Can this actually be happening this quickly?

• By 7monthsoutwife
• Reply 3452016
• October 12, 2012 at 6:55 am
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rough omg same exact problem this week hubby falling asleep constantly. Scared its and end thing but not sure becaseu he was sort of ok last week thogh tire. ALso swallow issues im getting home health here asap (had to scream at the gp to get it) for a swallow eval, just everything slowing down increased major neruological tics and mannerisms and confusions, as well as increaing porblmes with the heniparesis and impossible transfers. Cant figure out though how much is ue to sleepiness or lack of the brain telling the body what to do versus actual weakness. HTsi i think the pt can test out, sor t of. and I demande d they try to come to the house asap tomorrow or monday to do a reveal this husban of mien progressed to cane walking within 2 moths after 2 onths in the hospital rehab ceter and was talking away by sugust. the speech suppodely can wax and wane but this sleepy thing is scary and I worry to becasue i thoght i saw somewher it was assoicated with end satage. IM emailing myu neruo sugeon to see what he says, its too hard to get him there because of tranfgers. well be very viilant very very vigilant and try to cover all the base s I guess. The syatem at this point is seemicly fragmented, and eveyrone will have a differnt opinion. Im hoping poel who have the unfortunate epxerience of seeing that as an end stage suytomwill let us know. Or peple who have seen it as just a stage in a regressive backslide will tell us that as well. well see. This site may have more poele who have actually seen that. I hope so. Its so hard to get answers on brain tuours, isnt it, especially the dying details. we had to work for those all along so we could be prepared. I think the data when they study it is a bit unclear with autopsie s and causese of death and so on. BUT the smhptom progression before an anctual death would cerainly be helpful. I actually try to read other unfortuane poeles porogressions on this site becuase it gives a varity. I did see the sleeping thing mentioned, bt it was in childrem. well see what we find out. NANyone, help. And then what, keep having home health until they recomend pallative care. This husand has no issues with his vitals, but I could see the feeding thing needing possible nursing care if we get to too much swallow issues wiht aspitration, bust IM not sure what we can get or when. HSOuld I just wait and ask home health nurse for example what various routes people take. we have a child in our home and dI cannot see doing anyh sor t of hospice unless its nothing like what i went thoghwith dad and his parkinsons. Awful for me,w ould be horrible for my child, she would never be able to sleep here again. Dont know if I shold call haspice for soeme of the choice and how do pele mange this stuff Or do you just wiat for a crisi and fly them inot the hopsital to die? maybetheres no predicting and you just do the best you can. well be vigilant. ILl friend you.Meanwhile hang in there really do your best its all you can do.

• By clerky96
• Reply 3452213
• October 12, 2012 at 8:34 am
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Dear 7monthsoutwife, I am so sorry you and your child are going through this. My children are grown, but I worry about what kind of an impact this is having on our 7 grandchildren. They have seen his constant decline and I am so afraid that this is the way they will remember their grandpa. He used to take them fishing, golfing, and play ball with them. All of them but one 5 year old are 10 & older, so hopefully that won't happen. It would be really hard to still have a child at home. We have hospice, but they only come for 1-2 hours each day. It is a great help with cleaning him up (although he really is not dirty) and changing the bed linens. I just think maybe it will make him feel better to be clean. We have a hospital bed in our living room right now, but I just couldn't bear to have him off somewhere in a room alone. At least this way I feel like he is still part of the family activity. I am 64 years old, and have found out that I am physically stronger than I thought I was. Emotionally, I have good days and bad. But he is truly my best friend and I don't know what I will do when he is gone. He was my high school sweetheart; since grade 11. As you have read on here, somehow we persevere and do what has to be done. From everything that I have read, sleeping almost all the time is a sign of rapid progression of this terrible disease. This website, www.brainhospice.com, has a timeline of symptoms to know when the end is near. It is difficult to get Don to eat, and taking his pills is getting very hard to do. He clenches his teeth together and doesn't realize he is doing it. I think his time here is coming to a close and I have to find the courage to let him go. I know it is what he wants because he voiced it many times while he was still able. I promised I would not do anything unnecessary to keep him alive and even if I am breaking inside, I know it is what he wants. Good luck to you.
BTW, my name is Donna and my husband is Don. The "Don & Donna" has always been good for many smiles from people in the past. I am so sad that soon it will just be "Donna". :,<((

• By clerky96
• Reply 3453399
• October 12, 2012 at 4:09 pm
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Thanks for your reply Abta_maryp. The hospice nurse saw him yesterday and said all of his vitals are still stable. He just finished a 2 week dose of antibiotics, so I don't think he has an infection. Also, even though he is on the max dose of Keppra, he is also on ativan because he was having some partial seizures on his uneffected side. Once he started having those seizures, he started declining very rapidly. The ativan is a low dose, but it also makes him sleepy. But he has been on it for a couple of weeks, and up until a couple of day ago, he would wake and eat (not well, but at least he would eat). Now he doesn't want to wake up at all, and is never hungry. I am having a hard time getting his meds down him, and the Dr has taken away some of them so that he does not have to struggle to get down meds that will no longer benefit him. I read somewhere that when they get to this stage, we want to feed them because WE want them to eat. It said if they don't want to eat, don't make them because their system is trying to shut down. So, I am just doing my best to keep reminding him how much we love him and that we are here for him.

• By yellowangel
• Reply 3456940
• October 14, 2012 at 9:05 am
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I think the hardest thing is for any of us is to let go. Not wanting to eat or drink is the body shutting down, ask the doctors about "forcing" meds. GBM is a terrible disease that takes over and can take over quickly and at the drop of a hat. My Uncle was taken over by this horrible cancer. He fought hard but it was a battle not to be won. He slept and stopped eating. In the end he wanted to end, he was tired and wanted peace. We were able to comfort him and tell him it was okay. In the end it is no longer about our need to hold on, but for them to be at peace and pain free, to be free cancer free. The journey of fighting, meds, daily struggles, and knowing that your loved ones are fighting with you can take alot of the one struggling with the disease and those watching helplessly. Enjoy every day, say everything that you want to say, embrace every moment, and take nothing from granted. Every memory becomes a treasure!

• By misspiglet
• Reply 3459230 · In reply to 3456940 by yellowangel
• October 15, 2012 at 8:00 am
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Dear 7monthsoutwife and clerky96,

I hope I don't upset you with what I write, but I wish someone would have done this for me so I could have been better prepared. My husband lost his battle with Anaplastic Astrocytoma grade 3 (which I presume turned into a GBM 4 in the last few months). Basically he was diagnosed in 2006 and had all the standard treatments, he was really well for 6 years. But then suddenly in February this year one of the MRIs showed slight growth. As he had already had radiation and temodal, NO suggested Avastin. So that's what we did. We started Avastin at the end of May and within 2 weeks I nearly lost him, he went into a coma because he had such severe swelling in the brain (will never know if this was the tumor growing or a reaction to the Avastin). Anyway he woke up from the coma and basically spent the last month of his life in a hospital bed. What happened in this last month of his life is still disturbing and unbelievable to me. It was the end and I didn't even known it, I kept telling him he was going to be ok and we were going to go home, but he just kept declining. He lost a bit of his vision, he lost the use of his right side, he couldn't walk any more, he became incontinent, he was confused. But when it got to a few days before he passed I couldn't give him his meds anymore, he didn't want food or water he hardly spoke and slept for 2 days straight, the breathing was very deep and loud and very distressing. He couldn't cough up his phlegm, but this started dripping out of his mouth as he slept and it smelt awful (sorry but I would have found this helpful and really wish I knew so I could have said more stuff to him etc). It's been 2 months yesterday and I was just sitting here and I thought oh
My God he was dying in that last month and I had no idea. I still can't believe it, I really thought he was going to pull through. So I write this to you tonight and hope you find it helpful, happy to answer any of your questions, but remember everyone is different. Sending you all love and blessings and please look after yourselves the journey ahead gets harder and you need strength to get through it.
Ps my husband was only 36 and we were so in love, I wish I could have had more time with him.

• By Andreas (Inactive)
• Reply 3459758
• October 15, 2012 at 11:19 am
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Well ladies, some of you have said "I wish someone would have told me." I've been telling you for the past 3 months and so have at least 2 other women on GBM 4 related. Most of you have been there a time or two. I've never pulled any punches about what was happening to Andreas during that time and How I dealt with hospice and what they were willing to do and what they weren't. The same with the Dr's.
When the end starts it looks like an ""episode" and in our time of taking care we have seen them before, so at first we think things are going to be OK, but from my expereince this time it was different, and in my heart I knew it I just didn't want to accept it
One critical factor was - the seizures started again after 7 months clear. The first one was barely perceptable but I knew the second it came because he had such trouble with them. He began sleeping more. He ate, but lesser amounts of food. His fluid intake decreased because now he was in a hospital bed and incontinence was an issue. He had lost 90% useage of his left arm and leg. He knew I couldn't help him anymore. He knew. He knew he couldn't go see the Dr. anymore. He knew he couldn't get out of bed. He knew there was no more medicine. He knew there was nothing else to be done. He had seen his sister. He knew everything was done financially. He knew. ALL of this has already been written not only by me but by 1-2 others on the site. The answers to ALL your questions are there laid out for you in black and white. Go WAY back in the pages and read.
When it came it came quickly and now that I look back I'm grateful that it did. From the critical time of being bedridden it took 3 weeks. For Lizbet it took longer, nearly 3 months, for ttree it was a few weeks. It's ALL there for you to see. The effort, the vigilance, the day in day out misery, the uncertainty, the guilt, the disbelief, the families, the end in black and white.
I was going to stop writing that site when he died but people pleaded with me to go on and I've done so just so I could be of service to the ones like you coming. It's a god awful road we must travel and it brought me to my knees over and over but in the end I lived and he died. All the battles were fought with courage but the war was lost. He was gone.
Look at what's in front of you and understand this horrible cancer will not stop until it's taken what it wants. When it swings it's tail and opens it's mouth all the positive thinking and wheat grass and 87 pills a day will not stop it. Pray that it comes swifly because upon reflection it was the best. I hated to see him suffer so. In my selfishness I hated to see myself suffer anymore, but that was an illusion as well, because I suffer everyday now that he's gone. You will too. But I write because I want you to know. I didn't know when I went thru it. All I had was the crazy little "timeline" information.
Lizbet was just a few days ahead of me and i watched what was happening with her. Ttree was the same All we had was each other. There were more but we all happened at the same time and we have written it down for you to see, to try and help you.
Keep writing, keep asking, keep reading, keep loving them the best you can, keep caring even when you want to run away. What does it matter if it's 2 days 2 weeks 2 months 2 hours... the end is coming and.it will be over and they will be gone. You will be left here, living, with a broken heart. If you really want to know go read it.........it says it all, it was written for you. Ty

• By clerky96
• Reply 3459789
• October 15, 2012 at 11:29 am
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Thanks yellowangel and misspiglet for your replies. The last day or so he has gotten worse. He is no longer eating or drinking anything. They are having me give him atropine drops in his mouth to help with mucousy breathing, but his breathing has become faster and seems more difficult. Since he can no longer swallow, his other meds must all be given rectally. Today he is running a temperature of 101.3 and I am waiting for the hospice nurse to come. I know his time is short. I also know that he would not want to live this way, and although I am breaking apart inside, I will let him go. Then the true pain will start. Misspiglet, even our 48 years was not enough time when you are married to your best friend.
Sorry to both of you for your loss, and may you find peace. Thank you for responding to my post and letting me know that I am not the only one who thinks the end just sort of "sneaks up on you and steals the ones we love".

• By clerky96
• Reply 3461020
• October 15, 2012 at 7:10 pm
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Thanks for your response, Ty. Yes, I did go read all of your posts. I guess when it starts happening to your husband, you just can hardly believe it. Whether we have a few more weeks, days, or hours (most likely scenerio), I will be there for him. I will hold his hand, tell him how much I love him and what a wonderful life we have had. Then I will cry with our family when he is gone. He was such a huge part of all of our lives. But we are strong and we will survive. Sadder, but thankful for all the years we had.

• By yellowangel
• Reply 3461129
• October 15, 2012 at 7:51 pm
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Clerky96 there is a patch that can helps with the mucous as well. You are never alone! We are here for you! Stay strong. Peace will find you

• By misspiglet
• Reply 3461571
• October 15, 2012 at 10:17 pm
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Hi Ty,

Firstly I am so sorry for your loss. I know there are no words that will make you feel better, but I know you are a winner and will get through this. I have just read through all your old GBM 4 related posts and I'm a bit unsure how I never saw these before! I suppose I was in the middle of everything you have seen happen yourself and I missed them somehow, you are right it would have been very helpful to me, I suppose I was searching for "the end" symptoms so desperately, I missed yours because I could think and see straight. I just want to say that you have summed up everything I felt/feel/witnessed like a carbon copy of my mind! I think you should write a book on your experience as you write and express yourself extremely well. I have thought about doing it, but maybe one day in the future. I feel what you are feeling, the hardest time is the quiet times when I have run out of things to occupy my time with and the thoughts and emotions just take over, God help us! They say time heals all, but that doesn't really help right now!!
Just want you to know I share your pain and you sound like a big legend, so take care of yourself so you can still share your specialness with the rest of the world! X

• By Andreas (Inactive)
• Reply 3461952
• October 16, 2012 at 2:24 am
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thank you. I just want to help someone else because I had to learn alone. It's so hard alone and in the end it's overwhelming.
Now it's just quiet and I'm more alone than ever before. Please be kind. They are fighting for their lives and all we can do is watch. It was the most dfficult and heartbreaking thing I've ever done.Ty

• By clerky96
• Reply 3461998
• October 16, 2012 at 3:46 am
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It is with a really heavy heart that I have to tell you that Don passed away this evening. He went peacefully in his sleep. I haven't really gotten to know anyone on here, and I probably won't return. But I thank anyone who tried to answer questions for me and I wish you all the best.

• By misspiglet
• Reply 3461999
• October 16, 2012 at 3:48 am
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I know how you feel Ty, and its so sad and I can't believe all the hope we start out with and the "we can beat this" attitude and in the end it all ends the same ... what a horrible horrible horrible illness. I have purposely not touched a drop of alcohol since beautiful Sam's passing as I crave it to numb the pain, but I just know that if I do it will turn into something I don't need in my life, I can totally see how and why people become alcoholics. I also feel alone and find comfort in nothing except for keeping busy, but when night comes and that reality sets in, its just awful. Have you considered talking with a medium? I did and it was amazing, I know it was really Sam that sent me the messages as they were all his exact words and this lady never met him, just make sure you find a good one. Sending you peace and love. Do you have anyone family to give you company? X

• By misspiglet
• Reply 3462004
• October 16, 2012 at 3:57 am
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Clerky96, sending you lots of love and strength right now. May he rest in peace. May the the wonderful memories you have of your time together be your source of strength. I thought he would pass either today or tomorrow by your post yesterday, but how do you just say stuff like that to people? (Its exactly how my husband was on the day that he passed)
Please be kind to yourself and just rest. You will be very tired for this next month, I feel for you. Keep talking to him, he will still be around for this week to to give you strength. If you need to ask any more questions, please feel free xxxxxx

• By Andreas (Inactive)
• Reply 3462688
• October 16, 2012 at 10:40 am
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my dearest clerky96, I'm glad Don went in his sleep. I'm glad the process wasn't drawn out into something you had to watch. My heart reaches for you because I know that wrenching moment when you look into their face and you see they are not there any more. I'm sorry you have to do this. The next days will be lonely and long and your mind will race but your body will drag. There will be so much do do and with each passing second and each task you, will know you are alone now, but it must be done. The days will go by and you will cry and cry. It's OK. There's nothing else to do, but taking care is all we know at this point and then suddenly there is no one there to care for and we have no idea how to care for our selves. People will be calling and you will be overwhelmed with the phone and the business while drowning in your grief. This is a very hard time and there is no way around it - just through it...you will think you can't, but you can. Wait a while and then come back to the site. What you say may help someone else and writing will help you. I wish you strength, and grace. He's in a safer place now but he's gone from you. They don't answer us anymore when we cry out their names, but we talk to them anyway. Somehow, with God's mercy we wake each day and go forward.
I have faith in you. I have faith in all the courageous people who walk this path. We must be very strong that God gave us this lesson because it's a tremendous load to bear. I try hard to remember God chose them but at the same time he chose us to take care of them. Such a strange and tragic gift. I don't know if I will ever understand it in this lifetime but I'm going to try.
My love to you, my prayers for Don. May he find Andreas somewhere and they can look back at us and smile and say "We chose good ones didn't we? How lucky we are." Ty

• By 7monthsoutwife
• Reply 3480890
• October 23, 2012 at 5:48 am
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Hey both of you guys, wi;sh I ;had been reading all thiese posts Iw was kind of scattered with all that acaregiving hyou talked about the last three weeks, especially the last week! Andreas you were right about everything. Right now Im takin a break from three days of notifying everyone that my husband died. You probably cantbelieve itsme saying this, but yes it is Here I am, 7 months southwife. Wow. dear god. Had no idea that was it, thogh the eyes closing was a big sign. NOone to tell me, wasnt on the internet, fire departmen lady totally confused too, good she made me take him the the er so it didint happen at home. Tlel you the story later, and well grieve together, Andreas. The silence. Thank god Ive got family here for a week, serivice next week and a beautiful child to make me smile. Id rather go back to the caregiving I think and it was getting really bad like ou said. Agter thins settle down ( I see they wont ) aside from trying to live my life to its fullest and raise my c hild, I will do my b est to make sure that doctors will give the warmning signs to the patients. Its just umconsionable. I had to to it all myself and really didint find much on the internet because I was on eery brain tumour site except this one until the last onths or so. Thought this one was kind of traditional of something, you know very doctory type thing. Didint know there were real people on these discussion forums whith freal expereinces that werent written by scienctific writeso on brain tumours. Wish I had, not that it would have prolonged his life, but all the what ifs dont matter any more. Its painful to go through the photos for the celebration next week. We were married 28 years and he wanted to see her graduate, that was all. Best friend, father of our schildren, thats why we get married, best friiends for life. Ill join grief and loss support and try to help others ( ikin of missed being a helping others person when I was so tied up witj caregiving) but still, this isnt o.k is it? I really really didint know about why he wasnt eating or opening his eyes or unable to do his transfer. I really didint know. I feel bad I yelled at him after being so patient. I know he tried and he didint know what was wrong. He was only 55, a park ranger we lived all over the place in the west until we settled down, I just wemt trough the pictures. We stuck it out it the age of divorce through all his problems and he overcame them (exeptt the dyslexia and all that brain stuff) I never gave up on hiim no matter what and he tried so hard to be a good father despite all his problems. He and his daughter had a rough time for years due to his scommunication problems ( I later find out that it was the way hi sbrain worked add,, all thatlack of control) and his modod swings too. Shhe and he were just getting it figured out and under controlw when the evil tumour came. No chamce after that to see their relationship to a beutiful fruition, excepot that sh e shined and doted on him in the rehabl center, when he was th emost vulnerable. But coming home she saw him decline again and it was so frustrating for her to see. Lets not go there wi9th the frontal lobe changes in the last 3 weeks either, it worried me. THast the only thing that makes me wonder if it was for the better. The only ting. The silence convinces me otherwise. It was wednesday at midnight, with his mother by his side and my 14 year old daughter looking on after a 4 day fight. No, honestly, this infor has got to be preesented in a reasoable fashion somewhere, lets all get together on this. I searched for 8 months for what to look for, saw only Andreas warning me, and I have a college degree and lots of docgtors and therapists, well yes we avoided the neurosurgeion but he avoided gsiving me the details and got mad when I asked for them upon idagnosi when he informed me andmy husband he had 7 weeks with no treatment and 1 year with treatment. We got 8 lor 9 months. The silence, almost like something torn out of my heart. Noone will understand us what went between us, except us. Wow. My mom iis a widow but she is 84 and had 2 long years of Parkinsons caregiving. She is happy now and fulfilling her later years, making new friends and keeping the old. I will hug her and feel some closeness, but she knows it isnt right either. It was her favorite son in law, the one she encourage to go to college to become a park ranger. She is as deveatated as me. So. after things settle down lets work on this. Theres got to be a way, lots of gaps in this end stage thing. Maybe its the endstage thing in general, people dont like to talk a bout it, bu t thats wiersd becuae there in the hospital the nu;rses went abotut it with my hsuabndlike they do it all the time, so the information is definieily available. It would sure help, think it would be less scary really, and that doctor wouldnt have had to explalin everything int he hallway too me about the reason or the coma (brain stem, id never even condiered that,t hoght he eyes closing was just his dehydration from the not eating enough and drinking enough, whcih I thought was ljust from his speech recurrence eissue causing the mouth to dnot work right thus not shew or swallow just iike he had the problme in the hospital after surgery. So, brain stem brain stem body cant do anything including eventually swallow and breathe. How was I supposed to know. SDidint look on brain hospice maybe partly out of denial, awful sounding name there ayth;ing with the name hospice in it, they should change the name maybe,because thats something a person doesnt watnt o call or look up until the ery end (we did, had one for the day in a facility ).Andreas keep strong please, and keep telling people to look this stuff up. Even if only one person does ( Ididint, I got busy caregiving had to go to bed istead of the internet becuase the next day was I knew going to be rogher.TTHanks for trhying so hard with your loved one. ONoone will know how hard we tried will they. Except fortuantely my daighter saw alont of what I did for him. HOpe you kept a journal of saome sort. HTis is what marriage really is about, what you didd, what I did what everyone here is doing.