Expert: Michalene Peticca - 9/30/2010

Question
My mother was first diagnosed with Alzheimer's 11 years ago. She had lived with my father up until one year ago. I believe that she was in the early stage 6 of Alzheimer's. She would forget her family member's names. She was still active and walked her dog in her neighborhood everyday by herself without getting lost. But she did become very aggressive towards my father who was her caretaker. She had refused to eat for him and had fallen and broken her shoulder. After a brief stay in the hospital we had her placed in an Alzheimer's unit in a nursing home. She was seen by a geriatric psychiatrist who placed her on trazadone after she had hit another patient. She was doing very well and appeared happy. I could take her out for the day to visit at family gatherings. I would visit her once a week and take her out for lunch and take her to her hair dresser to get her hair done. She couldn't recall names, but she would still talk to me and tell me what she was thinking-she often would tell me about something that happened when she was a child-but she talked like the event just happened.

The reason I'm writing to you is that about a month ago she appeared to be more sedated where she would be sleeping in her bed when I came to visit at 12noon, and wouldn't get up for me. I had spoken to the supervisor and they had her re-evaluated by the psych MD. Over the next few weeks they had taperd her off the trazadone. But now she still is sleeping alot. When I come to visit at 12noon she is still in bed with her pajama's on. She will only get up for me with a lot of effort. She is not even getting up to go to the bathroom. She was never incontinint until this past week. She is eating very little, and refusing to allow the aids to bathe her. I had a family meeting with the supervisor and the social worker regarding her plan of care. I told them that the should be getting my mother out of bed and dressed every day-I can see that she has deteriated a lot just in a few weeks. They said that they think my mother has advanced in her Alzheimer's dementia. They also wanted us to readdress her advance directives- We already have her as a No Code with no CPR No intubation, No artificial nutrition. But we wanted her treated for any acute illness. They felt that we shouldn't be treating her for any acute illnesses. I'm an RN and work full time in a hospital where nursing home patient's have change in mental status due to an infection. They did order some blood work for her and I haven't heard what the results are yet.

Unfortunately I live 65 miles away from the nursing home that she is in, so it is hard for me to go every day and make her get up out of bed-especially since I work 4 evenings a week.

Please let me know what I can do to help my mother from declining more-should I insist that she be sent to the hospital ER for evaluation? Maybe then we could place her in a better facility.  

Answer
Anita,

I am so glad you wrote.  I am very sorry about your mother.  You definitely have a handle on her care and concerns being an RN yourself.  

Although Alzheimer's is a progressive disease, it seems your mother has taken some substantial declines in the last month. I think you are right on target on ordering a CBC for her blood work and also i would recommend a UA CNS  for her urine.  UTI can cause an intense decline, although acute, for an Alzheimer's individual.

AS to her code status...that is what you as a family have to decide.  My experience is that each family has their own rational for making the decisions that they make; whether it be religious, what your mom wanted or what is best for her care.   You do what will give you the least amount of guilt and the best care for your mom....that is all that is asked.

As to the ER visit...well, that is a last resort...i've known families to do that....mainly b/c they are faced w/ situations that the nursing home is unable to deal with.  But again, let us not forget this IS a progressive disease...however, if there is an acute reason for her to be so deteriorated and it can be solved with an antibiotic or with even a blood transfusion (ex. anemia)....would you want her to have that?  If you could "solve" that...would it add to her quality of life?   If it is "permanent" changes (ie, CVA brought on due to the Alzheimer's) how far will you go?

I think knowing the CBC and UA CNS reports are vital to your decision.

Hope this helps.
Write me with the results and i'll see if i can help you further!

Best Regards,

Michalene Peticca, MA