As you know I have Alzheimer’s, I have dementia even if it in the early stages I still have it. I want to be pro-active in the education of what it is really like to live with dementia in the hope that it helps in understanding how things can be made better for us.
What I am going to write about is my opinion only as someone living with dementia, I am not a professional.
My mother is now in her 9th day without any fluids at all (2 weeks without food). She is unable to take fluids because her swallowing reflex no longer works. She has been lying in bed for over a year now in the nursing home with vascular dementia. She has been compliant, polite and thanks the carers and nurses for all they do for her and they all love her.
A few days ago I was concerned my mother was in pain, she was kicking with her legs. “She has restless legs” my sister comments, “it’s natural that she is moving them constantly. ” I am not convinced. I try to ask her if she is in pain, but she cannot speak other than make a nonsensical sound. Does that mean yes, or no? My Dad, sister, brother and sister-in-law are there with me. They have sat with her far longer than I have and know that she has always moved her legs even though she does not appear to be able to move anything else now. Still, she looks to me like she is trying to knee my Dad’s arm which is over the bed holding her hand.
The carers have turned her and she is now facing away from me, but she is trying to turn her head to see me. “Are you in pain Mum” I ask, she makes a noise and I am now convinced that she is. I go and get the nurse, and she tells us that she has open bleeding pressure sores on her back (her dressing had come off), which is understandable after such a long time in bed. I am concerned when the nurse tells me that they give no pain relief for sores other than turning her. They will turn her every two hours instead of four now. I don’t understand this at all, later another nurse agrees that she may have a small dose of morphine which will take the edge of the pain of her sores. The next day the original nurse is on duty and says she does not feel she is in pain because she is not ‘grimacing’ which is how they tell, so she will no longer have any pain relief.
On day 8 and she is non responsive, no movement at all. She is simply breathing. My Dad speaks to the Dr who is visiting, and he agrees to speak to the Manager of the nursing home. Later the Manager comes upstairs to the room and indignantly tells my Dad that my Mum is always given pain relief if she needs it. My Dad asks how they will know she is in pain, “I am a nurse she says, I can tell because they grimace” – She is leaning forward pointing to herself, her voice very defensive. My Dad does not have time to reply as she has walked away. He is so stressed and upset that it is not appropriate to challenge her behaviour in front of him.
My Mother is very very weak and not speaking, or moving, and my Brother who is visiting later is concerned she is in distress and asks for them to give her some pain relief. They do, but still her face is not ‘grimacing’. Whilst he was there a nurse did a test to check her responses = yes she responds to pain.
I am incensed. Why is it such a big deal to give my Mum some palliative pain relief when the nurse tells me that her sores will be painful to her? The nurse mentioned she will not have a ‘natural’ death if she has full doses of morphine. I have told my daughter, I do not want a natural death, I do not want to be in any pain.
After 9 days it is inhumane to guess whether my Mother is in pain or not. The small dose of morphine will not hasten her death but WILL take the edge off any pain from these open sores.
I have tried now several time to talk to them, my Dad has; my sister is the only person who does not think she is in pain and doesn’t need any relief. My sister is the only one in the family who has long conversations with all of the staff including the manager about how the rest of the family are against her! My sister’s behaviour is tearing the family apart and making my Dad ill with stress.
My thoughts are this: At the end of life is it possible for a dementia patient not to ‘grimace’ when in pain? I know that the ability to communicate when you are in pain is lost. I myself often never think to say when I am in pain with my arthritis/fibromyalgia when I see the doctor, I simply forget even if it is what I go for. I even forget/not think to take pain relief to ease it sometimes. The Alzheimer’s Org site talks about the family also having some input about discomfort of a person, so how come it appears that a nursing home Manager has the authority to decide whether she is ‘grimacing’.
Remember, this is simply my account and opinion only.
(Afternoon) My daughter and I have returned from seeing her in the nursing home. My sister has said she stopped breathing briefly and then started again. She has taken my Dad to have his hair cut “You can either go up to see Mum or have your hair cut but we need to hurry because the appointment is in 5 minutes, its up to you”, my Dad desperately needs a haircut so he goes to have it cut.
My Mum’s breathing is erratic, but she is aware that we are with her. I reminisce with her and stroke her hair. I talked about her favourite hymn that her mother used to sing to her when she was little and we played it on my daughter’s iPhone to her. As my Mum is lying still, her breathing ragged and not moving a tears leak from her eye, she is understanding everything she is hearing. I wish she is out her torment soon.