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Distinguished member
Nov 11, 2003
Hi everyone,
As you all know I was to be Tims caregiver when he decided it was time. It has now been almost a year that I have waited paitently for him to make up his mind. Well after all the waiting my life has now taken a turn and I am working 2 jobs as a personal care giver to people in facilities with no days off and Tim now needs me. About a month ago he told me that another girl who had cancer asked him if he could move in with him and that they could look after each other. I found this too be a bit odd because she had breast cancer and now has secondary cancer ravishing her body and I couldnt see how this would work but I figured if this is what he wanted so be it. I have now recieved a letter from Tim and this girl has decided that she would like him to move in with her and another girl. The problem with this is that he had all these renovations done to his house so it would be suitable for him to live in. Tim has always wanted to stay in his house but now its almost impossible for me to move in because I've taken on these jobs but I'm feeling guilty because I know he does not want to move and I dont know what I should do . I put my life on hold for him but my life had to move on. My husband and I have started a fresh start and if I stay with Tim through the nights I will not see Bob at all because of the hours I am working, which is just going to start problems for us again. What should I do I feel like I'm letting Tim down but How long could I have waited before living myself again. Does anyone have any suggestions? Also some of my shifts will be graveyard which would mean I wouldnt be able to be there all the time anyway. I am also very tired because I have no time for myself so I dont know if I would be much of an asset to him. I cant believe this happening and why did these girls say one thing and now are trying to do something they know Tim will only be depressed by the whole thing. I am going to go see him tomorrow before work but I really dont know what I'm going to say.
ALS About Loving Someone
Hi Kim. It sounds like you are being put in a really difficult situation. Number one is you. Look after yourself first. You won't be any help to Tim or Bob if you get run down and stressed worying about this. Tim obviously has another agenda going for him right now. He has came up with another idea for his care which may or may not work out. Possibly he is looking for a way out so that he doesn't feel that he is imposing on you and Bob. He doesn't want you to be having trouble because of him.
These new options may be an escape route for him. Talk to him and try to get his real feelings on this.
Not wanting to make light of a bad situation but moving in with 2 girls is most mens dream.
Without talking to him I don't know what his thinking is but no doubt you have to talk.
Don't feel guilty if he does what he says is coming.
You have never abandoned him. You can't force yourself on him. Sometimes you have to just let go. It's not easy but sometimes it just has to be done.
Thanks for getting back to me so quickly Al. Somehow I feel like I broke a promise to Tim but he took so long to make up his mind even though he needed someone to be with him a long time ago but he is so stubborn. Being with 2 women would be a mans dream but in ths case his home is his dream and that where he wants to stay and it just seems to be such a waaste after all the removations he had done and the money he spent so he would be comfortable in his suroundings. He did all this because he has no family and he doesnt want to move into a facility and thats why I was supposed to move in, but life does go on and I guess he will have to realize this and hopefully we can work someting out. Thanks again.
ALS About Loving Someone
All you can do is be there for him if he needs you to pick up the pieces. But don't throw away what is good in your life trying to be there for him if that's not what he wants. It'll be hard but you have to look after you. You're the important one here. Remember that.
Hi Kim,

Good to hear from you. I agree with Al. You come first, and so does your family and your relationship with them. You have to take care of yourself and the homefront. After all, they will be there hopefully for a long time, even after Tim is done with his illness. It doesn't sound selfish at all. You waited and waited for him to make a decsion, and your life had to move forward. I am so happy that you are working and doing something that you find fullfilling. You would be an awesome caregiver to anyone with any type of illness. You are full of compassion and love and have a lot to offer to anyone suffering from sickness. I am sure that Tim will find his way. Maybe he will have to move out of his house, if he is not open to having a caregiver come into his house full time to help him out. He might also have to move into a nursing home or continuing care at the hospital. Do NOT feel guilty. You have done the best you can for him, you have been a good friend and a constant source of comfort during his difficult time. I am sure that he would understand your dilema. I know that you had planned to move in with him, however, things change. This course of this als thing is always changing, so he may have to look into new venues and a new type of care for himself. This means that you will have to visit him when you can, and still be a constant in his life. I do not think that he will think that you abandoned him, I hope to think that he will see that the time is just not right for you and your well being right now. Maybe down the road you will be able to do more for him, wherever he ends up going. One thing is for sure, he will not be able to stay by himself for much longer. Giving up your home and your independence will be very hard for him, and maybe he will not have to move at all. Lets hope that the latter will be the outcome. Sounds like you are very busy, and it sounds like you and Bob are trying to work things out. That makes me happy. I know that you two will do okay. Sometimes life just doesn't take us in the direction that we think we should be going. However, some of the detours can be just as rewarding. Continue to stay strong. Still be a continued source of support to Tim anyway that fits into your agenda. I am sure that he will understand. Maybe not, he IS a MAN! What is is status now? How is he doing? Remember to take care of yourself first, because if you do not, you will not be any good to anyone, not even yourself. I hope that this helped you a little bit, I think of you all of the time and wish only lifes best for you. You know that. Your continued battle against ALS is so appreciated to us all. You have taken on a big pill to swallow, but, you have done an outstanding job with Tim. Anyway, have a good night and I will talk to you soon. Take care.

Lots of Love,

When I saw the title of this threat, my first impression, was 'oh my god, what has happened now, is Tim alright'? I emailed to your personal address a couple of times to see how you were, but clearly you are swamped. When I saw that Al had posted next, I knew what he was going to say, probably because he has said it to me time and time again, before I even read it. Now, that's scary! :twisted:I knew he would comment about the two girl living arrangement.... :wink:

In many ways I understand your dilemna, but was happy that you found the power and courage to move on with your life. They say it is all in the timing, I am a firm believer in that. Although we have to propell it in motion, to some degree, and not laze around waiting for someone to do it for us, there often is an unexpected curve when we are not looking.

You took the caregiver courses to help Tim, yet you are now helping others instead. No matter where he goes, your new skills will find a way to help him. You mentioned no days off, that sounds a bit demanding. Perhaps you can work in time off, as I agree with Carol and Al, you need to take care of yourself, or you will be no good to anyone. Perhaps let Tim make the decision how he needs his care, and rather then taking it over and risk your marriage, arrange for his help. Then if you can, back off some of your hours and balance some time with Tim.
You can only do what is humanly possible, and often it is not the quantity of time you spend with him, it is the quality, shown in your words and behaviour.

Good luck, keep us posted.
Thank you to all for your warm and generous replies. I saw Tim today and he is upset because he does not want to move. I guess living with 2 girls would be alright but he doesnt like one of them and to be honest I think she is only there for the free ride. I tried explainig to him why I have to work the hours because then I will get the position I 'm looking for in the end and thats why living with him wouldnt work. He asked me if I could be there half the time and I told him at this time I dont know if I'm coming or going this days and trying to fit him in would burn me right out.

As far as his physical capabilities he really cant do anything for himself anymore. He is still speaking but getting harder and harder to understand, he has no strength left in his legs at all and of course he hasnt been able to use his hands for months now. He has to be fed, bathed and dressed. He is accumulating a lot of phlegm and has a quite a few choking attacks to the point he sometimes turns purple. His weight is stable since the tube has been put in.

He should have had someone living with him a long time ago I cant believe hes still on his own. He told me today that if he is put in a facility that his life will end but hes not ready for that. In other words he needs to stay at home so he can live longer. It was hard to hear this today because I still feel responsible even though I know better but I dont want to see him leave this earth just yet either. I also understand why a man of 40 wouldnt want to go into a facility with residents that are 80+ half of then have a hard time being there.

I know all I can do now is keep in touch and if I can swing it maybe I can do a few shifts if he does find someone else to move in. I guess if my husband doesnt understand this then he doesnt understand me but I'm the one who has to live with myself after Tim is gone.

Thanks again for your input I dont know what I would do if it wasnt for the people on this forum.

ALS About Loving Someone
Theresa I've wanted to write but your right I am swamped thanks for your concern
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