Hello, my name is Mary. I’m 72 and recently retired from my job as a
bank teller. I live with my husband George, who is 83. We have 2
daughters who are married with children of their own and they both live out of
state. We live in a rural suburb in a 2 story home on 15 acres. We
love the peace and quiet; our nearest neighbor is ½ mile down the road.
George was diagnosed with Prostate Cancer about 12 years ago. He was
treated with medication and with radiation therapy. George beat the
cancer and we thanked god and put the whole ordeal behind us (or so we thought).
About 2 years ago we started to notice that George had blood in his urine.
We took him to the hospital, and they told us he has “radiation induced hemorrhagic
cystitis secondary to soft tissue radionecrosis”. They gave George some
kind of injection and the bleeding went away.
George’s doctor has also informed me that George is beginning to display
early signs of dementia.
2 weeks ago George began to bleed again. He went back into the
hospital and stayed for several days. During this time they ran fluids
into his bladder to wash the blood out and tried several different treatments.
They told us that the treatments had helped, but not to be surprised if there
was still some bleeding at home.
Over the past several days George has been bleeding intermittently
throughout the day (and night). He’s losing the ability to control his
bladder, and often has pain and trouble peeing when he’s bleeding. We’ve since
gone to the local ER and talked to his PCP, and we were told that this was
normal. I was told that we should return
if he begins to “demonstrate substantial hemorrhaging, expel significant clots,
or experience total obstruction”. I have
no idea what any of this means…George is quite frustrated with the healthcare
system at this point and he blames his suffering on the radiation therapy.
He’s also starting to get confused at night. I’ve been up every night
with him for the past 4 days; neither of us have gotten much sleep. To
make matters worse, George almost fell last night while he was in the bathroom.
I got under his arm to help him keep his balance, but I almost fell too, and
today my back hurts. We are both also completely exhausted.
I feel like I need help taking care of George. With both of our
daughters out of state, we don’t have anybody to help us. When they
discharged George from the hospital they rushed us out the door and didn’t
really answer my questions about how to take care of him. I’m frustrated and
feel like I’m in all alone.
Mary,
ReplyDeleteI am so sorry to hear about the recent health problems that you are facing with your husband, as well as your negative experiences with the medical community. The stress of working through the medical care details in the midst of supporting and caring for your husband sounds overwhelming. I’m wondering if the idea of a case manager is something you have considered? A case manager can serve as a resource for people to help them find appropriate services and navigate the medical community. Many people find the medical community to be difficult to understand or manage, and I gather you are experiencing the same thing. It is likely that a case manager could be assigned to you through your insurance company. If you are currently using Medicaid, you can call the number on the back of your card to inquire. You may be eligible for services in the home or some other program that will give you some help with caring for your husband.
I am also wondering if your daughters know the extent of what is happening with your husband? Although they live out of state, they may be helpful if only to serve as support for you. I don’t know the kind of relationship you have with them, so forgive me if I am off base, but they may appreciate the opportunity to support their parents however they can.
Either way, I wish you luck as you move forward and I hope that my response provides helpful information. I have provided resources for you below which include the AARP Medicare options and a link to explain the definition and philosophy of case management. Feel free to continue posting if you have further questions for me!
AlwaysPeopleFirst
HYPERLINK "https://www.aarpmedicaresupplement.com/" https://www.aarpmedicaresupplement.com/
HYPERLINK "http://ccmcertification.org/about-us/about-case-management/definition-and-philosophy-case-management" http://ccmcertification.org/about-us/about-case-management/definition-and-philosophy-case-management
Hello Mary,
ReplyDeleteIt seems as though you and your husband are facing some difficult situations at this time. Personally, I have always found it difficult to watch a loved one lose the independence they once had due to medical complications. There are some wonderful programs that may be able to assist you in caring for you husband. The Area Agencies on Aging have a wide range of community-based long-term care programs that can possibly assist with services for you and your husband. The program will complete an in-depth assessment to see what services your family may be eligible for and then assist you with obtaining the suggested services. For more information about the services available in your community, the Pennsylvania Department of Aging has a wonderful website that explains the services available in detail. The website is HYPERLINK "http://www.aging.pa.gov" www.aging.pa.gov.
Another resource that you may consider accessing would be the American Cancer Society. They have information available on specific types of cancer, and support and information for caregivers. This may be useful to answer any questions you may have concerning your husbands on-going treatment and future needs. The website address is HYPERLINK "http://www.cancer.org/docroot/home/index.asp" www.cancer.org/docroot/home/index.asp.
Finally, I understand that your recent experience with the hospital was not a positive one and that you felt that they did not answer your questions regarding your husband’s needs. However, the hospital does have a resource that would be able to assist you in locating services and assistance for your husband’s needs now and in the future. There would be a social worker on staff that should be available to assist you in accessing additional services. According to Sadhna Diwan, Shantha Balaswamy, and Sang Lee in a primary care setting, “The social worker completes a psychosocial assessment to determine the strengths and service needs of the patient, develops a care plan in partnership with the patient and family, and seeks input from all of the health-care professionals involved in the delivery of care” (as cited in Gehlert & Browne, 2012, p. 409). This assessment would not only determine the level of need for your husband’s care, but it should then lead to assistance in locating and accessing the recommended services.
Mary, I hope that you have found this information to be helpful and that you are able to obtain assistance in caring for your husband. I also hope that you find some time to take care of your own needs as well. As caretakers, we often forget that we need to take some time for ourselves. Give yourself permission to take a break once in a while and lean on friends and family if possible.
Sincerely,
Anna
References
American Cancer Society Information retrieved from www.cancer.org/docroot/home/index.asp
Diwan, S., Balaswamy, S., & Lee, S. E. (2012). Social work with older adults in health-care settings. In S. Gehlert & T. Browne (Eds.), Handbook of health social work 2nd Edition (pp. 392-425).
Pennsylvania Department of Aging Program Information retrieved from www.aging.pa.gov
Hello Mary
ReplyDeleteBefore we begin, I want to say that I admire your willingness to be transparent about your struggles, and to reach out and ask for help from your online community. I would like to make sure that I understand you right, so I shall take a minute to repeat back to you what I understand of you and your husband’s struggles from what you’ve posted.
Twelve years ago, George was treated for prostate cancer using medicines and radiation, and all was well. Two years ago he was diagnosed with “radiation induced hemorrhagic cystitis secondary to soft tissue radio necrosis”, which in layman’s terms means his bladder is bleeding as a result of damage to the tissues from the radiation treatments he had ten years ago. George was given an injection, and the bleeding stopped.
Then, two weeks ago, the bleeding began again. George spent several days in the hospital and was given a number of treatments, which helped some, though you were told he might still have blood in his urine. For the past several days, the bleeding has persisted. You’ve been to the ER and seen your PCP, but they’ve advised you that his current symptoms are normal. You were told not return to the hospital unless he starts passing large amounts of blood, large blood clots, or is unable to urinate at all.
Whether or not this is good medicine (I tend to think it isn’t), the persistence of George’s symptoms is exhausting both of you. Neither of you are getting good rest, and George may become weak and anemic from continued blood loss. Mary, if you are angry at the healthcare system (it sounds like George is) you are right to be so. Let’s channel that to get results. Help you need, and help there is.
First of all, there ARE effective treatments for a radiation-damaged bladder. Radiation is known to damage the capillaries, veins, and arteries of tissues, hence the bleeding. According to an article on the National Institute of Health website, the best treatment for radiation-damaged tissues is hyperbaric oxygen therapy, between 20 and 40 sessions being necessary (Kumar et al., 2011). If your husband was in the hospital for less than a week, with no follow-up treatments prescribed, perhaps he didn’t get the most effective treatment for his condition. This may explain why the condition persists.
Secondly, George’s symptoms could also indicate that the cancer has returned. I am wondering if George has been receiving regular blood tests, since his initial treatment for cancer, to check the level of prostate specific antigen in his blood stream? According to a physician writing for a Harvard website, prostate cancer CAN recur, but regular blood tests can catch it, and treat it successfully. If he hasn’t been watching for recurrence, do you know if the doctors ran tests recently to rule out a recurrence of the prostate cancer?....