A month ago my husband (86) passed away. He had had health problems for a long time (although apparently not serious illness). He could hardly walk with a walker, slept a lot, hardly ate and had lost a lot of weight. I have rheumatoid arthritis and lupus, but being his only caregiver I took care of him the best I could. He had many bladder and bowel accidents, and I would spend some nights cleaning him and changing his clothes and bedding. So one day I prayed the Lord to take him, but immediately I felt bad and added that only if it was His will and if it wasn't something that I would regret afterwards. In the last months it became harder for me to take care of him, and take him to doctors' visits, so when a nurse suggested home hospice care and explained that I would have help with him and I wouldn't have to take him to the doctors since he would have nurses and home help providers come to the house, I thought it was convenient. I loved my husband but I was feeling completely exhausted,
Two days before his death he had a very serious constipation problem. I gave him a tablet prescribed by the nurse, but since he refused to drink much water; it didn't work. That night he was struggling a lot (I felt so sorry for him), so I gave him another tablet with a full glass of water. A little after, he went to the bathroom and had a bowel movement (we both felt relieved), but later he started having terrible diarrhea and later he started to vomit a black liquid. Lots of it. I got scared and called hospice, but it was a long time before the nurse came. She then said he needed to to be taken to the hospice installations. When we got there the head nurse told me they would keep him there for a couple or three days, so I assumed his condition was not so critical. He kept saying he wanted to go back home, and complaining of feeling very cold. They added some blankets, but he insisted he wanted to go home. I told him to be patient, that he needed to stay so he could get better. Since I had not slept for two days I thought it was OK for me to come home and sleep. The following morning when I got there I and my daughter tried to wake him up. His mouth was wide open and he was breathing heavily and did not respond to us. The nurse told us he had had a very bad agitated night and had been vomiting a lot of the black liquid (I understand it was blood). She told me they had sedated him. I asked her if that was the reason he couldn't wake up, but she said that the medication should have worn off a long time before. We were at his side all day and his breathing pattern changed, and then there was a gurgling noise coming from his chest. He died at noon.
I am being tormented by my grief and my feelings of guilt: first, because I had prayed some time before for God to take him and second, because I didn't spend that night at his side.
Another thing that is tormenting me is that I can't understand why, just one day before he was conscious and talking, and the next day he died. I didn't receive an explanation for the cause of his death.
Now I feel so miserable. I feel so sad and lonely without him. I miss him terribly. The house feels so empty without him. I feel I am in deep depression (and I'm taking medication for it). If I could go back in time, I would have him back with me, even if I had to take care of him the way I was doing it.
Please, do not beat yourself up. You did soooo much for your husband. Do not forget that. You had to take care of yourself too and that is not something to feel guilty about.
It is not necessary to stay by someone's bedside 24/7, so it is ok that you went home. He was safe. He was being cared for.
He was pretty old, had been failing for what sounds like a long time and sooner or later the end was inevitable.
Be kind to yourself.
You did not kill your husband by asking God to take him home, my friend. He was long suffering, and you were hoping to see an END to it. It was his time to leave the Earth, and that's why he died. It was blessedly fast and that is a wonderful thing.
Being that he'd lost a lot of weight and had been ill for so long, he probably had cancer which led to him vomiting blood. Nothing you did or didn't do caused his death, and hospice only eased any discomfort he may have been feeling.
You were not intended to be at his side when he passed,,,,,,he did not want your last memory of him to be an ugly one, so you were spared that sight.
Please try not to feel guilty or responsible in any way for your husband's passing. You were a wonderful care giver and wife, and I'm sure he was grateful for all you'd done. He is at peace now, in the next phase of his eternal life, where all is well and no more pain exists.
Wishing you peace and Gods comfort in your time of grief.
Losing someone unexpectedly, however ill they are is a terrible shock. I truly understand your genuine desire to want to rewind and redo that time. I’ve been there. But you need to admit that you are human, that with the best will in the world, you were totally exhausted and in need of sleep.
Thats not a crime, that’s normal human frailty. You and your husband shared, I’m presuming here, many years of marriage, and I hope, some wonderful times together. I’m sure if you consider your husbands many attributes, they would include a desire that you be happy for him that he is no longer suffering.
It rather sounds like the constipation feeling was in actual fact something else. Did your husband have a gastric ulcer? That can cause black vomit and faecal matter. You were right to take him to hospital with that happening - even though looking back you wish you hadn’t.
I am so sorry that the sudden loss, and lack of sleep, has triggered your depression. It’s very hard to lose a spouse whatever age and health. I see you have faith, I always loved the footsteps in the sand poem - where at the worse times - there was only a single set of footprints and they thought they were alone, and God says that’s when they were being carried.
I’d love to hear more about you and your husband, when you feel able to. My family have lupus so RA as that’s a part of it, it affected both aunts sight very much too.
Regards,
Shall be thinking of you and and hope you keep in touch
When my step dad died last year, it was unexpected. He had been under a doctor's care and was told he had arthritis in his back. It turned out he had metastatic cancer. He was diagnosed before his death, but there was nothing to be done except keep him comfortable.
He lost a great deal a weight too in the last 6 weeks of his life.
You mention wanting to go back in time. There is nothing you could have done that would have changed the outcome, only perhaps the location of his death.
You mention medication, are you also attending a grief support group or individual counseling?
You have the right to live on.
I am so sorry that your husband died. I am sorry that you were not able to be with him. None of it is your fault though. He is at peace like you wanted him to be. There was nothing wrong with your prayer and you included the most important thing, ‘thy will be done.’ So you have absolutely nothing to feel guilty about.
Of course you miss him. How long were you married? Tell us about him if you like. I’m sure he was a very special man. We are here to listen to whatever you wish to share.
It is so obvious that you loved your husband. You are grieving and you are questioning everything. Both are perfectly normal. We all grieve and we all wonder about things.
Hugs for you. Take care.
Your husband’s death was out of your hands. WE do not have control over who and when someone dies. You did all that you could for him while he was here and it was just his time. As a longtime caregiver for my mother, who is 89 (I’m 65), caregiving is the hardest thing to ever do, and when their quality of life is mostly non-existent, it is understandable that you pray for them to be out of their misery. WE are not that powerful to determine the end of a loved ones life. Please do not torture yourself, but allow yourself to grieve. YOU DID ALL THAT YOU COULD! Please be kind to yourself at this sad time. 🙏
You will feel stunned for awhile by the sudden silence and emptiness at home. You will feel confusion, depression, and lack of concentration and patience and think maybe you need to move to "The Home for Dementia." The death of a spouse causes the equivalent of PTSD in the surviving spouse.
Take all the time you need to work through your grief. There are no "should's" about how long that takes or about how bumpy a ride it may be. Break down tasks into tiny pieces to make day to day life manageable. There is no rush for anything. Let people at your bank, Motor Vehicle Department, etc guide you through paper work. They will help you get it done correctly.
Talk to your husband: out loud if you wish, or written down. If you can find a support group, especially one for the newly widowed that encourages people to talk and share feelings,, you can talk about your guilt and depression and you will hear from others that your feelings are universal and you are not really plunging into built-in Dementia.
Be gentle with yourself. You are physically and emotionally exhausted and grieving takes a lot of energy. Please keep contact with the forum so we can know how you are doing.
you need to understand that every hands-on caregiver went through this exact same thing. We all had/have some guilt and grief to deal with. At some point, everyone of us wished that our LO would pass and end the strife.
seek help to deal with this a move on.
I have asked God for lots of things and he has not out right granted my request that quickly!
There were plenty of times during my Husbands illness that I asked God to end his ordeal. (I can't say suffering because I really think with dementia the person WITH dementia does not suffer, it is the family that watches the decline of their loved one that suffers) And God gave me LOTS of other things in stead of taking the love of my life.
He gave me patience
He gave me the insight to deal with all the "problems" that we faced.
He gave me the ability to see that I was gaining knowledge to pass on to others
He gave me a new focus, I now volunteer for the Hospice that helped me care for my Husband.
He gave me a strength that I did not know I had.
It has not been easy
It does hurt..sometimes more than others.
You did the best that you could.
You can not nor should you feel guilty about anything.
Talk to Hospice about Bereavement counseling they usually have a group but you should be able to talk to a Counselor one on one. If you think you need more than that talk to your doctor about seeing a therapist.
But know what you are going through..the doubts, the anger, the guilt the frustration is all normal.
What a wonderful reply!! We do gain patience, insight and a knowledge of our own abilities to do things..........all while we care for the ones we love and watch them fade away.. I think getting a focus afterwards is so important!! Great answer!
It sounds like this recently occurred? Getting thru the grieving process takes time. Do you have a priest/minister/rabbi you can confide in?
It is hard now but the TRUTH is it was his time to move on. He lived into his 80s. He had a far longer life than many.
Find someone to talk to about this. know that you did and tolerated FAR more than many. Find away to enjoy the time anf freedom you have left.
Best of success
My wife had many health problems which prevented her to have a normal life. I, like you was her caregiver until I couldn't do it anymore and her health got much worse resulting in her going to a nursing home. Even at the NH, I would do as much as I could to make her comfortable.
Just as you, it was hard for me do do things for her. Her health kept getting worse and I asked God to end her suffering. She wanted to die and she asked Him also. For her last year I was with her every day. But when she died I wasn't with her which still troubles me today.
Your husband suffered terribly, but you were there for him in spite of your health problems. You did the best you could, so don't feel guilt, there's nothing to feel guilty about.
You are upset because of not knowing what caused your husbands death. First look at the death certificate, it will have the cause of death on it. It you still have questions, simply call the office of the doctor who signed the certificate and explain what you want.
And don't feel guilt about asking God to take him. You chose the only possibility of finding help for your husband. I did the same but I have asked God for His forgiveness. I was actually angry at God and told Him I don't believe in Him anymore. That's how desperate I was. I went to my church and told the priest what I had done. He assured me that everything is okay.
Regarding your loneliness and your grief. You must seek grief counseling, it helps. Call your church or your local VNA, they can help you find a meeting place. And to help you with your loneliness, get out of the house and/or invite family and friends to visit you. What I have experienced is getting out and doing whatever I can think of sometimes gets my mind off my wife, but soon as I return home the loneliness starts all over. Only time will help.
We both have similar stories. It will take some time before we start feeling relief from what we are going through
I wish you well and express my deepest sympathy for your loss. May the days ahead lessen the hurt that you are experiencing. God bless.
And you are quite right that over time you will move into your new life and your new reality and your memories of your wife will come with more smiles and less depression.
I remember a passage about dying from a booklet Hospice gave me when I was caring for my husband. It suggested that the dying person sometimes "picks their time" and may prefer to do die at a moment when you are not there. I don't know if there is any truth to that, but the idea has always comforted me.
Movies and Television usually make death seem quick and pretty, with last words only seconds before the end. Very very few deaths are like that. Most are slow and distressing, and for many many people (including me with my mother) the end comes when the watchers have gone to sleep through exhaustion.
Please grieve for your husband’s passing, without guilt or blame. Neither are true, and neither help you or him. God took him when it was His will. It’s now God’s will that your life continues. Use it wisely.
But it also sounds to me like hospice gave you false hope that he would be ok for a few days, when in fact he wasn't. I had my father at home hospice for a week and they did not understand that his days were limited as well. They seemed so out of touch with what was going on, but he did have a peaceful death at home despite their error in judgement.
Try not to be so hard on yourself.
My dad had a horrific death by hospice.
Your guilt really isn't your prayer to God. Your husband would've passed sooner. He still was with you for months.
The guilt is really from allowing OTHERS to care for him.
Hospice care is NOT what it is cracked up to be.
Their comfort drug is morphine. However morphine is for pain. It causes breathing problems because it suppresses the respiratory system.
Hospice ASSUMES families know that their only purpose is a comfortable death. The manage that with morphine. What is a small dose for some may be toomuch for another.
The black vomit is blood BUT no one tells us. They bypass answers by taken advantage of our weak emotional state.
The nurse who suggested hospice, I assume, was a hospital nurse. The vomit should've been addressed to you before trying to SELL you hospice.
My dad kept asking to come home from a short term rehab and I would say wait till you get stronger.
On Memorial Day the rehab called me at 3:30 in the afternoon saying that my dad has been unresponsive at 10:30 am and wanted to know if I wanted him to got the ER. What is wrong with this picture? They are health care they did not need to ask permission.
Bottom line he had a stroke. He couldn't talk.
Here is my first guilt..I should've brought him home and had home therapy.
Now he's in the hospital and I told him don't worry I will bri g you home and you will NEVER leave our home. If course except for doctor's appointments.
So the hospitalists ENCOURAGED (strong armed/bullied) me to have hospice at home.
The breathing problem was aspiration of fluid. It went down the wrong pipe. His lungs were filling up with fluid. Sure the nurses visited and I kept telling them he can't cough it up he needs to be suctioned. They has given us a suction machine but that was ONLY for extra saliva in the mouth. They knew it couldn't go down his throat so they told me to go buy robitussin. I did. But he was weak and couldn't cough it up.
By the time we revoked hospice and called 911. The ER was getting the gunk out but really he needed to be suctioned sooner. So that night I slept in his room. He passed away the next afternoon.
Sorry I have to stop. This happened in July 2019 and I still keep looking back.
Second mistake was HOSPICE.
DEATH BY HOSPICE.
Put ALL OF YOUR BLAME IN THEM.
The
I pray that you will find peace. Your dad would want you to have peace.
Take time to grieve. I lost my dad in 2002. I think of him often. He was a special man. He suffered too. I take comfort in knowing that he is no longer suffering. It will get better for you in time. Hugs! 💗
Hi Tiger 55!😃
But, I do blame the hospital for failing to recognize how he was failing after being there for about a week. I came in that night and seeing the state he was in, made the decision right there & then to bring him home and start hospice. By the time he left the hospital he had breathing problems or a very bad cold, not sure which to this day. My only regret is that I didn't take him home sooner. I have no faith or trust in the medical profession when it comes to hospitals. If you don't stay on top of things at all times (like I did) anything can happen. I had to micro-manage every aspect of his numerous hospital stays. Dealing with a rotating schedule of non-specialist doctors or worse yet, the interns is not how you handle a complicated illness.
So sorry for your loss. Believe me, I can truly understand what you're going through.
To all who posted answers here, Thank You! Your answers have given me renewed strength, courage and understanding to face the next few months (weeks?) in my own life.
I discussed Hospice care for my husband 3 months ago, but declined; then, 2 months ago, I decided it was time. This decision came after discussing his condition with three different doctors. He has Lewy Bodies dementia. Three years ago he had 5 by-passes & open heart surgery to repair a valve. That surgery contributed to his rapid decline into dementia. His entire life was built around the training he received at West Point Military Academy and his service as an officer. He was trained to look at any situation, review the options and make a decision that could affect hundreds of lives under his command. He can no longer do that kind of critical thinking and is terribly frustrated as well as having physical discomfort. I hate to see him like this and can't really imagine his own frustration. I have been asked by his doctors if I was prepared for the end of this situation. Already, I feel as if I have been attending a 3 month long funeral. Currently, I am still taking care of him as well as I can. I admit that I can speak of this situation only in a very logical, clinical manner regarding his care. Once I allow the emotion of the situation to creep in, I am lost... just can't even talk about it.
In addition to my husband (83 years old), my 89 year old mother had a stroke two years ago and now she also has dementia. She refuses to cooperate with Hospice people and insists on remaining in her home so I am essentially maintaining two households. I know that her time, too, is short. She and I were always very close, so this too is difficult. I check on her by phone twice a day and visit her home several times a week. This is becoming more difficult because I am no longer comfortable leaving my husband home alone for more than a few minutes.
Needless to say, the quality of life is not very good for either of these two people that I love very much. I try to focus on their feelings rather than my own sense of loss. There will be time for that later. The answers posted here have helped me cope with my own current feelings as well as the days ahead, knowing I am doing all I can. Will the guilt show its ugly face? Probably so. But now, at least, I feel more prepared to face it.
Thanks to all.
You ARE doing all you can. You are being there and supporting two of your most beloved humans as they transition on from their lives here on earth with you.
I hope you can find peace with what is coming at some unknown time. I hope you can feel relief for them that their suffering will be over. But, for now it is one day at a time.
Can someone sit with your husband here and there so you can run over to visit your mom without feeling so much pressure about not leaving hubby alone?
This is part of our lives, but not the easy part. Deep breaths and take care of yourself. Might want to set up some grief therapy since this could be very hard to lose these important people.
Regarding hospice for those of you displeased, please remember that you have the right to change hospice companies should you not be satisfied, but remember, a bit like daycare providers, you will never find someone to care for your loved one like you would care for them. I had my 89 year old mom with a hospice company who made me feel like she was merely a number and she is much too precious to be just a number. I have since moved to a smaller hospice company which has the same care and spiritual values that I have and am very pleased. If you are unhappy, take the time to interview hospice providers, it’s a big moneymaker, and find a provider who’s values and care align with your own.
Blessings to all of you amazing caregivers!!!
BEcause once you do, it is MUCH HARDER TO FORGIVE YOURSELF.
I think there are more of us in this pool of guilt than we realize.. And the thing to get us out of this pool is to forgive ourselves... I find that hard for me to do that.
So, please, don't feel guilty. This was not your fault.. They are the professionals. Perhaps, it wouldve been harder for you, if he had died at home....NOt your fault...