Dementia: The question of showing pain

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.

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(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.

Dementia: – Warning; an honest reflection of my thoughts about end of life

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I am sharing my thoughts about being with my mother who has had Vascular Dementia for a while and is in the final stages of life, but at the end of her 80’s she has had a reasonably long life.  Some of what I am writing may upset some people, just saying so that you can choose not to read on if you wish.

Yesterday, the family sat around my mother’s bedside in the nursing home.  Each day we are waking up to wait for the phone call to say she may have peacefully passed away but she is defying everyone by staying with us.   This is the third day without any food or drink, however she is not in any pain and looks so peaceful.   Yesterday morning she opened her eyes and looked at my Dad.

“Hello my lovely”, he said.  “What have you got to say to me today?  He is stroking her head and face.  “Is there anything you want to tell me today?” he asks?  “I expect you want to tell me you love me.  I know you can’t talk so just blink if you want to say you love me”  he says gently.  My mother blinks, he tells her he loves her.  I quietly cry to see such a touching scene between them.

After a while, my Dad falls asleep in the chair next to her, at 93 he finds it hard to stay awake for long periods without ‘naps’.   My sister reads her book and I start to read mine, music is playing low in the background; Doris Day, Harry Secombe, Vera Lynn.  It seems like the first time we have just sat there in silence with her.  My brother and sister-in-law will join us in a while.

I watch my mother breathing shallowly, the pulse on the side of her neck beating steadily.  I think about my awful childhood and she was so nice to outsiders but so abusive to myself.  It seems a million years ago and in a very distant part of my life now thankfully.  I made my peace with my Mum when I was able to visit her alone a few weeks together which was needed for both of us I think.

I look at her now and know that at some point my dementia will mean that I shall no longer be able to communicate, or understand what is happening around me.  It makes me feel sad when I am sitting with my family and having these thoughts alone, but then it is not appropriate at all for me to talk to them about how I am feeling.   When I hear the carers and nurses talking about ‘how it is for people with dementia’ I want to tell them not to talk like that.  I want to say, people with dementia are not THEY, they are me, maybe you at some point.  Of course these feelings are ridiculous because nobody can identify with the person lying in the bed at the end of their life with dementia, can they?

My Dad is reluctant to let my Mum go at the same time as dreading it.  We are sitting around her bed and I know that we are willing her to pass peacefully away with us there, and not torment us in the waiting to start grieving.  Does that sound terrible?  A fierce woman, a strong woman, a woman with a will of iron, never afraid to say what she thought.  Never wanted to be overlooked.

The home she is in, is full of lovely caring nurses and carers, most of whom are Eastern European.  They treat my Mum with such love not just kindness.  They tell her they love her, and she has recognised and appreciated that.   My daughter will be the person who will be making sure that I am cared for the same, and I hope that she is diligent in her monitoring of how I am.  Not that I don’t think she will be, but I hope she isn’t too busy to do so.

I have been functioning fine, I have been cleaning, cooking, washing, ironing and taking care of my Dad, but when it comes to organising and making decisions I struggle and leave that to my brother.   I am no longer able to cope with the stress of family difficulties between each other like I used to.  My sister treats me if my dementia is worse, my brother treats me as if I am fine (which is better I guess), and my Dad is probably the only one who understands how I am now and does not expect too much from me.  My daughter thankfully, continues to check on me daily to make sure I am fine as she understands how it all affects me.  But all this is not about me, this time is for family and my Mother.  I just happening to be having my own difficult time of it with a broken marriage, moving to a new area, and coming to terms with my Mother dying.

Thank you my friends for listening to me.

Dementia and learning to live alone

I have not posted recently because I am not quite sure how I feel.  There has been a lot going on for me which has seemed to put my life on hold.  My Mum who has had vascular dementia for a while is in her final stages of life.  She has been in a wonderful nursing home having not left her bed for a year.  Each time we get a call from the Doctor to say “please come it is only a matter of days”, she rallies round and surprises everyone by recovering!  She has a will of iron and it seems that she wants to hang on to pass away with my Dad.  She doesn’t want to ‘go without him!!  At 93 he is not quite ready to go so it seems she will fight to stay longer.   My Dad visits her every single day for a couple of hours at least and sits with her talking to her and strokes her face and hair.  She hates it when he leaves and when she was still able to talk she would say to him “I could be dead by the morning” to try and keep him there!   My Mum has a great sense of humour and it is still there.  Still it is hard sometimes looking at her and knowing it will possibly be me in time to come.

Interestingly and remarkably her dementia seems to have improved the more her body has degenerated.  She is so aware, and sharp with a memory that amazes everybody.   I got to have a private conversation with her a few weeks ago and made my peace with her, I felt I could understand lots of things she was trying to say, and later she would look at me and ask me to tell my Dad what she meant when she was speaking.  Such is the benefit of me having Alzheimer’s that I felt I could know what she was feeling and trying to say.  Of course none of this would have been possible had it not been for the fact her mental cognition has improved.  Is this a common thing I wonder?  Perhaps you can tell me if you have experienced something similar with your loved ones in their final stages of life.

So, I have been travelling to stay with my Dad when I am called.  Sadly, like a lot of families these days there is little harmony in our family because of my sister who resents any input from myself and my brother, and I find it so stressful being amongst it.  Because I sound so normal, they do not realise that I find it hard to cope with it all.  I simply just want to stay, do cleaning, washing, cook his dinners, help him do things he wants to, visit my Mum, and stay calm.

What of me?

I have been learning to live alone again.  Not hard, but I seem to spend more time faffing about.stop-faffing-and-hurry-up  I now have a bus pass enabling me to catch the short bus ride into the town and do a little bit of exploring.  On good days I will walk along the river, and on days when I am in too much pain, I sit and read and, dare I say it, enjoy my own company.  At some point I will organise my paperwork so that I know where everything is, because I do what most people do and that is – I tidy up!  Meaning to return to the pile of papers and letters that I should be dealing with, I find I have not actually put everything in one place.  Oh yes, you all know the scenario of putting something away for the moment, then not remembering where, well I manage to have several places that it seems are beyond any sense or reason.   It takes time to develop those squirrelly places doesn’t it?

The people in the other flats are very nice….but seem so old!   Okay, the housing is for people over 55 years of age but why do I feel like I am the youngest there!   The elderly gentlemen meet in the mornings in the communal room and joke about being the League of Gentlemen, and I joke back that I thought they were the Hell Fire Club.  I have been invited to join them all for Bingo on Tuesday nights, games Wednesdays, and a quiz on Thursdays.  Is it ungrateful of me to wince inside whilst I am explaining it is not really my kind of interest.   It is strange living alone in a town where you do not know anyone, it feels kind of living in a silent world.

I also have not been well with a stomach complaint – whatever next!  Why can’t my bile duct behave itself, especially ten years after my gall bladder was removed.  It is simply not cricket!!

I still worry about my future.  I hope that the care home I will end up in will be so lovely as the one my Mum is in.  I see my Daughter not being able to cope with the stress of it all, but hopefully by then she will be more robust.

For the moment I am just trying to get by day by day.

Thank you all for your continuous kind words of support I really appreciate it. 🙂

to faff