Expert: Cindy Keith, RN, BS, Certified Dementia Practitioner - 1/14/2012

Question
Dear Cindy,

Thanks in advance for your help.
My mother(age 70) was diagnosed with AD four years ago. She stopped talking a year ago and has not said a word... the sound she makes is when she coughs or sneezes. In the last week she has stopped walking as well-though we continue to try and make a walk a few steps a day atleast. I live in India and there is no system of hospice here.. My only concern is that she should be comfortable..and that's difficult because she doesn't talk. I'm concerned about a couple of things. her neck is always drooping, her spine is bent double and we have a big problem trying to prop her up, even when two of us are holding her.. she sleeps a lot during the day.. and her elbows and fingers and wrists have all become rigid and i notice some small tremors. She eats well though she has trouble swallowing thin liquid..but we manage to keep her hydrated. She has continous constipation for which we give her medication. I'm also afraid that we might bruise her skin  when we prop her up or try to lift her because she's very weak and her skin is fragile.. i'm also scared that she might fracture or dislocate a bone when we lift her out of bed... do let me know if there is a correct way to do all this.. Thanks in advance and god bless. nimi

Answer
Hello Nimi:  I'm sorry to hear about your dear mother's decline.  I wish you had access to hospice, but since you don't you will need to be extra vigilant with her non-verbal cues.  I have several comments about this situation:  
I'm guessing you are using a thickening agent so she doesn't choke on the thin liquids? If you have access to a speech/language pathologist who could evaluate her swallowing ability and recommend the best way to get food and fluids into her, that would be great.  
I believe she would moan or cry out if she were in pain when you move her, so if she's not doing that, she is probably not having much pain.  Facial grimacing or a "worried" look on her face could also indicate pain, as would her drawing up into a fetal position.  Does she have a medication for pain?  If not, talk with her doctor to see what could be given if you suspect pain.  If you know she has pain when you get her up, then maybe you could give her the medication prior to that.  
What about having her receive regular massages for her neck, spine, arms and hands?  Slow, gentle stretching would help keep her from getting painful contractures.  
Her skin and bones will be fragile and there is not much you can do about that since you must move her frequently.  Keeping her well padded when she's sitting or lying down will help her comfort, but you need to learn to not be pulling on her joints.  For example, placing a wide gait belt around her waist and lifting her to a standing position with that instead of tugging on her arms.  I'm not sure what the tremors are all about, but there is a possibility it could indicate pain unless she has them continuously.  Think about how a baby acts when it's upset and crying hard--you see their hands and arms and feet tremoring then.  If it's not pain, it could be a neurological issue that doesn't mean much. You could have a physical therapist come in to evaluate her for finding the best way to prop her up, or for preventing those contractures.   
Continue to speak to her, touch her gently, play her favorite music and expose her to things you know she likes.  Sometimes when an elder with dementia can no longer speak, they can still sing a favorite song.
I wish you luck Nimi as you continue to care for your mother in this later stage of her dementia.  She is lucky to have a thoughtful and caring daughter such as you.  Cindy