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Caregivers Who Have Lost Someone
Do you find it easy to participate in other boards? At first I didnt even want to go to the other boards, but now I find myself clicking on them. Could also be that this one is not very active and people eventually stop participating here.The problem is that when I read things that are so heartbreaking, they bring back bad memories. I hope one day I can remember my parents for the good times we had and not the horrible days they lived through at the end.
Also, when I read what people are saying that their loved one is doing, I can see that they are reaching a final stage. How do you tell someone this is what is going to happen and of course nothing is positive. One thing I wish I would have known with dad is that the hands and feet turn purple a day before someone dies. My brother and I were going crazy watching that and not knowing what was going on.
Is it good to share the bad?
I've been to other boards, but only to read and not really participate a lot. I find I'm able to read other people's posts and they might be sad, but they don't really bring up "bad" memories.
I do, however, see a LO's end coming and it seems like the person posting has no idea. There are even 1 or 2 people here where I see posts with all the signs--and the person who is writing doesn't seem to know the signs of dying. I would never step in and tell them--I think if someone cannot recognize obvious signs, they wouldn't take the news their LO is in the dying process very well. So I just remain quiet.
The mottling (bruising) you mention only happened for my mother about 2 hours prior to her death.
I agree with Dayn2nite--don't add it to a thread if they don't seem to know. Hopefully, the doctors will be honest with them.
My mom did not pass from AD (not the primary cause but definietly contributed to the ultimate outcome). She had all kinds of things going wrong but each one was treatable and seemed like she could overcome them. So we kept treating each one. After several days in the ICU and things kept popping, I did Google the dying process on my little tablet. I had a need to know if what was happening could be that.
I was able to have frank conversations with all of her doctors and ultimtely we all agreed her body was shutting down. Each thing seemed treatable, but together it all added up to her body shutting down. Her primary doctor said that her body was shutting down so slowly that it was not obvious, so we kept trying to fix things. And in the end, she could not get off life support and breath on her own, so we had to stop treatment to honor her DPOA.
I think if someone asks about the signs of dying, please do add your experience or knowledge if you can. I really needed to know if what I was seeing could be that so I could get the family on the same page and have the hard conversations with the doctors. My mom was full code if she was treatable and could continue on living at similar status she was prior to the hospital. But if the outcome was not going to be at this level, than her DPOA was no treatment at all except to be kept comfortable.
I don't know if helped or not...just my two cents from living through this experience.
What an interesting thread. I have to say from my experience, I WOULD at least hint at resources about the signs of the end. I found the information so very comforting to know what I was seeing, expecting to see. It took a LOT of the fear out. I wouldn't be blunt, but I'd hint and then let them decide to ask more questions or not.
I don't go looking at other boards, especially now. You guys are it As I move through the healing process and that journey, I find I don't need the board the same way I once did. I think that's appropriate too. My heart does break when I read the new members threads and recall just how very long the process can be. I want to hug them all and say, pace yourself, protect yourself some, breathe deep, it's a long haul.
I think I agree with both opinions. Sometimes I sit here and start sharing information on the other board about what is going to happen and most of the time I have not posted it. I feel as if I should share, but it's so hard to post it. It's so hard to tell someone so much negative.
At the same token, I wish someone would have told me when I went through it the first time with my dad. It was horrible not to know. Once I found this board things became sort of clear. With mom since it was the second time around and very short after dad, I knew exactly what was happening.
I don't think it's wrong to share the bad. My Mom is in Stage 7 Dementia now. I scan all of the boards looking for information. I want to know what to expect in the days ahead. I want to know what to look for and if I see something in particular to know what that means. Any information that I can find that will prepare me I want to find it. I know everybody is different. Some people don't want to know. But I do. I want to prepare myself so I can be calm and be there for my Mom. I appreciate any wisdom from experience that you can pass along.I thank you for being so willing to share, especially since it's so soon after losing both of your dear parents.
I only came to know my mom was close to the dying process because of a kind hospice nurse. The nurse told me that she took note of the following signs that the active death process might be near:
1) not rallying her energy
2) listing to one side more than before
3) her eyes changed...the nurse couldn't explain this one and I didn't see it til the weekend my mom was dying
My mom's feet were stiff, freezing cold and purple for a month before she died, so I had asked about that and had been told her circulation wasn't good anymore. They didn't say anything about that being a sign she was going soon. My mom's hands were cold and stiff 24 hours before she died but they weren't mottled until about 12 hours before. Her face changed rapidly over the 4 days she was dying, but didn't change color until the morning of the day she died. Other facial changes took place days before that. As with dayn2nite's mom, the Cheyne-Stokes breathing started about 1/2 hour before she died.
I want to add an opinion here and I hope no one minds this....my being there at my mom's bedside for her death and dying.... who was it good for? It was good for her, I think. She was of the sort who wouldn't want to die alone. it was good for my heart....I said what I should say, I sung hymns, I prayed, I said thanks and I said I'm sorry. For weeks after the death, I was convinced that the witnessing was good for her, but terrible for me. Whenever I thought of her, images of her death and dying haunted me. A few of us on this board discussed that common experience and agreed that it takes a few weeks for that to subside. Now, looking back, I'm particularly glad that my mom, unlike her mom who died of end-stage alzheimers in a nursing home, was not hooked up to monitors that beeped and hummed. The quiet of the room allowed for a more spiritual environment. I will be certain to indicate that I will not want to be monitored like that in the hours before my death, if there is a choice.
I too have wondered about being with my mom when she passed away. It was definitely good for her and for my dad. My mom was not ready to die, but her body gave out on her and her brain betrayed her. Luckily, due to the AD I don't think she knew what was going on and I thank God for that. She was awake when we took her off life support and stayed awake for about an hour (totally unexpected since she had crashed within 15 minutes each time we took her off life support previously). She went on to live another 12 hours before taking her last breath.
I am so grateful I was there the whole time. It was and still is very difficult to realize I was with her in her final moments. It really rocked me to my core and it is still overwhelming to realize that I watched the person that gave me life pass on. But I have always felt that loved ones should not die alone (if it can be helped of course). I saw it as us helping her finish her journey here on earth and I am glad we were there to support her.
I know I would regret it if I had not stayed with her during this final journey (since I could be there). I entered her final illness 2.5 weeks before she passed away with the mindset that I would not have any regrets. I don't know where that guiding principal came from, but I just had a feeling she might not survive the whole ordeal. I knew I was the person with the DPOA and I had to make all the decisions about her care and I just operated on the no regrets idea, including flying a brother in from out-of-state just in case she did not survive. We have never gathered the family before or ever felt the need to fly someone home. The whole experience was very foreign to our family. I also had to try to keep my dad in the loop (he has AD too) but not overwhelm him with too much information or hospital time.
It is hard to explain....it is a mixture of some very powerful emotions. I am proud of myself for the way I handled the whole experience and also devastated at the loss of my mom. It has been over two months now and I just need to keep putting one foot in front of the other and keep living...that's what she would have wanted too. I am a little more emotional tonight since we just had Easter (the first holiday without her) and her birthday is in 3 days. It might be a tough week...oh well--and so it goes.
For weeks after the death, I was convinced that the witnessing was good for her, but terrible for me. Whenever I thought of her, images of her death and dying haunted me. A few of us on this board discussed that common experience and agreed that it takes a few weeks for that to subside.
Thank you SO much for bringing this up. I have been kind of disturbed about this and I didn't know if it would be okay to talk about it. I was the only family member there when she died and I keep seeing her like that in my mind. This is not how I want to remember her. She didn't look like herself, and I know the breathing was perfectly normal, she was not aware of it and some of it was reflex, I also hear the sound in my mind.
I can bear it if I know it will fade, and your post helps a lot. I had never seen someone die before. I did a lot of reading and I knew the signs, but when it was happening-I was in shock. I also feel her "spirit" left her body long before her body gave out (which is why I thought she didn't look like herself). It was the facial features that seemed to have changed for me. Maybe that's the way someone in an unconscious state looks, I don't know. But it wasn't my mother.
My dad lasted 12 days without eating. Two days before he died he had his eyes open. I will never forget the sad hurtful look in my dad's eyes. I have never seen my dad like that before.He kept saying "mama" in spanish. I sat next to him all day for the entire 12 days. It was very hard to watch him go through this. The day before his eyes were closed, his feet started turning purple and his extremities were very rigid.
The day of, my dad's face was starting to change color, his hands were very cold and purple. They were so cold that it was hard to hold them. So I kept putting my hands over it. We were all sitting around him when all of the sudden he started breathing very hard and his throat would swell up. At that moment I buried my face in a pillow because I started crying so hard that I was screaming NO. I was sitting next to his bed right by his face. All of the sudden I felt a hand on my knee and heard my brother say "this is what is best for him". I stopped to look up and my dad had stopped breathing so hard, I got up, kissed his forehead and said "bye dad" then I heard him let out a breath and that was it.
10 months later I find myself in the same situation with my mom. Like someone said, her body gave out and her mind betrayed her. Mom was very strong and she knew she had us to take care of her, but it was beyond her ability to keep living. This horrible disease destroyed her.
I kept telling the hospice nurse that I wanted to spend time with my mom, at least a few days before she died. She kept telling me up to the day before that my mom was not imminent. Then on Feb 13 I ask her again and she says the same. Then on Feb 13 at 10 pm my brother calls that the ALF had called that mom was not doing good. He rushed over there and the next morning my husband and I left at 5am to go to mom's side (4 hrs away). It seemed as if the car could not go fast enough and as if traffic was not moving.
When I got there and saw that her hands were already purple, I was angry that the hospice nurse deprived me of spending those days with mom. But I was more concerned in being there letting her know I was there, my bother and my husband were there. We sat with her from 9 am until 4:30pm that her breathing got agitated, but not like that, she made a few noises and then her breathing slowed down, she did that for 10 mins, someone different that I didnt see in dad, her mouth closed twice just for a second. The breathing stopped very slowly and they had to check her heart twice.
Mom died as peaceful as her life was. I was glad to be there with her for her to know she was not alone. I reminded her over and over that dad was waiting for her, not to be afraid and to know that we would all be okay until we can meet again.
That same night we went to buy her a long sleeve blouse. We found a pretty outfit for her. The funeral home required something long sleeves. She hated long sleeves, as I do, so none of her clothes had long sleeves.
I didnt like how the funeral home streched my dad's lips. It didnt occur to us to give them a picture, my dad's face was consumed and it was very hard to get his mouth to close after he died. For my mom we gave them her picture. She looked so pretty in her casket. They did a nice job in her face and her hair was so beautiful.
@dayn2nite, I am so sorry for your loss I really am. I just saw it a day or so ago on the other board that your mom passed. I know you are relieved that she is at peace. I appreciate your sharing this personal information at such a delicate time in your life.
I thank all of you for that. The things you speak of, the purple feet, molting I never knew. The breathing my mother has told me about. It is so painful to hear but I want to be as prepared as possible...not that it will help me too much. I can hardly bare the thought of not having my dad. He was not good today but he did know me. He just looks so worn out. I know he has to be tired of fighting through all this.
I'm glad you did, dayn2nite. I was advised to make sure I'm with her as much as possible, and I'm forever grateful to that brave soul who spoke up. You've blessed both the cg and the ADLO, kudos to you for doing such so tactfully.
Yes, you did. She's quite worked up as of late. You're not the first to ruffle feather by an innocuous post and won't be the last.
I have a friend that her mom is reaching the end and I made a comment about what happened to my mom at the end and made the same suggestion of spending as much time with her as possible and that sometimes it's time to let go and let God, my friend ended up explaining how "she" was going to do all possible to give her mom a better quality of life.
Oh well, she didnt understand. We do because we have been there. Unfortunately for me I have been there twice and I learned that no matter what you do, your LO is going to die because this disease cannot be stopped.
You meant well, she is just too overwhelmed to realize it.
My two cents to an interesting and vital topic.
This is why Hospice is such a wonderful group. They understand how to tell someone as much as they need to know.
Some people are not ready and very well might resent our informing them.
If someone posts a direct question, I would certainly tell.
I agree you tried to do the right thing. I think you provided guidance many of us were thinking. Several days ago I felt the same way but I did not know how to express it and hoped I was wrong.
I did just post to one of her threads about planning for the future. I felt compelled to share some of my experience since it was similar to hers on this front at least.
We all just want to help each other...but we don't always know how and it is not always taken the way intended.
Unitl the person comes to accept and understand that their loved one is dying, they cannot understand even if a professional tells them.
I remember rushing my dad to the ER constantly because I wanted something to be done and my dad cured. Well it didnt happen even after three times to the ER. On the 4th time, my dad's BP was 60/40 when I arrived at their home on Dec 24, 2010 with a car full of gifts ready to celebrate Christmas with them.Again, I called the ambulance and took him to the ER.
When we got there they put him on IV's to hydrate him and the ER doctor asked me if my dad had a DNR, I said yes, he then tells me that they were going to call hospice so we could take him home.
What? My heart jumped and I said no no, you need to get his BP back up, you do whatever is needed to get him well. So they did. They put one IV of fluid after another and on the second day had to put dopamine to get his BP back up.
I stayed with him day and night watching him through the horrible sundown syndrome. At one point I fell asleep and when I woke up he had the nose oxygen tube in his mouth chewing it. Then later I fell asleep again on the chair I was sitting on right next to his bed and his body was half way down the bed.
On Sunday, December 26 my brother came in and said "do you know that dad's living will says no hydration?". Humm... again I said, I dont care. But, as I sat next to my dad that day and looked at the state he was in, my heart spoke to me and said "let him go". I put my head on the bedrail and then felt dad put his hand on my head. That was his way of probably saying I was right.
I agreed on that day, Dec 26, 2010 to call hospice and let it be. I accepted that my dad was going to die and there was nothing I could do.
But it wasnt until that moment that I understood.
I read cowboys' post and was also so sad. I've posted and I'm praying for the family. Thanks for your post, dayn2nite. How are you, by the way? I've been thinking of you.
I read "Hard Choice for Loving People" last night. I ran across it on a post that I can't seem to find now. It was so informative and so well-written. It told me exactly what I need to know.
I have to admit I cried through most of it. But it told me it's ok to start the process of letting go. It also told me physically the signs I need to be watching for. I want to be as informed as I possibly can be. I want to be there for my Mom. I want to be the rock that helps her through this. She helped me through the toughest times of my life and I want to help her through this.
I guess I'm okay, well I'd say I'm normal for someone whose parent died recently. There's not a day I don't cry, I tend to do it at night-I go outside and look up at the sky and cry.
Oceanbum, "Hard Choices for Loving People" is something I read also, it was given to us by our hospice social worker when we had our intake meeting.
I loved our hospice as far as how they took care of mom, but at the very end, I expected more of them, I guess. Mom was going very downhill on a Friday, there was an on-call hospice nurse who came to see her and called on Saturday, but I never saw or talked to another person from hospice after that while mom was still here. I thought surely someone would swing by on Sunday morning (she died at 3 pm on Sunday), but nope. It was all the regular NH staff taking care of her.
I had also heard they help the family afterward and all I've gotten was a "let us know if you need anything" from the social worker. What is "anything"? God, give me a list of grief support groups or something, I can't seem to find one around me and I live in a large metropolitan area. I don't know what to ask for, because I know when I say I'm sad they'll tell me it's normal.
dayn2nite, I relate to your daily crying. I like the idea of looking at the stars. I end up crying when i'm in the car with the kids, thinking about when my mom used to sit in the passenger seat next to me as we went on adventures together. (I can't cry hard or long since I'm driving )
I'm not certain this would work with the hospice you interacted with, but I asked our hospice chaplain for materials on the grieving process and got a folder of stuff, but none of it was about local grief support groups. It was about "give yourself time, everyone grieves on their own timeline...." As discussed on this forum, even if we try to give ourselves time, sometimes the rest of the world isn't affording us much time, is it?
I agree, it's likely that what you'll hear back is a lot of "that's normal" and what I want to yell back is "you don't understand, it's affected my whole personality and ....and...." I realized last week that as opposed to the chaplain, what I probably just need is someone who has a lot of time to listen and who is good at that. I looked up the author that OMNI (or was it Beth?) recommended, who has a book and a journal about grieving a loss. I can't remember the name right now but it's still on this forum somewhere, in case you're interested.
The other day i got a visit from the one friend of my mom's who visited her faithfully. It helped to someone connect to a common past.
Hospice follow up is only written on paper. Having gone through it twice already I have never gotten a follow up call. I actually got a sympathy card last month and mom died in February.
The chaplin that went to see mom would stand two feet away from her and read some weird version of the our father and would leave. He did that twice when I was with her. I had to bite my tongue not to say anything. The one that came to see my dad would read the our father from his phone. For God's sake at least memorize it.
The one that visited mom showed up the day she died as we were waiting for the funeral home to pick up the body. This time he was a little more pleasant. I am glad because at that moment I dont think I would have put up with a careless attitude.
Since my parents were catholic, we requested a priest to say something at their funeral. The one that came to my mom's funeral was very nice and very caring. When it was time to leave I just couldnt step away from her casket, he ask me to get a flower and put it in her hand. He slowly and with compassion got me to feel good about walking away.
When we got to the mausoleum, my two brothers, my son, my brother's partner, my two nieces, my husband and I were the ones that carried my dad and my mom's casket. I asked him to say Psalm 23 and so he did. When they opened the mausoleum and he saw a casket in there, I told him "that's dad, he has been there for 10 months". It was then that he understood my pain. I could see it in his eyes.
I have found more therapy on these boards than any support that anyone else could have ever given me.
I have to ask a question. I know this may not be the place but this post seems to have honest, caring people who will give me the answers I am looking for.
My Mom is in Stage 7 Dementia. She also has late stage COPD. She is on oxygen 24/7. The last couple of days she has been sleeping alot. They wake her up to eat. She does eat but she has been having trouble swallowing for the last couple of days. I know both of those are not good signs. Today when I went in to visit they hadn't gotten her out of bed because she was just sleeping so much. They fed her in bed. She has a slight fever. The doctor listened to her breathing yesterday and said it sounded good. I felt her hands and they felt somewhat cool, but then again, my hands could have been warm. I don't know. I couldn't tell if her hands showed purple or not. She has always been very skinny so her veins have always been very pronounced on her hands. Now that she is extremely skinny they show even more so. So I'm not sure if there's any purple there or it's just her normal veiny hands, if that makes sense.
Any thoughts? Please be honest. I don't want to have regrets. I have been reading and researching everything I can find so I can be as prepared and informed as possible. Thanks for your help!
My mom also had COPD but was not on oxygen. When she went downhill this last time, it began with her being in bed (when normally she would be up, dressed and downstairs in her wheelchair). We had just discussed (hospice nurse and I) that she was having trouble swallowing beef and a request had been put in for any meat to be chopped for her. She started with a mild fever. We started an oral antibiotic (crushed) to see if it was something that would get better. It didn't. She ate breakfast Wednesday, would not eat lunch for me, just held the food in the front of her mouth and I had to fish it back out, so I stopped trying. She did drink some juice and water at that meal. She did not eat dinner that day.
Thursday, she ate all of her breakfast and looked a lot better. By lunch, not so good, sleeping a lot, continued with mild fever. She did not eat lunch or dinner, she was either asleep or very drowsy all day.
Friday morning was the same, chaplain came to ask me if we wanted last rites (I said no because I was afraid she would become alert just when a priest was standing over her and scare her) and it began to dawn on me that she was not going to get better. Friday afternoon her fever was getting a little higher, we had stopped the antibiotic because it obviously was not helping and my mother's wishes were no IV antibiotic or fluids.
She slept all day Friday. They put oxygen on her to make her more comfortable. Saturday morning she looked better, more alert. Hospice nurse saw my mom when I ran home to take care of the dogs. She called, I asked if it would be today and she said she didn't think so, but it would be soon. Mom was holding my hand all day and looking at me when I talked to her. By Saturday night, she was no longer alert and her fever was going way up, 104, 105. We put ice packs under her armpits to cool her off a little, again for comfort. She also was moving her lips like she was talking to someone, but with her eyes closed and there was no sound coming out of her mouth. It was like she was having a conversation. She cooled down to 99, then back up to 104 and basically the temperature was a roller coaster all Saturday night.
Sunday morning she was unconscious but peaceful. I had been checking her hands and feel all these days and no changes. Sunday morning there was no change either.
At 1 pm her hands were looking kind of purple but her feet were fine. I was supposed to work at 4, at 2 pm I told her I was going to go to work at 3 and my brother would be coming up right after. Also at 2 pm her hands got more purple, feet a little darker. At 2:20, bottoms of feet became purple. At 2:40, her face color seemed to change a little, she started the agonal breathing. Afternoon shift nurse came to check vitals at 2:55, I asked if it was time and she nodded yes. I ran out into the hallway to call my boss to say I couldn't come to work. I was so flustered I had to dial the # 3 times, I finished the call at 3:02. I ran back into the room and she was a completely different color, yellowish-gray? and the sound of the breathing. She took her last breath at 3:06, I was with her by myself. I called my brother, who was on his way and told him. He asked me if the nurse was there and it was then that I realized I hadn't told anyone she died, so I ran to get the nurse.
Also--my mom was pretty big--she had not begun to lose weight and until this started, she was eating 100% of her meals, so that may have been a reason I didn't notice mottling until nearly the end.
I will tell you this---it was mom's wishes not to have IV hydration, so we had no dilemma there--but truly she was as peaceful as one could be the whole time. I never felt she was suffering without hydration, and in fact the day she was alert I tried to give her a drop of water from a straw and she wouldn't take it.