Well mums been end of life since August , no mobility hoisted and moved 2 hourly during night . Sleeping 23 hours out 24 ! Struggling to swallow so on Ensure and porridge etc , no communication and losing weight. She had chest infection at weekend so on antibiotics, visited her Tuesday to be met by palliative care nurses who had a good chat with me about next stages possibly hospital due to infection and then maybe move from CH to NH ☹️ Spent Wednesday feeling awful so worried it’s such a rough journey and I think these decisions are heartbreaking but necessary. So I went today and she was awake and we spoke it was so precious I saw my mum again , but I’m scared that this rally is a peak before the next drop . For all of you on TP at this stage and heading into the unknown thinking of you .
One of those visits
- Thread starter Moose1966
- Start date
I wish you strength at this time and that your mum stays as comfortable and stress free as possible.
We are on a similar path at the moment. Your Mum sounds very similar mine. It is such a strange state of limbo, not wanting to lose them but hating this stage of dementia which they have reached and wishing them a release. Sending hugs to you xx
It is horrible, mums care home do get her up, dressed and into main lounge so that’s better than in bed all day , I guess once bedridden that’s the next stage , I haven’t been today ! I want to but she was so good yesterday I’m kind of scared in case she’s bad again , I want to keep the good visit memory a little longer ☺️ . Hope your visits go ok
My Mum still lives with me. She is in a hospital bed and we have 2 carers in 4 times a day to do all her personal care. She hasn’t been out of bed since 29th December. She has very little quality of life. It’s so sad xxx
@Moose1966
I could almost write your post too, word for word.
Exactly the stage my Mum is at.
She’s had a sharp decline with mobility since September, and everything snowballed since December. Eating, drinking, talking.
Just after New Year a chest infection which she has pulled through.
Mum has been moved from Dementia Care level to Hospital Level as she requires 2 carers & a hoist if need be.
If shes not sleeping she is awake with eyes closed about 23/24 hrs.
A few spoonfuls of food takes at least 1/2 an hour. Shes still swallowing OK. You have to give food or drinks a little at a time and slowly.
The only response we get at times is in her more lucid, eyes open moments where she might tap her feet to music or smile if you say something from a memory long ago.
To think that Mum could be like this even in another month is hell, as I feel it is for her.
Living in limbo, jumping at every phone call that flashes on my phone from her care home.
Such a cruel betrayal over body & mind.
I could almost write your post too, word for word.
Exactly the stage my Mum is at.
She’s had a sharp decline with mobility since September, and everything snowballed since December. Eating, drinking, talking.
Just after New Year a chest infection which she has pulled through.
Mum has been moved from Dementia Care level to Hospital Level as she requires 2 carers & a hoist if need be.
If shes not sleeping she is awake with eyes closed about 23/24 hrs.
A few spoonfuls of food takes at least 1/2 an hour. Shes still swallowing OK. You have to give food or drinks a little at a time and slowly.
The only response we get at times is in her more lucid, eyes open moments where she might tap her feet to music or smile if you say something from a memory long ago.
To think that Mum could be like this even in another month is hell, as I feel it is for her.
Living in limbo, jumping at every phone call that flashes on my phone from her care home.
Such a cruel betrayal over body & mind.
Oh my word so similar and I’m sure there are many more on TP . I sleep with my phone and even wake up thinking it’s flashing at 3am it’s not , but then I’m wide awake and that’s when it is a long lonely night , house is quiet hubby and kids asleep! My mind is working overtime I’m glad when it’s light enough to get up and get the day started, night time thoughts are tough . To all of you on TP thank you for your support, posts and help ..... it’s enormous and does make a difference ❤️
@Moose1966
well I’m thinking of you from afar in New Zealand
I keep waking at 4-430 every morning, my mind working overtime. Doesnt matter what time I go to bed.
Some mornings Im out of bed by 5am, I’ve had enough
Wouldnt be at all surpised if I get a call from Mums care home at some point between 4-4.30am
well I’m thinking of you from afar in New Zealand
I keep waking at 4-430 every morning, my mind working overtime. Doesnt matter what time I go to bed.
Some mornings Im out of bed by 5am, I’ve had enough
Wouldnt be at all surpised if I get a call from Mums care home at some point between 4-4.30am
That explains time difference on message posts I have friends in Melbourne have been once love Australia and on my list next time is New Zealand . I will think of you when I’m awake in night and hope your day is ok@Moose1966
well I’m thinking of you from afar in New Zealand
I keep waking at 4-430 every morning, my mind working overtime. Doesnt matter what time I go to bed.
Some mornings Im out of bed by 5am, I’ve had enough
Wouldnt be at all surpised if I get a call from Mums care home at some point between 4-4.30am
Back to visiting again as D and V bug clear in CH , mums been confined to bed due to skin breaks but they’re healing slowly , she has been more comfortable and pain free , however just been today and she is saying she’s in agony !! ☹️. Mum doesn’t normally communicate so to have her come out with this and ask me to help her was a bit alarming. I promised her I would request the GP visit , as we were leaving she said goodbye and I love you, she hasn’t spoken like this in months . Am I right that she could be saying her goodbyes , she’s very frail and eats a tiny amount in a day . I spoke with CH staff and they have her down for a medication review I have requested that they also look at pain relief as paracetamol not helping , they are contacting GP tomorrow. They have mentioned liquid pain relief and possibly the JIC pack and also a review with her palliative care nurse , I’m going in tomorrow to see that this gets done . I just want to thank this forum for the advice that is given !! The other week I read some ones thread and they said you are your mums voice ........ I remembered that today and spoke up for her sake .
Hi @Moose1966
was thinking of you just yesterday.
Sorry to hear about your Mum still and they can get pain relief sorted.
My Mum is still no better or worse from a month ago, although losing weight rapidly, slipped down & fell out of her lazyboy chair and had start of a possible pressure sore on lower back, but has cleared.
Her Quetiapine has been reduced from 75mg to 12mg a day.
She is no longer agitated & combative like she was in the Dementia unit, although with no mobility and asleep 23odd hours a day, not surprising?
Have had to email management with a few grumbles.
I hear you on being their voice.
was thinking of you just yesterday.
Sorry to hear about your Mum still and they can get pain relief sorted.
My Mum is still no better or worse from a month ago, although losing weight rapidly, slipped down & fell out of her lazyboy chair and had start of a possible pressure sore on lower back, but has cleared.
Her Quetiapine has been reduced from 75mg to 12mg a day.
She is no longer agitated & combative like she was in the Dementia unit, although with no mobility and asleep 23odd hours a day, not surprising?
Have had to email management with a few grumbles.
I hear you on being their voice.
Hi @Moose1966
You are doing so well by your mum and she feels that
It's lovely that she spoke up as you were leaving, a moment to treasure
You are doing so well by your mum and she feels that
It's lovely that she spoke up as you were leaving, a moment to treasure
Yes I keep thinking about it ❤️ It will stay with me and keep me strong while we continue this journey and I hope help to ease her pain . Big day tomorrow need to get her comfortable.
Mums pain now taken care of with proper dose of pain relief , regularly given seems to have helped . She is still asleep all of the time but seems peaceful , I have spent most of weekend with her just sat talking , singing and letting her know I’m there . Spoke with staff today and I get the impression that mum won’t be out of bed again , she is in curled up position and stiffened muscles ☹️So I guess it getting near end eating a tsp of food and still taking fluids though . I tried to ask the question today “ how long “ but they aren’t willing to commit , I know they have said when the time comes they will call me whatever time of day ! ( my request) can’t bear to think of mum alone . Thinking of all out there on this terrible journey ❤️
hi @Moose1966
I am so glad that your mum is now being kept pain free and is peaceful, well done, it makes such a difference for you both
sending warmest wishes
I am so glad that your mum is now being kept pain free and is peaceful, well done, it makes such a difference for you both
sending warmest wishes