Larry's Wife Posted July 18, 2008 Share Posted July 18, 2008 I read somewhere on this site that 40% of caregivers predecease their patients. At the time I read it, I thought it laughable. But now Larry is 1 1/2 months from his last chemo. And it's two steps toward and one step back from the end. And it's killing me. Larry has me beat by 4 inches and more than 50 pounds, even at his deteriorated weight. And I'm not physically strong. The more help he needs to transfer from bed to wheelchair, from wheelchair to recliner, etc., etc., the closer I feel to a heart attack. This morning, I was actually panting. I am physically and mentally exhausted. I haven't been out of this house for a month. Not once. I'm not his only caregiver. Our oldest daughter is staying with us. She is a great help and is much more physically fit than I am. But I am the day shift and she is the night shift, so both of us have many chores to do without the other to help. I pray she doesn't end up taking care of the both of us! I think I have come to a decision, though. Larry and I have always agreed about what we wanted at the end of our lives. To die at home. But I've changed my mind. I do not want to put my family through what I am living. So I will die in a hospice home. Unless I don't survive this. Then it will be a moot point. But, I want to live! I want to raise our son and live some life! I want to go on a cruise and ride horses and maybe even see Europe again. Please, Lord, let me survive this!! Quote Link to comment Share on other sites More sharing options...
peebygeeby Posted July 18, 2008 Share Posted July 18, 2008 Hi Lynn, I don't really know what to say... but I am really sorry that things are so tough. Hank really wanted to come home to die, and I really wanted for him to have his wish. It just did'nt turn out that way for him. As I was anticipating having him come home under hospice care, it was really freaking me out. I did'nt know if I would be able to handle all that I knew would be involved. Quite honestly, I did'nt want to do it. Hope that does'nt sound horrible, but those were my true feelings. But, I really wanted him to have what he wanted, and I would have done everything that would have been needed, had he come home. Now you find yourself in the position that I was dreading being put it. My heart bleeds for you, and I know that somehow you will find the strength to make it through this. The only way out of any situation, is going through. You will. I'm glad you have your daughter there to help. Are there any other family members that can lend a hand? Can you maybe hire a private caregiver to relieve you even one day a week? You need to search for all possible options and take advantage of them. You need to take a break and escape for a little while. I wish that I knew what to say, something that might truly help, but please know that I know your pain. (((((Gail))))) Quote Link to comment Share on other sites More sharing options...
fillise Posted July 18, 2008 Share Posted July 18, 2008 It sounds to me like you need additional home health care. Is that an option for you? I don't know what your insurace might pay for or if Larry is on Medicare, but this sounds like it is physically too much for you. Susan Quote Link to comment Share on other sites More sharing options...
fillise Posted July 18, 2008 Share Posted July 18, 2008 I just went back and looked at your profile. If Larry is not pursuing additional treatments, then you may want to consider calling hospice in if you haven't already. That doesn't mean you are giving up, but that you want to help make Larry as comfortable as possible and you want support for you and your daughter. Susan Quote Link to comment Share on other sites More sharing options...
Larry's Wife Posted July 18, 2008 Author Share Posted July 18, 2008 We are actually already on hospice care and have been since the end of January. They really are awesome. But they are not here 24 hours per day. Admittedly, we are not using all of the services that could be provided. Such as CNA's. Larry doesn't want them. And while he is still aware of what is going on, I can't in good conscience go against his wishes. So I'm his CNA. LOL So, I can envision that we will get some relief at some point in the future, but only after Larry declines further. And none of us wish for that. In the meantime, I'm just gonna have to tone up my muscles. Who knows, I might just get so physically fit that Larry will want to chase me around the bedroom again! LOL Quote Link to comment Share on other sites More sharing options...
Muriel Posted July 18, 2008 Share Posted July 18, 2008 Lynn, I feel terrible about your situation. I really don't think you can (or should try to) go on like this. I agree that it's important to keep Larry comfortable and follow his wishes as much as you possibly can. But, wishes can become conflicting. From what you've said, it sounds as tho. he wants to stay in the home and doesn't want anyone to come in to help you. He probably doesn't realize that it often doesn't work that way and he'll need to compromise some. His most important wish, I'm sure, is to stay at home. I think you need to do everything you can to keep that happening. For it to continue, however, you must have some help. You must get out for a short time and, even more important, you must have some help available to help with transfers. Maybe he wouldn't be too upset if you were to try some help for a specified period of time - just to see how it works for both of you. Maybe he won't hate it as much as he thinks he will. I hope this situation gets better for you soon - and better without Larry deteriorating further. Muriel Quote Link to comment Share on other sites More sharing options...
blueeye Posted July 18, 2008 Share Posted July 18, 2008 Lynn, I am so sorry that you have to deal with this--as several of us also have. I understand. My Mom had to just put her foot down with my Daddy and insist that she get some help from CNAs with the home health services and it was such a relief to them both in the long run. He felt guilty for she and I having to do so much and the CNAs would come in a few mornings and help him bathe and shave. I backed her up with daily care, but I had no help with her. And in my experience--with both parents--they responded better to another person when it was something they didn't really want of feel like doing. Like bathing when it was such a struggle for them to exert the energy. Hugs to you, Leslie Quote Link to comment Share on other sites More sharing options...
peebygeeby Posted July 18, 2008 Share Posted July 18, 2008 Hi Lynn, I agree with everyone else. When Hank and I were discussing what the situation would be when he came home I told him that we were going to need lots of help, and he agreed. You love Larry, Larry loves you. I'm sure he'll understand and accept this. Keep the communication going, be honest and tell him how you feel without trying to make him feel guilty. You have to stay strong Lynn. Don't try to do this alone. ((((Gail)))) Quote Link to comment Share on other sites More sharing options...
jaminkw Posted July 18, 2008 Share Posted July 18, 2008 Lynn, The fact that you haven't been out of your house in a month keeps ringing in my brain. That's just not o.k. I firmly believe we can't really care for someone else if we are not taking care of ourselves. I can hear the problem with the physical aspect of taking care of Larry and understand it has to be addressed but so does the mental aspect. Please try to get a break even if it means imposing on your daughter to pick up a couple of extra hours. Go to lunch with a friend, see a movie, window shop, whatever makes you happy. Who knows, you and your daughter may be able to manage spelling each other for a true break at least once a week or so if you can't find another family member, neighbor or friend to relieve you. Judy Quote Link to comment Share on other sites More sharing options...
recce101 Posted July 19, 2008 Share Posted July 19, 2008 As the only male who has responded so far, I want to throw my full support behind everything you wonderful ladies have said. It's true, and definitely not laughable, that many caregivers die before the people they've been caring for. The stresses -- physical, emotional, financial -- are enormous and relentless. My dear wife was end-of-life caregiver for her father in 1997, then she and I shared that responsibility for my father in 1998, and during the entire period her nearly bedridden mother has either been in the hospital or living with us, and still is at age 93. It took its toll, it really did, even with in-home help. She had to close her business, withdraw from community activities, cut her social contacts -- and that was all before I got sick in 2006! I was an additional drag on her while I was hospitalized or recovering from surgery or unable to drive because the Taxol/Carbo had so blurred my vision, and though I've been fairly independent the past 16 or so months, I know I'm still klutzy and not quite "with it" mentally when trying to help with household chores or look after her mother so she can go to the store. I really think her mother will outlive us both (seriously), but with everything my wife has sacrificed for others these past 12 years, it would give me immense pleasure to see her out and about, picking up some of the threads of her life, thinking about what SHE wants for a change. If that means I'm in a long-term care facility somewhere, that's fine. That's what I've been paying LTC insurance for these past 10 years! Lynn, I'm sure that Larry simply doesn't realize what this situation is doing to you, and to your daughter for that matter. Maybe a third party can get best get that point across to him. My best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Maryanne Posted July 22, 2008 Share Posted July 22, 2008 Wow what could I say. You got so much support and advice here. I just you had some me time and get a pedicure,manicure maybe the hardresser, just something that will make you feel special... I just want you to know that I really feel for you and what your family is going through. I hope somewhrere along the line you can get break and just BREATHE...and relax somewhat. You're a wonderful wife and you just need a well deserved break. Thinking of you Maryanne Quote Link to comment Share on other sites More sharing options...
SandraL Posted July 22, 2008 Share Posted July 22, 2008 Ignore all statistics. Please look after yourself Lynn. Nothing wrong with getting yourself in shape for a chase around the bedroom...loved that. My thoughts and prayers are with you at this time. Sandra Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted July 22, 2008 Share Posted July 22, 2008 Lynn: The statistic I read was that 45% of all caregivers die before the patient they're caring for, and it is NOT just a statistic! In 2004 my then 91-year old step-father became wheel-chair bound, following which he developed early stage Alzheimer's. My then-79 year old mother became his full time caregiver, and during first three months dropped from 134 pounds to 114, while weakening by the day! Everyone (both family and medical professional) told her to put him in a nursing facility, but he had "made" her promise never to do that to him (30 years earlier) so she would not. And every time any mention was made of bringing in a CNA caregiver, he would refuse on the basis that "we" did not need one (meaning my mother could take care of him). Finally, I went out and arbitrarily arranged interviews for part-time CNAs, and there was one "cute" one that he fell for which was one reason he agreed ), the other being my asking him if he was trying to kill my mother (following which I reminded him that if she was dead a rest home would be the first place he'd be going)! Four years later, she still looks like death warmed over, but she does have a CNA who comes in 4 hours a day, 4 days a week and she at least gets out of the house to occasionally shop (usually for groceries, but sometimes she gets so carried away she actually gets a hair cut, goes clothes shopping or--halleujah--goes to the doctor herself! Two weeks ago, I actually "played the cancer card" by making it my "dying wish" that my mother, my daughter and I go on a "last" vacation together and so he got stuck agreeing to have the CNA caregiver stay with him for the two weeks we're going to be gone (See my vacation posting at http://lungevity.org/l_community/viewtopic.php?t=37858)--not just because I wanted two quality weeks with my mother and daughter, but also because I wanted her to get 2 weeks' respite! You can't take care of Larry unless you take care of yourself, Lynn, and if you kill yourself trying to take care of him without outside help, then who's going to be there for your son? You know Larry would never do this to you on purpose. It is his illness that causes him to not be able to see the forest for the trees. One of the most important functions of your hospice care team is to counsel family members--especially family member caregivers. Please talk to your hospice team as soon as possible. They are very familiar with this type of situation and can help you in so many ways in terms of broaching this subject successfully with Larry. Please, please, please take care of yourself, Lynn. You can't take care of Larry or your son if you don't (not to mention that your step-daughter won't be able to keep it up indefinitely either so it's for her sake, too!). Affectionately, Carole Quote Link to comment Share on other sites More sharing options...
simplyklb Posted July 22, 2008 Share Posted July 22, 2008 Hi Lynn, First of all, not leaving your house for a month is NOT OK. I did that for a solid month and my friends saved me from that. I refuse to be a prisoner in my own home. My friends get me out at least once a week. I am finding myself wanting to get out of the house more and more. My mom treats my dad badly. My dad has some mental issues... Don't knows what is excerbating them at the moment and are going to do a brain MRI first and then go from there. I understand that Mom has her own thing going on but I am to my limit. I finally told her she needed an anti-anxiety pill to take the edge off. She agreed to it since my aunt was with me and takes anti-anxiety medications. She is going to try Lexapro and see how it works for her. Like people have replied, sometimes you have to make compromises for your own sake. You really need to talk to your hospice folks and get more services in your home. You need time for yourself. Kristi Quote Link to comment Share on other sites More sharing options...
Larry's Wife Posted July 23, 2008 Author Share Posted July 23, 2008 Thank you all for the wonderful, thoughtful, caring comments. Some progress has been made, with, hopefully, more to come. We have a CNA coming in three days a week starting today. We also have a potty chair, which makes things a lot easier on me. No more walking transfers to the toilet. When I asked Larry to use it, he said no. He wanted to use our bathroom. I told him that I couldn't do the transfer anymore. (On Monday, he lost his footing. I couldn't hold him up, so he banged his knee.) But I could transfer him to the chair, so if he would just do this for me, I would really appreciate it. So, we've already done two successful, stress-free transfers!! Hospice gave us the same CNA we started with back in January. Larry likes her. So, I'm going to let them do their thing and I am going to sit out by the pond with my coffee. It's not exactly out of the house, but it should be an uninterrupted hour or so for me. And I'm working on the rest of it. Hopefully, small steps will get us where we need to be without undue stress on Larry. Quote Link to comment Share on other sites More sharing options...
RandyW Posted July 23, 2008 Share Posted July 23, 2008 You have to take small steps before you can run!!! Prayers and Positive thoughts! Quote Link to comment Share on other sites More sharing options...
jaminkw Posted July 23, 2008 Share Posted July 23, 2008 Lynn, You have done a wonderful job starting to take care of yourself in a manner that is kind and caring of Larry. I'm thinking of you as I enjoy my morning coffee each day. Judy on Lake Whipporwill Quote Link to comment Share on other sites More sharing options...
blueeye Posted July 23, 2008 Share Posted July 23, 2008 That's GREAT news Lynn! Enjoy your coffee by the pond. My Mom only went to the back porch, but it was "away" and they both benefited from the time. Quote Link to comment Share on other sites More sharing options...
shellit74 Posted July 23, 2008 Share Posted July 23, 2008 I am glad that you have gotten some help! Dad was only home with hospice for 2wks before he died and we were glad that we had them to come in and help expecially with the bathing and things like that. I hope you get some R & R out by the pond!!! Shelli Quote Link to comment Share on other sites More sharing options...
Muriel Posted July 24, 2008 Share Posted July 24, 2008 I'm really glad you've gotten some help, Lynn. Enjoy your coffee and some peace. Muriel Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted July 26, 2008 Share Posted July 26, 2008 Great start, Lynn. beautifully handled. Carole Quote Link to comment Share on other sites More sharing options...
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