Things got worse very fast.The pain is unbearable for him and I.
My husband has deteriorated very rapidly in the last 2 days.He sleeps very little and the pain has increased.He had seizures and hallucinations that we're finding hard to control.
I have no energy at all.I'm not even able to cry.I just lie next to him and fail to sooth him.When he's awake and not hallucinating he is his wonderful,funny,courageous self but I lose that beautiful spark of him many times a day.
The tumor that he has on the lower part of his spine is putting pressure on his nerves and his legs and hips hurt almost constantly.No matter how much we increase his meds dosages,he cannot stand to be touched bellow the navel and this is making it very hard (and heartbreaking) to rotate his body and to keep him and his bedding clean.
He begs us not to move him because when we do,his legs and back hurt tremendously.We're waiting to see if a new pain med will work better now that he has developed resistance to this one.I keep praying that it does but I feel almost tempted to sto rotating him until then.I know it's a terrible idea and still,his bedding needs to be changed but I cannot keep hurting him like this.I just want him to rest,G-d help me I just want this to end.
Things got worse very fast.The pain is unbearable for him and I.
My husband has deteriorated very rapidly in the last 2 days.He sleeps very little and the pain has increased.He had seizures and hallucinations that we're finding hard to control.
I have no energy at all.I'm not even able to cry.I just lie next to him and fail to sooth him.When he's awake and not hallucinating he is his wonderful,funny,courageous self but I lose that beautiful spark of him many times a day.
The tumor that he has on the lower part of his spine is putting pressure on his nerves and his legs and hips hurt almost constantly.No matter how much we increase his meds dosages,he cannot stand to be touched bellow the navel and this is making it very hard (and heartbreaking) to rotate his body and to keep him and his bedding clean.
He begs us not to move him because when we do,his legs and back hurt tremendously.We're waiting to see if a new pain med will work better now that he has developed resistance to this one.I keep praying that it does but I feel almost tempted to sto rotating him until then.I know it's a terrible idea and still,his bedding needs to be changed but I cannot keep hurting him like this.I just want him to rest,G-d help me I just want this to end.
Lulu (?),
Contact your local hospice. This is exactly what they exist for. They do this every day and know far better than you, how to handle him and what needs to be done and (more importantly) what should not be done. Please, give them a call and get him there.
Love, Fred
Lulu (?),
Contact your local hospice. This is exactly what they exist for. They do this every day and know far better than you, how to handle him and what needs to be done and (more importantly) what should not be done. Please, give them a call and get him there.
Love, Fred
you need to take him in to Hospice -they will be able to control his pain, and then when it's under control you can take him home , the Hospice nurses are great, they will help you every way and he'll be painfree check with his insurance provider who's in-network all the best
you need to take him in to Hospice -they will be able to control his pain, and then when it's under control you can take him home , the Hospice nurses are great, they will help you every way and he'll be painfree check with his insurance provider who's in-network all the best
My husband is in very similar condition due to liver cancer. You are SO not alone. We have only been married a little over a year (he's about to turn 59) and we are both dealing with the overall tragedy of the situation. Feel free to write back, or I would even be willing to talk by phone if you think that will help. This is hell for all of us --
My husband is in very similar condition due to liver cancer. You are SO not alone. We have only been married a little over a year (he's about to turn 59) and we are both dealing with the overall tragedy of the situation. Feel free to write back, or I would even be willing to talk by phone if you think that will help. This is hell for all of us --
Lulu, I just wanted you to know that I'm thinking about you. Did the new pain med help out your husband? Have you contacted hospice?
LadyVelvet, I'm thinking about you too. What a tough hand to have been dealt so early in a marriage.
hugs to all
Lulu, I just wanted you to know that I'm thinking about you. Did the new pain med help out your husband? Have you contacted hospice?
LadyVelvet, I'm thinking about you too. What a tough hand to have been dealt so early in a marriage.
hugs to all
Call Hospice NOW! They will need to contact your doctor, but meanwhile, they can help both of you!! Please do not wait! I will pray for you and your husband. There is peace beyond this, thanks to our merciful Lord.
Call Hospice NOW! They will need to contact your doctor, but meanwhile, they can help both of you!! Please do not wait! I will pray for you and your husband. There is peace beyond this, thanks to our merciful Lord.
And you don't have "go to" hospice, as someone here implied. They'll come to you. I hope you've contacted them by now. If Pathways hospice exists where you are, they're wonderful.
And you don't have "go to" hospice, as someone here implied. They'll come to you. I hope you've contacted them by now. If Pathways hospice exists where you are, they're wonderful.
Be leary of relying on Hospice. Not all cities have a good Hospice program. Also remember if you are on medicare and sign up with Hospice you can't get tests taken or take him to emergency room. Medicare won't pay while you are on Hospice. You also have to pick a Hospice primary doctor if you can find one that will sign him up for the program. My wife's primary doctor refused to sign her up saying she did not know my wife well enough and that we would have to get her nuerologist 50 miles away to sign her up. This caused problems getting any pain meds. Ask other people in your area who have used the Hospice program what their opinion of care given was.
Be leary of relying on Hospice. Not all cities have a good Hospice program. Also remember if you are on medicare and sign up with Hospice you can't get tests taken or take him to emergency room. Medicare won't pay while you are on Hospice. You also have to pick a Hospice primary doctor if you can find one that will sign him up for the program. My wife's primary doctor refused to sign her up saying she did not know my wife well enough and that we would have to get her nuerologist 50 miles away to sign her up. This caused problems getting any pain meds. Ask other people in your area who have used the Hospice program what their opinion of care given was.
Besides caring for your husband you are dealing with your own shock. I(t is exhausting. Everyone is pretty right on about suggesting you get immediate help if at all possible. Thinking of you even as I am in my own speeded up processes with Mom failing faster than I could have imagined and suddenly though not as bad as you are describing. I offer prayers for you right now. workerpriest
Besides caring for your husband you are dealing with your own shock. I(t is exhausting. Everyone is pretty right on about suggesting you get immediate help if at all possible. Thinking of you even as I am in my own speeded up processes with Mom failing faster than I could have imagined and suddenly though not as bad as you are describing. I offer prayers for you right now. workerpriest
most hospice workers are very good to work with,don't be afraid to get help it is not a sign of failure and the use of morphine can be very scary and some think if they start the morphine then the next couple of days their dead! this isn't ture and the sooner you get them in the sooner they can get to know your husband and the best way to care for him. and it is alright for you to see your primary care dr. and get something to help you through this time. Its propbably not gonna knock you out and make you not aware of whats going on. you talk care of yourself. I am a caregiver for the elderly and I also work with the mentally challanged, and i have worked with the hospice nurses. it takes special people to do this kind of work. they are a special tool you should make use of. God bless your loving spirit and your husbands as well.
most hospice workers are very good to work with,don't be afraid to get help it is not a sign of failure and the use of morphine can be very scary and some think if they start the morphine then the next couple of days their dead! this isn't ture and the sooner you get them in the sooner they can get to know your husband and the best way to care for him. and it is alright for you to see your primary care dr. and get something to help you through this time. Its propbably not gonna knock you out and make you not aware of whats going on. you talk care of yourself. I am a caregiver for the elderly and I also work with the mentally challanged, and i have worked with the hospice nurses. it takes special people to do this kind of work. they are a special tool you should make use of. God bless your loving spirit and your husbands as well.
Dear Lulu, Please contact Hospice or if your county has a Home Health Nurse Division which works closely with Hospice, contact them. My husband passed away May 27th from prostate cancer. He had a peaceful nearly painless death. I was his only caregiver(72 yrs old), we have 5 adult children that live all over the USA but have come home to help out whenever they could. We chose the Home Health Nurse Division and they were outstanding. The nurse called every day or I called her if needed. She came at a moments notice and checked his vital signs , made any suggestions, called our doctor if needed, got prescriptions, picked them up and brought them to me. They also provided a person to come and bathe him twice an week and a physical therapist to come up until two weeks before he died. The nurses were very compasionate, caring and loving. They listened to my problems without rushing to leave.They were wonderful.Call them TODAY! Get some HELP! God bless you.
Dear Lulu, Please contact Hospice or if your county has a Home Health Nurse Division which works closely with Hospice, contact them. My husband passed away May 27th from prostate cancer. He had a peaceful nearly painless death. I was his only caregiver(72 yrs old), we have 5 adult children that live all over the USA but have come home to help out whenever they could. We chose the Home Health Nurse Division and they were outstanding. The nurse called every day or I called her if needed. She came at a moments notice and checked his vital signs , made any suggestions, called our doctor if needed, got prescriptions, picked them up and brought them to me. They also provided a person to come and bathe him twice an week and a physical therapist to come up until two weeks before he died. The nurses were very compasionate, caring and loving. They listened to my problems without rushing to leave.They were wonderful.Call them TODAY! Get some HELP! God bless you.
Morphine is not tolerated well by all. My wife just died with Alzheimers 4 weeks ago. She vomited and became deathly sick if she took morphine and Oxycodone gave her grand mall seizures. Hospice did not do justice by her.She died with no pain medication and no Hospice nurse in site. Not that I didn't call for help. I am saying be careful because of the painful experience I just went through having my wife die me holding her hand and her not having anything for pain or end of life help from Hospice. Not all Hospice programs are bad but check out the one you are planning to use first.
Morphine is not tolerated well by all. My wife just died with Alzheimers 4 weeks ago. She vomited and became deathly sick if she took morphine and Oxycodone gave her grand mall seizures. Hospice did not do justice by her.She died with no pain medication and no Hospice nurse in site. Not that I didn't call for help. I am saying be careful because of the painful experience I just went through having my wife die me holding her hand and her not having anything for pain or end of life help from Hospice. Not all Hospice programs are bad but check out the one you are planning to use first.
Lulu, I HIGHLY suggest you contact a hospice in your area. They have the staff to come to you, you don't go to them. Aides are trained to turn, bathe, clean a patient. Volunteers are also trained to come to your home for respite visits (sitting with patient while caregiver runs errands, goes to a movie, SLEEPS) Chaplains are available also. The nurses are wonderful people. Do your research and interview as many as necessary until you find one that suits your needs. My prayers go out for you and Joe.
To RRC: Your information is not correct, Medicare DOES pay for hospice care.
Lulu, I HIGHLY suggest you contact a hospice in your area. They have the staff to come to you, you don't go to them. Aides are trained to turn, bathe, clean a patient. Volunteers are also trained to come to your home for respite visits (sitting with patient while caregiver runs errands, goes to a movie, SLEEPS) Chaplains are available also. The nurses are wonderful people. Do your research and interview as many as necessary until you find one that suits your needs. My prayers go out for you and Joe.
To RRC: Your information is not correct, Medicare DOES pay for hospice care.
I do send you a hug and prayer, and I do agree with the post above me. I was a Hospice volunteer, and eventually became a mentor. Hospice makes it not only easier for the patient, for they hate seeing their families in so much pain can be debilitating. Working with an objective person makes it easier on the patient. As for you, it will give you much needed time out to visit with some of your friends, or just go treat yourself to a coffee. They work with the entire family, not just the patient. It makes it so much easier, (if that is possible). Be gentle with yourself, and take care of YOU...love plays some tricks at the end of life issues, but don't beat yourself up over it. And yes...Medicare does pay for it. If you need to talk to anyone, I am here.....regards and prayers...LEE
I do send you a hug and prayer, and I do agree with the post above me. I was a Hospice volunteer, and eventually became a mentor. Hospice makes it not only easier for the patient, for they hate seeing their families in so much pain can be debilitating. Working with an objective person makes it easier on the patient. As for you, it will give you much needed time out to visit with some of your friends, or just go treat yourself to a coffee. They work with the entire family, not just the patient. It makes it so much easier, (if that is possible). Be gentle with yourself, and take care of YOU...love plays some tricks at the end of life issues, but don't beat yourself up over it. And yes...Medicare does pay for it. If you need to talk to anyone, I am here.....regards and prayers...LEE
I'm so very sorry about your wife, my deepest heartfelt sympathy.
I'm so very sorry about your wife, my deepest heartfelt sympathy.
RRC, I'm so sorry for your loss. hugs
RRC, I'm so sorry for your loss. hugs
Msleahb: My information about medicare is correct. Hospice gets a monthly payment from Medicare and they provide nurses,aides and durable medical equipment. Plus the a select few pain meds.Which my wife was alergic to. What I said is true. You can't can't get tests or take your loved one to hospital or emergency room as medicare will not pay for it. I know from experience. My wife had an accident before she went on hospice. She fell and I now think she hit the toilet with her back.Her local primary dr. refused to put Shirley on hospice as she claimed she did not know my wife well enough. I can't see what that has to do with giving a dying alzheimer's patient some comfort care. The local doctor forced me to request Shirley's nuerolosist 55 miles from us to become my wife's primary hospice doctor. You have to get a doctor to become your primary hospice doctor and she puts you on hospice. Now this doctor is the only medical person that deals with hospice. A month after my wife's accident which left her paralyzed except for her head and arms and in pain a bump developed on her lower spine. I called her primary hospist doctor to see if I could get my wifes back x-rayed. (After the fall the emergency room did very little to help my wife.) The doctor checked and called me back. She said she was sorry but being on hospice neither medicare or our health insurance would pay for x-rays or doctors for my wife. She was shocked and said the medical comunity in my area has really deteriated and it was shameful. MISSY: Thank you for the hug. Right now I need all I can get. It is very hard and painful for me. I go to her grave every day.
Msleahb: My information about medicare is correct. Hospice gets a monthly payment from Medicare and they provide nurses,aides and durable medical equipment. Plus the a select few pain meds.Which my wife was alergic to. What I said is true. You can't can't get tests or take your loved one to hospital or emergency room as medicare will not pay for it. I know from experience. My wife had an accident before she went on hospice. She fell and I now think she hit the toilet with her back.Her local primary dr. refused to put Shirley on hospice as she claimed she did not know my wife well enough. I can't see what that has to do with giving a dying alzheimer's patient some comfort care. The local doctor forced me to request Shirley's nuerolosist 55 miles from us to become my wife's primary hospice doctor. You have to get a doctor to become your primary hospice doctor and she puts you on hospice. Now this doctor is the only medical person that deals with hospice. A month after my wife's accident which left her paralyzed except for her head and arms and in pain a bump developed on her lower spine. I called her primary hospist doctor to see if I could get my wifes back x-rayed. (After the fall the emergency room did very little to help my wife.) The doctor checked and called me back. She said she was sorry but being on hospice neither medicare or our health insurance would pay for x-rays or doctors for my wife. She was shocked and said the medical comunity in my area has really deteriated and it was shameful. MISSY: Thank you for the hug. Right now I need all I can get. It is very hard and painful for me. I go to her grave every day.
RRC: I am so very sorry for your loss, and that you and your wife had to go thru this. Every case is different, but it seems to me that you got allot of incorrect advise. To others that find themselves in a situation where your loved one is on Hospice care, and they are in trouble, if Hospice does not respond to your call for help, Do Not Hesitate to Call 911 and get help. First and fore most, get care for the patient. I worked in the accounting department of our local Hospice for several years, and have a sister under Hospice care now. Please try and get your self some grief counseling. If not from Hospice, then thru a church or your local mental health department. Good luck and God's peace.
RRC: I am so very sorry for your loss, and that you and your wife had to go thru this. Every case is different, but it seems to me that you got allot of incorrect advise. To others that find themselves in a situation where your loved one is on Hospice care, and they are in trouble, if Hospice does not respond to your call for help, Do Not Hesitate to Call 911 and get help. First and fore most, get care for the patient. I worked in the accounting department of our local Hospice for several years, and have a sister under Hospice care now. Please try and get your self some grief counseling. If not from Hospice, then thru a church or your local mental health department. Good luck and God's peace.
I would have to take my wife off hospice before I could get help or I would be responsible for all the bills. including an ambulance. My wife's nuerologist for the past 30 years who is also head professor at Strong Memorial hospital did some checking with medicare, the insurance company and hospice before informing me of this. I just received a bill for $115.00 from the doctor for 30 minutes of consultation with hospice that medicare won't pay.This is the only way the doctor could supervise care from a distance. Since my wife died her records are sealed and I can't even question their refusal to pay. unless I go get a court order. Of course anyrhing medicare rejects our Blue Cross rejects too.This bill was for April. I still have at least 2 more bills coming. Maybe if I did call 911 they would have made sure that hospice came to us quickly for end of life comfort.
I would have to take my wife off hospice before I could get help or I would be responsible for all the bills. including an ambulance. My wife's nuerologist for the past 30 years who is also head professor at Strong Memorial hospital did some checking with medicare, the insurance company and hospice before informing me of this. I just received a bill for $115.00 from the doctor for 30 minutes of consultation with hospice that medicare won't pay.This is the only way the doctor could supervise care from a distance. Since my wife died her records are sealed and I can't even question their refusal to pay. unless I go get a court order. Of course anyrhing medicare rejects our Blue Cross rejects too.This bill was for April. I still have at least 2 more bills coming. Maybe if I did call 911 they would have made sure that hospice came to us quickly for end of life comfort.
Thank you all for your replies.I just wanted to let everyone know that we were relying on hospice staff that came home and helped us care for Joe, from the moment that the treatment stopped and he came home, we were in touch with the hospice and nurses alternated being with us all day and all night during the final days.
It was still very hard to them to fight the pain he felt on the lower part of his body.Some medications helped more than others but nothing made it go away completely or for too long.
Joe passed away on Saturday morning and he is no longer in pain.Thank you for your support in this journey.
Thank you all for your replies.I just wanted to let everyone know that we were relying on hospice staff that came home and helped us care for Joe, from the moment that the treatment stopped and he came home, we were in touch with the hospice and nurses alternated being with us all day and all night during the final days.
It was still very hard to them to fight the pain he felt on the lower part of his body.Some medications helped more than others but nothing made it go away completely or for too long.
Joe passed away on Saturday morning and he is no longer in pain.Thank you for your support in this journey.
God bless you for the journey you made with your husband. As the days pass I'm sure they will be bittersweet, and the first time will come when you didn't think about him that day and that will probably the hardest of all, you might feel like you are being kind of unfaithful(for a better word) but don't let yourself go there, just mourn for your loss and then let the healing begin.Again,God bless you.
God bless you for the journey you made with your husband. As the days pass I'm sure they will be bittersweet, and the first time will come when you didn't think about him that day and that will probably the hardest of all, you might feel like you are being kind of unfaithful(for a better word) but don't let yourself go there, just mourn for your loss and then let the healing begin.Again,God bless you.
LuluLovsJoe:So sorry for your loss. I know the pain. I am glad you received the care that was promised to us but we never received.We had no pain meds for my wife. I find if I go to church and pray it helps me. I haven't gone to church in years but plan to start going again. I also go to cemetery daily and care for her flower pots.My wife loved red flowers so I added red geraniums and red roses to brighten up the flowers. This also makes me feel better. God Bless You.
LuluLovsJoe:So sorry for your loss. I know the pain. I am glad you received the care that was promised to us but we never received.We had no pain meds for my wife. I find if I go to church and pray it helps me. I haven't gone to church in years but plan to start going again. I also go to cemetery daily and care for her flower pots.My wife loved red flowers so I added red geraniums and red roses to brighten up the flowers. This also makes me feel better. God Bless You.
RRC, LuLu, I'm so sorry to read of your losses. May your pain be lessened by the memories of the love.
RRC, LuLu, I'm so sorry to read of your losses. May your pain be lessened by the memories of the love.
Bless you and your Family
Bless you and your Family
To both RRC and Lulu,
You both have my deepest sympathy for your losses.
RRC, may you find peace in the red flowers. Sending your wife red flowers from my heart. God bless you for getting back to church. I pray that finding God again comforts you and gives you peace. I agree with Gailnbob about grief counseling, it works wonders. It wasn't my intention to upset you regarding my comments on hospice care. People clearly have had different experiences. I'm so sorry yours was a negative one.
Lulu, may God bless you and give you peace. I'm glad you were able to get help towards the end.
To both RRC and Lulu,
You both have my deepest sympathy for your losses.
RRC, may you find peace in the red flowers. Sending your wife red flowers from my heart. God bless you for getting back to church. I pray that finding God again comforts you and gives you peace. I agree with Gailnbob about grief counseling, it works wonders. It wasn't my intention to upset you regarding my comments on hospice care. People clearly have had different experiences. I'm so sorry yours was a negative one.
Lulu, may God bless you and give you peace. I'm glad you were able to get help towards the end.
Thank you msleahb: I see from the posts on this site that hospice units have helped a lot of people in their time of need. I guess all we can do now is try to make sure no one else in our area has to go through a painful death as my wife Shirley did. Someone told me that with the technology available today no one needs to die in pain. My wife's nuerologist is writing to the visiting nurse service about the lack of care Shirley received.I sent a very negative survey sheet to hospice and my daughter in law who just retired from the visiting nurse service wrote a letter to the president about the lack of comfort care. Candy was a volunteer coordinator for them for 15 years. I went to the cemetery today and found that the deer are eating our red roses and some other flowers. RRC
Thank you msleahb: I see from the posts on this site that hospice units have helped a lot of people in their time of need. I guess all we can do now is try to make sure no one else in our area has to go through a painful death as my wife Shirley did. Someone told me that with the technology available today no one needs to die in pain. My wife's nuerologist is writing to the visiting nurse service about the lack of care Shirley received.I sent a very negative survey sheet to hospice and my daughter in law who just retired from the visiting nurse service wrote a letter to the president about the lack of comfort care. Candy was a volunteer coordinator for them for 15 years. I went to the cemetery today and found that the deer are eating our red roses and some other flowers. RRC
so sorry for your loss.
so sorry for your loss.
CALL THE HOSPICE NURSE AND CALL YOUR DR. TOO BOTH CALLS WILL MAKE SOMETHING HAPPEN THAT IS WHAT WORKED FOR ME. MY HUSBAND HAS ALZHEIMER'S AND WAS HAVING TERRIBLE PAIN IN HIS LEGS THAT THE MEDICINE WASN'T REALLY HELPING SO THEY INCREASED THE PAIN MED NOW HE IS SLEEPING FINALLY.
CALL THE HOSPICE NURSE AND CALL YOUR DR. TOO BOTH CALLS WILL MAKE SOMETHING HAPPEN THAT IS WHAT WORKED FOR ME. MY HUSBAND HAS ALZHEIMER'S AND WAS HAVING TERRIBLE PAIN IN HIS LEGS THAT THE MEDICINE WASN'T REALLY HELPING SO THEY INCREASED THE PAIN MED NOW HE IS SLEEPING FINALLY.