Nursing homes

[Lavender45]

Sorry its a bit early/late depending on your point of view. That's an age in A&E. I know if it were my mum she would be very agitated, she's needed some breathing tests recently and if she had to wait more than 5 minutes boy did I hear about it. I'd never manage to keep her calm for that length of time waiting to be seen emergency or not.

I think you are a star⭐to have managed for that amount of time. Others might disagree, but I think a PWD should be fast tracked through to minimise distress. 12 hours for your hubby and yourself must have felt like a lifetime.

I hope T is ok (if it was a fall hope he's not got a serious injury). You must both be exhausted. With luck you are asleep and don't read this until much, much later in the morning. X

 

[HillyBilly]

Hi Aisling.
I hope that there's nothing seriously up with T?
Hugs and best wishes to you both xxx

 

[LadyA]

Sadly, 12 hours in A&E happens too frequently over here, Lavender. Last time my mum was brought to hosital, I spent an entire night, from 8pm on a waiting room chair with her, and she finally was given a trolley to lie on the following morning. I was told that the delay was that she needed a trolley, and to be admitted, but they didn't have a trolley available. Then, she wasn't even in a treatment bay she was out in the middle of the unit, with doctors, nurses and ambulance staff rushing back & forth all the time and absolutely no privacy. She spent 1 1/2 days there. No beds available.

Aisling, I hope your husband is ok, and that it's nothing too serious. It's very worrying, any trips to hospital for them. Very disorienting. Mind yourself. xx

 

[Lavender45]

Oh Lady A I know I am on my soap box here, but that is disgusting! Your mum and Aisling's hubby deserve so much better! x

 

[2jays]

Oh Lady A I know I am on my soap box here, but that is disgusting! Your mum and Aisling's hubby deserve so much better! x

Similar scenario that happened to LadyA happened to my OH here - no dementia but at temp of 40c and being sick/retching.....


Sent from my iPhone using Talking Point

 

[Aisling]

Similar scenario that happened to LadyA happened to my OH here - no dementia but at temp of 40c and being sick/retching.....


Sent from my iPhone using Talking Point

Thanks to everyone who responded to my post with genuine help and support. Don't know when I will be able to post about me and OH again. I don't really trust myself to do so. Thanks a million to people who PM with so much support. I will always respond to PM and indeed to replies to post if and when I post again.

Am too angry with the health system. OH and I did not deserve that treatment. Caring for me has escalated in a big way since OH started in NH. In a different way of course. The idea that when someone is in NH, then carer has a new lease of life...... is in my experience not correct. Am angry that some professionals do not seem to be allowed to use common sense. If they do this, then litigation may start up.....

OH has another appointment re different matter soon. If necessary I will pay someone to be with me so at least I will have another pair of eyes and ears with me. I will not even bother contacting invisibles for help. Made several calls yesterday for help....... I will not do that again. Crying alone in a garage forecourt late at night, is not an experience I need again. It will happen again. Am realistic enough to know this. Are some people aware of how stress can escalate, even to the point of being unbearable? A young man knocked on my car window to ask was I ok? Thank God for people like him. When it happens again, I trust that someone will appear to help me.

Am angry with hospitals and lack of knowledge and indeed training in dealing with people with this horrific disease and their CARERS. I know that many others are struggling in other areas, eg parent with sick children etc. this is not just, fair or moral.


Am angry that voluntary associations are not lobbying for change.


I pray for hope, awareness, kindness and understanding for everyone. I thank God for the many fabulous strangers I meet especially the amazing children, teenagers and young aware people. They are stars shining in darkness.

Blessings to everyone,

Aisling

 

[jugglingmum]

Sending hugs - you are doing so well Aisling

 

[Aisling]

Sending hugs - you are doing so well Aisling

Thank you.

Aislimg xx

 

[tigerlady]

Sending you loads of hugs. You have had so much to deal with, mostly on your own. Whatever happened to T, you should not have had to endure 12 hours in A&E, with untrained staff lacking common sense (or being scared to use it) and understanding of dementia.
I don't post much on your thread, as much wiser and more experienced people offer you comfort and good advice, but I could not read this without sending hugs and love xx

 

[Aisling]

Sending you loads of hugs. You have had so much to deal with, mostly on your own. Whatever happened to T, you should not have had to endure 12 hours in A&E, with untrained staff lacking common sense (or being scared to use it) and understanding of dementia.
I don't post much on your thread, as much wiser and more experienced people offer you comfort and good advice, but I could not read this without sending hugs and love xx

Thank you Tigerlady. I love your name. Don't underestimate your wisdom. You took the time to reply and believe me when I say it is helping me. I need people to virtually hold me at the moment and you are doing that.

Lots of hugs back,

Aisling xx

 

[Red66]

Hi Aisling, it makes me mad to hear of a+e trips. My Dad was taken in with aspiration pneumonia one time but somehow still had it in him to shout loudly and swear even louder. People were laughing. He got moved by himself (mum and I were with him) but what annoyed me was a nurse said that she was laughing with the lady in the next cubicle as she was laughing at my Dad and the way he was 'carrying on'. I told the nurse I found her extremely insensitive and she had the cheek to give me a dirty look. Safe to say that I told her she was in the wrong job and that we wanted another nurse. Crazy. Stay strong love xx

 

[Aisling]

Hi Aisling, it makes me mad to hear of a+e trips. My Dad was taken in with aspiration pneumonia one time but somehow still had it in him to shout loudly and swear even louder. People were laughing. He got moved by himself (mum and I were with him) but what annoyed me was a nurse said that she was laughing with the lady in the next cubicle as she was laughing at my Dad and the way he was 'carrying on'. I told the nurse I found her extremely insensitive and she had the cheek to give me a dirty look. Safe to say that I told her she was in the wrong job and that we wanted another nurse. Crazy. Stay strong love xx

Good for you Red. And your Dad. A huddle of doctors and nurses chatting about their week end plans yesterday!! I couldn't give a flying pig about their plans.... How dare anyone laugh at your Dad.

Aisling xx

 

[Red66]

Good for you Red. And your Dad. A huddle of doctors and nurses chatting about their week end plans yesterday!! I couldn't give a flying pig about their plans.... How dare anyone laugh at your Dad.

Aisling xx

They are not at the hairdressers!!! They should be more sensitive even if you have just broke your arm, with no history of mental illness never mind dealing with dementia patients and there families who are no doubt up the wall, stressed out and upset. Makes me really angry!!!

Hope your ok Aisling, I know you're going through it at the moment. Thinking of you. Xx

 

[Florence.]

12 hours in accident & emergency with OH today.

Aisling

Ah Aisling, what a time you're having. A change of meds seems to produce different effects in different people. We tried something last week and my husband couldn't feed himself, which he usually does and was very confused. Changes like this can happen quickly. I think his decline has moved on a phase as I'm still up most of the night, he thinks everything is smaller and that he's living in a dolls house. These poor people, what goes on in their minds we can't begin to imagine or understand. Hope you are okay. Looking at the stars are you?? Aisling, you're a star yourself!xx

 

[HillyBilly]

Crying alone in a garage forecourt late at night, is not an experience I need again. It will happen again. Am realistic enough to know this. Are some people aware of how stress can escalate, even to the point of being unbearable? A young man knocked on my car window to ask was I ok? Thank God for people like him. When it happens again, I trust that someone will appear to help me.

Oh Aisling that's just both heartbreaking and heartwarming that there ARE people out there with eyes and sensitivity and compassion. (It's a shame they're not always to be found where they should be i.e. in A&E!).

Your idea of paying someone to accompany you next time, if necessary, is a good one though it's sad it might have to come to that.

Huge hug x

 

[Aisling]

Oh Aisling that's just both heartbreaking and heartwarming that there ARE people out there with eyes and sensitivity and compassion. (It's a shame they're not always to be found where they should be i.e. in A&E!).

Your idea of paying someone to accompany you next time, if necessary, is a good one though it's sad it might have to come to that.

Huge hug x

Florence andHB, thank you. I can't get the horror that CAT scan out of my mind.

Aisling xx

 

[MollyD]

Sending De Usual Support. You are remarkable. X

 

[Aisling]

Sending De Usual Support. You are remarkable. X

Hi everyone and thanks again Molly. All tests are clear TG. OH eating and drinking again. Also calm and content. It is now a trial and error process. I wish more research was done for people with Alz, more information on progression of this disease and how treatment may alleviate some systems. We need a holistic approach in hospitals too. And pigs will fly.

NH is brilliant. Staff take no chances re medical aspects. Doc concerned re possibility of blood clot or complication from fall. They don't know why OH got very unresponsive so ambulance called and me of course. Now we know it is another dimension of Alz. They had to call careers back to NH as shortage of staff. I understand.

Oh yeah I managed to get hair done yesterday. Left phone in car and when I came out I found a message from NH. Nothing wrong but I was needed to go in. Meltdown for me on way home when I discovered I was driving on wrong side of road!

The reality for me is I am still OH carer and must be available at all times. I would like to gently emphasise to careers considering NH care that your role as carer will still continue. Please don't wait until you have a breakdown. Then what will happen?

Aisling xx

 

[LadyA]

Aisling - you need to have some relaxation or you won't be fit to care. How about treating yourself to something simple like a relaxation cd, eyes closed, lying down, phone turned off for an hour. And just lie there, and breathe in and breathe out. Nothing else.

 

[MollyD]

Aisling, I'm so pleased T is ok for now, relatively speaking.

You're absolutely spot on in your point about carers' ongoing involvment and responsibility. It feels like one is being a moan or not letting go to speak of such things. Certainly, for me, the greatest meltdown period came while mum was in hospital longterm because I had to face the reality that I could no longer care for her at home, yet was still spending hours caring for her while she was there, while also advocating (punching and flailing in HSE quicksand for the 1st 3 weeks) for her, and heading back to unreasonable paperwork to get the next stage in procss AND while ringing and viewing NH after NH with, at times, a hopeless despair that nowhere would be ok for her. All the while wishing mum was well enough for me to cope at home. Grieving while grafting.

Now she's in her new home -- and a very simple and lovely and caring NH it is -- I still need to be available at all times. I'm her care representative. Moreover, I'm her daughter and in reality am the only person who will put their own health on the line for her safety. Obviously, it needn't, shoudn't come to that. Fact is, to a greater or lesser degree, this is the potential reality. That puts the actual meaning and significance and importance of the PWD to the carer in a truer perspective. It sn't necessarily 'healthy' but it's a truth. It's often under the radar. "Ooh, you've loads of free time now, Molly, you must be so relieved!".

I've said it before, my mum is central in my life but I didn't marry her. Your commitment is huge. Not trying to be maudlin or put a downer on progress and the fact Tim and my Mum and thousands of PWD are being well cared for in good NHs, CHs etc etc. Just honouring the ongoing pain and utter commitment involved which you so honestly and eloquently expressed.

Biggest hugs x