I am new here and would like support from people who are going through the same thing my son and I are. My son is 21 years old and very sick. The doctor has said he is in the final stages of CF of and has recommended Hospice Care at home so he doesn't have to spend so much time in the hospital. He is in the hospital a lot for 10 - 14 days at a time. This is very hard to deal with and my mind is spinning. Has anyone been in this situation or know anyone who has who can shed some light on the situation? His doctor always said he was not a candidate for a lung transplant. I have watched his health decline a lot in the past year. This is so hard to deal with. He is so scared and being his mother it hurts me soooo much to see him in this situation.
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hospice care
- Thread starter momofjosh
- Start date
I have no experience with hospice, although I have heard through many that have had experience, that they are a wonderful, caring group of people who make the last days/months much easier for the patient and the family. (Of course I would assume that could vary by region and provider.) My suggestion is to post this in the adult section. I know there are some there who have dealt with this subject before. My prayers are with you and your ds. As far as transplant, if that is something he's interested in, has he been evaluated by a center to determine if he is eligible? All centers are different.
My husband died last May under hospice care, and it was an absolute godsend. Have you decided on home hospice or residential? I'm not quite sure what questions you have but I would be MORE than happy to help you out in anyway I can
Email RyAllieAhava@yahoo
AIM RyAllieAhava
Or you can just leave qustions for me here
Email RyAllieAhava@yahoo
AIM RyAllieAhava
Or you can just leave qustions for me here
I happen to work for hospice, and have a young child with cf. I recommend hospice care because they will be about what you and your family needs to get through all of this. Being home is better for most people when they are this sick. As a mom, I am sure your pain is overwhelming and as your son is an adult, I'm sure his grief at his own awareness of what he is losing is great. I will keep you in my prayers and definitely urge you to at least talk to the hospice people there. By the way, where are you? If you don't mind my asking.
Thank you for responding to me. What do you do for Hospice? I would like anything you can share about this experience we are going through. We live in Racine, WI. There is so much going on in my head that it is spinning! I would like encouraging words from anyone. I was nervous that our decision was not the best one because I don't know much about it. Today a nurse from Hospice is coming to our home to access Josh. They confused me the other day with talk of money and such. How old is your child with CF? Josh had a very bad bleed in his lungs last monday, luckily he was in the hospital because otherwise he wouldn't be here today. He was on a respirator for two days in intensive care. It was so scary for him , so now he is scared of something like that happening again. It makes me very nervous now also. I also feel funny about people coming in our home to take care of Josh when we need it. I'm sure it will be a comfort when we get to that point though. I am just afraid that we won't like someone that comes in. (How uncomfortable would that be?) Josh has been in the hospital so much and had many nurses and respiratory thereapists he did not care for. I wouldn't want him to have that frustration at home and feeling so bad. I do have to say though that one of the nurses that took care of Josh in Intensive Care was one of the best nurses he has ever had!! We told him and wrote a letter to the hospital. He definately helped the whole family through those 2 days. I thank God for people like him! So any information you can give me to tell me what Hospice is all about would be greatly appreciated! Thank you again for responding to me.
Well, as far as being afraid of someone you don't like, if someone isn't on the ball, you can request another nurse. WE, luckily didn't have that problem, but it's good to know that if someone isn't duldilling your needs, you can ask that they be replaced.
I think home hospice care is the absolute best way to go. The focus of the entire program is on keeping them comfortable, and it's much more comforting to be in familiar surroundings at that point. I think you made the best decision. I have never regretted our experience with home hospice. Our home hospice nurse basically helped with medications to keep Ry comfortable, and helped us take care him/ready for his approaching death. For me, it made the whole experience easier.
I think you're absolutely doing the right thing for Josh, if it's any consolation.
I think home hospice care is the absolute best way to go. The focus of the entire program is on keeping them comfortable, and it's much more comforting to be in familiar surroundings at that point. I think you made the best decision. I have never regretted our experience with home hospice. Our home hospice nurse basically helped with medications to keep Ry comfortable, and helped us take care him/ready for his approaching death. For me, it made the whole experience easier.
I think you're absolutely doing the right thing for Josh, if it's any consolation.
I am a social worker for the pediatric team. My daughter (only child) who has cf is 4. I was in the position at hospice before she was diagnosed. After her diagnosis, I took a year and a half off, worked with adults some, but the peds position reopened and I was ready. Hospice guidelines vary state to state in terms of how much/ what types of care they are able to provide and how it is paid for but most hopices are greatly funded by donations so even if insurance is used or people are billed some, the Hospice doesn't run on that $ , rather from donations, fundraising etc. Some hospices offer palliative care and it is available even when the doctor cannot say the patient is "dying" or terminal, or has less than 6 months, but rather that the person's life is "threatened" or has a chronic "life-limiting " illness. Traditional hospice care focuses on a person's dying process being as comfortable and tolerable for the patient and caregiver. Palliative care focuses on a sick person feeling better , but not necessarily getting better, if that makes sense. For example, in my work, we help quite a few children with cerebral palsy, or who had trauma at birth and may live a while, but have limited abilities. We do a lot of parental support. One of the biggest things that happens to people going through caring for a sick child is isolation, our visits relieve that. We also offer as many options as possible in terms of meds/ treatments, ideas for keeping someone comfortable, not judging the patient/ family on their decision. For example, if pain is an issue, some folks want no pain, even if that means the patient is always sedated. Some say, no I want to be awake, talk to my family and I am ok with a little pain. They can help you understand the body's way of dealing with the symptoms of the disease, the dying process and help you feel prepared. I agree with some of the comments , that the agency can reassign you a nurse/ social worker or chaplain if you don't like who you are asigned, but let me say I'd be surprised if you'd need that. I work with a hospice of approx 200 employees and in 3 years of meeting with probably at least 150 familys, i've probably only heard of personality conflicts once or twice. I don't say this to brag, but i believe hospice caregivers are some of the best people in the world, especially when theyenter the home of a hospice patient. Back at the office, they are all human, but there is a special presence that takes over when we are with those who are going through what you are going through. And it is always your perogative to say, we are not feeling up for a visit today. At our hospice its 24 hour service, if and when you need it, with average being a nursing visit once 2-4 times a month and a chaplain/ social worker visit biweekly. At ours there are also special units to go to if needed during care-giver crises or increased pain, or doing a major decline. But also,sometimes you can get nursing care for 8 hour incremens when things are intense. All of these things vary state by state. Bereavement services that are offered at most hospices are great too. Far more beneficial than traditional groups or counseling because all the work is focused on people who've lost someone. It's very specialized. If you and your son are able to talk now about the things that are important to him, issues of privacy, how much medical intervention he can tolerate etc....Hospice can help guide you to make sure his wishes are honored even when if he is too weak to make decisions. Please let me know about the nurse's visit and pass on any questions you still have after that.
depending where you live ,you can look in the phone book and find people under hospice you may also want to call you healthcare provider and tell them to help you find someone also call your insurance and talk with a care cordinator and tell them what is going on and what you need . you can also contact home health service , therapy service provided by hospital's etc. hope that helps
S
skh
Guest
I live in ND and worked in the office for a local hospice a few years ago. Hospice is a wonderful service which iprovides nursing care, nurse assistant care, social workers, chaplain and many volunteers. Hospice helps with all aspects of a persons illness and is there for the patient as well as the patient's loved ones. I think that it takes a special person to work in hospice care and I truly believe they have a calling to do the work that they do.
I will keep you and your son in my prayers.
I will keep you and your son in my prayers.
I had the privelage to know a few people at our local Hospice when I worked in our local hospital. I do believe these people have a calling. Not only do they help the patients & families, but they become "attached" to these people & often feel the loss when a person passes away yet it doesnt keep them from helping the next family and patient.....Until you have had the need for their services I dont think you really comprehend how much it helps or how little appreciation they get from the general public, AGAIN until you need the services you wouldnt know!