My mom was 92 and has swallowing problems for the last few years. She had gotten down to about 75 pounds. I had to take her to the GI doctor to have her throat stretched every 4 months just for her to survive, with the last time being July 2nd. Even after the stretching she was only able to eat soft food. Due to this, she continued to be suffer from malnutrition. She always said no feeding tube so that was not an option. When we returned home from the GI procedure, I thought she would be ok. But for the rest of the month, she said she was tired and would only eat a few bites a day. Then at the end of July, she said she was sick and wanted to go to the hospital, even though her communication skills were not great since her mind was not that good either. My brother wanted to go to the hospital with us as well, which he had never done in the past. The ER doctor said she has pneumonia again and should be put in the hospital. My brother adamantly refused saying we should bring her so she wouldn't die in the hospital. She stayed overnight and the next morning receiving 2 antibiotic treatments and sending oral antibiotics home. In a few days, she was dead. I feel so guilty by not making her stay in the hospital. I ultimately blame myself since I had the final say, but I also blame my brother as he kept insisting we bring her home. I can't get it out of my head that she would still be alive today if she had stayed for pneumonia treatment as I now think that have been a big part of her tiredness and not eating the last month. I feel so guilty and so angry at myself and my brother.
My life has completely changed since her passing and not in a good way. My routine and sense of purpose are now gone.
In response to Suzy's question about keeping her alive, she indicated she wanted to live. My philosophy was to help her at the hospital if possible within her limitations (no feeding tube, no CPR, no life support, no mechanical ventilation). I believe that something fairly simple as antibiotics for pneumonia falls into that category. I didn't want to feel guilty for the rest of my life if there was something that could be done to help her such as antibiotics. Now I feel guilty since that is exactly what happened.
OP: I’m sorry you are giving yourself such pain and torment over your mother’s death.
My father had swallowing difficulties from dementia and and lost a lot of weight and he died at 80 of aspiration pneumonia. When they called me from his hospice facility to say he had been coughing and asked if I want him taken to the hospital I said no. I felt at peace with it then and I am still totally at peace with it now, 16 months later. He had indicated he had had a good life and wanted his life to be over months before. If anything, I feel guilty about this one time he asked me to watch a movie with him a few months before he died and I only did it for 20 minutes or so. I wish I had stayed through the whole movie.
I will also say that if I live to 92 and weigh 75 lbs and can’t eat more than a few bites in a day even with what sounds like very unpleasant procedures, I hope whoever is there caring for me will take mercy on me and let me pass. That they do not use medical means (including antibiotics) to keep me going. I have this all spelled out in my advance care directives but I know sometimes they are not honored.
I hope and trust therapy helps you. Maybe in therapy you can explore why you felt it so urgent to keep her alive and who you were doing it for.
I don’t think that many people pass in their sleep quietly and naturally these days, unfortunately.
i hope I haven’t upset or offended you. I wish you peace.
Antibiotics are not as effective as they were 30/40 years ago due to antibiotic resistance. Antibiotics are many times not effective on the extreme elderly. Many times pneumonia treatment does not work on the extreme elderly.
Neither you nor your brother hastened Mom's death.
She could not swallow and take in nutrition. Those that cannot swallow are at high risk of aspiration pneumonia and can't fight it off.
She was a very specific person. She was a hypochondriac, loved to feel like a victim and tended to lie most of the time to get attention. Because of this, my family had reached their limit with her. I was the only one who still listened to her and tried to make her life better in any way I could.
In her last days, she was feeling "off", but we all just assumed it was another one of her false complaints. But I noticed she had stopped eating. I tried to talk to my family about it, but they were uninterested until her condition got worse. She was admitted to the hospital, and three days later, she died from a UTI.
For a long time, I carried so much guilt. I thought it was my fault since I didn't notice it earlier and tried to help. The last time I saw her in the hospital, she told me, "Bring me home, I want to die at home". I told her I would talk to my dad about it, but that night, she passed away.
Your feelings of guilt and anger are valid. You were in an impossible situation. It's a heavy burden to carry, and I understand you. But you did everything you could with the info and support you had at the time. I hold onto my guilt still, so I talked to my psychiatrist about it.
She told me that grief is complicated and that guilt is a normal part of the process, but it's not a reflection of your actions. She said the best way to deal with it is to accept that you did your best in a difficult situation and to try to forgive yourself.
It gets easier with time, and please be kind to yourself. You were her caregiver for a long time, and that is what helped her live a decent life. It's a big thing, and you should try to remember all the good moments you had with her.
You responded with these questions: I had to watch her die at home over the next 5 days. I was thinking was it painful? Did she know what was happening? Was she scared? Is there a heaven? Or is she just...gone? Could I have done something to save her? Did she know how much I love her? What am I going to do without my mom? Oh mom....this can't be real.
You sound so alone during those 5 days. Was there no one with you?
It sounds like you still have some painful questions about those days. Can you find a therapist or a minister/priest to help you work through some of these questions?
It's a path no one wants to go on but now you need to find ways to move one.
Remember you are grieving a deep loss. Be kind to yourself. Get help with your grief - support group or a resource in your community.
Hugs and prayers.
As I indicated I was the one that took her to all of her doctor appointments, hospital stays, etc. for over 15 years. My brother never did any of this. On the last hospital stay, I had every intention of letting her stay for treatment for the pneumonia. That is why I am so upset that he showed at the hospital that day basically demanding that she be brought home so she could die. I just feel like I was ambushed and gave up too easily. The more I think about it, the more I would have been ok with her dying in the hospital as long as there was a chance of recovery. Her death at home was not very peaceful.
You were in an extremely difficult situation. I know first hand how hard it is to make a decision with another person demanding it be a certain way.
Guilt is such a damaging emotion. Do you have a therapist or close friend who can help guide you through what you experienced? It is common to feel guilty about "why did I do this?" or "why didn't I do that?" It won't help you move forward in your life but keep you trapped.
Personally I don't think you made a wrong decision as your mother likely would have died in the hospital instead. Do you really know where she wanted to be? (I know my mother wants to die at home.)
What is one step you can make to move forward in your life?
I had to watch her die at home over the next 5 days. I was thinking was it painful? Did she know what was happening? Was she scared? Is there a heaven? Or is she just...gone? Could I have done something to save her? Did she know how much I love her? What am I going to do without my mom? Oh mom....this can't be real.
Can't swallow, can't eat, most likely aspiration pneumonia from not being able to swallow properly. You kept her going for years with the throat stretching. Years she would not have had without your diligent care.
We cannot fix everything or control everything and we do not have a crystal ball. Your brother wanted all the struggling and suffering to end and for his mother to die in peace in her own home. He also wanted what was best for her it seems to me. A few months more of struggling to eat and decreasing cognitive abilities do not sound like a good way to live to me. I would be ready to check out, myself.
Do not let this drive you apart. I am an only and would give anything to have a sibling to share fond memories of deceased family with. You are in a state of grief and feelings like you are having are common. Find a grief support group that you can join.
((((hugs))))
If she had survived, would she be happy today? Feeling better? Optimistic? From what you’ve said here, I don’t think she would be. Would YOU be happier? No.
It was her time. You just weren’t ready. Few people are.
Wherever you believe your mother’s soul is now… do you think she’s angry at you? Resenting you? No!! She wants you to be well in the time you have here. She can see straight into your heart. Keep her love in your heart! Guilt does not belong there.
(I have never heard of throat stretching but it sounds awful.)
I can’t tell you how that describes my feelings. It has been almost 3 years. I also looked after her for many years and 5 months before her death I had to place her in a facility for her safety and my sanity. I had overwhelming guilt. It still pops up out of the blue occasionally and almost suffocates me.
I did take advantage of hospice counseling and ended up writing down all the positives…all the things I did because I loved her. It is very difficult to force myself to think on the many many good things I did for her ( and not my perceived failures) but I have pulled that list out many times to balance my grief.
I am in a much better place. I wish I could say you wake up and you are instantly better but it takes times. My heart goes out to you. Be kind to yourself.
You did good. I hope in time you can let go of your anger and feelings of guilt and remember how your mother was when she was healthy and not the way she was these last few years.
She is not suffering anymore.
Your mom was going to die in any event. (sorry but you could not have prevented it)
You did an amazing job helping her as long as you did.
I am actually surprised that she went along with the procedure having her throat stretched.
Part of the dying process is slowly stopping the intake of calories that are no longer needed. Minimal calories are needed to allow the body to function with breathing, beating of the heart, kidney function.
One of the real risks when eating becomes a problem is Aspiration Pneumonia. Even with the throat stretched the body sometimes does not close off the passage way to the lungs and sometimes bits of food or liquid go down the trachea instead of the esophagus this can cause Aspiration Pneumonia.
To feel "guilty" about it is normal. I think any caregiver that looses a loved one or a client feels "guilty" to some degree. It is your "job" to care for this person. But no matter what you do, how good you are death is a fact of life. The feeling of guilt is not "guilt" but a feeling of failure. and in many cases that feeling of failure is added to the grief that you are feeling.
Let yourself grieve
You did a good job and your mom knows it.
What this means is that although pneumonia sometimes can be treated, the kindest and most compassionate thing to do for an old person might be to not treat pneumonia.
The "what ifs" and "if onlys" are part of grieving. The second guessing and wondering, the anger...all normal grief. Perhaps it would help you to see a grief counselor join a grief group. You have done nothing wrong. ((((hugs))))
She is at peace now and will never be subjected again to what she went through in her last illnesses. That's a blessing because there wasn't much hope that she'd get better. Swallowing problems, throat stretching, malnutrition, exhaustion, pneumonia, can't eat, and only 75 pounds??? And 92 years old? This is torture! To have let it go on indefinitely would have been cruel and unkind.
I'm so sorry for your loss, but you did nothing wrong. It was her time, and each of us will get to our time eventually. Grief is real and it is difficult, so I hope you soon will be able to feel gratitude for her life and the strong bond you shared. She was very lucky to have you in her life.
Eventually we cannot speak.
We cannot recognize our loved ones oft times.l
We cannot sleep.
We cannot walk.
Eventually we cannot move, and we go into a fetal position with contractures and decerebrate posturing of our bodies so that truly we look as though we are returning to the womb.
YOU DIDN'T CAUSE ANY OF THIS.
Guilt requires causation.
Guilt requires you did something out of evil intent.
Guilt requires that you refuse to fix what you did when you are well able to fix it and refuse to do so out of evil intent.
WORDS MATTER.
You should see a cognitive therapist so that you can work out the way you speak to yourself, as currently labeling yourself guilty is selfl-harming and destructive.
You are looking for another word for all of this.
That word is the one I hope you will replace "guilt" with--call it your other G-word.
The word you need is GRIEF.
Is this all not worth grieving.
I am so sorry, and my heart goes out to you in these terrible times and circumstances, but beating yourself up is uncalled for; please don't do that to yourself. It does you no good and does your loved one no honor.
I'll tell you a story. My own mother was 92 when she came down with asiration pneumonia again, and was suffering from dementia at the same time. So off to the hospital she went, where her condition was iffy. But they saved her life, only to have her mobility compromised where she went into a wheelchair permanently, and her dementia progressed to where I had to get her from AL into Memory Care. She loved AL and hated Memory Care where she hung on for THREE years, begging for her dead parents and siblings the whole time. Mom should have been taken when the pneumonia struck, not made to hang on with advanced dementia for 3 miserable years more.
Extending a sick elders life is cruel. I wound up praying for God to take mom mercifully for 3 years. He finally did at 95 and it was a blessed relief for her to finally be at perfect peace.
Stop beating yourself up for your mother's peaceful passing. You'd probably be beating yourself up for extending her life and watching her wither away otherwise. Old age and disease is oftentimes a no win situation. But both of our moms are at peace now, and for that we should be grateful. God was ready for them when they passed, and we had no control over anything. Remember that. Give yourself the grace you deserve.
I doubt at 92 years old and 75lbs a couple more days in the hospital would have made much difference. My mother’s partner, age 95, was treated for pneumonia in the hospital for weeks and died anyway. We often want someone or something to blame when a loved one dies and end up blaming ourselves.
Your mom died of pneumonia, an inability to swallow and old age. Sadly, these are not things that can be fixed. It’s evident from your message that you loved your mom very much, and I’m sure your brother did too.
You did the best you could and gave her the gift of dying at home. I pray that you can find some peace and healing as you go through the grief process. ❤️