For those who have used hospice care at the end, how did you finally overcome the feeling of guilt?
Mom has been on a steep downhill trajectory for the last couple weeks. She had been losing ground slowly for months...but this sudden downhill drop started about 2-3 weeks ago, and seems to be accelerating. This past week she lost the ability to walk. She can do nothing for herself now. She sleeps more than 20 hours a day, is losing weight at the rate of about 3 pounds a week! She was 134 in March...last week weigh in she was at 109. She simply will not eat. Even drinking is becoming more of an issue. Cannot get boost or shakes made with instant breakfast in her any more either. The doctor admitted he doesn't know why and he has nothing more to help. Hospice has been called. I have increased the caregiver hours and brought in a second one to help in moving Mom....it is a 2 person job now. Hospice really doesn't have a role here yet. But, they are providing nurses and cna when needed...and showers 2 times a week. They are also providing all of Mom's prescriptions at no cost....and medical supplies and equipment. And..no more trying to get Mom into the car for a doctor visit..they will come to her. I am not kidding myself. I know this is the final path to the end. Yet, I feel guilty. I know there isn't anyway to be 40 years old again. Yes, in my head I know that no one gets out of this life alive. Yet, I feel guilty. For those who have been down this road. How did you finally overcome this feeling? When my Dad died last year, it was quick and no one really expected it. I didn't feel this guilty. I knew his final months at home were among the happiest he had had in years. For Mom, this has been a painful journey for her. The stroke took so much of her life quality away from her, and now this slow downhill.
My MIL came home to our house at the farm from the NH. She was going downhill and she knew it. Hospice was called in by the doctor. At first I was very hesitant about the morphine and then halidol. But she was at peace. I wanted to understand about not wanting food anymore. I read up on it. The hospice nurses were so nice. My MIL had dune nieces and nephews and daughter in law to come help us. We all worked together. In the end I gave her the last morphine dose, turned around and my husband was sitting by her side holding her hand when she passed. We prayed and called the ladies from hospice. They cleaned her up and did everything for US from that point on. They have a Chaplin that still checks in with us a year later. At first I had horrible guilty feelings like I killed her with morphine. Those feelings will pass and you know this was a most loving ending. A year later and we are at peace. It may take some time but we we're so glad to have her in our home. Sending you my love darling.
The beginning of her second year in the NH, she had a small stroke. I re-enrolled her at that time. 6 weeks after this she had a larger stroke and passed within days of this.
I never felt guilt at all. Sadness yes as I knew that soon I would lose her. Hospice was a Godsend for my brother and I,& my mother. She was in a NH for 15 months.
I also signed the hospice papers for my mother. I'd never heard her talk about hospice, but I had heard her say she had lived a good life and she knew she would die of something. Having had hospice for my husband I had no hesitation in having it for Mom.
Do you think you might be confusing other uncomfortable feelings for guilt, as others have suggested? Guilt just seems so in appropriate.
One of the things that may be confused with guilt is "compassionate fatigue." I'd explore if that might be going on. It sounds like you have really been working around the clock for your mother's benefit. No doubt there is exhaustion. I hope you can come to terms with the fact that you have done a good job and find peace.
It was a most blessed site to see him relaxing and he told me that had he known the pain would go away, he would have chosen Hospice sooner.
I discussed everything with my Dad all the time - it was his body and I felt he should get to make the decisions. I had to explain things several times but I always made sure he finally understood. When the time came and he saw my Mother again for the first time in 7 years, it was worth everything - his whole face just glowed.
I'll be honest - lots of times when I read posts about feeling guilty, I just don't understand why the person feels they have anything to feel guilty about.
I've said it a number of times here but I want to repeat it for you, sweet Katiekate. Because from everything I've read in the posts you've made - you've been a wonderful, caring, thoughtful, smart daughter to your mother. You are the same as a contributing member of our community here.
So what is it you're feeling guilty over? As others have said here before me - it looks like you feel that calling hospice is an admission of no hope - giving up, and acceptance of your mothers death. Honestly, when it really comes down to it - why is that the wrong thing?
As you, yourself say - death is inevitable. Death comes to us all. Constantly battling with it can't turn back the hands of time. But it sure as h*ll is hard to look death in the eye - especially when it's coming for someone whom we love.
But I think it's important to recognize the difference between feeling bad and feeling guilty. You have done nothing to create what's happening to your mother - time, age and "life" is doing that. And even that, is just running its path - its eternal circle.
So now your mother is at the end of that path and you have been bravely walking it along side her. As you clearly see you've got a couple of choices.
Using my "path" analogy you can steer your mother off the path into what's most likely to be a rough and difficult trail. Or you can walk in front of her - kicking away the rocks and clearing away the underbrush. But one way or the other - your mother is going to reach her destination and complete her journey.
Hospice isn't for everyone- and by everyone I mean everyone else. We see posts about people being unhappy with the hospice care. I think what they're really unhappy with is the death of their loved one - and they need to blame someone. When in all likelihood the result would have been the same - with or without hospice.
But the difference being the painful process of death being handled in a way that provides the loved one whatever they need to be without pain and without anxiety. And it will support YOU by ensuring people well versed in what's happening with your mother - that they take a great deal of the weight off your shoulders enabling you to deal less with the process and more with the person. And isn't that what's important- what you would want for yourself when your time comes?
So no, Katiekate- you shouldn't feel guilty. Feeling badly? Yes, that's only natural. It would probably be unhealthy if you didn't feel badly about what's happening with your mother. But please try to remember you are not doing anything wrong- nothing you need to feel guilty about. If anything, you should feel grateful that you have one more opportunity to do something for your mother by helping her to gently transition to whatever it is out there that comes after - at the end of the trail.
Is the guilt stemming from you wishing you would've done things differently before the stroke or before its effects kicked in? I have this guilt. For example, I wish I would've traveled more with Mom before the immobility portion of her stroke effect took hold. There are ways to travel with a handicapped individual but I'm an only child and I have no one else to help me so traveling alone with Mom wasn't a safe option for her.
I had the most wonderful CNA that would come in and 3 times a week would help me give him a shower. And order supplies. And provide me with some conversation while we sat at the table having a cup of tea while my husband had breakfast. That was the only conversations I would sometimes have all day since my husband was non verbal.
When he became bed bound the sponge baths were wonderful. I somehow could not do it as well.
I got the supplies and equipment that I needed first a Sit to Stand then a Hoyer Lift. A wonderful Hospital bed not tom mention the medications that were delivered to my door..
The Nurse was kind, caring and always easy to talk to. Social Worker and Chaplain were on my "team" as well.
Guilt...I have none.
I watched the man I loved go from a Vibrant, kind, loving husband and father to a shell of a man over the course of 10 years.
To be able to keep him home, comfortable, with a few great caregivers I had and Hospice helping that was a Godsend.
am I sad..yes (but I do not wallow..he would not have wanted that at all!!!)
do I wish that he did not die, yes
do I wish that he never got Alzheimer's, yes.
but do I wish that he were still here with me the way he was..no.
By calling Hospice you are doing the best
No one can change the fact that we will die
You can change how or where. (ok sometimes you can't..)
The goal of Hospice is to keep a person at home, surrounded by family and loved ones, relieved of pain. No feeding tubes, no intubation..to allow the body to finish the job of living and part of that is dying.
It is a difficult journey but one we all have to take.
Use your Hospice team to guide you along this journey, like any you will need help along the way.
Hugs and good luck. I would not have made it without support groups.
Hospice is there to provide support and help--they do NOT hasten the dying process, simply make it a process of peace.
You have NO NEED to feel guilty over providing a loving, peaceful, pleasant passage into the next life.
We were ready to call in Hospice for Mother last November. She rallied and we didn't call. I know that when it's time, we'll call them and they will be as lovely as they were with daddy.
This is an important point to be made here: I lost one of my grand mothers with no warning-she simply got up one morning and laid back down and passed. We were on excellent terms and I have no regrets over ANYTHING with her. We don't often have that "warning" of impending death. I do not get along well with my mother, and so I try really hard to make sure that I don't go away angry when I've spent time with her (easier said than done) partly because I DON'T want to have any guilt.
In time, after this is all over, and you have grieved, you will be grateful you provided mom a gentle passage.
I was relived when my Mom passed and sad, too. I had no guilt, as she had put a lot of this upon her self by being so stubborn, denying her age and that of my Dad.
Later when my Dad passed, I wasn't ready, and I had some guilt thinking I should have noticed a pattern of his coughing when eating. He had passed quickly from aspiration pneumonia. But I also knew he wanted to be with his love of his life, my Mom. I learned from this forum to tell Dad that it was ok for him to leave and go to Mom, etc. Thus the next morning he passed.
Sometimes guilt is actually frustration if one's parent refused to do what would be best for them. For me, I couldn't convince Mom that she and Dad would enjoy moving to Independent Living, as their house was becoming too much work. But my Mom still viewed me as being 30 something instead of 60 something, big difference on what I could still physically do for them.
Now that I look back, those phone calls Dad made to me to see, for example, if I could climb up the ladder to get to the attic. Yikes, that ship sailed years ago. Really wished Dad would have told me it was Mom that wanted HIM to climb that ladder, and he knew he couldn't. Same with other things, like driving my parents places. Dad would say he would start driving again, now after the fact I realized once again it probably was Mom who wanted to get to the grocery store for a sale on can corn 5 for $1.00. That is where some of the guilt I feel.
As for using Hospice, I had zero guilt using them, as the group I had for both of my parents were outstanding. Having both parents have a pain free passing was so very important.