less than an hour, but I was supposed to call when he was slipping away and they would "set with me." I think not!!


So so sorry you are going through this. Do you have the option to have him hospitalized, even with hospice. The hospital may not be able to make him better...or treat him...but can help handle the pain better. All we needed to have him hospitalized was the Doc's say so. I had to go through hospice worker, but was insistent we needed Dr appt. Doc took it from there.

Thinking of you a lot CreativeSoul. Speak up if you want this handled in the hospital. Seems more humane to me at the point they are in so much pain. (All the hospital bills for the 3 days were paid by Hospice or Medicare, but they did not do lifesaving efforts, just let him pass away quietly.)Don't know if this is helpful, and don't want to offend you in any way at such a hard and emotional time. Just sharing info. Thinking of you both. I really do know that surreal feeling.
Angie1953

CreativeSoul,

I have your Husband, you and your family in my prayers. I was given the instructions from Hospice to help my brother die. They and we were caught by surprise as to LJ's going down so quickly. He was home less than 24 hours.I was on the phone several times to get them back here or give me more instructions for his failing condition.

My heart and thoughts are with you all. I do wish I had the time you have to spend with him. I went to bed the night before thinking about the plans we had made for the next day. Hospice give him some drops to help clear his gurgling sound from his breathing. He responded to her and coughed as she asked.

Had I known the end was so near, I would have said so much more, hugged him so much more, filled his head with so many good thoughts and peace of the good he had done in his life. I struggle still today. I have so needed the Hospice Grief classes but the 28th is close. I look forward to them.

I have had to be put on anti-depressants now. And I have counseling to begin mid June. Such a hard situation to deal with. But one, knowing me better than anyone, I know I need help with. I don't like to wish life away but I do look forward to help and more time behind my grieving.

Love and Many Prayers,
Alisa

Just received this via email, and wanted to post here, via her request.

"Tried to POST on Hubby Update...nearing end.
Near end of post, I could not correct nor type anymore. I have hep issues, horrible brain fog, ammonia, vasculitis,....will do post but wanted to maybe give some love to her....it is a hard journey. I just spent an hr. trying to do this 3x. can u help?


Can u post for me?


I'm new here but your post caught my attention-wanted to post my experience with passing.
I have lost 5 friends to this horrible virus and and am now fighting my own dragon and the demons & may be loosing but that is another day & story.

When ea. loved one was passing, I wanted to try to help them have as peaceful journey as possible though everyone will have their own experience.

I will tell you of 1 though it was almost the same with all. After MY initial mourning/crying, I surrounded the bed with pictures of friends/family, angelic music that only he loved. I always spoke softly about it being ok to go on. Kept telling him things were fine, listed issues that only annoyed him; said they would be handled it in a way that I knew would be ok (some say people do not pass if issues). I spoke of times when we laughed and enjoyed, always soft and always saying that when 'you' are ready, it's ok to go....

I got into bed and gently held as I spoke. (1x that he tried to get out of bed to 'go'). He could not speak (grand mal seizure) a week before when a friend came the room got warm, we saw this shimmering and when he woke for an hr., he spoke of happy things. Then he slept again. . .

My Blessings, Love & the upmost Peace go to you both.
ReneeTIna"

what a beautiful post.. thanks for sharing..

Sandia

Thank you for that beautiful post.

I continue to keep you and your husband in my prayers. I can't imagine dealing with a hospice like that! I am shocked and saddened by your experience! My mom's hospice staff couldn't have been any better; they were there everyday to check her and called back within minutes and offered to come the few times I called in the middle of the night panicking, and if I thought she seemed like she was struggling or in pain, they gave me the verbal OK on increasing the liquid Morphine. When she was being discharged from the hospital, the social worker went over the different hospices in our area and I specifically chose my mom's because the doctor in charge was known to be very compassionate and didn't believe in letting people suffer. With having brain/bone cancer, she was in a lot of pain and in the hospital he would only give her hydrocodone! That's it! So I wanted to make sure she didn't suffer, and when the hospice coordinator came they specifically asked her if she wanted to be more alert and possibly have a little pain, or if she wanted to rest and my mom said she just wanted to sleep. I wish I could send our wonderful hospice nurses to you....they even arranged a priest to come at the last minute because ours was unavailable when I called and it was important for her to have Last Rites. I am just so sorry to hear your husband is having pain at this time. I know what a toll it takes to watch them suffer and feel helpless.

I really hope this arrangement now is better for you and he stays out of pain. The liquid Dilaudid was too thick for my mom but the morphine really helped her. I hope it helps your husband as well.

Prayers and thoughts to your family.

Hello fellow posters:

My husband passed this morning at 11:00 am. I am so glad he is out of pain and is at peace. This past week was extremely difficult, seeing him in so much pain. After taking years and years of pain medication for chronic pain, when it came to the end, the pain medications and anti-anxiety meds hardly even touched his pain and agitation. He had a bad case of what the nurses called "terminal agitation". The peaceful liver disease scenario of getting progressively sleepier until he fell into a coma just did not happen. This was hard to watch and I'm sure made it difficult for him. Sorry if I'm being too graphic, but not all passings are "textbook".

The minutes before his actual passing were peaceful, however, thank goodness. The nurses had finally got enough drugs into him that he had been resting peacefully for about an hour when his breathing became much more shallow, and then he passed. My daughter was on one side of him, and I on the other. We held his hands, told him that we loved him and that we would all be fine, he could go when he wanted.

I am emotionally and physically spent, not to mention numb. I am spending the night at my daughters house. I didn't want to be alone, and I wanted to see my grandchildren. But tomorrow I need to face the empty house. There is so much to do.