There have been so many posts that I have read and think to myself that "this is just like what's happening to my Dad".My Dad is 80 yrs old and hemiplegic left side for the past 6 years. October 1, 2007, he apparently had another stroke, right side, and while doing the necessary work up for admission, the x-ray revealed a mass in the top left lung. Two days later, still suffering from the after effects of the stroke, the needle biopsy proved the mass was malignant. Because of the partial paralysis and the stroke that was ongoing, the doctors chose NOT to try an MRI or PET scan. Nor did they recommend treatment...On the third day we were told to take him home, get Hospice, and keep him comfortable. Had it not been for the Neurologist, they would have discharged him the same day. He was released 15 October, with very little evidence of the right side stroke except dysphagia. The doctors would not even tell us what stage the cancer was, or for that matter, help us understand how we should cope with this NSCLC. Now, 90 days later, he has lost nearly 20 pounds, from 140 to 122. He was 6'3" tall before and close to 200 pounds in 2002. The Christmas holiday was good because he was able to see his youngest grandson home from Iraq. It seems as though he was still alert although the past 3 weeks he seems to sleep most of the time. This past Friday, 1/11/08, we discovered 2 bad skin tears. One is a stage I pressure sore on his shoulder, but, the other is at the sacrum/tailbone and it is bleeding and very painful. HOSPICE has NOT been very helpful for us. They have cut the nurses visit to only once a week. They say it is to keep Medicare happy...but, we are like 3 blind mice trying to grope and stumble our way through finding out how to care for him. My Mom is 76 years old and up until 14 months ago, she took care of him by herself with me helping to put him to bed at night. I've researched the internet on how to treat these bedsores, because we dont get much response from the Hospice people or the doctor, other, than "Well, that's to be expected and it goes along with being terminal". I'm sorry, but, that just seems heartless to me. I'm determined to keep him comfortable. He eats very little now. My Mom is obsessing on keeping his bowels active, so, she gave him an enema yesterday. Now, he can't stop...I'm just lost in this jungle of inexperience and ignorance. Any advice is appreciated.
My heart goes out to you. What a wonderful daughter you are to be doing all of this research on behalf of your Father. God bless.
I have no experience with bedsores, but understand your frustration. If hospice isn't on board and doing what you want, research and find a different hospice group. I've seen many people give their original hospice team the boot when they aren't doing what they are supposed to be doing. Clearly this is what is happening in your situation. There must be alternative hospice groups in your area -- I hope. If not, call their supervisors and demand better care. I didn't think Medicare had anything to do with hospice care, but never was in that situation. Be assertive and get the right help for your Dad. It will give you peace of mind during this very stressful and painful time.
Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.
Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!
If patients are on Medicare, Medicare covers Hospice.
Lady, I understand your frustrations. The hospice who took care of my mom had told me that the nurse will come once a week and the home health aide three times a week. My mom was on Medicare so you should at least get that. In addition, I was told if we needed anything, call and I would get help and/or a nurse would come out. She had a great team. Hospice does not take the place of a caregiver, you still have to have a caregiver, which you are. But they should fully support and educate the patients and caregivers.
As for the bedsores, Mom's hospice gave me a very thick cream, I can't remember the name of it. It is very thick and was terrific for that. We slathered that on her under her Depends. Ask your Hospice care team about a cream to prevent/heal bedsores.
PBJ and Tera, thank you for your replies. I really took out a lot of frustration on the keyboard last night. You are both right about the Hospice folks. I need to spend some time on the telephone talking to another agency. We live in a small town in rural South Texas. No hospital, one doctor, and a newly organized Hospice to cover this area. We had to take my Dad to a hospital 30 miles away and no doctor will take him as a patient unless he lives in the same town. He has Medicare Supplement insurance and Medicare, so one would think that it would not be so difficult to find good care. More importantly, we are just tired and confused. We began to be complacent after 6 years of living with the first stroke and then this second stroke and the discovery of the cancer. I know it's time to step back and let sanity prevail with God's hand on the steering wheel. Thank you both for sharing your lives and advice. I will share these posts with my Mom. It will help her too!! god bless!!
Finding GOOD healthcare??????? You would not think that a problem in this day and age would you???? I am sure a lot of people on this forum would agree that in this day and age the whole healthcare system is kinda bleak..... You really have to be an advocate for your own and your loved ones healthcare. Medicare does govern hospice as well as homehealth. If Medicare is the payor than they call the shots. The one thing that I would encourage you to check is if your dad can have homehealth and hospice at the same time. Last time I checked a medicare beneficiary was entitled to both if they were treating two different disease processes. Homehealth could be called in for the pressure ulcers, while hospice is treating his end stage cancer. There are many remedies for the pressure ulcers from creams to certain dressings that cover them. I am very disappointed that hospice is not being a bigger help to you with the supplies you may need to appropriately care for your dad. As for the treatment available over the counter, I suggest you ask your local pharmacist. The cream that Tera mention is just called skin barrier cream and I think it is available over the counter. Hope this helps. Your family will be in my prayers
I don't know if it is over the counter or not, the hospice nurse brought it to me. I think it had an antibiotic in it too, the name of the cream was suggestive of that. It not only was great at preventing tne sores, it made her skin look a whole lot better where it was beginning to break down.
My father was given two cream in two different hospitalizations. The are both made be the same company and both have dimethicone as there main ingredient. One is called "Baza Protect. This cream has Zinc Oxide as its main ingredient. The second one is called "Sween 24". It does not have the Zinc Oxide... just dimethicone. They are both Lanolin The Sween 24 specificaly states the it is Lanolin and fragrance free. Both of them seemed to help.
My mom had a really bad bedsore/pressure ulcer over her last 2 weeks of life. Hospice, fortunately, was fantastic with her, and used only bandages on her sore area, after cleansing it with sodium chloride...the Hospice nurse said that a lot of the time, it's best just to leave them in their own liquids once you've cleansed them well, and cover them with bandages so that the urine doesn't leak back onto them. Thank God, mother's Hospice care was there, and very caring...I'm so sorry to hear that your dad's service isn't very good...but I'm twice as sorry that your dad is sick...many people on this forum, including myself, have experienced what you are now, and can relate to how you feel. God bless, and keep us informed. Take care of yourself, Kim
...keeping the faith in n.c.
Helen, my wonderful mom, diagnosed May, 07
fought-stage 4 NSCLC, (adenocarcinoma)
earned her place in Heaven, Dec. 14th, 07