Expert: Paula Damgaard - 11/29/2009

Question
My father is 81 years old and recently had a feeding tube put in because of his inability to swallow. He is aspirating and food particles are going into his lungs, which I know can cause pneumonia. I am sure he has Alzheimer's disease, or a dementia of some kind, although his refusal to see a doctor about this has led him to have never been officially diagnosed. It seems like overnight he went from confusion about the time of day or day of the month to incontinence and not being able to swallow. He knows who I am, however there are times when he doesn't know what I am asking him. He gets a lot worse at night. I am caring for him at home. He is no longer able to walk. He can maybe take a few steps with the support of myself and his walker. He is mostly bed-ridden and dependent on me for everything. I am feeling guilty because I have been having thoughts of putting him in a nursing home. I always promised him I would never do that. But I am going to college and have a 7 month old daughter. I am just feeling overwhelmed. I don't know how I am going to put him in a nursing home and just walk away from him. Especially if it is at a time when he is aware of what is going on. I just don't know what to do. What are your feelings about the feeding tube? Is it doing more harm to him than good? I know he is miserable, but I fear that putting him in a home will just cause him to become even more depressed. Do you know why he went downhill so fast? Any advice you can give me would be very appreciated. God bless you for having this site. I didn't realize how tough being a caregiver for someone with Alzheimer's would be. You are doing a wonderful thing for us.

Answer
Hi Heather, My first thoughts about your note when I saw the subject - Feeding tube- was OH NO!  I am not a fan of feeding tubes.  I strongly discourage people from using them.  I believe that somewhere in the fog they actually know when they have had enough! so they stop eating.  It is not a difficult way to die.  Having pneumonia is also not a bad way to go.  Pneumonia used to be the old people's friend, they would get it and die peacefully in a few days.  Now that we have all these high powered antibiotics we are keeping people alive longer, and I ask for What??  Are we giving them quality of life?  Can you honestly look at your dad and think that this is how he would want to be living?  

I think putting him in a nursing home is a totally appropriate thing to do.  You have done above and beyond the call of duty.  When you made the promise of never putting him into a home, you had no idea what you were promising.  You owe it to your self and your daughter.  She deserves your attention.  And you are not walking away from him!  Think of it this way: if your dad broke his arm you wouldn't hesitate to put a cast on him, nursing homes are the "casts" for dementia patients.  He needs one now.  

While he may know you sometimes, he will get used to the idea of being in a home, and if he doesn't and he dies, that isn't such a bad thing either. Remember your job is to give him quality of life not quantity.  

As for his going down hill so rapidly, one suggestion I have is have you checked his urine?  Many times demented patients go down hill rapidly because they have a urinary tract infection.  Take a urine sample to his doctor and have him check it.

Don't be so hard on yourself.  This is an awful disease and being a caregiver is more than a 24 hour job.  Sounds like you have been doing a good one, but we all need help.  So use what is available!!  Take care and let me know how you make out. Paula