Expert: Paula Damgaard - 9/26/2007

Question
My mom, 66 years of age (frightening really), is in end stage MID, Multi-Infarct Dementia, she hasn't been able to perform any tasks of daily living for several years, in a nursing home for the last 1.5 and now the Dr. has called a meeting with my father because she is at the point of hospice care. She is in a wheel chair, if not in bed, and can't keep her head up, doesn't speak, has to be fed through a straw, etc... They will be replacing her nursing home bed with a hospital bed and a nurse will be assigned to her care in addition to the nursing home staff. Her ankles are swollen, she recently had pneumonia but got through it and then a few days ago, got a 24 hour stomach flu going around the home (staff too) but her O2 is 86%. I've been dealing with this since she was 59, YES 59, and I know from experience that people with ALD can last and last (grandmother diagnosed mid-stage in 1980's and lived for 12 years) but my mom's condition I know is different with the MID and her present state. So... in your experience, how much longer does she potentially have? I live 2500 miles away and feel compelled to race to her side, although I was there 1 month ago and she recognized me, I could see it in her eyes and my dad agreed, she didn't speak, but she knew it was me. I have a family of my own and feel lost, do I race to her side? Is the end near and I'd be best to prepare myself mentally more so than flying there to see her in her present state? Any guidance you can offer I greatly appreciate and I will add, I knew this day would come and my mom would NEVER want to live they way she currently is so I've been preparing for this, just need some direction here at the end, not fragile, just a little lost. Thanks again.

Answer
Dear Kristen, If only I had a crystal ball so that I could tell you the answer to your question.  This is a terrible time for your whole family.  Having been in your shoes, my mom died with AD at 69 so I feel your pain.  Luckily for me I was here with her so never had to make this decision. Being so far away is very hard.  If you are having strong thoughts that you need to be there then I say go.  Your family will survive, and later in life your children will appreciate what you went through and better understand it.  Hospice is a great thing for your family and I am glad that they are involved.  They can also help you decide if you should come right away.  However, at this point I think your being there is as much for your dad as it is for your mom.  He needs support as well.  

Going will relieve you of the guilt you will most surely feel if you don't go, but then the question arises as to how long can you stay?  Is it realistic to think that you could stay weeks?  She could last that long, or not.  

I know I am not helping much.  I wish I could tell you she only has _____ time left.  But I can't.  I am sorry.  Again, Hospice may be able to give you a better answer, they are usually pretty accurate when it comes to knowing how long someone has to live.  

Please know that I am with you in this even if only through this space.  I wish I could hug you and make this easier.  Please let me know how it goes.  Again I wish I could do more for you.  Paula