• Husband not trying to get back to normal

    Asked by lucifee83 on Saturday, July 28, 2012

    Husband not trying to get back to normal

    My husband has been in a hospital bed since May 8th. He had a broken arm, compression fractures in spine, and broken right hip socket. Titanium rods placed in both upper legs. He has yet to begin walking again, and has no urgency to do so. The most he's done is stand up for 2 minutes in one spot. Has lifted feet occasionally, but no attempt to walk. I'm his primary caregiver, and work full time. His mom stays with him while I work. But the rest of the time it's just me. I'm getting very tired and frustrated with the lack of urgency he feels. I no longer have a life, and it's getting me down. I work, come home and care for him. I have nobody to sit with him. I can leave the house for about an hour, to do chores, but that's about it. Any ideas how I can get his XXX off the bed and back to life again? I understand he may be depressed, but he can't just lay there. I almost feel like I should leave him alone for the day so he HAS to do things for himself. But I won't. It's not safe.

    10 Answers from the Community

    10 answers
    • nancyjac's Avatar
      nancyjac

      I think the first step is to acknowledge that cancer changes a person's "normal". Cancer survivors usually have to find a new normal because it just isn't possible and often not desirable to return to a pre cancer normal. On top of that, in your husband's case, he also had multiple fractures. If he has had chemo and other treatments for his lymphoma, the ability of his bones to heal from those fractures is going to be much more difficult and take much longer. Cancer is a marathon, not a sprint.

      I would suggest that you discuss his current condition with his doctors so that you have a realistic expectation given his condition. I would also ask for a referral to a social worker, case worker, or home health care company, or other resources that might be able to provide some caretaker respite.

      almost 5 years ago
    • Carol-Charlie's Avatar
      Carol-Charlie

      Have a talk with his doctors.... my goodness, why wasn't he put in a nursing home, or given physical therapy in the house... I'm guessing he's terrified to take a step! I can't immagine having all that done and then being left alone. Does he have a walker? He might be more comfortable walking with that around the house. Get a raised seat put on the toilet and draw him a cute map of how to get there... make helping him fun. But before all else, sit and think of all this man has been through in the last three months... 3 months.... only 3 months. Arm, Spine, Hip, and both upper legs... I stand and applaud him. Ask the doctor if he could take an anti depressant to give him a boost.. get him some Vit.B12.... ;AND please cheer him on and tell him how glad you are that your together... Get talking with that doctor of his and make a plan of action.... I'm 69, at 62 I had a diagnosis of stage IV (upgraded to stage III) ovarian cancer... Major surgery... then MRSA hit me and right back into hospital; I did two years of chemo and two months later had one knee replace and six weeks later the other... as I told my oncologist IF I'M GOING TO LIVE... I'M GOING TO WALK. Stand in front of that man... tell him how much you love and need him in your life... tell him he has to get up and start living again.

      almost 5 years ago
    • SunnyCloud's Avatar
      SunnyCloud

      Being a cancer survivor, non cancer patients'/survivors' lack of patience or understanding makes me very angry. Daily I suffer from weakness, tiredness, flesh tenderness/pain, tingling in legs and feet, muscle weakness and ache, and finally, vaginal shrinkage. Im 42 and feel 92! Not to mention the worry about cancer coming back. Yet, I am expected to be as normal as before. I am expected to get out of bed and clean the entire house. I am expected to want to have sex and have it happily with no complaints. I am manhandled even though I have expressed a thousand times that it hurts when I am slightly touched. And of course, I am expected to be happy and grateful. My point is, that although it is difficult for you to deal with a cancer survivor or patient, YOU should try to understand that apart from physical appearance, there is a lot that you do not see or know that goes on inside. YOU do not know what it feels like to have these difficult physical changes and side effects or what goes through the mind. So if you love your husband, you should try to be a little more emotionally supportive or get him some help. BE UNDERSTANDING! I HATE my husband when he complains or gets mad at me. Oh how I wish I had his problems, his complaints instead of mine. Sometimes he makes me so angry with his lack of love and understanding that I have wished out loud for him to get cancer and go through cancer therapy...see how much I will care...see how much he will like it. I seem to remember the words, "In sickness and in health." May God look to your husband and bless him with His loving mercy and grace.

      almost 5 years ago
    • lucifee83's Avatar
      lucifee83

      First, I'd like to say that I came to this sight for some support as a caregiver. The obvious BASHING from cancer patients is a bit much. I'm not asking that he go run a marathon. I simply want him to stand, pivot and sit in a wheelchair. To TRY. That's all I've been asking, for him to TRY.

      Perhaps you can tell me where CAREGIVERS are welcome. Because I certainly don't feel that way here.

      I totally get that his life is upside down, and there is no "normal" anymore. But he can't just lay on his XXX for the rest of his life, all the while saying "I want to go fishing, we should buy a boat.". I'm going to start a new business. Without at least the effort to stand.

      I wanted to have him go from hospital to rehab to get back on his legs. He refused. Wanted to be cared for at home. So this is what MY "new normal" is. I did not have a choice in the matter. So don't get on my XXX when I get tired, frustrated, and overall cranky., I asked for help, not bashing., I'm looking for ways to cope with this, same as he is.

      almost 5 years ago
    • Carol-Charlie's Avatar
      Carol-Charlie

      Hope you don't mind but I'm going to shorten your signon to Luci...You sound like a go getter, and I understand your fear and anger at this situation. My Tom didn't ask to have to do everything for me for a few years... until I got better... I could manage the laundry (one story living is great), was three years before I went down to our lower level... But on the main floor I tried. Chemo taks so much out of one, that I spent so much time sleeping... He was alone. He loves to fish (so did I) but I think he only went a few times those first two years... Oh and this saint of a man... told me I was Beautiful... I was standing there with no hair... and he said Beautiful. I looked in the mirror and asked him to get his eyes checked. He told me that was what he saw and he was sticking to it. Ask God to put the love back in both your hearts... Start smiling when you see him in the morning.... kiss him when helping him wash up... Say I love you. These things were so important to me.
      I asked him, that if I got better would he take ball room dance lessons, so we could go dancing.... He said of course (I suppose I could bring up that it's almost 7 years and we haven't found the time... But with our adult children we've gone for a week on the outer Banks of NC' - done a week in Cape Cod... Found the graves of my Revolutionary war forefathers.... He's held my hand, washed me clean, kissed my cheek, pushed me in a wheelchair, and now we walk together and on August 18, will dance at our grandson's wedding... I was 62 when diagnosed now I'm 69 and he's 71, he's my husband - for better or worse, richer or poorer and in sickness and health.... Pray, ask God to Guide you... ask god for his help... He'l give you strength, he'll give you help, and if you ask... He'll give you both your love back! Let the caregivers help you... try not to take things as an attack... We really all joined this wonderful site to help and be helped by this large 'extended family' of people walking the same paths that we are. God Bless.

      almost 5 years ago
    • nancyjac's Avatar
      nancyjac

      Luci,

      I did not bash you, obviously or otherwise. However, I think you did obviously misunderstand my marathon vs. sprint analogy. I'm not suggesting that you husband run a marathon, but rather that cancer treatment an its effects are more like a marathon than like a sprint in that it is long and slow rather than short and fast.

      I have been both a cancer patient and a caregiver. As a caregiver, I understand the frustration and tedium of having to work, care for your spouse, and do the things that he use to do as well. It doesn't leave time for anything else, and you have to set priorities and let those things that don't make the priority list go. The same is pretty much true even when you aren't a caregiver. We all have to set priorities and do what we need to do.

      Several of us have tried to give you help in the way of suggestions. You seem to have chosen to see only what you see as bashing and ignore the help. Granted the question you asked is "How can I get his XXX off the bed", which is a question we cannot answer. But we tried to answer what seems to be the more pertinent and realistic implied question "How can I cope as a caregiver". If ranting and whining and feeling sorry for yourself helps you, than by all means carry on. However, even if it does, I think you will find that help very short lived. I will reiterate what I said before.

      Talk to his doctors and get a realistic understanding of your husband's condition. "Laying on his XXX for the rest of his life", as you put it, may be a more realistic outcome than what you are expecting. You said he has been in a hospital bed since May 8th, but surely in his condition he has had medical appointments since then. Whether you take him to those appointments in a wheel chair or the doctor visits him at home, you need to have a realistic long term plan. There are many possibilities available to you if you seek them out. Consider counseling, a peer support group, and the many individuals and organizations who provide caretaker respite services.

      almost 5 years ago
    • danellsar's Avatar
      danellsar

      Lucifee- I sympathize. I was my husband's caregiver throughout his fight. By the end he could not get out of bed or do any personal care.

      I think I would be asking his doctor's for some help. Ask for home health care to come in. Also in home physical therapy should be coming in daily to work with him. Ask if it's reasonable that he should be getting up and moving each day at not quite 2 mos out from his surguries.

      If he cannot care for himself, and you cannot be there and care for him 24/7, ask if maybe he should be in a skilled nursing facility. My husband was moved to a nursing faciliy for the last 2-3 months of his life because he needed round the clock care and I couldn't do it. We have kids, and I work, so I couldn't be there and do that. Also, I couldn't lift him or roll him to do personal care. It was his choice, and it was the best one for us. Hopefully the doctors can work with you to get him up to whatever level of mobility he is able.

      Mostly, though, give him a break and give YOU a break. See if you can find someone to stay with him for a few hours and go have coffee with a friend, do the shopping leisurly, get a haricut. Remember that YOU have to be on the list, too, so you will have strength for the battle ahead.
      Ellen

      almost 5 years ago
    • lucifee83's Avatar
      lucifee83

      Update - although I was upset at some of the responses, they did help me quite a bit. I've just learned to let go - I can't solve everything, and if he wants to do it, he will. If not, his life. We do have a nurse coming in once a week (more if bloodwork is needed), and PT twice a week for 1/2 hour. The rest is up to him. Thanks for calming me down. And I am looking into many of your suggestions.

      almost 5 years ago
    • nancyjac's Avatar
      nancyjac

      Letting go of the small stuff is a major, major step Luci! I would still suggest you talk to his PT about his progress. I think it is very important for you to know (both for his sake and your own) how much of this is physical limitations vs. psychological. Being willing (or not) and being able (or not) are two very different things.

      almost 5 years ago
    • Ken52's Avatar
      Ken52

      Howdy all
      so much good information from all the previous ladies... I cannot say it any better than what has been posted below, what I can say is what I am experiencing as a patient - survivor... As much as I want to do, which was my norm before cancer, I can not do. I have good days and I have bad days. A lot people do not recognize this as I look like I did before cancer. These same people think I can and should be just like before.???? I do recognize some of the hardships a care giver goes through - I can only imagine the emotional levels. Cancer is terrible for both. with that said - I believe the one thing I would care most for is to see the caring from both sides - care giver to patient and patient to care giver. I sometimes wonder how much of this seems to get lost . I know what helped me so much in my treatment was having positive vibes all around me - staying away from the negative. This is not so much an answer to lucifee83, but agreeing with what the ladies say below. Wishing all a great Day!

      almost 5 years ago

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