to those that have lost loved ones only

My 14 year old son is on hospice. To those of you that have lost loved ones, is this something I will be able to handle at home? I've heard of peaceful deaths, and some not so peaceful. We've been on hospice almost 6 weeks now, and I'm afraid of the end. If you don't mind, what are some of your experiences?

Hi There:

I am so so sorry about what you and Justin are going through right now. My heart just aches for you both. I lost my Dad, who was in his 50's, in 1984 to Non-Hodgkins lymphoma, and he died in the hospital.  In those days, there were not as many "choices" as there are today.  In my situation, I knew my Dad was near the end, but not THAT near as he was conscious and talking to me just an hour before. My phone was ringing when I got home to come back, and he was gone.

I also lost a dear friend last year to bowel cancer that had spread to the spine and with Tom, also in his early 50's, he was in good spirits and even ate breakfast on the day we lost him.  In the afternoon, he was having trouble breathing and just slipped away, which also was very unexpected and happened in the hospital.  If this had to be, it was a blessing that it happened so quietly, quickly, and peacefully.

If at all possible, I would prefer to have the person I love be at home, in familiar surroundings.  My sweetheart has had his 3rd recurrence of oligodendroglioma in the L. frontal lobe.  He was in remission for almost 3 years, after surgery and radiation.

 After a wonderful trip away in Mexico this past January, in February, the tumour had returned after the appearance of some symptoms that I thought were totally unrelated.  Luckily he is responding to Temodol and is a very strong man of 56.  One day, we will be facing "the end", but only the Lord really knows when that is going to be and of course, we all hope it will a long, long time in the future.

Again, if I had the choice, I would have the person I love be at home if it were possible.  You are not alone; there are thousands of people on this site that are right there with you and Justin.  Most important of all, the Lord is with you.

Brenda and John

I lost a sister to brain cancer last year.  She died at home.  She only lived 2-3 weeks after going on hospice, and was sent home from the hospital after they told her there was nothing more they could do.  Hospice set up a bed in the living room, and family stayed at the house in shifts with her husband to make sure there was someone to help out and to sit with her.  I must say she went downhill very quickly and I don't know if she just was making peace with what was happening to her or if she lost her faculties that fast, but she totally withdrew into herself and became non-responsive within a few days.  The last few days she was very restless and would sleep on and off.  She was mostly confined to the bed.  And in the very end, the raspy breathing until it was over.  I hope this isn't upsetting you.  Others have had VERY peaceful passings, some quick, and some long and drawn out.  It's hard to know what to expect.  Have you checked out www.brainhospice.com? 

 I am so sorry that you are losing your son.  He is much too young and I can't imagine how devastating it is to lose a child.  I just cannot comprehend what you must be going through.  Take care.

First, let me say, I'm so very sorry - this isn't fair - he's just too young!

Secondly, once my Mom entered the nursing/hospice home it went pretty quick - 2 week and 2 days.  We stayed with her there 24/7 but they were wonderful.  The first week she went from the hospital bed to a recliner chair - talked, ate alittle.  The last week my Mom didn't do much at all - she moved around alittle but didn't respond much or interact.  She would answer with a yea, no, or OK - that was it.  Her last day was pretty uncomfortable - she was by then on the morphine dropper by mouth every 2 hours.  The last night she slept and had the very deep breathing and sounded raspy and I knew the time was close.  My Mom passed at 6:20 a.m. and it was very peaceful.  My sister and I both were right there with her.  Oddly enough, it was the first night that both my sister and I stayed with Mom - before that we took turns, 2 on and 2 off....we told her we were both there - talked to her all night before she died and it was almost like she was content that both of her daughters were there with here and it was okay to let go.  She fought the fight but that damn beast finally won.

One thing I would like to tell you....please tell your son how much you love him....tell him that he's been a wonderful son and tell him it's okay to let go.  I was told that by many and was so scared to do it but finally did and I feel so much better now - I wanted Mom to know just how much I loved her and what a wonderful job she did at being a Mom - I'm sure it made her happy too!  Gosh, I miss her!

Hugs to you my friend -

Rita

I am so sorry for your situation. I think you have probably been through the worst of it. My wife passed away in February, I felt there was a strength and dignity in her that amazed me and will continue with me foreever. I felt she was always aware of being there even though she appeared to be sleeping most of the time. There was a bit of agititation that was controlled by a strong anti-anxiety drug. Otherwise she was generally at peace. There will be ups and downs but your son will know where he is at and let you know how he feels. Listen to him. 

The last thing she said to me was "We have to make plans". She had accepted everything and was ready for the next step. Physically she did not have the energy to speak for a couple of days after that and slept the whole time. Eventually the breathing gets constrained and then stops altogether. There is no pain or anguish.

My heart goes out to you and your family.  This is a horrible disease.  I lost my husband (40) in May.  He had been under hospice care for 6 months.  They helpled me in so many ways and his passing was peaceful and in our home the way he wanted it.  They were able to keep him comforatable the last couple of days.

I believe God will give you the strength you need to make the best decisions for you little boy.

Your family will be in my prayers.

 

 

I'm so sorry to hear about your son. I lost my mom 8 months ago to GBM. She passed in hospice, she always thought it was strange for people to pass at home. Regardless of your choice, I do believe your son will go peacefully ( when the brain stops functioning properly, it feels no pain). I will pray for you and your family, I can't imagine all you are going through. I still miss my momma every day. God bless you, Maria

 

On 6/27/2009 justins mom wrote:

My 14 year old son is on hospice. To those of you that have lost loved ones, is this something I will be able to handle at home? I've heard of peaceful deaths, and some not so peaceful. We've been on hospice almost 6 weeks now, and I'm afraid of the end. If you don't mind, what are some of your experiences?

I lost my husband in April of this year. I read this post 4 times before I could respond because it hurts so much to know that a 14 year old has to go through this and a Mom has to lose her precious son. I am so sorry that you and he and your family are going through this!!

Home health and hospice was so wonderful with my husband, but we are the ones that gave him the meds. They prescribed them and told us how much to give him. He declined quickly at the end (which was only his second dose of the heavy duty temodar). He was only diagnosed five and a half months before we lost him. He was doing well until the last two weeks, when he went down hill very quickly.

He was not able to walk, eat, or drink for the last 4 days. He was in a hospital bed in our livingroom with the tv on his favorite channel with the birds singing outside the window.

It was very peaceful for the past 4 days, he slept and his breathing changed many times at the end....each time we thought this was the end. I climbed right in the hospital bed with him and cuddled with him, which I wish I did more because that seemed to help him be more at peace. I also told him that it was okay and that we would miss him so much but we would be okay. It is still so hard to talk about.  

I still get so angry at the brain tumor for taking him....

My prayers are with you and your son.

-Diana

 

 

On 6/27/2009 justins mom wrote:

My 14 year old son is on hospice. To those of you that have lost loved ones, is this something I will be able to handle at home? I've heard of peaceful deaths, and some not so peaceful. We've been on hospice almost 6 weeks now, and I'm afraid of the end. If you don't mind, what are some of your experiences?

 

Dear Justin's Mom,

I am so sorry about your son's diagnosis. I have a 15 yr. old son. I can't imagine. It makes me cry, why? I wish peace for you and your family and healing will come in time.

I did take care of my mom at home with hospice, unfortunately 5 days before she passed I noticed a different response to the meds that hospice was giving her. It was a lot of morphine and she was not sleeping for days. I ended having to take her to the hospital emergency room. The morphine (which is hospice medicine of choice) was not helping my mother. Why? The hospital ran tests and her kidneys were failing due to the cancer. Morphine gets processed through the kidneys. The hospital put her on delauded *sp.? which processes through your liver. Hospice unfortunately did not run tests (they don't normally do that) to know that the morphine was defeating the purpose. They just kept upping her dose. The board at our Hospice reviewed our case later on and made some changes in treatment of patients. She passed peacefully with me holding her. I would do it all over again. Hospice was wonderful at training me to care for her. I recomend hospice at home if it is possible. Families are able to spend more time with their loved ones. It is difficult but hospice does go out of their way to help you care for them at home. It's more comfortable for the patients as well. I was worried that my living and dining room would upset me afterwards, but I redecorated with some of her special belongins added in. I just love reading quietly in there now and I enjoy having my family for dinner as we talk about special memories of mom.

My prayers are with you and your son. God bless.

Kim

Justin's Mom - my thoughts and prayers are with you and Justin.  I'm so sad to read your post.  My 20-year old son Seth was diagnosed earlier this year with GBM.  I cannot imagine the scenario you have before you today, with your little one, much too young, so sick.  God will take care of him.  I am thinking of you both.

Patti