After the first three series of different Chemo treatments failed the Doctor has suggested no more Chemo and to just get Hospice care with Dr. checkups.
I don't know anything about Hospice visits or what they do for you.
I talked to the woman they set up for me at the Cancer clinic and I am supposed to meet with her on Monday.
She says that they take care of his medications having to do with the cancer etc.
They do not have a facility but home visit once or twice a week by a nurse.
My husband is not that bad off yet. Do you think he needs hospice to step in or to wait.
Once he is off of the Chemo, what do I expect to see?
Will he get worse fast, get well for a while and then worse?
He has sclc that is advanced.
The symptoms he has now is muscle weakness, I assume from the Chemo, and confusion also I assume from the Chemo.
He says he doesn't have any pain of nausea and therefore has not used the pain pills the doctor prescribed when he had a pain in his arm from the Lymphedema one day.
I feel as though Hospice right now is not the answer. However, I would like something to fall back on if he were to suddenly get worse.
I am really confused at this time.
He uses a walker with wheels inside and when we go out, which has only been for Chemo and Clinic appointments in the past, he has a wheelchair.
I have to help him with things like getting to and from the toilet and cleaning up afterwards.
He is a little over a year younger than me at 58 years old.
Since the Chemo was not improving but hindering his quality of life, the Doctor suggested quitting it. It was making him awfully weak.
Am I wasting the Hospice people's time by signing him up?
What I really need is someone to be here when I have to shop for food etc. I can't take him with me and he sometimes cannot wait alone while I am out to use the bathroom.
I am all confused....
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Bob's Doctor suggested Hospice care
- By Windy007
- Posted September 26, 2009 at 2:38 pm · 16 replies
- In Family members and caregivers
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Explore topics in this discussion:
Cancer Counseling Confusion Hospice care Lymphedema Weakness Pain Bereavement Stress
16 replies
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- By texaszan
- Posted September 26, 2009 at 2:53 pm
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If you sign up with hospice they can provide you with volunteers who will stay with him while you shop or even shop for you. At least that's how it works here. Hospice is a godsend and no one should hesitate to use their service. Remember his situation could change quickly and if he's already signed up you'll get the help you need that much faster. This very moment a hospice nurse is at our house adjusting pain meds for my husband. They have been wonderful. I don't know what I would have done without them.
- By MarionW
- Posted September 26, 2009 at 3:53 pm
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Hospice is , I agree- a godsend. they will help you with everything from pain control to nutrition to spiritual guidance to business needs and legal aspects.
Do not hesitate to take this help. They will be available to answer all your questions and to lend support.
God bless and take care.
- By AliceL
- Posted September 26, 2009 at 3:59 pm
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Windy and Texaszan are absolutely right and I can't really add anything to what they've said. Do keep the appt. and get him signed up. AliceL
- By Windy007
- Posted September 26, 2009 at 4:25 pm
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Thanks, I guess I just needed to hear from people who know.
I feel so stupid not knowing what hospice does and how to best apply their services to our needs.
We had bought cell phones so I could call Bob while I am out of the house shopping or even just out in the yard to see if I need to hurry home or come inside to see what he needs.
I don't ever want him to panic because I am not within reach, but I also have a lawn to mow and errands to run.
Lately, he can't figure out how to call me or answer my calls. It is so frustrating.
Rita
- By lucygirl
- Posted September 26, 2009 at 4:45 pm
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I think you should ask your husband what he wants. if he is not that bad then he should be able to tell you if he wants hospice to come in , then fine if not then honor that.
- By pattyp1
- Posted September 26, 2009 at 5:09 pm
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hey Rita,
omg- this is rough, isn't it?!
one of the core questions you need to answer is whether you need help - and I'm thinking that you do. there are people out there (friends, neighbors, relatives) that can do things like mowing your yard for you - you would be doing them a favor by asking them for the help - most people want to help but don't know what to do or how to ask - and would be grateful to pitch in!!!
there are other areas where you can use some help, and hospice will help here also - for example, settling his financial affairs - this is horrid to talk about - but if you aren't prepared, the government will step in and take a big chunk afterwards -- and he wouldn't want to do that to you, I'm sure. it takes several hours and you only need to do it once and it's over. ok - it sucks while you're doing it, but it only takes a few hours.
if your husband and you still have some fight left in you, by all means get another opinion - preferably at a major cancer center
but most of all - fight the beast the best way possible - with love and laughter - build some marvellous memories, sit on the couch and hold hands, and make him remember the girl he fell in love with....
wishing you lots of love and peace
hugs
Pat
- By ILIVEFORTHEM
- Posted September 26, 2009 at 6:06 pm
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Hospice is there for you if you need them. They will come as much or little as you want. It doesn't have to mean your giving up, just could use some help. They also have a great deal of experience in times like this and could end up giving some great advice.... i wish you and your husband the best. bless you, Ken
- By cuddles53
- Posted September 26, 2009 at 7:39 pm
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He may quit that chemo and live a long happy life, don't give up on him, he is going down hill right now fast, and it may be the chemo doing it, I would expect to see actually a great improvement once he stops those treatments, not right away, because the chemo does have cumulative effects, so for a while he still will look as if he is about ready to die, I would hold off on hospice unless you are thinking of absolutely no treatments of any kind. The reason i say this is my husband died 3 1/2 years ago, but he lived over 6 years in the same condition your husband is, but he gained weight, and improved a few months after his chemo treatments stopped, they gave him 3 months to live, he lived 6 years and they told him it was a miracle and he was cured!!!! Cured, I said! yes believee it tcan happen, and may happen. But he died from complications from all of his treatments, he had so many, it put his blood into a dyscrasia, and he had platelet levels way too low, he had a bleed in the brain that did kill him, but it does not mean your husband will have these complications, especially since he is getting off of them. Hospice is good especially to manage pain, but they aRE ALSO GOOD FOR PLANNING THE END, AND EASe YOU INTO AN acceptance of the disease. As long as you or he does not think it is the end just because hospice steps in, then I say it would be good for him. If you think they will come in and your hubby is going to just give up, then no don't get them yet, he may get out of that wheelchair, i did, and I do care for my own needs now, i was in poor shape with all of that chemo too, and It didn't help me live a better quality of life either, but I am in remission also now 3 1/2 years! I also was given 12 to 15 months, and told pretty quickly I would need hospice also, I proved them wrong. and you and hubby may too. Keep hoping and praying, that is the best thing and eat foods high in antioxidants. Blueberries, pomegranate, red raspberries, dark chocoloate, one piece daily, purple grapes, olive oil only, omega 3 fayy acids, fish oils, salmon is a very good food of cholice if you like it, i don't like it personally. Don't forget drink oodles of green tea and give up most of the caffeine. I drank a cup of hot ovaltine daily. I know this is on nobodys list but this is what I did and here i AM . I also eat blac licorice, I read someplace that in the olden days licorice root was a good cure for any respiratory problem and I found myself craving this licorice then I read on the back of the package about this as a cure for respiratory problems and wondered if there might be some truth to it, since I was craving it. Take care, and god bless you both.
SandyefGods bless Sandy
- By agru
- Posted September 27, 2009 at 9:08 am
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Let me be the practical, pedantic one here, since my 74 year old mother went on hospice after she had a very bad reaction to her chemo.
Financially, hospice is more than a Godsend. It is 100% covered with no out-of-pocket co-pays and virtually everything is included in their services.
In durable medical goods, you get what you need as the need comes up. In my mother's case, this included an O2 compressor, portable tanks, hospital bed (she preferred sleeping with her head elevated, side table, walker, shower bench, bedside commode (she needed this on and off), and, just in case, a wheelchair.
All her meds were included and delivered to the door via FedEx within 2 days. Meds that were needed immediately, such as those for pain control, were delivered by courier.
Three days a week a wonderful certified CNA (certified nurse assistant) came in to help my mother bathe. At least once a week a nurse came in to check on her condition. Once a month the hospice physician came to do follow-up.
This does not include the chaplain, social worker, and 24 hour on call service.
During times of crisis, and there were three of them, they sent round-the-clock help to stay with us. This enabled me to go home and get some sleep during these periods.
After my mother passed, hospice offers a year of bereavement counseling to family members.
My husband, a physician, believes people don't go on hospice early enough because they think hospice means "the end". Yes, to get on hospice you have to have a PREDICTED survival time of 6 months or less. But so many people go on and off hospice as their prognosis changes. Others stay on hospice for more than six months because hospice often extends life by merit of their superior care.
My advice? Don't be afraid of hospice. Definitely check it out. They will give you what you need as you decide you need it.
Meanwhile, may good things come your way.
- By linbur
- Posted September 27, 2009 at 9:29 am
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The only thing I can say is that I was really happy to have hospice just so I would know that there was someone I could call in the middle of the night instead of going to emergency. They will provide any medications he will need. Sometimes they bring them with them to the house. They will work with a local pharmacy so it will be convenient for you. Our pharmacy even offered to deliver meds for free once they were contacted by hospice. They will evaluate your husband before they accept him as a patient. If they don't think he is a candidate, they will tell you. Also, they will tell you that if he improves, he can leave the program to go back to treatments. My experience with them was very short as my husband passed away 10 days after we started with them. I wanted to start hospice long before my husband was ready to accept their help. They will only take him if he says it is okay as long as he is capable of making that decision.
- By MaryRVF
- Posted September 27, 2009 at 10:34 am
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Agree with agru! They also prefer you not wait til the VERY END so they can get to know you! I say please keep the appointment! Take care!
Mary
- By Diba
- Posted September 27, 2009 at 12:38 pm
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hi,
i also agree with agru. try hospice. if you find it is not what you need you can always cancel or have them come back when you feel it is more appropriate. we had home hospice for my mom when her chemo stopped and she was still quite mobile and able to take care of herself. that changed in time and it was good that the hospice nurse was there through that change to help us understand what was happening. we also had o2 compressor, walker, hospital bed, meds delivered, etc. they were a godsend for us. they gave us the number of a service to come in as much or as little as we wanted to help out my mom (do shopping, wash dishes, get mail, read to her) i cannot recall if they were the ones who would help her to a shower or toilet, as that was never necessary with my mom, but you can ask hospice about that as well. i know your husband does not need all of the things i listed above, but you can have them come in to give you some time to comfortably leave the house while you take care of weekly chores that need to be dealt with. in all of this, don't forget to take care of you. don't feel guilty if you need a short break while running errands to sit and have a coffee and recharge your physical and emotional batteries. my mom also had a panic button around her neck that was linked to an ambulance service. that also gave us all comfort. i am a bit worried if your husband is in a confused state and cannot operate the phone. if that is the case then you really should not leave him alone at all. someone needs to be there if there is any kind of emergency (personal or material).
hospice will be a good sounding board for you on all of your concerns. the nurse we had was so compassionate and gentle with my mom, she actually looked forward to her visits.
i am keeping you in my thoughts and prayers. hugs,
lynn
- By simplyklb
- Posted September 27, 2009 at 4:37 pm
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Definitely check into hospice! There is not time like the present!
Kristi
- By sheilake
- Posted September 27, 2009 at 8:04 pm
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We signed my Mother up for Hospice when she was first diagnosed with colon cancer and was in no pain. Hospice said they preferred to have a longer time with a person so they could get to know them (and the family). That makes the last part of the journey a whole lot easier.
Hospice was a God send for us. My Mother actually got better medical care under Hospice than she did with all the splintered specialists she was seeing. Her quality of life was much better.
Know this is a hard time. Wishing you the best.
Sheila
- By Windy007
- Posted September 28, 2009 at 1:55 pm
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I met with the hospice lady today and she explained what hospice is all about. I told her that Bob had an appointment with his Dr. on the 14th of October and she said maybe we should wait and see what his Dr. was going to do.
She mentioned having to sign in and out of hospice before certain tests such as a ctscan because it would conflict with the insurance.
Our Insurance does mention three Hospice plans in the area, that they support in their preferred providers.
This one is a Non-profit and is not in the plan.
This makes it confusing signing in and out of the Hospice care. I have a brochure to read and that might explain it further.
She did mention that you can have a person come in for up to three hours while you are away running errands.
We live out in the country and I hope three hours is enough. It takes us up to an hour just to get some places. LOL But it would help for shorter trips closer by.
I could sure use that peace of mind.
Bob sat in on the meeting in our home with the mission nurse. She said that when we decided, she would bring a social worker with her and then she would also access Bob's needs at that time.
He seemed to agree that we needed some help so he wouldn't have to get up and go to the Doctor's office so often. They have a Doctor that works on their staff and would keep his regular oncologist informed of any needs to change meds or of his condition.
It sounds hopeful, so I am also leaning toward signing up after the 14th.
Thanks to all of you who have experienced this and helped us make the decision.
Rita
- By Windy007
- Posted October 5, 2009 at 8:22 pm
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After speaking with the nurse about Hospice she must have checked in with his Oncologist and he said he wanted him in Hospice program right away.
A nurse will be coming for the second time tomorrow.
They are a Godsend in helping me to get the equipment I need to help me move him around safely.
They got him an oxygen generator that takes the oxygen out of the room air and concentrates it for his use. I am sure everyone knows what they are, but I never heard of them before.
I also have two containers in case the power goes out he can get it from the tanks without electricity. Our power seems to go out whenever their is any lightening anywhere in the county.
He also has a portable bedside commode to help him in the middle of the night if he needs it.
They got him some other supplies and I had already gotten him a wheel chair myself.
The nurse suggested that he never be left alone as he is a fall risk, so today I had to take him out to get some supplies from Sam's. It wasn't too hard pushing him and the shopping cart. He tried to use his arms and move it himself but he didn't have the strength.
I was just glad I could get him out and see something besides the inside of the house. Morale is important for his improving I think.
I can't believe how hassle free it is getting Hospice nurses to do anything, This morning I needed to have a prescription refilled and called and asked about it. Within a few minutes his nurse called back and I told her about it. I asked her if she could transfer the prescription to our regular pharmacy cause at the time I needed it fast and picked it up at a Wallgreens near the Cancer Center, I also asked her when she would be calling it in and she said as soon as she hung up. I never had anyone work so fast at things as long as I have been dealing with his illness. It takes a lot of stress out of it all.
Thanks to everyone who talked me into it.
Rita
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