dealing with the loss

jen29 · New User Joined: 12 Sep 2006 Posts: 3

hi there. i am new here. my 64 year old mother was diagnosed with a grade 4 Glioblastoma. it was 4 centimeters in size and sat right in the center of her brain, covering both sphears (sp?). this was in 1/06. she has surgery, however they were only able to remove less than half of the tumor. the dr.'s said that it was too advanced and treatment would not offer enough quality of life nor extend her life more than a month or so. being a 2 time breast cancer survivor, my mother declined all treatment and we took her home at the end of march. i spent everday with my mom. i helped her do everything along with my brother and my father. we even arranged for our pastor to come to the house where he renewed my parents wedding vows. i held my mother during her 5 hours of seizures that she endured. we arranged for hospice when it was clear that we were on the downhill slope. i held my mother's hand as she took her last breathe on may 1, 2006 at 4:02 in the morning and i miss her terribly. she was my best friend and now she is gone and i do not know what to do with myself. i am married with 2 young children to take care of. i have to work a full time job. i go through the motions all day, but i cry myself to sleep everynight.

my questions is, when will it get better. i know that i will always miss her, but when will the pain subside just a bit?
thank you in advance for your thoughts.

Kris · Posted: Wed Sep 13, 2006 3:14 pm Post subject: Re: dealing with the loss

Dear Jen,

I'm having a very similar situation to yours': my 61 year-old Mum was diagnosed with GBM on 20 July - it was 5.5 cm in the right temporo-occipital lobe already affecting the corpus callosum tending towards the left hemisphere.
Both for localisation and size of the tumor - it was said to be inoperable. We opted for palliative care only, steroids and fentanyl patch against swelling and pain. She had about one-and-half months in perfect conditions, good mood, excellent physical and mental status - all the family was around her, discussing more than ever in our life before.

She started to get weaker and weaker about 2 weeks ago, lost a lot of weight, has trembling hands and worsening speech, no energy to walk anymore... she needs help now for every single mouvement. I know, we know that it's very close that we'll lose her. She's still with us, but I'm already missing her too much, she was also my best friend, my example, a wonderful Mum for me and my sister and brother, and a wonderful Grandma for my two kids.

I don't know if it will help you that I share the same feeling with you, I miss her already so much, I'm crying all the time, but maybe my only positively helping thought is that she'll be leaving this horrible suffer behind. She will have peace finally. And I'll be missing her madly, but my soul will get calm when knowing that she's having peace up in the sky. But I still have the hardest moment in front of me, and I wish I could also hold her (like you did with your Mum) when she passes away.

I also have two young kids and a full-time job, and I also have to cope with this horrible pain. But it helps me through the pain knowing that my kids will never forget their beloved Grandma and I'll see Mum in my kids' eyes...

All my love to you,

Kris

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 71

To Jen and kris and any others that are on this same path, I offer you my daily prayers and can tell you from experience that it does get a little easier with time. My dad was diagnosed July 28, 2005 with a greater than 5 cm GBM, inoperable. Like most on this site, there were no symptoms until just a day or two before diagnosis, when we found him semicomotose on the floor. We treated with the standard temador and radiation and he had some days that were better than others but he never was able to regain his previous state of physical or mental health. He was fixing a water line and digging a 6 foot ditch in my parents yard two days before diagnosis (in wonderful physical condition) and never able to completly walk on his own after the day we found him. After radiation/chemo ended we were so excited that things seemed to have been successful, but then dad never seemed to regain his strength. My dad passed away on November 14, 2006. I still cry most days. At 56, my dad was not "old" by anyone's standards. Like most of your stories, he was in great health--had just had a yearly physical the month before and told he was "the picture of health"--we have cried and laughed over that many times in the past months. He had a sharp mind and was a great conversationalist. I think that is what makes it hard on us. We see these people that look so strong and healthy and then we see what this disease does to them so quickly. But I don't cry as much and I smile a little too. And when my 4 year old son reminds me about doing something with my dad, I don't fall to pieces--so I will call that a small victory. Continue to live, and the living gets easier with time.

With prayers and heartfelt thoughts,
Michele
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Michele

vintage · Regular Joined: 12 Jun 2006 Posts: 35 Location: Minnesota

Hello~ So sorry about your loss. I lost my Dad to same disease 10 years ago...gosh it still seems like yesterday sometimes. I am 51 now.

I also know the memories of the process of losing them are also hard to overcome and forget. It is such an awful disease to have to watch someone die from. I use to have nightmares of the seizures and other things that Dad went thru. That was the hardest for me. The visions in my head and the ache in my heart of his last days. My Dad couldn't speak the last 2 months he was alive, couldn't do anything the last 2 months. I would hug him and talk to him, and he would just lay there with tears streaming down his face. I knew he had things he wanted to say and do, but couldn't.
That just broke my heart. Then one day about 8 months after he died, I was in my kitchen at the sink. All of a sudden I could "feel" my Dad's arms around me and I could "smell" him!! I stood so quiet with my eyes shut and I just knew he was there with me and that everything was ok. It lasted over a minute. He finally got to give me that hug and said goodbye. It was just awsome!!! Sometimes I wish it would happen again, but I just seem to know it won't. But I feel so blessed to have had that moment.

It will get better....everyone is diff with the grief process and I'm sure it is different losing a Mom. I have a girlfriend who lost her mom to ovarian cancer 4 yrs. ago. It was an agonizing and painful death. My friend still grieves for her mom. It's been very hard for her to accept. She still talks about her Mom all the time, and there are lots of tears yet for her. I just pray that it will get better for her.

Holidays are the hardest. Especially Christmas for me. My Dad loved Christmas!!

The tears will come and go, and it will get easier. It is the circle of life.
We must celebrate the time we had with them! Remember the blessings!!
and be thankful for everything!!

I will remember you in my prayers.....

In HIS grip....
Kevan
Vintage

Kris · Posted: Tue Sep 19, 2006 2:04 am Post subject: when they give up the battle

Dear Vintage, Jen, Michele

Tomorrow will be 2 months that Mum was diagnosed with this monster. It's incredible, I noticed that I was counting the days since the diagnosis as if it was my new calendar...

She's getting worse and worse every day, now she's completely incontinent, can't move her left leg at all, her speech starts to be disturbed, she has headaches again, doesn't sleep more than 3 hours a night ...

I think I'd prefer to know her being in peace. It's her worsening pain and suffer that makes me cry the hardest. For me, knowing and seeing her daily-worsening agony is the hardest to endure.

Thank you so much for having shared your experiences. It helps me get prepared...

Kris

vintage · Regular Joined: 12 Jun 2006 Posts: 35 Location: Minnesota

Hello Kris~ So sorry to hear things are getting so much worse. I remember when my Dad go to that stage, I started to pray that if a miracle didn't happen, for God to please take him quickly.
It IS SO hard to watch them suffer.
Please keep us informed how things are. I hope you have someone to help you thru this.....Take care or you and yours!!
Kevan
aka
vintage

Kris · Posted: Sat Sep 23, 2006 2:12 pm Post subject: Re: dealing with the loss

Hi Vintage,

Good to hear from you... I'm so grateful for your helping words.
My Mum is very weak, but her mind is still sharp, and even though there are days when it goes better and then there are days when it goes very bad, I guess she is still fighting and wants to live - I think it will end faster when she herself lets it arrive.
She's on i.m. steroid 2X a day, so she's having the side effects coming closer and harder: huge appetite, edema in the wrists, ankles, on the face, protruding abdomen, trembling hands, weakening muscle strength... and I find her painfully little, painfully skinny, but still beautiful!
Did your dad have these steroid side-effects?

It's been 2 months on 20 Sept since diagnosis.

Yes, thank you for asking, I have my husband who helps me through this horrible pain, and our two lovely children who are constantly radiating their overflowing love towards their beloved grandma. We often cry together, all the four of us, hand in hand.
But, I'm also having a lot of mental-spiritual help through this site, so thank you all being there for me sharing the same experience.

Kris

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 71

Kris,
The steroids are awful. My dad had such an appetite but couldn't keep up with the weight loss. I hate to talk about it and it makes me cry to even think of the last month. You are describing it so perfectly that I cry for you. My dad too fought hard. I think he thought that is what we would want him to do. And if there was even a chance of survival it is what we would have wanted. Once mom finally told him that it was ok, and none of us wanted him to keep suffering, he seemed to end content and let it end. The suffering and the pain and the effects of all the meds and knowing that their mind is actually still sane and they know what is happening to them is the hardest thing in the world. I can still see and feel him squeeze my hand as an answer to my questions in those last days when he would no longer speak. Knowing that he knew what was happening is really the hardest part for me. You are in my prayers. Know that you are not alone in this awful disease. I hope your mom and your family is able to know peace.

Michele
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Michele

vintage · Regular Joined: 12 Jun 2006 Posts: 35 Location: Minnesota

Hello KRIS~ My Dad was completely bedridden last 2 months of his life. He really didn't eat much. He couldn't really feed himself and I don't think he was very hungry. I don't remember any swelling. But he was having seizures even tho he was taking the seizure meds. After everything I read, I think it depends alot on where the tumor is.
Is your mom still able to communicate with you? If not, when you do talk to her does she seem to understand what you're saying?
I think when it gets to this stage, the biggest thing is making sure there is no pain. My dad would look around the room with this wild look on his face. We would ask him qauestions, but he would just stare at us. The hospice nurse finally decided he was in alot of pain!!! Then the morphine drips were started.
Is your mom home with hospice?
I know it is hard to hear these things. Keep us posted how you are.

And dear JEN~~ How are you??? I have been praying for you daily. It really will get easier with time.

And Michele~ So sorry for your loss too. you are so right when you say "Continue to live, and the living gets easier with time."

Praying for all of you~~~
Kevan

Kris · Posted: Tue Oct 03, 2006 3:47 pm Post subject: When will it end?

Dear Vintage, Michele, Jen

I'm so happy to have you all here...my heart is a bit easier when reading through all your comforting words. It helps me alot to know how you dealt with the most difficult stages and the hardest times with your beloved ones. Thanks for sharing your experience with me!

My mum is 100% depending on her hospice nurses, she's in her home, she' so happy to be at home. Finally we could find 2 nurses who take care of her 24 hours a day, one for the day, one for the night.

She 's absolutely capable of communicating with us, although her concentration and short-term memory are getting affected. She's calm, stands everything, even when we are changing her nappies (do we call a sort of Pampers "nappies" ? She's having urinary incontinence, and she plus she has no strength anymore to walk out to the toilet...).

This is so painful to do this...when I'm with her every 2nd week-end (I'm living 1700 kms from her), I'm creaming her dry skin, cutting her food into small pieces, giving her to drink from a special bottle, washing her body with a piece of cloth - all as if she was my child - roles have changed as if my mother was my child...such a painfully loving feeling.

But, I wish this would not last long. This cannot last long. Now it's 2.5 months since diagnosis -too short for losing her that early, but too long for letting her suffer in this condition...

I need you all girls, over there; I have to prepare for something you have already experienced. I don't know if I'm right, but I have the impression that you'd all agree with my view of rather knowing my Mum in eternal peace and silence than having her in this injust, uncomprehensible and cruel suffer.

Will keep you posted. Thanks for all.

Kris

vintage · Regular Joined: 12 Jun 2006 Posts: 35 Location: Minnesota

Hi Kris~ We are all here for you!! I understand you not wanting your Mom to suffer. I just know your Mom is so glad you are there for her!!! It really is the least we can do as "children"....take care of our parents as they did us. You are a blessing!!!!!!
I will be praying for you!!!

Kevan
aka vintage

jen29 · New User Joined: 12 Sep 2006 Posts: 3

hi kris. i am sorry that i have not written back sooner. your situation is so similar to mine that it is a little hard for me to read your messages, but i 1005 understand your pain. yes, i agree that it will be better for your mom once she passes and is no longer suffering.

my employer is my father, so i was lucky in that i was able to take large amounts of time off from work to be with mom. once she got out of the hospital, she was only home for about 5 weeks and i was with her everday. i too, changed diapers, fed her, helped bath her and gave her medicine. it is better for her not to be here, but it has been so hard on me.

even though you know in your head that it is time for her to go, nothing can prepare your heart for once she is gone. i was there holding her hand when she took her last breathe and then we had the funeral to arrange and attend etc... and it really was not until till the following week when i tried to resume my life, that i realized that she was truly "gone" 10/1 was 5 months and i am just now starting to get a little better.

say what you have to say to her and ask any questions that you have of her now, because there will come a point of no return where she cannot answer you, or will be gone completely. never hesitate to tell her you love her.

you and yours are in my prayers.
jen

Kris · Posted: Wed Oct 04, 2006 10:28 am Post subject: milestone in the battle

Dear Vintage and Jen,

I'm so grateful for your replies. I'll be short now: just wanted to let you know that I received a phone call this morning at 9:00 am that Mum was transferred back urgently to the Neurology clinic with ambulance because she had an unbearable headache/generalised pain since dawn.

They put her on a mannitol perfusion to reduce tha brain edema and - after all the efforts to keep her on steroids and fentanyl - today she received her FIRST real morphine dose...I call this a milestone, maybe erroneously in English, but what I want to say is that until now she was still on a positive, communicative and willing- to- fight side, and from now on she's gone to the morphine-driven, half-awaken half-somnolent part of this monster-journey. Don't you have an idea how long patients may stay on morphine in this stage?

Today when she arrived to the clinic she pronounced for first since the diagnosis was made: "I want to die."

I wish it would not last long. Alll what I want is that I'd still have time to go and put her in my arms, I wish I could be there when she leaves - just like you did with your Mum, Jen. I'm organising my flight to Hungary accompanied by my husband, but first I have to arrange someone to take care of the kids here in Geneva.

Please, think of us in the few upcoming days wishing that this part of the journey would end soon.

Thank you for your friendship, God bless you both,

Kris

vintage · Regular Joined: 12 Jun 2006 Posts: 35 Location: Minnesota

Hi Kris~ Sorry to hear your Mom is now having pain. My Dad was about 1 week with the morphine before he passed. The last 3 days he was in a coma.
Make sure the doctors and nurses are giving her enough morphine to keep her pain free. You should be able to tell if they are. Once they slip into a coma, there is no more pain. I'm so sorry for you. Take care!!!
Kevan

jen29 · New User Joined: 12 Sep 2006 Posts: 3

hi kris:
i just read your update about your mom going back to the hospital. how is she doing and how are you doing? as far as the morphine, goes, mom was on it the last week and a half or so. we were not sure if she felt pain once she slipped into the coma, so hospice prescribed that she have a dose every 6 hours. we ended it cutting the dose in half and giving half every 3 hours. the morphine peaks very fast and therfore does not last very long. write back when you can and my prayers are with you.
jen

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