Expert: Paula Damgaard - 8/18/2008

Question
QUESTION: I have asked questions in the past. The last one was about my mother who I have been caring for in Madrid, Spain since 2004. She is now 71 years old and I have come to the conclusions that she is in the late 6- going towards 7 Stage she has been eating very little lately to almost nothing. She is in a daycenter and I am trying to get her into a Residence because, I also have a 4 year old and am working full time with my spouse so, I am limited as to the care now that I see she needs. I feel that 24 care is going to keep her peaceful and not so displaced. She talks and talks non sense , but has not stopped talking she walks very little now she shuffles her feet and bends down going into the fetal position. They bring her home in a wheelchair and I take her from there. They have recommended ENSURE today that is the only thing she ate. They used a syringe to feed her. I also see that she is not going to the bathroom as often and she should. She is constipated and I also am giving her medicine for that. Her sleep patterns are better but, I think it is because she is just much weaker than before. I see her decline on a weekly basis. Tomorrow I will be visiting a Residence that has been referred. I am at my wits end. Please all of your advise is very appreciated.

ANSWER: Hi Liz, i know that you are at your wits end.  Please do not hesitate to place her.  you are being a better caregiver by placing her where she needs to be.  Having cared for Alzheimer's patients for over 25 years, I really believe that Alzheimer's patients know when they have had enough and when they do they stop eating and just basically give up.  Quite frankly, I can't blame them!  This is a awful disease and if I had it I can't say that I would not do the same.  

My mother was only 69 years old when she died.  We made the decision when she was placed in a home that we would stop all medicines except she could have Tylenol for headaches and if she got diarrheawe would stop that, but if she got an infection we would not treat it.  She lived in the home for eight months and she got pneumonia and died peacefully.

Good luck with placing her, I know it is extremely hard to do, I was in your shoes, but I would do it again in a heartbeat.  I will be thinking of you. Paula

---------- FOLLOW-UP ----------

QUESTION: Paula I do not have a follow up question today. I wanted to let you know that my mother died August 7th 2008 at the Residence that I had chosen for her. She was placed there on the 1st of August and still not eating unless forced. She died 7 days later. I was very sadden but also relieved that she was no longer suffering. She had allot of blood come out from the stool and was gasping for air, they gave her oxygen laid her down on the bed and she passed peacefully too. I wanted to share that I did donate her brain to study this horrible disease. I know how hard it is to make decisions especially when being a caregiver, wife, and mom. I was thankful that I could care for her as long as I physically could, it was too hard when she had to be fed and my patience really ran out. I wanted to thank all of your experts for answering many questions that I had during this time and will always be thankful that I had some where to go for help. We all have to play a part in trying to help come up with a cure for AD and I just hope that what I did will help the lives of others. I am always reading about the new drugs that are being tested and will continue to be a supporter to all that need anything from me or my family. Her donation was made here in Madrid, Spain. She will be laid to rest in the USA next to my father that has been waiting for her. She was my best friend and I will miss her so much. She never once admitted to having an illness she was diagnosed in 2000. She battled it with a great smile and a wonderful since of humor. She was very loved and her name was Victoria (Victory) She fought it as long as she could but in the end it got the best of her. She was a very beautiful, kind and generous women and now she is finally resting in Peace. Thanks again!

Answer
Hi Liz, first I am sorry for your loss, tho grateful for your mom that the struggle is over for her.  

I know how hard this is.  I miss my mom greatly, somedays worse than others and she died in 2000.  But the happy times are there too and she has given me many examples to use when I am counseling someone or teaching a class, so for that I am grateful she had the disease.  I often tell people that I thought I knew everything I needed to know about AD until 1996 when she got diagnosed then I found out I had a LOT to learn!  And my mom gave me that.  

I hope you can find peace in knowing that she is at peace now.  You would not have wanted her to live anylonger and to have gotten worse.  This is an awful disease and I truly believe the early someone who is diagnosed can die the better for them!  At least until there is a cure!!  

Take care of yourself and give yourself a hug from me.  My thoughts are with you.  Peace Paula