New Caregiver, advice would be appriciated.

[alexesmom]

My father has ALS. He has been diagnosed for only about 6 months but we have known for about 3 years that something was very wrong with him. In the last year his decline has been very severe. My stepmother walked out aprox 2 weeks ago because she does not want to take care of him anymore. (I promise this is the only bitter statement I will make about her, I hope) She was a single mom of 2 toddlers and saw a paycheck and a much easier life with an older man I am 37 and she will be 39 in May and she bailed when the going got tough. Gold digging bleep! She's not cute enough to have gotten a rich sugar daddy just one with a good job. I am a true daddys girl and live only 5 houses away from him since last January because he was so ill. I stepped in to take care of him and have taken a leave of absence from work in order to do so and am working on trying to get some assistance from friends and family so I do not have to leave my job. My dad only wants me to take care of him. He is in very advanced stages and was approved for Hospice yesterday. He only has the use of his hands and really only the right one. He is on oxygen and they are talking about a trach but he is resistant to that. He is completely dependent on me. I am so lost. We got the health and financial power of attorney switched to me. He has not accepted the hospice yet because it stops all aggressive treatment but would give me some help with caring for him which once again he says he doesn't want anyone but me to care for him. I want to care for him but I also have a 3 yr old and an 11 yr old who need some of my attention and in these tough economic times I really can't lose my job. He will take care of all of our expenses now but when he is gone then I cannot just hope for the best when I have a very good job (that I hate) that I cannot garantee will still be mine when this is all said and done. I am trying to think about the important things in life and I do not want to give up this time with him I will hate myself later if I do. I am so scared and I know he is too. Please give opinions or advice.

 

[caldona]

ALS patients should be on bipap not oxygen some doctors does not know this but als doctors does. ALS association here will reimburse you so much a month for home care

 

[Barbie]

Thank you for caring for your dad when his wife walked out on him. it is a huge job and very hard so good for you.

you might have to insist that he allow others especially hospice to help care for him. That is a common problem that pals don't want others to "wipe their butt" and you can't blame them. but hospice and other home health care workers are PROFESSIONALS and the have seen and done it all. Hospice is very much about the patient's dignity. maybe you could ask him to just give it a try for a month, for you, and I bet if he does he will realize it is a good thing for everyone.

 

[Sara Lee]

I know this sounds cruel, but do not allow your dad to be totally dependent on you. In the long run everybody will suffer, you, your children and your dad. Trust me on this, been there, done that. With the best of intentions it is just not feasible to kill ourselves to make everyone happy. I know it's very very hard but others will have to take care of him at least for part of the time or else you will sooner or later fall apart. If you have options please take advantage and use them.