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Discussion in 'I care for a person with dementia' started by Marcelle123, Dec 2, 2017.
Thinking of you Marcelle. I hope your mum is calm and comfortable.
Thinking of you Marcelle it’s such a difficult time glad your mum is back in her care home. X
My thoughts are with you Marcelle. So pleased mum is back in her care home where she can get the compassion and care needed at this difficult time.
Like the others on here, I am thinking about your Mum and hope she is calm and peaceful.
Thank you, Bunpoots, nannylondon, Scouts girl and nita.
I just popped in for an hour this afternoon. The carers told me that Mum had eaten porridge, soup and yogurt today in smallish quantities, and was talking to them, but sometimes shouting out, which they said they could deal with; also, she kept taking her nightie off, maybe because she feels hot.
Mum made a big thing of telling me that she didn't know anything or where she was when I first went in. I sewed a name tape on the neck-ribbon of the lovely teddy bear my brother gave her, and sang some songs that she might know while I did it. Then I read her some poems and she paid attention and appreciated some of them - also I read that childhood Ladybird classic, Ginger's Adventures. She loves it & is always interested, but I tell her we're reading it because I loved it so much when I was a child.
We also looked at some photos and she did have a few memories on some of them. Then I tried to read while she rested, but she kept opening her eyes so in the end I went home & will come back again this evening.
One thing that bothered me is that she seemed to alternate between breathing loudly/over-breathing and not breathing at all - I felt obliged to take her hand and rouse her, as it was a little scary. When I managed to steel myself not to intervene, she did start breathing again, but very quietly. They have the movement-sensor alarm on when visitors aren't with her, and the door open too, but I am wondering whether she might just slip away some time.
It's in God's hands.
Marcelle, good to see your update. I'm sorry your mum is disoriented and restless. It sounds as though you managed some quality time, though.
I want to say I'm grateful for you mentioning that when you read to your mum, you tell her you have chosen a children's book because it was YOUR favourite. I've been wondering how to get my mother to allow me to do this and your comment has likely given me the strategy I need, so thank you so much for that. It's truly helpful.
Thinking of you and your mum.
Your Mum sounds content Marcelle and I suppose there's not much you can do if she chooses to slip away while you're not there.
You are still doing your very best for her and have nothing to reproach yourself for if she does, although I do completely understand that you would want to be with her.
Sending love and strength to you and peace whichever way things go, to your Mum.
Big hug xxx
Thank you, Amy and Prudence.
I went in tonight but only stayed 15 minutes as Mum was sleeping, rather uneasily, her breathing laboured, and occasionally restless as if she sensed my presence. However, she did open her eyes and smile at me at one point, and waved when I kissed her goodbye. I felt rather helpless but tried talking softly to her and held her hand. The carers told me I can ring up at any time if I want news, and promised to ring me if Mum deteriorates suddenly.
My sister from Yorkshire is hoping to come down for Wednesday, though the weather may not permit. Hoping Mum is at least no worse when my sister gets there.
I just spent an hour with Mum, who was awake - according to carers, 'much the same', tired, breathing occasionally laboured, but worse (in my view) in that her speech is very incoherent now & she can't formulate her words.
However, she responded to the poems I read her from the famous (in our family) old grey 'children's treasury of verses' (Mr Nobody, Little Prince Tatters, Jack Frost et al) and also when I sang hymns or songs she knew.
I went through her children by name several times and said they sent their love. She is calm and not in pain, though the mornings are always her best time. My sister has decided to come straight down from Yorkshire so should be here tonight, hoping that the roads are okay for her.
I feel very sad sitting by Mum's bedside, but they are precious moments too.
I hope your sister has a safe journey, it will do you good to have her with you.
Marcelle what you are doing now with your Mum I'm sure will be soothing her, and giving you such precious memories that will always be with you.
Lots of love to you xxx
Yes they definitely are precious moments Marcelle and ones that cannot be repeated when the inevitable happens. I spent as much time with my mum as I possibly could when she moved into care at the end of last year but I just regret so much that I was not with her when she passed away 2 weeks ago. I told her repeatedly when I was with her how much we loved her and that she was in care as I could no longer look after her any more. She was never able to accept this, and I feel so guilty that I could not have done more for her. I hope in some way she did understand this and that nobody was to blame for this terrible illness.
Hope your sister has a safe and uneventful journey.
I was given some advice for this situation: tell the person you love them, you are sorry, that you forgive them, and please to forgive you.
The songs and poems and old familiar stories are such a good idea.
Wishing you strength and peace at this difficult time.
I'm glad your mother seems calm and settled and that you are enjoying the special moments you are having together. It will be good for you to have your sister there to support you. You are being very brave and dealing with everything as well as you possibly could, but very sad times for you.
Prudence, Scouts girl, Amy and Nita - thank you for your kind posts.
Went in this evening, but only stayed half an hour as Mum was a bit fretful & not settling while I was by. However, a carer told me that she'd drunk some soup at tea, and another said that after they'd changed her bed, Mum had told her that she loved her. Very sweet!
PS - I just heard that my sister has arrived safely, and she'll visit Mum tonight and over the next couple of days while she's here. My sister is a (newly-retired) dementia nurse so I'm handing over to her with a certain relief, and will go in again on Friday evening when she's gone home - don't want to tire Mum with too many visitors.
Pleased your sister arrived safely Marcelle. Take the time to rest and have some ‘me’ time while your sister visits mum. You certainly deserve it. Take care xx
That's a good plan Marcelle, as Scouts girl says, you should rest as much as you can over the next couple of days, you must be so very tired by now.
Your sister will be able to share the worry with you now (she must've been so stressed being such a distance from your Mum and not being able to actually see how she is herself).
Enjoy your rest and sleep well xxx
Take care of YOU for a little while, it will be good to have your sister to share the load I'm sure.
Thank you, Scouts girl and gene genie.
My sister was shocked to see Mum last night and rang me to ask if I thought she should have morphine. I said I didn't think that she was in that sort of pain - but we were both concerned by Mum's laboured breathing.
This morning when my sister rang the care home, the team leader said that she too was worried by Mum's breathing and had called in a doctor from Mum's practice to visit later in the day. My sister went in and found Mum less agitated than the night before, but she still felt worried.
A nurse came first, and said she would order a better mattress for Mum to lie on, maybe an 'airflow', whatever that is.
Then the GP examined Mum. Her oxygen saturations were very low, 78%. The GP said her pneumonia had been very bad. He has prescribed anticipatory medication, through a syringe driver which will be set up and maintained by the district nurses. He has prescribed midazolam (for agitation) a bit of pain relief and an anti emetic.
He said Mum is feeling hot and cold due to the infection and not much more. My sister and I had both noticed that she felt very hot and kept throwing her covers off, but yet her hands and feet felt like ice.
She has had 5 teaspoons of soup and 8 of raspberry jelly - pretty good by current standards, no doubt because my sister is there, though the carers try very hard too. My sister has stayed there most of the day, I think, and is playing music to my mother, singing with her, and reading poetry. My mother has perked up a bit, by all accounts, with all the attention.
Of course, my sister knows much better than me how to deal with people with dementia. She is also able to ask more questions about my mother's illness. Over the two weeks since it happened, I have rather lost my momentum, after twice pressing doctors to do things which they tried but which didn't actually work. So I have become maybe a bit fatalistic, whereas my sister is a very dynamic character.
I am very pleased that she's here and will make the most of having a little 'time off', though I am a little tense too, because with this sister I have to mind my p's and q's, or else....!
An airflow mattress is what everyone who is bed bound should have. John had it in all hospital visits and at the nursing home. It comes with a machine stuck to the end of the bed that pumps air around the mattress which apparently helps avoid bed sores.
Can you or your sister ask the home to get a palliative care nurse in? I didn't know about their existence but there was one in hospital and when John seemed to have laboured breathing she examined him and concluded that he was actually quite relaxed and painfree - breathing will be laboured at the end no matter what.
Thank you, Beate.
When my sister next telephones, I will mention about the palliative nurse.