Partners even more likely than survivors to experience fear and worry over long term, study finds
by whonew on Mon Feb 27, 2012 12:11 PM
I am going to ask a dumb question but I am in a panic. MY sister is failing fast from doing everything a week ago to no longer being able to stand without us picking her up. This has caused my back to go out (I can barely move, severe pain but I don't want her to know) and I cannot do it anymore or I will be bedridden. I need to help her and can't be in the bed! I know some of you are older women caring for husbands and must have found a way to deal with this issue. Getting her to the bathroom, etc. A catheter? Any suggestionsd are welcome. My husband and sons can help when they are here but how to handle this in betweeen times? I do not want to put her in a home, above everything I want her here with me. I promised to keep her here and she is afraid to be without me for a minute. We do have Hospice and they are looking in a home aide but they can only come a few days a week at best
by distancerunner on Mon Feb 27, 2012 03:15 PM
I can't emphasize enough finding time to excersize yourself...My wife has been TOTALLY dependent upon me for the last 13 months of a 2.5 year GBM ordeal.
The only thing that gets me through is to excersize for one hour a day..to work the back and the muscles that help in lifting my wife....and most of all to get back at least one hour per day at doing something that I used to do before all this mess began.
I look for a relative (or if necessary 20 dollar an hour aregiver) to look after my wife maybe one or two hours per week and i go run a race or do something which helps my morale and helps me go another day with a 52 year old wife who has the intellect of a 3 year old and is just not a wife anymore.
My wifes decline was overnight as well and it never came back despite very aggressive therapy....
this kind of ties into the "when do you give up"? thread, you really never do despite the hope that the decline will eventually lead to an "end"..If it dosen't "end" all you can do is to keep doing your best for your loved one despite the knowledge you have that it does absolutely no good.
In the meantime, prepare yourself through excersizing (at whatever effort you can muster) tobe able to lift your loved one, dress your loved one and clean them up....
IT'S A LONG ROAD, but as bad as this sounds your wait may not be long, I hope the same for me, with my oved one, because it is truelly exhausting, demoralizing and incredibly expensive.
by siblingof on Mon Feb 27, 2012 05:57 PM
by siblingof on Mon Feb 27, 2012 06:05 PM
by brendaintexas on Mon Feb 27, 2012 06:17 PM
Been there with my mom. So difficult mentally and physcially. Not sure if you have the dme equipment. A hospital bed and bedside commode is big help. a catheter is helpful also. keeping them dry and their skin from tearing becomes a real issue. When my mom became completely immobile i could not move her on my own. my sister would have to help me on her way to work in the morning and then my aunt and uncle would have to stop by later to help. If you do this on your own both of you could become very injured. please be careful. you will get through this. we are thrown into the caregiver rule and just have to do the best we can. God bless you!
by heart_and_soul on Tue Feb 28, 2012 04:52 AM
I hurt my back trying to hold up Andy too, and it's two years ago this May that he died, and I still hurt. Of course I would have done anything anything ANYTHING for him but when his legs gave out I couldn't hold him up and tore my S-I joint.
No way around it: you need more help. Yes, a catheter, a hoyer lift, bedpans, plastic sheets, more in-home help. Or as someone said, a hospice home. The one near us turned out to be wonderful. We had a huge room, others could stay overnight with Andy, we had a little kitchen, a nice view of the woods, they allowed puppies to visit, and even wheeled his whole bed out under the stars where he could have an illicit smoke. Those people were great. It freed us to be 'just family' so we didn't have to be the doctors and nurses. So it might be an option to consider.
Wishing you peace and some meaningful loving times together.
by passionfish on Tue Feb 28, 2012 08:19 PM
Not a dumb question at all! When I found myself unable to hold my sister up while trying to get the wet underwear off at the same time..PANIC!!..I was fortunate that family was available....all of the troops were called in..The situation would have been impossible without them and what a blessing having her at home until she passed.
Looks like folks have offered wonderful advice..Good luck to you :-)
by jAAvs on Tue Feb 28, 2012 09:13 PM
I am sorry to say, but I think you should take your sister to a rehabilitation hospital. I did that when my wife could no longer care for me. The nurses would lift me back and forth to the bathroom. They also put me through rehabilitation to get my strength back. The whole process took 5 After the process, I was able to get back up on my feet, walk up stairs, and complete my normal activities. I was able to go back tto work about a weeek after rehab. Best wishes, Jason
by crayfish on Tue Feb 28, 2012 10:53 PM
I'm with Jason on this. My hubby was in hospital rehab too - for three weeks. Of course, we wanted him home but there's no way I could have cared for him (and I was scared of doing something wrong ) and he didn't want me going through that either (he was scared of me doing something wrong too LOL) . He had a nice room and I spent the afternoons and evenings with him there. Brought him dinner. He had a lot more visitors. Whenever, whatever - a nurse would come in and take care of it. I'd help where I could. Physical therapists got him up and about. The pressure was off me and it sounds funny but it meant more quality time with him - even though he wasn't home. Now I was lucky though - the hospital was only 10 minutes away. Something to think about.
by distancerunner on Wed Feb 29, 2012 12:21 AM
They are considering putting my wife in a 2 week therapy in-patient clinic..
I was told however by someone that you had to come from in patient hospital to get into in-patient therapy..
hopefully, that is not true and I am not sure if there are any medicare considerations to this...
I am looking forward to it more for the break it will give me than anything else...and they want to do it in a 2 week period in between 3 week infusions of avastin and a chemo drug called CCNU...I've been a caregiver for 2.5 years and had never heard of that chemo drug..but the idea that you could attend an in patient program while on treatment is something I gotta think hard about..whether she can take it or not...
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