We all know our spouses are dying. My DH is now not eating or drinking, so it is only a matter of time. I wish I had known more of what could be expected. I suggest you get the booklet, "Gone From My Sight" to be somewhat prepared. My DH went from sleeping most of the time to being agitated. He paced for 11 hours last week - from the chair, to the sofa, to the toilet, to the bed - back and forth. Now I see that can be a part of the process. But, I was here by myself and had to constantly watch him because he was so weak he was in danger of falling. Believe me, I needed to have someone else to help me through this. It was way too much for one person and I have guilt about how I handled some that time. I know some of the other spouses who are now widowed can give more advice.
Oh, Fran.....you are in a horrible position right now! Here are my hugs. You have done NOTHING to feel guilty about! I wonder how many have gone through what you have had to. Some die peacefully in their sleep without any indication the end is near. Some have heart attacks and die at the hospital. Some die in the nursing home. I don't remember anyone being in the position you are in. You are asking for advice from those who are widows and widowers, and I hope they respond to your needs.
Actually, Mary I'm hoping others who have lost a spouse can make comments about what they wish they had known to help those of you who still face the dying process. thanks, Nikki and divvi...as of 4 PM yesterday Hank is resting comfortabley in bed with enough drugs to keep him comfortable. If he lasts much longer I wonder if he would like a shave?
Frand, I am there with you in spirit...I well remember the last two weeks of my husband's life...he did not eat or drink the last week and just got weaker and weaker until at last he died in his sleep...that was the first night in a long time that I slept without waking up and I knew before I walked into his room that he must have died or I wouln't have been able to rest. I hope the end for your guy is as uneventful.
When hospice comes let them give him a shave...he might look a bit better and that will help you.
Remember to take care of yourself....eat whatever sounds good, read a book, and just focus on the future and be happy with the knowledge that you have been a wonderful spouse and caregiver.
I am available if you need to talk.....my email address is printed in my information...drop me a line and I will give you my phone number...
Frand - my heart goes out to you at this time in your journey.
My DH is still alive and well but I do have experience as my father's primary caregiver in the end stages of his cancer. Each caregiver facing this has to make the decisions based on their own beliefs and emotions. My father was much like your husband at the end. He had stopped eating and drinking so the end was inevitible. But he kept getting agitated and flying out of the bed, even though he was unable to walk and I was holding him in the bathroom with the help of a very efficient but not particularly kind or talkative hospice nurse. He was talking and agitated and she said to me very quietly "he knows too much". She echoed something that I had felt for a couple of days that no one should have to face that level of agitation in their last days. I said, "I feel like I should have him sedated" and she said "I would".
And that was my decision, I insisted that they sedate him on Monday morning to the level that he was always comfortable and he died Tuesday night. We did nothing for him to disturb him, we did not bathe him or shave him and only bothered him to administer meds. He did briefly awaken twice in that time period, even while sedated but was calm and aware that I was with him.
In the last 12 hours, I couldn't keep at covers on him. He kicked them off everytime I covered him up. His limbs were cold and that bothered me but as I sat with him all day, I realized that was part of the process and the coldness moved up from his feet and hands as his body began to shut down. The end was very peaceful and I hope Hank experiences the same.
Those are my experiences and choices in the end and I have no regrets about them. Do not be so hard on yourself and do what you think is right and insist upon it if hospice resists.
I hope your hospice will send someone out to be with you in the final hours.
Frand My heart goes out to you. Mom went peacefully in her sleep. She was calm and I gave her meds to keep her sedated enough that she slept. She went a week before passing on, however she had a pacemaker and I think that artifically keeps a person alive longer. They don't shut them down. Sometimes I think that doesn't seem right. When everything else is gone the pacemaker keeps the heart beating until I think it is the oxygen level goes down. The meds were left up to me to administer. I am thankful I was able to keep her home because she always dreading going to a nursing home. I have no regrets over her care. lmohr
I don't think any of us were prepared for how quickly this would go from the decline to the dying. We are only giving comfort meds now (no more Aricept and Namenda!yeah) and Hank is in that peaceful place of being sedated. It takes a while for the meds to kick in and when he was doing all that pacing we were trying this and that - some of which had the opposite effect. The Hospice nurse just left. Now that he is not taking fluids, and definitely not foods it will only be a matter of time. The morphine and haldol are in liquid form, so all I do is keep his mouth moist. Thanks for the offer of talking on the phone,Sandi. We just have a cell, so the weekends are the only time I feel free to use it. I had ordered a land line, but have canceled it, since they wouldn't put it in until Wednesday when it probably wouldn't help. I'm glad I don't have to deal with a pacemaker as I think that is a whole other issue. It is interesting how they don't seem to have hot and cold right. It was 77 in our rig one day last week and Hank was cold. Now, he feels cold when I touch him but keeps throwing off the covers. I don't know that Kubler-Ross knew everything. Hank never did accept that he was dying. Even two days ago he wanted to know what he could do to get well. Now, I think it is too late for him to come to terms with his dying, which has a certain saddness to it. Thank you everyone..
One other thing - Hank may lose his ability to swallow even liquids. You'll need to notice that more is dribbling out of him mouth and less is being swallowed. You also should see it in his activity level (more restless/evidence of pain/agitation). You need to inform hospice of that and they will provide another method of medication administration. In our case, it was two subcutaneous ports, one in each thigh. One stick and only a catheter is left in. Then the medication is just given through the port.
Nikki, thank you for the link. I've copied it down to the place where I'm keeping all kinds of things that are just in case.
frand, I have nothing practical to offer, just my desire to support you in any way I can.
We haven't talked about this here, but I'm glad this thread exists and that there are people on it who have been where frand is now, and are able to share those things that only someone who has walked the walk can share. I want to thank all of the posters on this thread, not just for helping frand, but also for myself.
Catherine - Hank doesn't eat or drink at all as of today. The two comfort drugs are liquid. I have those swabs to keep his mouth freshened. I can't imagine breathing for days with my mouth wide open, but so far he is staying fairly moist. He seems to know it's me - at least when I ask him to give me a kiss he can get his lips together. OR - maybe he just likes kissing whoever is making the offer! They tried putting in a catheter, but the prostate is too enlarged. She had a small tube to insert to empty the bladder but it isn't meant to stay in. However, urine output is hardly anything now so none of this is a problem. Because it is possible to live several days, though that isn't what most do, I have to change his position every two hours. It really works to just have the alarm clock. When it goes off I know I have to do something! Then I just set it for what needs to be done next - at this point it goes off every two hours, of course.
When my mother passed away, she held on and on for several days. The hospice nurse told us that she was holding on for us because we wouldn't let her go. The nurse suggested that we take turns sitting with her and telling her we loved her and that it was ok for her to go. We each got a special good-bye. She seemed more at peace and passed within 12 hours.
Here is a handy tip I learned from the Hospice nurse. Hank from time to time wants to pull off those Depends. She suggested putting his regular shorts over them. That has worked! For some reason they just want to fiddle around. Yesterday he mostly got the regular shorts off but I looked later and he had pulled them back on.
I read The Tibetan Book of Living and Dying when my previous spouse was terminal. That culture is so much more comfortable with death that ours and I learned some things from that book. One was that upon death it is comforting to let the body lie undisturbed and just be at peace with the struggle being over. I have been in contact with OSHU and find they need me to notify Hospice whenever he dies since his brain has been donated to research. They would like it as quickly as is reasonable.
I am glad we made the donation because I can request a report of the results. There has always been some thought this might be Lewy Bodies and I would be curious to know...
Dear Fran: I lost my sweet love to AD 5 yrs ago. But the dying process can be so different for so many that no one could possibly tell you exactly about it. Reading the above posts, I have to tell you that my DH was eating the day before. He was aware enough, I was feeding him as he sat in a chair, to shake his head 'no' when I offered him meat & then ate cake when I offered that. He drank Ensure. Alto he had done a fair amount of pacing before, he'd stopped that some time ago and there was none of the aggitation mentioned. So you see, it can all be so different. He simply stopped breathing, there was no gasping (of course he was given oxygen) but he just peacefully slipped away. The nurses had told me it would only be a matter of a day or two but I did not believe them because he was still eating and had always rallied before. I thought he would again. So I wish I had believed them, I'd have not gone home, but I was there the next morning to feed him breakfast, but by then he didn't have any awareness.
Please my dear lady, do not feel guilt. Those of us who have done this have done our best, it is all but impossible for one person to do everything that is needed. We are, after all, only human. If he is otherwise comfortable, just continue to give your DH lots of hugs, loves and kisses, that's all he really wants and needs. I know how you feel at this moment, you have my cyber concerns and understanding and a promise that you will get thru this. You will never forget, you will always love him, and, in time, you will be OK--I promise.
Dear Frand, thank you for sharing this part of your journey. I have been amazed that you've been able to travel and manage so well. You have done a fantastic job! My prayers are for you both.
Frand, I wish there was something I could do to help you through this time. All I can do is pray the Hank will pass peacefully and be rid of this terrible illness. You are a very special lady and you are an inspiration to those of us who will follow where you have tread. Take care and God Bless.
Good Morning, cyber friends... For a person in the dying process, my DH looks good! Hard to believe I am saying that after thinking he was so thin and unsteady when he was still getting around. He is a very determined person and keeps trying to get out of bed, but doesn't have quite the energy to do it. I hope he doesn't want to make a world record for lasting in the dying process, but it looks as if he plans to stick around at least another day. I was able to sleep (well, snooze) next to him part of the night and hold his hands. He still has a strong grip and I'm sure he knows who I am even if he no longer talks.
frand, Thank you so much for sharing. I think I may be in your situation all too soon. I too, wished I knew more what to expect during the actual process and now you have made that possible. I am alone with my DH most of the time. Hospice nurse comes every 2 weeks and offers to be here more, which I may take her up on when she comes this week. A volunteer is coming today for a get acquainted visit. I am in a rural area, so it hard for anyone to "drop" by. I also want to thank those of you who have and will share their experience. I think of you so much frand. Know that I wish I could be there with you. All my love to you and all the other "brave?" souls who read and participate on this wonderful site..
This discusssion topic prompted today's (8/19/08- Tuesday) Blog - Thinking About the Journey's End. I invite you to read it and comment here. This is such a difficult subject, I have avoided writing about it - I thank frand for her courage in sharing her experience with us.
Maybe the reference of “Think carefully about being a caregiver, and if you don’t think you are cut out for it, DON’T DO IT.” would apply in instances of instability of the caregiver causing harm to the patient as in instances we have all read about with elderly couples ending the life of the suffering spouse and themselves. So sad for everyone.
Beautiful blog Joan. Enjoying today is my mantra. I can’t change what tomorrow will bring, all I CAN control is how I handle today. Fran I can't imagine how difficult this must be for your. Your courage amazes me. Beenthere, sandi, betty… all those who have lost their loved ones…My heart goes out to you. Thank you for sharing your knowledge, and helping us along in our journey~Nikki
This is a quiet moment in the afternoon. We had to increase the morphine dose so Hank could be quiet again. He is now to that part where he discontinues breathing from time to time. The "Gone from my Sight" booklet says they can actually stop for thirty to forty-five seconds before resuming again. That seems so hard to believe. He started moaning today when we turned him - it is possible he hurt his hip from one of his falls. I think this process is so much easier if your spouse feels comfortable with death. Three days ago Hank was wondering what he could do to get well. He obviously never got to the acceptance place. Perhaps someone with AD never can, since I know how he felt about death when he still had his mind. I'm guessing this can't go on too much longer. We got the sheets changed and he is clean and quiet - I so hope for his release though I know I will miss him the rest of my life. Friends are coming by soon and I will be happy to have them here. I contacted OHSU and know what to do for his brain to be donated to research. In three to six months they will contact me to let me know whether is was AD or Lewy Bodies, or whatever. Not that it matters, but I am curious... Thank you, Joan, for the blog. Bye for now.
Thank you, Frand. I had thought about asking the question what is it like to be with someone as they die, but I didn't know how it would be received, if it was too much for this site. You are helping so many of us be more at peace. Knowledge is the best defense againt fear.
I do feel your support - thank you. Tonight my friend Jennifer (she played the piano on the Lullaby CD for those of you who have that)came by. She is working on music for a CD to assist in the dying process. She played some of that music on my keyboard and we spent time with Hank. It was wonderful. You need to have in mind friends who are comfortable with the dying process. In our society they may be hard to find, but they are priceless when you get to this place. Hank just can't go on that much longer, but the drive to survive is very strong.
Fran, I keep thinking about you..... I am glad you are able to have a friend with you at this time. One who is as accepting with death as she, must be a huge comfort. I have been with several people on their death bed, and have watched one person die.... My grams. It seemed she hung on for a couple of days longer than anyone thought she would. Each of us grandkids were there, we were with her as a group, and each had alone time with her as well. When she died, we were all on, or around her bed with her, everyone touching her lovingly, a hand placed softly on her leg, holding her hand... and telling her softly that we loved her, it was ok for her to go now.....she died within minutes. It was a peaceful end. I wish this for you and Hank. ~Nikki
Fran, that CD of lullabies that you so graciously sent me was beautiful, and please tell Jennifer that I enjoyed listening to her play. I know that the music yesterday soothed both Hank and you. You are fortunate to have friends who are comfortable with the dying process. I too hope for peace for you and Hank.
Frand, thank you for sharing such a private event in your life. All your thoughts and words will make it much easier for us when the time comes for our dear ones to pass over.
Frand, I will be saying some prayers for you and Hank. I admire your strength so much. What a hard time this is for you both, yet you are generous to share with all of us. I can see that you are a realist, as am I. I admire that trait. It's a strong trait. Much love to you.
Isn't it amazing that all over the country there are some of us, mentally holding hands and sending love! Think of how wonderful that is, Fran, feel the love from us all.
Thank you everyone. This is a safe place to share. Since 4 AM Hank has been taking two, three or four breaths a minute with up to 30 seconds of no breathing at all. He can still hold my hand and a few minutes ago opened his eyes and gave me a kiss. The human body is so remarkable to be able to hold on like this. I suppose he could go in to the night this way...
Fran, this is so sad, but we are all grateful for what you are telling us. I keep checking here to see what is the latest. Bless you and your dear one.
My husband died 10 days ago, and I was not with him. I felt so sad about this, but many friends have told me that it is quite common for dying people to wait until they are alone to finally let go, so you might want to prepare for that. Another thing - I did experience great relief,for him and for myself, but also much more sadness than I expected. I thought I was ready for this, but I was not.
One thing that really has helped is that we did a simple home "wake" and preparation of the body. The kids and I washed and dressed him, and covered him with a special blanket. We put candles by the bedside and the hat he always wore on the pillow. We sang songs and drank toast to him. The next day, a few good friends came by and said goodbye. Our boys, who are all excellent woodworkers, made a simple pine box and we laid him in it. Then when we were ready the mortuary came to take him. I know this is not everyone's way, but I have found it very healing.
benthere - I love what you and your family was able to do to honor the momory of your DH. We are in the same holding pattern. Hank's son is arriving in about 5 hours so I hope he arrives in time.
beenthere, a beautiful thing you and your family were able to do, I am glad it brought you peace. Fran, I keep thinking of you and Hank.... holding you in my thoughts and prayers ~Nikki
Fran; I feel like I have been a member of your family during these last few weeks. You and Hank have never been far from my thoughts. Please know that you are cared for during this time. Anita
Fran I am thinking about you. In spirit you have a houseful of family because all of us are there too. I hope your son makes it in time to say goodbye.
Fran, I can only imagine how difficult this is for you. When my son's grandmother was at home getting end of life care for a brain tumor, the whole family gathered at her bedside. However, my son had to drive from Boston to NY to get there. He arrived and she died peacefully 10 minutes after my son arrived. They were very close. Everyone remarked it was as though she had been waiting for him to get there before she left.