My Dad is on Hospice for the second time. Several years ago he was diagnosed with terminal lung cancer. It never seemed to progress, so Hospice discharged him. Last year he was diagnosed with terminal bladder cancer. He has declined very slowly but seems to have stabilized. He has been here for over nine years. It’s hard because I love my Dad but my husband and I would like our lives back at some point. We never dreamed he would last so long. It’s a great conflict because we do love him but we are so very tired of 24-7 care. Even with Hospice help it is very difficult. Then I feel guilty because I want this over with yet I don’t want him to die. The emotional roller coaster is so hard. I know there are many people who would like more time with the one they are caring for- and I try to see this lingering as a blessing…but I feel that I am at the end of my rope with this.
Annie C.aregiver
Annie – I really do know what you are saying regarding “the lingering”. My Mom has COPD and hasn’t been very well at all for over 2 years. My Dad and her husband of 48 years died 3 years ago – 4/7/07 of pancreatic cancer. It was painful, brutal and a very tough time for not only me but the whole family, but it was quick. About a year and a half ago, mom had had some leg surgery and the kids and I were staying with her (when she still had the house I grew up in). I walked by her room one night and heard her praying out loud – “Lord, my body is tired and it hurts. I’m ready when you are ready to take me.” I cried, but I also understood. She just got diagnosed with lung nodules and pneumonia – nodules are prob cancer, but since she doesn’t want chemo etc there really isn’t a point to putting her through painful diagnositic procedures. I don’t want to lose her, but I also don’t want to watch her suffer . . . I do know how you feel.
Thanks for posting – keep us posted.
Marietta
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Dear Annie,
I am so sorry to hear of your father’s health issues. I agree with Ann that you should consider other options. To be told that he has terminal lung and bladder cancer just doesn’t seem right to me. And then he is being told that he is stable after 9 years. I was a nurse for over 30 years before I got the “Big C” myself. I think if you check into agencies, he may qualify for home health aid. That would be a great source of help to you and your husband. Even having a date night once a week would relieve some of the pressures. My father was very ill and needed care 24-7 and my mother became frustrated as I was taking chemo at the same time my father was so ill. I saw her fading inside herself as she wanted to remain strong, but she is a very active woman. I finally told her to get out with her friends once a week and the agency came in and sat with Daddy. I was doing well enough that I didn’t need her 24-7…but was not well enough to care for Daddy if he needed help just in case he fell. Mom started coming back to us in her “normal” self, Daddy did fine with an aide’s help, and I got relief that Mom was not so stressed. I don’t know if this helped in any way, but I will keep you in my heart. ~Bev
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Hi Annie. I’ve been coming to DLH since the beginning of the year, but usually I do so quietly. Today it seems I’ve found a little bit of my voice, all thanks to the encouragement I receive in reading the stories other share, and with the kind words expressed to me by Jean yet again. I took care of both of my parents before their passing five months apart in ’07. I cannot tell you that I understand what you’re feeling, yet I will tell you that I’m sorry for the pain and confusion you feel, and that I’m glad you found your way here. You’ll be in my thoughts and prayers. Peace and love, DeeDee
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Hi Annie, Just a little note to say we are thinking of you here at DLH, and hoping things are getting better for you. When you have a moment we all would love to hear from you.
~Char
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Annie — I can only imagine what an emotional roller coaster this situation must be. To always be dealing with a near-death situation and then sliding back from the brink again for several years must be exhausting. No matter how much we love someone, I don’t think any of us has infinite capacity for long, drawn-out constant care-giving over several years without hitting some serious bumps of our own. There is a lot of caring and support in this group from these lovely people; I am glad you found DLH.
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Hello Dear Annie, I LOVE your name, because I am an Ann, but I still am called Annie by close family members….an endearing name:-) OK, here goes-let’s cut to the chase. You and your husband obviously have your hands full, and you are getting burned out. I am an RN/currently a stay-at-home mom, and my husband is a diagnostic radiologist, so between the two of us, we have years of experience in health care. First, I don’t understand about the diagnosis of lung cancer…usually that is not a good thing and often terminal. Were you ever given follow-up information from your dad’s physician about this diagnosis? Was chemo and/or radiation done, and, if so, what were the results? Any lobes of the lung removed? Was your dad a heavy smoker over an extended period of time and/or was he exposed to some sort of toxic chemicals over a long time (in his work situation)?
Annie, I’m sorry to be throwing so many questions at you, but I am confused as to the follow-up of a “terminal lung cancer” diagnosis. I REALLY want to help you here, but I feel I need more info. Did anyone do a CAT Scan or MRI of the chest at any time after Dad’s diagnosis?? Please let me know what happened to your dad after the lung cancer diagnosis-what kind of treatment did Dad receive, what did follow-up results show, etc.?
So now you were told that Dad has bladder cancer, and he’s currently been with you and your husband for over nine years. I don’t know where you live, Annie, but something HAS TO CHANGE!! For the sake of your father’s medical care, for the sake of you/husband understanding what is really wrong with your father, and for the respite care that you and your husband so desperately need. “Respite care” is basically short-term, temporary relief provided to you and your husband, knowing that you have a competent person caring for your father while you and your husband can enjoy some well-deserved time to relax.
Suggestions: If you have not already done so, I STRONGLY suggest that you accompany your dad to the next one or two doctor’s appointments. Come armed with a list of questions…what about the lung cancer?, what is Dad’s current prognosis with his bladder cancer (what is his current condition, how long can we realistically expect him to live, etc.). Hey, Annie, my husband is a doctor, and there’s no way in Helsinki that he’s God, so DON’T be intimidated by your father’s physician. Doctors are HUMANS, and they may not be giving you all the info. you need. ASK that doctor EVERYTHING you can about Dad’s current condition, what you should expect down the road, etc.
THEN, ask if you can speak to a social worker-and/or others who deal with caring for an elderly, possibly dying patient. You should NOT have to be shouldering the lion’s share of the responsibility of your father’s care. If finances are an issue, I know that in the state of Iowa-where I live-Medicaid-is provided to indigent patients who cannot pay for their medical care (as opposed to Medicare).
Please post again with more specific details and or questions, so we can help even more, and BE ASSURED that there is medical help out there to help relieve you when you need a break. We just need to know a bit more, and you may need to ask a few more questions and be more assertive. In the meantime, hang in there and know that we are all thinking of and caring for you. We’ll get you through this, Annie!! Can you tell us what state you live in, so I can check about your medical coverage, etc.?
Much love,
Ann
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Hi Annie, thank you so much for sharing your story because it is one that many of us have lived or will live in our future and that is because we love and we care-this site is all about people who care. I am soon to be figuring it all out too as my parents are both living and are 83 and in need of some special care. I live 2.5 hours away from them only because my significant other who I am a caregiver for needs to live near specific medical care because he is on the liver transplant waiting list. I miss and love my father as I know you do. I moved my parents in to a retirement apartment recently (they call it gracious living). Because my father was in the Navy in WWII he is eligible for VA benefits to assist him with the rent there (that is the only way they can afford to live there (no cooking, no cleaning, emergency call buttons, they never need to leave the building if they don’t want to). I also learned that the actual VA hospital has a respite program, so, I have that in the back of my mind for the future for my Dad when and if he comes to live with us. My thought is, may be your Dad is a veteran? It is completely understandable to want to have your life back. There are not a lot of people in this world that care like you and your husband do. You are angels flying too close to the ground. If at all possible see if you can find a trusted/caring person to give you time and/or you and your husband time to have a date each week. This one isn’t easy-one thing I am trying to learn is to find some humor in the day when possible and humor really has been helping me (of course the tricky part is to be sure when I laugh that it is understood that it’s not because I find caregiving funny at all, it’s because laughing sometimes can be healing). Yes, please keep us posted on how you are no matter what it is. You are in safe hands here.
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Great advice. I like the humor aspect too. As a health care provider as well I think that explains why so many of “us” (speaking for myself – a nurse) are so twisted sometimes. Its a coping mechanism. Boy – you have your plate full as well. So glad my Mom lives in town. Hugs, Marietta
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Annie,
I am sorry to hear of your dad’s illness. I think next to Alzheimer’s, cancer is right next to it. My thoughs, prayers and love to all of you, especially you and your husband. I understand what you are going thru. My mother-in-law lived with us for ten years before she passed. She moved in with my husband and I before we were even married. I enjoyed those ten years; she did not have cancer, but had congestive heart failure, was an alcoholic and had numerous health issues. I like to believe something as simple as her living with us gave her the strength and the added years that she had; six months after Anna passed, my mother moved in with us and has been with us for nearly 15 years. She is 80 years old, works full time and does not have any health issues other than COPD. But her memory and mind is fading quickly. This may be her last year of working and perhaps her last year of driving. It is very difficult to see our parents fade before our eyes and for us to become the parent and them the child. I have struggled witih this quite a bit and this site, Jean and the others, have helped me tremendously. Please feel free to email any of us. We are always here for you. This site and these folks have brought me such comfort and strength. I hope it does for you too. Stay strong, remember to take time for yourself. Are you getting any type of respite care for your dad? That would be someone coming in to give you and your husband some relief. I will keep my mind busy in trying to help come up with some solutions to your situation that would benefit all. Again, please let us know how you are doing. Blessings-Susan
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Oh Susan – Parenting the parent sure hits a chord with me. My mom is very “with it” most of the time, but when she gets fuzzy – it’s a bit scary. Fortunately I haven’t had to “take away” driving because she feels too lousy to go anywhere. You are not kidding about how hard it is to see that gradual decline. My mom and I are very much alike and because of that we have the occasional “clash”. Each day I pray for patience (now! – LOL) and try to take it in stride – but over 9 years – that is a big piece of time and of your life. Keep in touch and thanks for posting. (to Annie)
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Hi Annie, Yes you should be tired, we look forward to hearing from you again, with a little more information, as Jean said, and we caregivers at DLH we will put our collective heads together and try like heck to help you with some of the best ideas and information we can provide. BTW, I think you and your husband have done an amazing job.
~Char
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Dear Annie, of course you’re tired – 9 years! Having anyone in your space for more than a week can be trying, whether they’re wonderful friends, healthy family, whatever. You’ve gone above and beyond, as caregivers are so often called upon to do. No one doubts that you love your father – you’ve proven that by caring for him all this time, and it’s only natural that you and your husband are are yearning for the life you envisioned for yourselves. I’m sure some of our caregivers might have some ideas for you – can we get a little more info? When you say your father is stabilized – is he bedridden or can he get up and around?
My mother always quoted that old saying, “Company is like fish: after 3 days it starts to stink.” Of course now when I come to visit she’s sad to see me go after 3 weeks, and within a month she’s telling me it’s been too long since I was there last. The times (and our parents), they are a changin’. ~ Jean
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I love your Mom’s saying about company. It’s so true. And the times are indeed a changing! Thanks for all you do and for this forum.
Marietta
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