Yes. mums carers were telling me she was singing along to the songs they'd put on which surprised me as she has become so much more 'inward' now -I love it when she does sing and still in tune too
I've been avoiding this part of TP, but I think it's time to accept it...
- Thread starter Palerider
- Start date
Today I re-visited the CH to check on things after my disappointment yesterday -I was happy to see the things I had addressed were seen to immediately. Its really hard working full time and trying to 'be there' -some days I am just exhausted and decide to stick to the one visit a week, but clearly I need to do two at least currently.
I had a chat with mums new nurse R as F has left (sadly), but she is equally switched on and I like her approach. I raised the issue that I have addressed things before with the manager over concerns I have with constant ever changing agency staff -they have no prior experience or training and when I visit I can see they constantly need to be prompted (supervised). I agreed that these agency carers are at least caring, although they need direction, but its not good enough. R agreed and told me they were doing another recruitment drive and the permanent staff have raised their concerns as well. Let's hope for better times ahead.
I had a chat with mums new nurse R as F has left (sadly), but she is equally switched on and I like her approach. I raised the issue that I have addressed things before with the manager over concerns I have with constant ever changing agency staff -they have no prior experience or training and when I visit I can see they constantly need to be prompted (supervised). I agreed that these agency carers are at least caring, although they need direction, but its not good enough. R agreed and told me they were doing another recruitment drive and the permanent staff have raised their concerns as well. Let's hope for better times ahead.
A difficult visit yesterday. I've been mulling it over till now. Everything I have raised has been addressed so I felt more relaxed, but mum is developing new behavior's I haven't seen before and she just stands as if she is stuck in one spot for ages and ages -not moving. It took ten minutes for me to get her to move and come and sit down with me, at least I can say she recognized my voice. Bless her she was soaked and she needed changing -her water tablets seem to be more than efficient 
. Anyway after being changed she shuffled through her room door and saw me and gave a big smile and said 'oh look who it is' -I was gob smacked, but I'm not complaining and up is better than a down any day.
. Anyway after being changed she shuffled through her room door and saw me and gave a big smile and said 'oh look who it is' -I was gob smacked, but I'm not complaining and up is better than a down any day.
Your poor mum. It's awful when they just look lost or vacant. And it must seem a big change for you - your mum has always been so purposeful in her walking! Difficult as that can be, if she stops you'll know the dementia is progressing. Which you know anyway but in your mum's case it would be a significant change.
She's still talking well though!
She's still talking well though!
I do feel for you.
Il never forget when I helped mum up once, out of her chair. She literally couldn't think to move her legs. She couldn't do it. I hate this disease 🥹
Il never forget when I helped mum up once, out of her chair. She literally couldn't think to move her legs. She couldn't do it. I hate this disease 🥹
Well I took flowers and chocolates for mum on Mother's day, but when I arrived she was in a chair on the corridor flat out. There has been another change and this one is a little more concerning, she has now started to sleep standing up which means she then goes into a fall. It seems that no matter what comes @Jaded'n'faded mum is determined she is not going to relent wandering even when she can't keep her eyes open. Anyway the staff have switched onto it and keep a close eye on her with a chair ready .
I think its true to say over the last several months mum has drifted further away from me than before and it gets harder to witness as she changes, each one a subtle step down to the next sordid state that dementia can induce in someone. I also hate this wretched disease @heartbroken01
.I think its true to say over the last several months mum has drifted further away from me than before and it gets harder to witness as she changes, each one a subtle step down to the next sordid state that dementia can induce in someone. I also hate this wretched disease @heartbroken01
@heartbroken01 and @Palerider , thinking of you both and your loved ones. This disease is evil. Take good care x
I am beginning to wonder not for my sake but for mums, when will this ever stop I just know that at this stage she would not have wanted to continue and it breaks my heart that she is in this perpetual world of complete and utter limbo with which no one can help.
Today was yet another easter visit. I took an easter card and two different types of chocolate eggs. She was sat in the dining room and I could see she had pushed her dinner plate away, which consisted of mince, gravy mashed potato's and peas. One of the carers asked 'have you finished ?' -mum rather amusingly glared at her. I said my mum won't eat mince, she never has and probably never will. I felt disappointed for her -no roast lamb on Easter Sunday . It was a surprise to see mum on form, but as I keep on saying this is how it is now -never knowing how she is going to be when I turn up. She was very on form and even took her eggs out of the bag I opened up to show her and then read her card -well not quite read but she skimmed over it. I noticed she is not as animated as she used to be and no longer gets up to walk around like before -sometimes I would have to follow her up and down the corridors while holding a partial conversation neither of us grasping the others words
I was grappling with how long its been now since mum went into care and then I thought was it 2019 or 2020 when my sister passed?? Somehow I seem to have stopped counting, where we were and where we are now have become two very different places in time.
. It was a surprise to see mum on form, but as I keep on saying this is how it is now -never knowing how she is going to be when I turn up. She was very on form and even took her eggs out of the bag I opened up to show her and then read her card -well not quite read but she skimmed over it. I noticed she is not as animated as she used to be and no longer gets up to walk around like before -sometimes I would have to follow her up and down the corridors while holding a partial conversation neither of us grasping the others words I was grappling with how long its been now since mum went into care and then I thought was it 2019 or 2020 when my sister passed?? Somehow I seem to have stopped counting, where we were and where we are now have become two very different places in time.
Palerider my heart aches for you I have been where you are now the visits the changes. My mum also loved chocolate and she was like a child when I took her some. Then she wasnt interested anymore she used to sing along to songs I played for her and then that also stopped truly heartbreaking to watch. Thinking of you xxx
Well today I am feeling a little upset, mum is not great at all and she managed to tell me she feels unwell on Saturday. I agreed she looked awful, withdrawn and purple complexion, not herself at all. I spoke with her nurse and she said they would keep an eye. I went back today and she is very much looking unwell, not responsive as usual and purple lips and hands and dusky fingers. I stayed with her for a while and for the first time she wasn't interested in her raspberry and almond bake cakes at all. I can't help feeling her heart failure is now becoming her most significant problem and there is nothing anyone can do, at least she has a pain patch on and she was not in pain when I saw her. I had another chat with her nurse for today and told her I had an uneasy feeling. I asked her to call me if there is any deterioration and I will come in. I feel so lost at times and today is one of those times. I feel guilty leaving her on a good day and this just magnifies that feeling. I don't want her to suffer but at the same time she is the last of my kin and a lifelong friend.
@Palerider , thinking of you and your Mum.it is excruciatingly painful watching those we love deteriorate. So pleased to note that your Mum is not in any pain.
I will say try not to feel guilty but I also know that at times like this all of our emotions and thoughts are increased. You have shown her such love, respect and care and she knows that.
Do try to look after yourself.
Its been a while. Mum is slowly fading now, I see the changes every week, not animated as she has been and always asleep when I visit these days. Today she was in her recliner fast asleep and stirred only once. It has been such a long journey from 2015 till now and I feel differently about things. I have no idea how much longer this will go on for, but finally I have resigned myself to the loss -there is only so much clinging on in sheer denial any human being can do. I carry on only to say she is loved and dearly missed, but my mum as I knew her has all but gone, before me sits a little frail sleepy old lady worlds apart from mine. I will continue as I have always done and hope to get a glimpse now and again of my mum.
Palerider my heart aches for you this stage is so so difficult wanting their suffering to end and be free from this horroundous disease that has robbed so many of us from our loved ones sending you love and strength you and your mum are in my prayers 🙏 xx
I don't know if this will help at all, but Naomi Feil suggests singing/music and touch as most likely to be something that reaches your mother. And even though my dad is not at your mom's stage yet, I find that sitting with him, singing to him a song that he knows or playing some music he likes, and holding his hand or stroking it, also makes me feel better, even if it changes nothing about the situation.
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