Feeling helpless

[He1en]

So sorry to hear what you are going through, my wife has a diagnoses of Alzheimer's and is a similar age to your mum. I gave up my job to look after her.
I am sure you have done enough however I am concerned why she has bed sores, oral thrush and in pain.
These issues are a safeguarding issue, your mum should be rotated and repositioned hourly which will reduce her bed sores, I assume she is doubly incontinent therefore her pad must be changed regularly and oral thrush can be treated. If she is on end of life or palliative care she should be pain free, which will also help her fear of dying.
Unfortunately in my experience what you mum is experiencing is all too common in care homes
Do not feel guilty about having two nights away, you deserve it and good luck for the future

No please don't assume that the care home are at fault. She has severe MS which has added to the equation. Whilst possible the team were hoisting her and getting her into the lounge etc. I'm not going into the gory details but that had to stop so they have been turning and changing her (when required) hourly with nursing support (and external well fair checks every other day). She is on the maximum pain medication they can administer and is still hanging on. The thrush has been treated repeatedly but just comes back, I suspect because she has always had candida issues. They are literally doing all they can but her skin keeps splitting. She has the very end of life drugs at the ready but isn't there yet and legally the poor staff are in a really horrible position. The care staff are as devastated as I am, I cannot fault there attention etc. When she came out of hospital in January for the 3rd time she was in an appealing state. I didn't think she would get to the middle of the month and neither did the Dr's. It is purely the care home staff's time and attention that nursed her back to relative health over the past year. We could absolutely not have asked them to do more and all the other medical/social care etc etc agencies agree. It is just highly complex. I very much appreciate you checking though as I do understand that in some places this is not the story

 

[He1en]

You don't realise it at the start of the 'dementia journey' but you do need to pace yourself as many people live for years after diagnosis. My mother lived for seven years after diagnosis but, looking back, was showing symptoms for at least a couple of years before that. Most people don't get help in early enough and struggle on for far too long until exhaustion sets in. The stinginess of the social care funding system doesn't help. Paying for even a couple of care visits a day soon mounts up.

I totally agree! Mum was very good at hiding things initially, plus we were managing my dad's mum who also had dementia so she kind of managed tk hide behind that. I think looking back there were signs a good 10 years ago but mum has always had mental health issues and so it was hard to distinguish between depression/anxiety and this something else. It's been a complex and complicated journey and yes by the time we realised we needed help we had probably tried to manage for way too long. The system is rubbish! And support for carers non existent. My poor dad was told he had to be with my mum 24 hours a day at one point to help her in the night as well. Good job I only live 2 minutes away. This is another rant entirely though and maybe a battle for another day when hopefully things could be said that might help others. Thank you for your message

 

[He1en]

Hi He 1en,
Although my mum is not at end of life, every time I visit her I leave the nursing home nearly in tears, and always say to my husband I wish she could go to sleep and not wake up. The dementia has really taken it's toll on her both mentally and physically and her days are spent laying in bed either looking at the ceiling, pulling her fingers until they are sore as well as other things. I think it's because we love/care about them that we have these thoughts.

Take care of yourself, sending hugs

Thank you! And I agree. The lovely care home manager said to me today the people who feel guilty are never the ones who have any reason to do so. I think she is probably someone to listen to

 

[canary]

Oh @He1en I am so sorry to hear about your mum.
She really does sound like she is very near to end of life, yet people with dementia seem to cling to life far longer than you would think possible. The care home certainly are doing everything they can and Im glad they have already got the EOL medication ready.
((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))

 

[He1en]

Oh @He1en I am so sorry to hear about your mum.
She really does sound like she is very near to end of life, yet people with dementia seem to cling to life far longer than you would think possible. The care home certainly are doing everything they can and Im glad they have already got the EOL medication ready.
((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))

Don't they just! Very hard to get my head around how she is still going. She has always been strong willed though and fought against all odds so I shouldn't be surprised! She is amazing (but I wish for her own sake she would just drift off). Thanks for the hugs ?

 

[millalm]

My story almost mirrors yours. I first saw the warning signs 8 years ago, as my Dad lay dying in hospital, he asked my mum to bring him just 3 simple things, then asked her had she written that down? I remember wondering why he had insisted in her writing it down. After his passing it soon became evident that he had been carrying her in many ways that i had not realised. Fast forward 8 years and mum is now in a care home, scarcely eating, immobile and disappearing both mentally and physically at an alarming rate. It is only in recent weeks that I have been made to realise, that my own self-care MUST come first and I should not feel guilty about that.

@Feeling unsupported
Even more than you know. My Mum looked after my Dad for 12 years at home after he had a massive stroke that left him paralyzed right upper body and arm/hand- he was right handed, and weakness in his right leg. He survived a broken hip, and an ever growing aortic anyeurism and countless other maladies. When he started having heart attacks and could no longer drag himself around on an Aframe type-Zimmer he ended up in a wheelchair and eventually a care home after Mum had a serious health scare when she had a UTI which wouldn't clear up. ( She ended up in hospital and had what I believe to be a psychotic episode that lasted several days) Even when he was in the care home he would remind Mum of things she needed to do/bring/remember, and would sometimes say to me "your Mum doesn't remember a bloody thing!" Since that had often been a bit of a family joke, I didn't really pay that much attention to it, also Dad was so angry that we had ' put him into a home' that I thought it was just 'their' banter. I know that I should be doing self -care but it has been going on so long that I have just sort of lost sight of myself. I only ever notice when I catch my reflection in a mirror lol. I am sorry to know that you are seeing your Mum in similar decline to my Mum. I just burst into tears when I saw her tonight through my eye goggles in my N95 respirator and gown and gloves. It is not guilt that I feel thinking about her when I am not there, just sorrow for which there is no solace. I really hope you are able to practice some self-care without guilt, but I am afraid that those of us like yourself who care so much have trouble letting go of whatever those feelings are that keep us questioning if we've done enough. You have been at it for 8 years with your Mum and it sounds like a journey with your Dad before that . Without knowing any more about you than your post I would say it sure sounds like you have done as much as you can to see them through. Take care.

 

[millalm]

I am so sorry you have been through such a lot. It's so hard isn't it? I've given up my business and social life to help care for her over the last 5 years (last 2 extensively) and my son is only just 14 I am so conscious time with him is flying by and still I don't feel I do enough for her. But, you are so totally right and thank you for your words. I feel guilty enjoying myself when she is so ill but life goes on and there is fantastic stuff on my doorstep. Maybe it's time to be a bit more balanced. I have actually wondered at times whether me being with her everyday is detrimental to her, maybe she would actually appreciate some space. Thank you!! You are right, I am a fixer by nature but I can't fix this and I am making myself ill trying. Thank you for your support, I don't think I am seeing this as wisely as you but if I can return the support at all I am here. Thank you and here's to respectfully rekindling some joy for us both x

@He 1en
Thank you for your kind words, I often wonder if I am keeping her here on earth by visiting everyday! I too am a fixer and used to being in control of situations so I know what you mean, also about making yourself sick about it. Everyday now for quite some time I dither about -should I go, should I take a day off, should I go .....99% of the days I go and the odd day I don't I stew about it all night . Wish I had a cure for what ails us but it is good to share with others who understand, that's often all the support we need. I wish you Joy x

 

[He1en]

@He 1en
Thank you for your kind words, I often wonder if I am keeping her here on earth by visiting everyday! I too am a fixer and used to being in control of situations so I know what you mean, also about making yourself sick about it. Everyday now for quite some time I dither about -should I go, should I take a day off, should I go .....99% of the days I go and the odd day I don't I stew about it all night . Wish I had a cure for what ails us but it is good to share with others who understand, that's often all the support we need. I wish you Joy x

I am so sorry, what a lot of pain and stress you have had to carry. Please take lots of care, you sound amazing, I think your parents have been very lucky to have you. My husband bought me a book the other day called Big Panda, Little Dragon, it has beautiful illustrations and just a few poignant words. It made me cry but also gave me hope and a reminder that my worth is not measured by other people's happiness (a life pattern I am trying hard to change). I don't know whether it would be for you but maybe something to keep an eye open for. Wishing you some rest and a day where your mind switches off a little xx

 

[Feeling unsupported]

@Feeling unsupported
Even more than you know. My Mum looked after my Dad for 12 years at home after he had a massive stroke that left him paralyzed right upper body and arm/hand- he was right handed, and weakness in his right leg. He survived a broken hip, and an ever growing aortic anyeurism and countless other maladies. When he started having heart attacks and could no longer drag himself around on an Aframe type-Zimmer he ended up in a wheelchair and eventually a care home after Mum had a serious health scare when she had a UTI which wouldn't clear up. ( She ended up in hospital and had what I believe to be a psychotic episode that lasted several days) Even when he was in the care home he would remind Mum of things she needed to do/bring/remember, and would sometimes say to me "your Mum doesn't remember a bloody thing!" Since that had often been a bit of a family joke, I didn't really pay that much attention to it, also Dad was so angry that we had ' put him into a home' that I thought it was just 'their' banter. I know that I should be doing self -care but it has been going on so long that I have just sort of lost sight of myself. I only ever notice when I catch my reflection in a mirror lol. I am sorry to know that you are seeing your Mum in similar decline to my Mum. I just burst into tears when I saw her tonight through my eye goggles in my N95 respirator and gown and gloves. It is not guilt that I feel thinking about her when I am not there, just sorrow for which there is no solace. I really hope you are able to practice some self-care without guilt, but I am afraid that those of us like yourself who care so much have trouble letting go of whatever those feelings are that keep us questioning if we've done enough. You have been at it for 8 years with your Mum and it sounds like a journey with your Dad before that . Without knowing any more about you than your post I would say it sure sounds like you have done as much as you can to see them through. Take care.

Thank you @millalm for your kind words. Yes, you're right it has been 9 years in total and I reached a point some time ago, where I felt I could no longer take it. Hey ho, here I am still battling on, trying to keep my own wellbeing afloat. I wish us both the strength to keep doing as much as we are able, for as long as needed.

 

[Peace lily]

I'm writing this and feel numb, like I'm existing in some surreal parallel universe. My partner's dad died on Tuesday and even though he had terminal cancer, his passing was sudden and unexpected
Then on Friday, my Aunty (my mum's sister) died. Today, we received the devastating news that my wonderful dad died at 1.30 this morning. He had been in hospital for five weeks, but just couldn't fight any more. He died peacefully and my brother managed to get there in time. X

 

[Cat27]

Oh my goodness @Peace lily
That‘s an awful shock for you. My thoughts are with you.

 

[nae sporran]

That is a horrible shock to you, @Peace lily. I wish you strength for the coming days and offer you condolences.

 

[Shedrech]

such devastatingly sad news for your family @Peace lily
you and your partner must be reeling
I'm glad your brother was with your dad, I hope there's some comfort in that for you both

 

[He1en]

What terrible news @peacelily i am so sorry, you must feel totally bombarded. Sending hugs

 

[Sarasa]

Thinking of you @Peace lily .

 

[Peace lily]

Thank you all for your kind words. Is it normal to feel so numb and removed from the situation. I feel as if I'm just carrying on as if nothing has happened? Xx

 

[canary]

Thank you all for your kind words. Is it normal to feel so numb and removed from the situation. I feel as if I'm just carrying on as if nothing has happened? Xx

Yes.
After mum died I felt numb for months. - I felt I was acting in a film and half expected the director to jump out saying "cut, cut! Can we just do that again, please?" I posted about it on here and everyone reassured me it was normal. Although you will find that everyone around you will expect you to "get over it" and "move on" after a few weeks, in reality it takes much longer than that.