Gmb Followed By Stroke

It's been quite a while since I've posted anything on here but find myself in need of help. My father dx 8/29/05 GMB suffered a stroke around the middle of Jan. The docs said it was a combination of the surgery, radiation, chemo that left his vessels weakened and contributed to the stroke, age of 65 also played a part. My concern is this, he never recovered from the stroke, it's left him completely bedridden, unable to stand or even roll over in bed without assistance. To me it seems maybe the cancer has progressed over the last few months. Not being able to continue with any chemo or follow up appointments we really don't know where we stand. But he becomes more and more distant daily. Looks as if he isn't seeing you but looking thru you. Isn't communicating at all right now other than a slight shake of the head for yes or no. He is sleeping most of the 24 hrs. in the day, he's awake to eat a bite or two and a sip of water or juice then falls back to sleep. The amazing thing to me in all of this he still does not show any signs of pain, we've asked repeatedly but always he says no. I know he probably not going to be here very long so we hired nurses and brought him home to spend what time he might have around his family. I know I seem to be rambling a bit but I'm not sure what I can do next. No one can give us a good answer on exactly what's going on or what to expect because of no recent tests. What do we do? Day at a time I know is the best approach, but guess I'm trying to get myself to the point of accepting what I know is the outcome of his disease. Thanks for listening.

Rhonda

Hi Rhonda,
Check out brainhospice.com there is a lot of good information on what you are facing. We have just had to call hospice in for my dad. They are an incredible help with questions and just to lend you an ear. They also send in nurses to monitor what is happening and will help you with pain meds if it comes to that. We have bath aides come in a couple of times a week to help with the bathing. This is a great break for me. Hope this helps.
Dawn

Dawn,
Thank you for your response. We do have a great hospice in our area that we are using. They have been a lot of help in providing everything for dad that he might need while here at home. We also have NA and an RN coming in 2-3 times a week to help. They have been a great source of information as well as help. I have read the website you mentioned and have even printed off a lot of the information from this. Even though most of the information does come from people that have been through this or are going through, guess I was just looking for a little more insight. Good luck with your dad and I hope things go good for him and you and your family.

Sincerely,
Rhonda

I am so sorry to hear about your father. I have recently have gone through this sitaution with my own father. Your descriptions sound so similar.

I know it is really diffuclt not to know what is happening and exactly how things are progressing. My father was bedridden for a long time (actually since dx 10/4/06) but also not in any pain at all. we asked him all the time. Though this disease is truly horrible --do I think the absence of pain was a true blessing. When the pain factor is out of the way I felt there was more energy for him to connect with us.

It is so good that you were able to bring him home. I am sure not being in the hospital setting brings him a great measure of confort. You are so right in enjoying every moment and savoring the time you have each day. though my father could not communicate in his later stages I know he heard everything..so keep talking to him.

Our doctor and nurses were very helpful in helping us in the last months of his life when we were unable to take him to his apointments. in letting us know how to manage pain if it came up--but thankfully it did not. Also if you have concerns about where you are in the process take a look at this website brainhospice.com -I found it very helpful.

I also found a doula for us --which is a non medical person to be a companion for the dying and to ease the transition for the patient and family. Our doula was well trained and this was helpful for us also. I don't know if alot of communities have them. ..My fathers caretakers were me and my mom I was 500 miles away but home every other week. She came many times and crocheted him a comforter blessing every stitch. I know her presence made him more at ease.. But my father often made connections with new people whereever her went. If you would like more ifo on this or anything else related to end stages. Please email me back. I would be happy to share on experiences in the final stages.

Take care and stay in touch. You and your family are in my prayers.

Christine

I appreciate you writing and I know the loss of your father must have been very hard for all of you. It's very comforting to know there are people like you that are willing to talk about your experiences to help the ones like us who are entering into the "unknown". I have read the brain hospice website, many, many times. It's nice to get the information but entirely another to be able to process all of. There have been days that I've been very comforted by the information I've found there and other days I've had to stop reading because the fear of what is yet to come overwhelms me.

I don't have much faith anymore, after everything I've seen my father endure these last few months, I have and still do question God. My fathers faith and devotion to God has always been very strong and I know that's how he got through his illness while his mind was still good. But I still have to question why does this horrable disease have to linger on, stripping the ones that have it to nothing. Dignity and quality to their lives they loose. Makes it hard to understand or even cope.

I continue to hope that he will peacefully slip away, no pain but peace and restful sleep at last.

Sincerely,
Rhonda

hi there honey

I know what you mean about feeling you're losing faith. The words you spoke could have been mine too. My father had an undying faith. He was a lecter at his church several times a week. Even after his illness when he was confined to his wheel chair --my mom would get the him on the bus and wheel him into church and he did read a few short readings from his chair.

I am so glad he had such a faith because I prayed alot but really struggled. but some days I did see some blessing beneath all the sadness and grief. My father would do anything for anyone but I often I think he felt as if he was not as loved. Over the course of his horrible illness --among all the challenges and the hardships of everyday things- He realized how much and the depth of which people really LOVED him. That we would do and did anything for him. He was moved so many times to tears for the thoughtfulness of people. he also struggled with frustration. I do believe there are often times blessings disguised in unfortunate packaging.

I know it is so hard but do try keep your eyes and your heart open to these special messages as well as the challenging.

Everyone is different I know but I wanted to share with you that my father's passing was so peaceful. I hope this may give you some comfort. He had slowed everyhthing down gradually the speaking then his eating and drinking on saturday. He fell asleep on saturday night and did not wake up again. He was on Rozalin(sp?) to ease his breathing and had been having nebulizer treatments (easy and non invasive)to clear up any congestion. His breathing slowed and he was peaceful thru to the end. I think a big piece of his peacefulness was due to good management of his meds.. clearing up the breathing and helping ease it.

I am sure it gives your dad great comfort to be at home and have all of you around. I hope things get easier for you and for him. Try to take things day by day or hour by hour on those special days.

Take good care and be well
christine

I do appreciate your kind words and sharing your fathers passing. It's comforting to know that there is hope that my fathers might be peaceful as well. I do pray for that, with his faith and the life he has lived makes me hopeful that God will not let him suffer in his final days.

It's a roller coaster the last few days, I can see the distant look in his eyes, he's here but not really. We are sitting with him around the clock to make sure he is comfortable and more than anything peace of mind. I couldn't bare the thought if he were to pass that he was alone. He does seem much more content since we brought him home last week, his sleeping seems much more peaceful, so I know in my heart he knows that we are here and that he is home.

Thank you again Christine. I only hope I will have the strenght and courage to do what you have done by reaching out to me and be able to offer someone a little comfort when they might need it. One thing this illness has taught me, passing on the experience, the good and the bad can be very helpful to others that are just learning what GBM is all about.

Take care,
Rhonda

Dear Rhonda, I just wanted to let you know that I am thinking of you and your family and keeping all of you in my prayers. My heart is heavy with saddness as I read your posting. This is the phase of this disease that we fear the most. How wonderful that you are being courageous and strong to be there with your dad. I know what you mean when you say that you don't want him to be alone. Even though he may not be verbally communicating much, he is listening to everything that is being said to him. I am very thankful that you are able to have him at home with hospice care. This is what we hope for my dad too. It is really the unknown that we worry about and the fear of our dad's being in pain. Talk with the hospice RN and your dad's dr. to get an order for pain medications should the need arise. That way you can keep your dad comfortable. During my grandma's final days, she was noncommunicative, but we could tell that she was uncomfortable because she would get restless in bed and her feet would be moving in a fidgety fashion. Sometimes, health care providers like to postpone the use of pain meds because they tend to alter a person's wakefulness and responsiveness. I too have read and re-read the brainhospice.com information and printed it off. It is the best sourse I have found to "prepare" for the unknowns that lie ahead. I know that it is an extremely difficult time. This must be the ultimate understatement I know. I too go thru days/weeks/months when I question God. It is okay to do that. God is walking this journey with you, your dad, and the rest of your family even if you don't feel his presence. He will help you to be courageous enough to be there with your dad. He will lift you and carry you when you feel tired and weak. You are an amazing, loving "daddy's girl," Rhonda, and your dad loves you for being there with him during this time. He knows how hard it is for you. He loves you for the loving daughter that you are. Keeping you in my thoughts and prayers, Rondi

Dear Rondi, Thank you for your kind words. It is a difficult time to say the least, the not knowing and uncertainy of it all is the hardest. Wanting to keep him comfortable and without pain is my biggest concern. Though he is not complaining about any pain I have to wonder and hope we will be able to tell if anything is going on in that area. It's amazing to me that the first week he was home he seemed a little better, more responsive, talkative and eager to help us in anyway he could.....Now this week we've seem to have turned a corner, he's not talking and is not as alert as last week, there's a marked difference.

I'm not going to say that any of this is easy, reminds me of my children when they were to little to talk, not knowing what's going on or what they are feeling is the same, you feel helpless. But I have no regrets at the decision to bring him home, I wouldn't change a thing and I know we made the right decision for everyone to do so. Maybe later I'll be able to accept God's plan for dad and even us, but I let Mom keep up with the praying.

How are things with your dad? How's he doing? Is your mom holding up ok? Keep me posted on your dad and how everyone is doing.

I appreciate your encouragement, it means a lot.
Take care,
Rhonda

You are so strong and dealing with this so well. I know it is so hard. Knowing that you have been so brave and not been sacred away from a very difficult and frightening situation to be there and give your all and love him so much. That means SO very much for him and for you.

I can tell you that these are the things that bring me the most comfort now.
take good care
christine