Recently my father who has MM. Has been having these hallucinations. People that arent there. Dogs, kids. Having to remind him over and over its just us in the house, no one else has been really stressing me out. It got so bad our cancer doctors nurse said we needed to take him to emergency room to get checked out. He was admitted for two nights under observing status to watch. They think could be probable dementia and gave us Risperdal to take. Thing is I read that Risperdal isnt good for dementia. The PA that gave it said that must drugs could be bad and said it was the best thing to try and help curb the hallucinations. Just trying to weather them until the meds start to work and hopefully help. Have to constantly remind him no one is here. :\ just hoping everything gets better for him. I get stressed with it all. Just want it to get better. Imbers
I am so sorry that this has happened, MM is a hard illness to fight. Most people fail to comprehend just what is going on when you have it. Most times I just don't talk about it. Just an FYI, be aware of him and watch for changes as MM can migrate to the brain. I have not read up on that side of the illness but I know from advice on here that it can and does migrate to that area, however I think its pretty rare.
Be strong and keep your faith strong.
I will hold you up in my prayers
Rodney
Thank you. He has had MM since 08 or 09 forget the year. Tried thalidomide and totally messed him up worse, so switched to Velcade and that put his cancer into rimission for a few years. Recently tho the one blood count we look at had been slowly going up and Doc wanted to try Velcade again, but I guess my dad didnt react as well as before so. We stopped treatments. this last week doc wanted to start a new med that he called a cousin to thalidomide (cant remember the name) but since these hallucinations he cant sign the paperwork to start the program for new meds. they cost alot and have to sign papers to say he will take them the right way. They said his mental health was bad so we cant start meds to try and help cancer. really stinks. Imbers
rodney said:
I am so sorry that this has happened, MM is a hard illness to fight. Most people fail to comprehend just what is going on when you have it. Most times I just don't talk about it. Just an FYI, be aware of him and watch for changes as MM can migrate to the brain. I have not read up on that side of the illness but I know from advice on here that it can and does migrate to that area, however I think its pretty rare.
Be strong and keep your faith strong.
I will hold you up in my prayers
Rodney
My dad also had hallucinations with his MM. He would see cats and fire everywhere. It was scary and sad to watch him suffer in that way. I hope your dads doctors figure it out for him.
Aflanary84, Had to take him back into er early this morning. It got real bad again. trying to keep him until monday when we can transfer him into a nursing home here in town. Hopefully we can find what is wrong and however long he is held in NH they can get it fixed. If it can be fixed. Thank you Imbers
Hi.so sad hearing about your Dads experience. It has been a long time since I posted hear. I had to step back for a while as I lost my Mom to MM 2-8-12. At time of her passing she had been suffering severe hallucinations (all things she deathly feared) She was 89 and totally alert, oriented & engaged with life prior to hallucinations. High Calcium levels (hypercalcemia) including in Brain was cause of her hallucinations. the calcium level became elevated 1 yr. prior to her death (she was miss diagnosed). The hallucinations started 2 months prior to death. Very difficult to deal with (haldol, anti anxiety meds. pain meds (severe Pain from bones & nerves) Hallucinations lasted 2 months ( Diagnosed as terminal 3months before death). I am a nurse (RET) so my understanding of situation always extended beyond what Drs. were saying. I knew she had MM before diagnosis. This was Moms end stage. She had already been receiving repeated blood transfusions, extended antibiotic therapies & had a spinal cord stimulator ( implanted 1 yr). My main job was to make sure by end of her journey I knew she was at peace. Many people helped along the way including Hospice (in Home) We laughed & loved every step of the way & Mom was able in between everything to impart her wise council & love Although so very painful I would not trade those last 3 months. Continue to make your memories by living in the moments you have.
Your moms journey is similar to my dads. My dad was told for 8 months that his arthritis was acting up. When he finally got an MRI they found the softball sized tumor in his pelvis. He was in extreme pain the last year of his life. I honestly don't know how he did it. I think my mom and I had something to do with it. His calcium levels also were high and his blood counts were so low. He had nightmares and saw things for months. It got worse when he developed sepsis and MRSA at the nursing home. My dad was diagnosed in Sept 2012 and passed away May 2013. We knew my dad was terminal early on, but we also new that the meds would prolong life for a few years. The months up to his death my dad and I would have "date night" every Tuesday in the nursing home. We made little moments happen. In May a week before he passed away they told us they were stopping all treatment. That last week with my dad I would never trade. Even though he was not coherent the moments the family shared were amazing. We never left his side in the hospital. He passed away exactly a week after they stopped all treatment. I think its all about making the small moments with your family during this time. Never take a moment for granted with them.
Here's the thing. Doctors and hospitals are NOT TRAINED to recognize the signs of and diagnosis MM. They don't do the right tests for early identification and because MM presents itself in multiple ways, doctors and hospitals misdiagnose and mistreat MM patients, especially in the elderly. My mom had sepsis also, in the hospital and then in the hospice they sent her to so that she could die! I noticed a bull's eye sore on her ankle which a doctor (who I waited 8 hours for) scratched his head about. I insisted on a diagnosis--it turned out to be sepsis (she must have bumped her ankle on the bed) and after weeks of antibiotics and rehab, she walked out and we drove her home. Two years later after her final collapse, My mom's death certificate from Citrus County Hospital said "Breast cancer" with "complications from heart disease". NOT! I was furious. She did not have breast cancer and her heart was perfect--better than mine--no heart disease. She had multiple myeloma! Duh!
I loved your story, though. The four days that it took while my mom was peacefully dying, the whole family convened in her room 24-7. We played her favorite Big Band and classical music, we watched movies, we ate pizza, we laugned, cried, slept, held her hand. She was right there with us, encircled by us. Even though she mostly was out of it (probably because of the stupid morphine that the hospice nurse kept giving her, even though she wasn't in pain), we knew she was right there with us, exactly where she wanted to be. In hindsight, I should have taken her home--I see now that with the help of family and friends I could have easily taken care of her at the endstage and she might have even noticed that she was in her own bedroom, with her cat and her family.
Why on earth did it take them 8 months to decide on an MRI. Is that because he was very old, on medicare, and that usually an MRI should precede a scheduled surgery? Isn't that medical malpractice, to neglect the diagnostic needs of the elderly?
aflanary84 said:
Your moms journey is similar to my dads. My dad was told for 8 months that his arthritis was acting up. When he finally got an MRI they found the softball sized tumor in his pelvis. He was in extreme pain the last year of his life. I honestly don't know how he did it. I think my mom and I had something to do with it. His calcium levels also were high and his blood counts were so low. He had nightmares and saw things for months. It got worse when he developed sepsis and MRSA at the nursing home. My dad was diagnosed in Sept 2012 and passed away May 2013. We knew my dad was terminal early on, but we also new that the meds would prolong life for a few years. The months up to his death my dad and I would have "date night" every Tuesday in the nursing home. We made little moments happen. In May a week before he passed away they told us they were stopping all treatment. That last week with my dad I would never trade. Even though he was not coherent the moments the family shared were amazing. We never left his side in the hospital. He passed away exactly a week after they stopped all treatment. I think its all about making the small moments with your family during this time. Never take a moment for granted with them.
My dad was 64 when he started having hip and back pain that was beyond his normal arthritis. He also had been dropped 2 years before by his health insurance when he got a neck fusion. He had to wait until he was 65 so he could have medicare to be able to afford an MRI or anything like that.
His doctor had run blood tests and blood cancer runs in my dads family. We have asked for his blood work, but we are having a hard time getting that information from his doctor. His doctor also had told a family member that he had messed up when diagnosing my dad. As soon as they found the tumor in his pelvis the doctor came running into the room and said its MM! That is the best blood cancer to have.... I hate his doctor....
My dad got sepsis from the nurses at the nursing home never turning him. He had 6 bedsores when he was taken to the hospital and 5 fentanyl patches on his body. He was only suppose to have 75mcg He had on close to 300mcg... Needless to say will think twice before letting another loved one go to a home again.
We had a similar incident happen with my dads hospital bills that you had with your moms death certificate. Most of the bills and insurance papers say that he had prostate cancer...I really don't understand why they would put anything other then MM down.
I am glad you got to have those moments with your mom as well.
O.K., now I understand the 8 month delay. How regrettable that situation was. There really needs to be a serious revision on the way MM patients are diagnosed and treated!. How will that happen? When hospitals stop making mistakes in the death certificates. It is only when all of the MM data is collected and analyzed accurately that we will see funding for research in the diagnosis and treatment of MM. I think I read that only 20,000 people a year die from MM and so I guess it isn't getting the attention it deserves. But what if hospitals and/or coroners are writing down the wrong cause of death? . . .Then there's a lot of missing data!
One famous MM patient who I really admire is Pat Killingsworth. Google him. He has created quite a website and blog and is right on top of the medical research. He used to own a fitness center but is now bravely dealing with all of the multiplicities of MM. I went to one of his meetings once in FL and learned a lot that night. I also donated all of my parents' medical equipment (walkers, etc.) to the MM fundraiser and I felt a little better. I hope to become more involved in the many marathons and fundraisers that they have nationwide to raise money for more research. It's therapeutic for me, I think. Maybe.
Yes, that's exactly what my mom's "doctor" said--it's the best blood cancer to have! Right.
aflanary84 said:
My dad was 64 when he started having hip and back pain that was beyond his normal arthritis. He also had been dropped 2 years before by his health insurance when he got a neck fusion. He had to wait until he was 65 so he could have medicare to be able to afford an MRI or anything like that.
His doctor had run blood tests and blood cancer runs in my dads family. We have asked for his blood work, but we are having a hard time getting that information from his doctor. His doctor also had told a family member that he had messed up when diagnosing my dad. As soon as they found the tumor in his pelvis the doctor came running into the room and said its MM! That is the best blood cancer to have.... I hate his doctor....
My dad got sepsis from the nurses at the nursing home never turning him. He had 6 bedsores when he was taken to the hospital and 5 fentanyl patches on his body. He was only suppose to have 75mcg He had on close to 300mcg... Needless to say will think twice before letting another loved one go to a home again.
We had a similar incident happen with my dads hospital bills that you had with your moms death certificate. Most of the bills and insurance papers say that he had prostate cancer...I really don't understand why they would put anything other then MM down.
I am glad you got to have those moments with your mom as well.
my dad has gotten a MRI of his head, they found something just havent had a appointment yet to get it checked out, they know he has MM and hopefully whatever meds they are giving him will help out. Thankfully the home he is currently at a real good friend of the family works there and considers us family. So i know he will get pretty good care while he is there. We have 20 days covered. If he goes over will have to pay a copay of 20% of 148 a day. I currently dont have a job so If he starts to get close to going over. I have to try and find a job quick as i can. Either that or sell some stock that i have saved up :. Thank you all for your stories. This time in my life has been the hardest its been. Im 25 living with my father because he doesnt have anyone else. Times i wonder what would have happened if I left with my mother who left 03 04 before my father found out he has cancer in 08 or 09. But I start to feel bad thinking about those things. Idk. It all is so much it made me sick this morning. I have to get better before I can fully help my father right now. Imbers
MM also causes lesions that can also be found in the brain and spinal areas. Have they looked into doing a MRI of the brain? Yes, medication can also contribute to hallucinations, dehydration and poor nutrition. Electrolyte imbalance is also an area to look at. How are the kidneys?? Another concern.
Janet
,
I also moved in to help my dad. If you ever need to vent I would be happy to listen! I know the toll it takes on the care giver. Take time to do little things for yourself as hard as that may be.
Imbers said:
my dad has gotten a MRI of his head, they found something just havent had a appointment yet to get it checked out, they know he has MM and hopefully whatever meds they are giving him will help out. Thankfully the home he is currently at a real good friend of the family works there and considers us family. So i know he will get pretty good care while he is there. We have 20 days covered. If he goes over will have to pay a copay of 20% of 148 a day. I currently dont have a job so If he starts to get close to going over. I have to try and find a job quick as i can. Either that or sell some stock that i have saved up :\. Thank you all for your stories. This time in my life has been the hardest its been. Im 25 living with my father because he doesnt have anyone else. Times i wonder what would have happened if I left with my mother who left 03 04 before my father found out he has cancer in 08 or 09. But I start to feel bad thinking about those things. Idk. It all is so much it made me sick this morning. I have to get better before I can fully help my father right now. Imbers
Janet, they did a MRI and hopefully soon going to get it checked out better, they did mri but never took enough time to fully check it out. they said it was a stroke.. so idk. his electrolyte was low and they had him with a iv to get that back up. i think his kidneys were ok they said. Today the head nurse said her and one of the doctors believed that he probly had two years left. felt like a bat being swung into my gut. sucked.. but they seemed to be helpful telling me everything planning wise we had to decide in the future about hospise after nursing stay is over. to help out. think they were saying trying any chemo treatments would just cause him more pain. so idk. they trying to fully find out medicare problems. said we have 20 days free. but should have 100 covered fully. but another lady said after the 20th day he was still there we would have to pay 20% of daily cost. so hopefully one of the financial ladies up at nursing home can help me figure out all that. now that he is able to be watched up at nursing home. im able to take care of myself and rest and try and figure out everything. Thank you aflanary84, Thank you everyone who has replied and given me strength and hope and answers to questions i didnt even know i needed to ask. Imbers
Hello to all, I have just now had a chance to sit down and catch up on things, I received a letter from my transplant doctor, 6 months have now passed. I am in excellent partial remission, outstanding news for a man with aggressive mm in his mid 50s with no other health issue's. Then I read these discussions, I have sat here with tears running down my cheeks. Not for me but for all of you guys. So much hardship and pain, life is not easy being a patient but being a support person for someone you love is so much harder. My heart and mind just screams out at the lack of professionalism and compassion for many people who are or have been involved in treatment and care of ill people, don.t they understand that in the blink of an eye it may be them. Once you have been there it softens you heart, life with out hardships becomes normal and expected. I am a sound believer in God and try to read the bible each day, don't always have time, but am constantly thankful for the days I do . I have been tested to the max, do I really believe what I profess to believe, if so death is just the beginning so I try to have very little fear and have hope for the future. But this does not help the ones of you who have given and are still giving so much of yourselves as caregivers, may God bless all of you. Charity, Compassion, and Love are the true components of being human and, they show our best side for all to see including God who places these above everything we do. I have been a hard headed hard hearted man for most of my life, in 93 both of my parents passed in January with cancer, I survived cancer(hodgekins) in 96 and now have mm starting in 2011, so the 3rd time around I finally understand... I just got home from a business trip, left early Sunday morning from Pa to Texas, got home yesterday. Sunday at 5pm at a Holiday Express outside of Dallas I had the privilledge of attending a church service. I really had to build up nerve to walk in as it was started and I knew I would be a stranger. I sat in the back row in awe, dam if it wasn't targeted to me. 1500 miles from home with a group of people who didn't know me and wouldn't you know it, I couldn't hide only cry. We all have an appointed time and if we have something to do or should I say something he wants us to do we might as well brace up because we are going to do it. I know this is probably not the correct advice or response for here, but my word ;if people understood the importance of unconditional compassion, unwarranted kindness or just caring for or about someone who you know can't ever return the favor the treatment of patients would be so much better. You all have shown and are still showing these characteristics, may God Bless you all, the world needs so many more like you.
Thank You so much
Rodney
Rodney, First off Congrats on the partial remission! I am sure that is a great feeling to have.
Reading everyone's stories is so heartbreaking. I think the best thing at least for me is knowing that people are out there experiencing the same things as I have for my father. Being a caregiver is hard especially being in my 20s and having a complete roll reversal with my dad. It was beyond tough and heartbreaking, but I can never imagine what he or anyone with cancer is going through. Knowing that something was taking over your body and you have no control of the outcome.
I look at life so differently now. Life can change in a a matter of minutes and so many people take it for granted. I try not to sweat the small stuff anymore. I tell my love ones I love them and how much they mean to me every chance I get. You never know when you won't get that chance again.
I never was a big church person until my dad got sick. My dad was and in the last few months of his life he would have a priest come into the hospital and give him communion. For him I would sit with him and partake and it bonded us even more. 5 days before my dad past we did the last rites in his hospital room. It was the most moving thing I have ever sat through. My dad said many times that if he didn't believe in GOD he would have never made it through life and it made it easier for him to except death knowing that he believed.
Thank you for your kind words and I hope that you will be able to continue to stay strong and in remission.
rodney said:
Hello to all, I have just now had a chance to sit down and catch up on things, I received a letter from my transplant doctor, 6 months have now passed. I am in excellent partial remission, outstanding news for a man with aggressive mm in his mid 50s with no other health issue's. Then I read these discussions, I have sat here with tears running down my cheeks. Not for me but for all of you guys. So much hardship and pain, life is not easy being a patient but being a support person for someone you love is so much harder. My heart and mind just screams out at the lack of professionalism and compassion for many people who are or have been involved in treatment and care of ill people, don.t they understand that in the blink of an eye it may be them. Once you have been there it softens you heart, life with out hardships becomes normal and expected. I am a sound believer in God and try to read the bible each day, don't always have time, but am constantly thankful for the days I do . I have been tested to the max, do I really believe what I profess to believe, if so death is just the beginning so I try to have very little fear and have hope for the future. But this does not help the ones of you who have given and are still giving so much of yourselves as caregivers, may God bless all of you. Charity, Compassion, and Love are the true components of being human and, they show our best side for all to see including God who places these above everything we do. I have been a hard headed hard hearted man for most of my life, in 93 both of my parents passed in January with cancer, I survived cancer(hodgekins) in 96 and now have mm starting in 2011, so the 3rd time around I finally understand... I just got home from a business trip, left early Sunday morning from Pa to Texas, got home yesterday. Sunday at 5pm at a Holiday Express outside of Dallas I had the privilledge of attending a church service. I really had to build up nerve to walk in as it was started and I knew I would be a stranger. I sat in the back row in awe, dam if it wasn't targeted to me. 1500 miles from home with a group of people who didn't know me and wouldn't you know it, I couldn't hide only cry. We all have an appointed time and if we have something to do or should I say something he wants us to do we might as well brace up because we are going to do it. I know this is probably not the correct advice or response for here, but my word ;if people understood the importance of unconditional compassion, unwarranted kindness or just caring for or about someone who you know can't ever return the favor the treatment of patients would be so much better. You all have shown and are still showing these characteristics, may God Bless you all, the world needs so many more like you.
Thank You so much
Rodney
Hi Rodney,
I was so touched by your words. I too, led myself to my church on Wednesday. Not a soul to be found, lit a candle and had a good cry for myself. My mom, age 87 passed away in June with Leukemia, and since her passing I have felt like I was looking at my death head on. I am also in my 50’s and will not allow this disease to represent who I am. There are so many beautiful people in this world, and by having MM Have been fortunate to have found them. You are brave and I continue to pray for continued progress/ remission.
A friend, Janet
Thank you so much for your kind and encouraging words, I find that having this disease to be a blessing. I know that it is hard to handle and most likely will eventually take my life; but for now it has opened the door to find so many good people. It is a wonderful feeling to know that there are still people out there who care about others and are not just focused on themselves. God opens doors in ways we do not understand but once we walk through and trust him for all things, being sick is just an inconvenience and not nor can it be the focus of the world I live in . It has been 20 years and I still have tears and miss my parents so, I walked with them through their illness, wasn't mature enough to be able to handle things correctly all the time. I missed out on so many little things but I learned and have grown since them. We lost my wife' mother about 2 years ago, not cancer but just as bad, heart problems. She was uncomfortable one of her last nights at the nursing home and wanted her nightgown changed for the third or forth time. I told her she was going to make herself sick, and she looked at me and said I know you will get it done because you are one of my buddies, I immediately went to get my wife and a nurse. She knew I would do it, I will never forget that; we were really friends and I had become a real son to her. Thank God I was there because I had never really realized how much she had counted on me and trusted me. The little treasures are the ones that count.
your friend Rodney
August 20th i finally had to get my father addmitted to a nursing home here in town. for a few weeks he was doing ok. Still confused with things. Then got real worse. the last day that I say him was Sep 24th. I was at the home the next day. But decided to let him rest since they just got him comfortable. The day before I was able to talk to him(tho he couldnt reply) I told him that i loved him my sister loved him his other son. The friend and other family that knew loved him. I had all these people to help me once whatever happened. I would be able to find a way to live on. I left that day giving him a kiss on the forhead. Saying I love you Dad. Ill see you tomorrow. The 25th i head home after being there. a hour later. the nurse friend called me saying i neede to come in my father had passed. 4:50 pm on September 25th. age 66. Ill miss my father. and alot of people around were surprised that me and my sister werent more upset and crying about it. We were just happy that he didnt have to hurt anymore and that he was in a better place. We were able to find a place in the cemetary as close to his mother and step father as we could get. So Im happy he is close to family. Ill cherish all the memories that i had.. the good and the bad. I love You Dad