My momma passed on the 24th of February after two years of suffering with Alzheimer’s. It was heartbreaking to witness her death and I was and still am devastated. If anyone knows of any support system to prepare family please share
We in America are so removed from death and have so little knowledge of it that shock is the response we so often get when it occurs in the home, even with hospice support available. I think that Hospice, now so hurried and no longer the support they once were is not doing the great work with preparing family for the expected changes in breathing, in mucus clearance, in confusion and sometimes picking at things, in cooling extremities and restlessness. There are medications to be given for ALL of these things but hospice is so seldom "at the bedside"and doing now so little education that it makes it so difficult for the family members. I am so very sorry that this was your experience and I hope you will tell your hospice about it. They are supposed to do aftercare for you, which these days is a silly phone call in which they say "How are you doing" and want the reply of "OK" so they can get off the phone. Tell them what bothered you in what you saw. Ask them why no one told you what to expect and what to do about it. Again, I am so dreadfully sorry. Sorry for your loss, and sorry that your experience was so hard. It isn't like the movies, at all, is it. I am so sorry you didn't have more support. Do ask hospice for referral for support groups. You will find you are not alone when you join a support group online or in person.
You are so right AlvaDeer, hospice is not what it once was. Especially in the home. Folks are pretty much left to themselves to figure out what exactly is going on. I could probably write a book about how hospice failed me and my late husband while he was under their care in our home for the last 22 months of his life. Especially when he started his dying process which lasted 41 days, and they couldn't get his pain under control, yet left me to deal with it all by myself except for the one hour that the nurse would come each day to change his pain pump. And there was actually one day when my husband was in clear distress, and his nurse said that they are not to leave when a patient is in any kind of distress, so she called her office and told them what was going on, and could another nurse take her next patient so she could stay with me and my husband, and she was told no, she would have to leave and go to her next appointment. She felt terrible, but left she did, only to leave me all by myself with my poor husband in great distress and me not knowing what to do to help him. You can't make this shit up. I best stop as it's getting me riled up again and my dear husband has been dead now for 2 1/2 years.
Most cities have grief support groups, called Grief Share. They are often held at local churches and on Zoom. You can Google to see if there is one in your area. It is hard to witness someone we love die, when their passing is not peaceful and it drags on for too many days. This I know all to well and I swear I had PTSD after witnessing what my dear husband went through in his final 41 days. I was fortunate however to have the continued support from my local caregiver support group, so I never personally needed to reach out to any grief groups, but they are there if you need them. I am sorry for the loss of your mom and that you're having such a hard time. Praying that God will give you His peace and comfort in the days, weeks, and months ahead.
Sorry for your loss and I wish you peace during this difficult time in your life.
Again, I am so dreadfully sorry. Sorry for your loss, and sorry that your experience was so hard. It isn't like the movies, at all, is it. I am so sorry you didn't have more support.
Do ask hospice for referral for support groups. You will find you are not alone when you join a support group online or in person.
I could probably write a book about how hospice failed me and my late husband while he was under their care in our home for the last 22 months of his life. Especially when he started his dying process which lasted 41 days, and they couldn't get his pain under control, yet left me to deal with it all by myself except for the one hour that the nurse would come each day to change his pain pump.
And there was actually one day when my husband was in clear distress, and his nurse said that they are not to leave when a patient is in any kind of distress, so she called her office and told them what was going on, and could another nurse take her next patient so she could stay with me and my husband, and she was told no, she would have to leave and go to her next appointment.
She felt terrible, but left she did, only to leave me all by myself with my poor husband in great distress and me not knowing what to do to help him.
You can't make this shit up. I best stop as it's getting me riled up again and my dear husband has been dead now for 2 1/2 years.
It is hard to witness someone we love die, when their passing is not peaceful and it drags on for too many days. This I know all to well and I swear I had PTSD after witnessing what my dear husband went through in his final 41 days.
I was fortunate however to have the continued support from my local caregiver support group, so I never personally needed to reach out to any grief groups, but they are there if you need them.
I am sorry for the loss of your mom and that you're having such a hard time.
Praying that God will give you His peace and comfort in the days, weeks, and months ahead.