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.
Handbagwarrior; verbal ramblings 
Prayers and hugs, my friend ❤
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Thank you Tru xox
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I don’t understand why they won’t give her morphine or some other pain medicine since she is in palliative care. I thought palliative care was to help a person feel better while they are dying. When my mom was in hospice in palliative care they withheld food and water, but they gave her both pain and anxiety medication. I’d try to fight them on this if possible. They cannot tell if she is in pain by relying on a facial expression, especially when she is barely alive.
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None of us have any idea why they are insisting she is not in any pain and needs no palliative care. Two friends of the family that visit, both carers, are astounded that she should not be given anything. I shall keep trying and change it. (It is now her 10th day and she is still with us)
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The hospice people had a prescription written for mom to have pain meds when she was in her last days and I think it may have helped but other than ragged breathing at times and the occasional moments of her opening her eyes and a light grasping of a held hand…I don’t know! I couldn’t tell and I didn’t ask her if she was. All I did was tell her it was ok to go when she was ready over and over. Our second guessing is only painful to us as we cannot tell but in your mom’s case if she had sores for awhile they were (IMO) derelict in addressing the palliative issue! Hugs and prayers to you.
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Thank you. There is a prescription written out but it appears that it is only the Manager that can make the decision that she can still feel the pain of the open bed pressure sores. It feels more like an issue with her authority being challenged than the care of my Mum.
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I can’t totally recall but I think with Mom it was a standing order of a couple times a day with more as determined by the hospice folks.
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Terrifying and heart breaking. What’s palliative care about if not to ensure a patient is as comfortable and pain free as possible. What the hell is a ‘natural’ death?
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My sentiments exactly Mary. I have no idea what their thoughts of a natural death means. The nurse is Eastern European and maybe it is a culture difference whereby the person would normally be at home in their final days and no palliative care is available and not thought of. I don’t know, I am just trying to understand it.
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This post moved me to tears.
It also made me extremely angry. If the open sores give pain to a person without dementia (and I’m sure they do), your Mother (with dementia) deserves the relief morphine will bring. I can’t believe the nursing home staff are so lacking in compassion.
Every person deserves to die pain-free and with dignity. Every person deserves to die in the way in which they would like .
I would be finding a doctor who will to come and give your Mother what she needs.
Having been a chronic pain sufferer for over 30 years, I can assure you that I may look ‘just fine’ on the outside, but there are many times when I’m in agony and no amount of prescription pain meds helps. Sometimes they barely touch the surface of the pain. Mostly it’s nerve pain. Often it’s that curious and weird throbbing or fiery inflammatory pain of Fibromyalgia. It has no rhyme or reason for its start or finish. But its there. Am I grimacing? No. Every time its gets to the debilitating level where I can’t walk (hip/right ankle), my GP sends me off for an ultrasound. The red fiery areas show up clearly as bursitis, tendonitis and every type of ‘itis’ possible and I am assured my pain is real and needs immediate cortisone injections to reduce it. So many of my tendons are damaged and show the results of chronic inflammation.
If I have a smile on my face, am I pain-free? No. I just have learned to accept the pain and let it in. I practice breathing techniques and meditation. Twice I have passed out and lain unconscious on the floor with pain for several hours. But by the time friends, family (or the old work colleagues) see me, I am conscious with a smile on my face. I used to keep a diary of the many hours I was awake at night in agony. I photocopied it to give to my, then, new doctor, and he finally had some concept of how I lived (at that time). He had an understanding of the times I contemplated suicide (due to the pain).
I am happy in early retirement, but I am not ‘just fine’.
And from what you say, neither is your Mother. She has, what the nurses admit are, painful bed sores, so they alone need pain relief.
I have some wonderful books on compassion and as one doctor writes (as co-author with a Buddhist monk), they are taught about disease, drugs, surgery and a whole lot more.
But medicos aren’t taught about Compassion.
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Oh Vicki, I know how it is with Fibro pain, my own keeps me awake at night, and nobody would know that I am in constant pain, 24 hours a day because I too ‘live’ with it.
They seem very caring at the home but I am truly at a loss as to why they cannot give palliative care, in case she is in pain from these sores.
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I don’t want to sound unfeeling, but I wonder if it could be pain that’s keeping your Mother from passing on to a more peaceful place where pain is non-existent. Just a thought.
I sincerely wish that you find a solution.
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Prayers for you and your mother. Dad had hospice and got pain medication on a schedule and added anxiety medication when he appeared to need it. He couldn’t talk the last week. This doesn’t look right to me. Can you get the doctor to order pain medications regularly instead if as needed? Hopefully by now she will have passed and not need it any more. But if not, I hope you are aboe to resolve this soon!
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Thank you. There is pain relief on the schedule for her, but obviously not warranted given to her. I am at a real loss what to do. But I will try to find out why this is happening.
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You are all in my prayers. I’m so sorry. My dad did not grimace at the end but I knew he was in pain. As being family, you know your loved ones better than a “stranger”. Not everyone can fall under this umbrella of how they show pain. It’s frustrating and I’m so sorry that they will not comfort mum more. I’m with you in spirit my friend!!
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Thank you Mel. She is close to the end now and I wish her peace tonight to end her suffering. I wish my family had always supported me but that was never to be. So trying to hold it together until I can go home. x
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My heart goes out to you. I can’t understand why they are not trying to make her final days as comfortable as possible. You, as her family, know whether or not she is in pain. Stay strong and please take care of yourself as well ..
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Sending you healing hugs…to all of you especially your Mom. ♥ May she be pain-free.
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Gill, the first time I read this, I was so angry about the nurse and the pain meds that I couldn’t even write a response to you. I saw this when my husband was in the hospital last year — fortunately, the pain wasn’t his, but I saw this happen to the man in the bed next to him. It has been so many days since you wrote this — 14, in fact. I feel sure that you have had a lot of sadness in this two weeks. Know that you are on my mind so often. Nancy
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Your thoughts are so welcome Nancy. I do take comfort in knowing I am not alone.
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Gill, my thoughts are with you. My Mum had a fall recently and I’m sure she was in pain although she said she wasn’t. She was “grimacing” and holding her jaw. I don’t think she understands the concept of pain. The fact that care home staff don’t understand the concept of dementia is truly frightening though. Stay strong. Duncan
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Oh Duncan I am sorry to hear this, truly. It is hard when we are still learning how people live with this disease. I think you have said something really important there about your Mum maybe not understanding the concept of pain. My thoughts are with you and your Mum.
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Thanks Gill. Your entry is in this month’s “Perspectives” newsletter https://paper.li/f-1408973778
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Thank you Tru x
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Your mother’s pain should be treated. Assuming she does not feel pain because she does not meet normal criteria is outrageous and ignorant. Her brain function is not normal. Restless legs is horrible. Bed sores are intensely painful. She should get routine pain meds.
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Have a conversation with a trusted caregiver and your own family about your wishes. You may want to assign medical powe of attorney ( different for legal power of attorney) if you have some who you can trust to comply with your wishes.
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Already done. It is a difficult thing, knowing when someone is in pain or not. But I think I am clearer now having had a conversation with a nurse who took the time to sit and talk to me. I am sure now my Mum was not in pain at the end.
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