Cancer sucks!

UncleBuddy · July 2016

wolfen said:
Thank You
A big hug and thank you to each one of you. After I wrote that horrendous account, I felt bad and thought perhaps I should have written a PM to Lin instead. I never want to frighten or discourage a "newbie". Unfortunately, Cancer does not "sugar coat" anything.

I often wonder if the cancer had gone to her brain. She was never a violent person, yet had the strength of 10 men when agitated. One day, she pulled off my glasses trying to snap them in half. She had no idea who I was. She managed to rip out her catheter with 3 of us trying to prevent it. She was not my Debbie, only a wounded animal fighting for her life.

These years have been the hardest ones in my long life I have ever endured. My grief is endless. Ron has been gone for 3+ years and Debbie for 2 on the 27th of this month. Most days it is hard to move forward, but I do so in their honor.

Did not mean to hijack your post, Lin.

Peace to all of you.

Luv,

Wolfen

Wolfen

Thank you for your honesty. I'm glad you were able to share your story. I think knowing all the details, both good and bad, are important.

In my honest opinion, it sounds like the cancer affected her brain. I'm sorry that you had to dredge up the bad parts. I'd love to hear what she was like in the real world before she got sick, if you don't mind sharing that.

My brother, as you know, is intellectually disabled. When I was a kid, I thought he was the most annoying brother on the planet. He followed me everywhere. But the first time someone made fun of him, I realized how hard things were for him. I'd kick anyone's butt who bothered him, even though it was not in my nature to fight. He, after all, was my little brother. I'm still fighting for him, but in a different way. I wish you could have met him. He's one of the sweetest guys I've ever known. He would literally give you the shirt off his back if you said you liked it. He shared easily and has been such an awesome son to my dad. Since dad has Alzheimers, he has been his memory.

Anyway, thank you so much for opening up and sharing your experience. You have no idea how much it meant to me.

Lovekitties · July 2016

UncleBuddy said:
Thank you!
I will take a look at those websites. I appreciate the fact that you found them for me.

My brother fell Tuesday. He was incoherent and had a high fever. Since then, he has gone downhill, with some days that he's lucid and others where he isn't eating and is out of it. He's up and down.

Thank you for sharing your experience with me. We have oxygen there, but it hasn't been necessary yet. He hasn't been in much pain, aside from the sore shoulder from the fall. I also hope he goes peacefully...

Marie, you were an awesome sister! Know that!

Lin

Medicade

I saw you mention that the agency you are dealing with does not take Medicaid. I don't know exactly how that works, but you might try contacting Medicaid directly to see if you can get some reimbursement for the expenses. It may work like getting services from an organization who does not take your insurance, but if you submit bills they will cover some of it.

Just a thought.

Thank you for your kind words. My sister and I had our differences in our adult years, but like you, I would have done anything possible to help her and give her more time.

Hugs,

Marie who loves kitties

LindaK. · July 2016

So sorry

Lin, I am so sorry you have reached this point with your brother. I'm glad he was able to make his own decisions and is able to be home for now. My husband was on home hospice for around 3 weeks, poor at best in my opinion. It was very stressful for me because of course the really bad times I needed helps were always in the middle of the night and they were not available. The initial hospice nurse said not to take him to the ER anymore, the night on call nurse said to take him to the ER - I screamed at her on the phone. Also, calling in the middle of the night, I actually got their answering service, not a person a machine!!! I was so angry, I hated them at those moments. Thank goodness we had liquid morphine but that took some time to kick in for my poor husband. Needless to say, I did not get much sleep those 3 weeks. I was on an upaid family leave from work. He started falling and not agreeable to take his meds and finally agreed to go to the hospice facility where they put him on a pain pump. He was there 11 days, I never left his side. He was unresponsive the last 7 days and thankfully passed peacefully. The hospice facility was fantastic, it is a sacred place with very special people to care for our loved ones. They took care of him and let me be "the wife" and sleep every night in a bed they pushed next to his. They lowered his bed so I could hold onto him all night. Looking back, I am glad he did not pass at home in our bed or in a hospital bed, it would have been too hard on me afterwards. Like I said the home hospice people were terrible, so I would have been a strung out mess by the time the end came. Family and friends were able to visit, bring me a meal or just hang out. I always felt my husband could hear everything so we shared laughs and tears in that room with him. I only hope my passing some day will be as peaceful. No one knows how long we have on earth, but my suggestion is to keep him home as long as you can handle it, both physically and financially. Once on hospice, there were no more fees with our insurance. It was an oddly peaceful place, other families would share meals, the aides would do my laundry, counselors and volunteers spoke to me and our daughters, pets were allowed to visit other patients, etc. I knew it was time to take him to the facility when he was falling and I could not help him. He also kept wanting to use the bathroom which I always tried to help him do. They finally cathaterized him when he stopped trying to get up. They treated him with dignity, which I know was important to him. It's never an easy decision but I think you will know when and if the time is right. What does your father think about all this? Keep in touch, Linda

lizard44 · July 2016

So sorry, Lin

but so glad the aide for your brother is doing such a wonderful job. It makes all the difference, I'm sure.

My mother, who died of cancer many years ago, died at home a few months after I had given birth to our youngest son in the days before hospice was widely available. A friend who was a nursing instructor came over and gave me a crash course in dealing with catheters and all the other necessary care, including giving injections so that Mum wouldn't be in pain at the end. Needless to say, caring for her was exhausting, even though we had a woman come to help with the baby and the housework during the day and my husband was wonderful with taking care of our other children when he came home from work. Most of the time, I was able to stay awake in a chair in her room at night, sleeping when she did and waking up when she moved or spoke. One night, I was so exhausted that I lay down on my bed, thinking I would nap for a few minutes. I slept soundly, though, not waking up until daybreak. My mother died during the night. I felt horrible for some time, but in retrospect wonder if she didn't pick her own time to die and wanted to spare me, since she and I had both been there years earlier when my dad died, also from cancer. We later found a poem she had written and left for us to open after her death which seemed to confirm this.

When my sister, who had Down Syndrome, developed Alzheimer's, her condition deteriorated to the point she became bed-ridden. She had been in a group home for several years, doing wonderfully, but they didn't have the nursing staff needed to take care of her medical needs. I was physically unable to care for her at home so we transferred her from the group home to a nursing home not far from where we lived so we could visit almost every day. She finally reached the point where she was unable to swallow and was put on a feeding tube. One day, she aspirated liquid into her lungs and developed pneumonia. She was rushed to the hospital. The emergency room staff did not expect her to survive the night. We decided to forego extraordinary methods to keep her alive and opted to have her transferred to the palliative care unit of the hospital, where she received the most wonderful care without her being hooked up to tubes hooked up to machines to keep her alive, and a staff of very compassionate medical personnel to make sure she was comfortable and free from pain. We were told we could stay in the room with her 'round the clock, so my husband and I took turns going home as needed, but we were both able to be there most of the time. As it turns out, she didn't die that night- she was in palliative care for almost two weeks before passing away peacefully, with my husband and me at the side. I don't know the hows or whys, but it was completley covered by Medicare and Medicaid, which was a huge relief.

I've experienced three different ways of dealing with the end. My dad died in the hospital, hooked up to machines, which is why, I think, my mother was insistent on dying at home. No one way is right for everyone, and no matter which way one chooses, or how peaceful the passing, there is always a range of emotions to deal with amidst the pain of watching a loved one suffer. You have done a wonderful job with your brother. I hope that when he reaches the end of his journey, it will be peaceful and that you will have a sense of consolation knowing that he lived and died surrounded and supported by your love.

Grace/lizard44

MS2014 · July 2016

UncleBuddy said:
Thanks!
I appreciate all your support. How's mom?

Good morning Lin

Good morning Lin

Thanks so much for asking for my mum in your terrible situation. I don't even have words to tell you. I just can say please stay well and take care of yourself and family.

For my mum...I don't have good news. She has been in hospital for the last 3 weeks and she will have to stay there who knows how many days more. Infections, low platelet counts....

We couldn't start the irinotecan chemo. At least we are having Metformin. I've read us much as I could and it is promissing.

I have days down and some days but I try to stay positive

I've read your strory several times and could stop crying several more. You must be proud of everything you have done for your brother.

Definetely cancer sucks.

Please take care of yourself. Big hugh from Spain

UncleBuddy · July 2016

Lovekitties said:
Medicade
I saw you mention that the agency you are dealing with does not take Medicaid. I don't know exactly how that works, but you might try contacting Medicaid directly to see if you can get some reimbursement for the expenses. It may work like getting services from an organization who does not take your insurance, but if you submit bills they will cover some of it.

Just a thought.

Thank you for your kind words. My sister and I had our differences in our adult years, but like you, I would have done anything possible to help her and give her more time.

Hugs,

Marie who loves kitties

Marie

I always got along with my brother, but I have a roller coaster of a relationship with both my sisters. But when the chips are down, we are all there for one another.

We are meeting a social worker from medicaid in the morning. She wants us to switch agencies, but at this point, that's ridiculous. In such a short time, the aide has become part of our family. There's no way I will allow that! I may see if I can hire him until we can get dad into assisted living. That's another issue. Dad has been getting nasty to me and my sister. he's not a nasty person, so I realize it's his sadness because of my brother and his Alzheimers. Today he accused me of stealing. I had to walk out of the room. It has been an emotional roller coaster.

My brother is slipping away more and more each day. Today he didn't eat. He only had some Carnation Instant Breakfast that the nurse told us to get him. I still can't believe the hospice nurse only comes once a week. Hospice at home in the USA sucks!

Hugs,

Lin

UncleBuddy · July 2016

LindaK. said:
So sorry
Lin, I am so sorry you have reached this point with your brother. I'm glad he was able to make his own decisions and is able to be home for now. My husband was on home hospice for around 3 weeks, poor at best in my opinion. It was very stressful for me because of course the really bad times I needed helps were always in the middle of the night and they were not available. The initial hospice nurse said not to take him to the ER anymore, the night on call nurse said to take him to the ER - I screamed at her on the phone. Also, calling in the middle of the night, I actually got their answering service, not a person a machine!!! I was so angry, I hated them at those moments. Thank goodness we had liquid morphine but that took some time to kick in for my poor husband. Needless to say, I did not get much sleep those 3 weeks. I was on an upaid family leave from work. He started falling and not agreeable to take his meds and finally agreed to go to the hospice facility where they put him on a pain pump. He was there 11 days, I never left his side. He was unresponsive the last 7 days and thankfully passed peacefully. The hospice facility was fantastic, it is a sacred place with very special people to care for our loved ones. They took care of him and let me be "the wife" and sleep every night in a bed they pushed next to his. They lowered his bed so I could hold onto him all night. Looking back, I am glad he did not pass at home in our bed or in a hospital bed, it would have been too hard on me afterwards. Like I said the home hospice people were terrible, so I would have been a strung out mess by the time the end came. Family and friends were able to visit, bring me a meal or just hang out. I always felt my husband could hear everything so we shared laughs and tears in that room with him. I only hope my passing some day will be as peaceful. No one knows how long we have on earth, but my suggestion is to keep him home as long as you can handle it, both physically and financially. Once on hospice, there were no more fees with our insurance. It was an oddly peaceful place, other families would share meals, the aides would do my laundry, counselors and volunteers spoke to me and our daughters, pets were allowed to visit other patients, etc. I knew it was time to take him to the facility when he was falling and I could not help him. He also kept wanting to use the bathroom which I always tried to help him do. They finally cathaterized him when he stopped trying to get up. They treated him with dignity, which I know was important to him. It's never an easy decision but I think you will know when and if the time is right. What does your father think about all this? Keep in touch, Linda

Linda K

I agree that hospice at home is poor at best. The aide has been our salvation. We are very lucky to have him.My sister and I were taking turns staying with my brother but it was too much for us to handle. We are still there everyday and help, but we go home to our families at night.

We visited a hospice facility yesterday because the hospice nurse was pushing my sister into this. I went but felt that it's not what he wantd. When he had a lucid moment, I spoke with my brother and he said he wanted to be home. I told my sister until it comes to a point where the aide can no longer handle it, he will stay home.

I'm so sorry that you went through so much with your husband. I'm glad he went peacefully at the end and you got to spend it with him the way you did.

We will manage to find the money. He deserve to die with dignity and I will try my best to follow his wishes.

UncleBuddy · July 2016

lizard44 said:
So sorry, Lin
but so glad the aide for your brother is doing such a wonderful job. It makes all the difference, I'm sure.

My mother, who died of cancer many years ago, died at home a few months after I had given birth to our youngest son in the days before hospice was widely available. A friend who was a nursing instructor came over and gave me a crash course in dealing with catheters and all the other necessary care, including giving injections so that Mum wouldn't be in pain at the end. Needless to say, caring for her was exhausting, even though we had a woman come to help with the baby and the housework during the day and my husband was wonderful with taking care of our other children when he came home from work. Most of the time, I was able to stay awake in a chair in her room at night, sleeping when she did and waking up when she moved or spoke. One night, I was so exhausted that I lay down on my bed, thinking I would nap for a few minutes. I slept soundly, though, not waking up until daybreak. My mother died during the night. I felt horrible for some time, but in retrospect wonder if she didn't pick her own time to die and wanted to spare me, since she and I had both been there years earlier when my dad died, also from cancer. We later found a poem she had written and left for us to open after her death which seemed to confirm this.

When my sister, who had Down Syndrome, developed Alzheimer's, her condition deteriorated to the point she became bed-ridden. She had been in a group home for several years, doing wonderfully, but they didn't have the nursing staff needed to take care of her medical needs. I was physically unable to care for her at home so we transferred her from the group home to a nursing home not far from where we lived so we could visit almost every day. She finally reached the point where she was unable to swallow and was put on a feeding tube. One day, she aspirated liquid into her lungs and developed pneumonia. She was rushed to the hospital. The emergency room staff did not expect her to survive the night. We decided to forego extraordinary methods to keep her alive and opted to have her transferred to the palliative care unit of the hospital, where she received the most wonderful care without her being hooked up to tubes hooked up to machines to keep her alive, and a staff of very compassionate medical personnel to make sure she was comfortable and free from pain. We were told we could stay in the room with her 'round the clock, so my husband and I took turns going home as needed, but we were both able to be there most of the time. As it turns out, she didn't die that night- she was in palliative care for almost two weeks before passing away peacefully, with my husband and me at the side. I don't know the hows or whys, but it was completley covered by Medicare and Medicaid, which was a huge relief.

I've experienced three different ways of dealing with the end. My dad died in the hospital, hooked up to machines, which is why, I think, my mother was insistent on dying at home. No one way is right for everyone, and no matter which way one chooses, or how peaceful the passing, there is always a range of emotions to deal with amidst the pain of watching a loved one suffer. You have done a wonderful job with your brother. I hope that when he reaches the end of his journey, it will be peaceful and that you will have a sense of consolation knowing that he lived and died surrounded and supported by your love.

Grace/lizard44

Grace

You are a kindred spirit. You also grew up with a sibling who had a disability and then became ill. We are protective of our siblings and would do anything to help them.

I am not impressed with hospice at home here in the USA. I don't feel we have the kind of support we need. If we didn't have our wonderful aide, my brother would have to be in a facility, which is something he doesn't want. We were told his hospice in a facility would be covered 100%, but that's not what he wants. We will do our best to keep him home.

Thank you for sharing your story.

Lin

Cancer sucks!

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