Our Story
- Thread starter PatH
- Start date
Am pleased to report that it's three days since we have had a new case of Vand D although there are some residents still very poorly. Spoke to the nurse manager ,a person I really am not very comfortable with, she's on of those managers who has an answer for everything and really dosent listen to what you're saying. Anyway she said the public health would be in again this week and hopefully the outbreak is coming to an end. The restriction on visitors will be in place for another couple of weeks.
Im hoping Donal has been lucky ,he seems stable at the moment. Patx
Im hoping Donal has been lucky ,he seems stable at the moment. Patx
Thank you for sharing
Thank you for sharing your story and the video. I must say that it brought a tear to my eye, especially seeing the photo of your dear husband looking at you,there was a lot of love in his eyes, for you.
Look forward to hearing more from you.
Pauline
Thank you for sharing your story and the video. I must say that it brought a tear to my eye, especially seeing the photo of your dear husband looking at you,there was a lot of love in his eyes, for you.
Look forward to hearing more from you.
Pauline
Haven't been on this last few days due to family breavement and being with Donal. the oubreak of VandD seems to be subsiding , It appears it was norovirus. I have never heard of it before. Public health are coming back next week ,at the moment there is a big deep clean and the home has been divided into zones. The carers have also been changed so i'll be watching carefully as I have some concerns for Donal .
So far other than his daily swallowing and chest problems he has managed to avoid the virus and I so hope it continues. Patx
So far other than his daily swallowing and chest problems he has managed to avoid the virus and I so hope it continues. Patx
I have found it very difficult to come on here and give advice or ideas to others when I have been struggling over the last weeks to take my own advice. The outbreak of Vand D has now passed although the public health has not done their final inspection. A commercial company is in at the moment still doing a deep clean .
Over the years of Donal's illness we have coped with many situations. I remember when he first had a very bad chest infection due to aspiration and I was told that he may not make it ,I pleaded with the doctor to save him as I wasn't ready to lose him. As time went on and he was constantly ill ,I then had to accept that this was how it was finally going to be and decisions had to be made. There was Alzheimers, Donal and myself, I had lost Donal and Alzheimers had taken over and would eventually take him from me. I really did accept this and every situation that arose because of Alzheimers ,while I was upset I feel I was ready to cope with whatever the outcome would be. That is, of course until this outbreak of Vand D , I found it so difficult that another threat had come about. I am so angry with myself that I really lost control( after all this time). My days were completely focused on what was going to happen ,how I could prevent it, etc ,etc. When i looked at a poor vulnerable man my heart broke and I knew I couldn't fix it for him ,and I remembered the first time I pleaded with the doctor to save him. It's been a very emotional time and Im struggling to get back to where I was a few weeks ago. Patx
Over the years of Donal's illness we have coped with many situations. I remember when he first had a very bad chest infection due to aspiration and I was told that he may not make it ,I pleaded with the doctor to save him as I wasn't ready to lose him. As time went on and he was constantly ill ,I then had to accept that this was how it was finally going to be and decisions had to be made. There was Alzheimers, Donal and myself, I had lost Donal and Alzheimers had taken over and would eventually take him from me. I really did accept this and every situation that arose because of Alzheimers ,while I was upset I feel I was ready to cope with whatever the outcome would be. That is, of course until this outbreak of Vand D , I found it so difficult that another threat had come about. I am so angry with myself that I really lost control( after all this time). My days were completely focused on what was going to happen ,how I could prevent it, etc ,etc. When i looked at a poor vulnerable man my heart broke and I knew I couldn't fix it for him ,and I remembered the first time I pleaded with the doctor to save him. It's been a very emotional time and Im struggling to get back to where I was a few weeks ago. Patx
panicking is normaL
Pat, I do the same every time the flu or a virus of V&D shuts down the care home where my Mum is. She is 93, severe dementia/Alzheimers and yet I spend my waking time praying that she will not get ill and die. I think we all want it to be quick and painless and for them not to suffer.
My husband Ray who has Vascular dmentia and after six strokes many, many medical problems, has only been in his nursing home five weeks and so far no major illness has happened but I know it could and like you I will wish I could spirit him away and look after him myself. I guess for me having him there makes him seem more vulnerable.
I hope things get back to whatever is a manageable normal for you right now. Thank you for sharing your story with us.
Sue.
Pat, I do the same every time the flu or a virus of V&D shuts down the care home where my Mum is. She is 93, severe dementia/Alzheimers and yet I spend my waking time praying that she will not get ill and die. I think we all want it to be quick and painless and for them not to suffer.
My husband Ray who has Vascular dmentia and after six strokes many, many medical problems, has only been in his nursing home five weeks and so far no major illness has happened but I know it could and like you I will wish I could spirit him away and look after him myself. I guess for me having him there makes him seem more vulnerable.
I hope things get back to whatever is a manageable normal for you right now. Thank you for sharing your story with us.
Sue.
Dear Pat
I am sorry you feel you can only come to TP when you feel strong.
I do wish you could have come when you needed support yourself, even if it was just to make contact with people who care.
TP is about take as well as give, as I know only too well. Please allow TP to help you get back to where you were.
Love xx
I am sorry you feel you can only come to TP when you feel strong.
I do wish you could have come when you needed support yourself, even if it was just to make contact with people who care.
TP is about take as well as give, as I know only too well. Please allow TP to help you get back to where you were.
Love xx
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Thanks for your support and Flowerpot, so sorry you are feeling down. I dont like the person I am at the minute . Im not good a letting others see the vulnerable person I am, (the person that Alzheimers helped create). Everyone thinks Im great at coping so I really never let my guard down. I'm ok when I think everything is under control but I go to pieces (in private) when the unexpected comes up.
I'll settle again I know but at the minute I hate the way stress is affecting me.
Donal got his flu jab today , and his room is being deep cleaned tomorrow so everything personal has been removed . He is 76 on the 23rd of this month ,has had Alzheimers since he was 59, life's a *****! Pat
I'll settle again I know but at the minute I hate the way stress is affecting me.
Donal got his flu jab today , and his room is being deep cleaned tomorrow so everything personal has been removed . He is 76 on the 23rd of this month ,has had Alzheimers since he was 59, life's a *****! Pat
To correct last post Donal 77 next week ,the years are passing too quickly.
Am feeling a lot better today even though I had a problem at the home today.
I have to use face flannels under Donal's chin because he drolls and they stop under his chin being wet. When I arrived there was a very large amount of thicken juice which obviously had come out of his mouth and it indicated that whoever fed him hadn't checked that he had swallowed. I also saw that half a glass of thickened juice had been left uncovered on his bed table, something that infection control had insisted should not be done.
I asked a carer to help be move Donal to a more comfortable position and as we did another large amount of juice came out of his mouth. It was clear that Donal's swallow was badly delayed today but it also confirmed that whoever fed him just kept spooning the juice into his mouth and then left him. A very dangerous thing to do.
My temper was on overdrive ,I checked the book to see who fed him and as I walked back into Donal's room the actual ownner came down the corridor along with the carer who had supposedly fed him . She came into the room with me and after I expressed my concern about how he had been fed and the risk of aspiration, she quite calmly told me she had not been trained to feed.!! Can you imagine my reaction , I almost lost it , When she left the room I was shaking and very upset .
The owner then came in and I told him how disgusted I was that a carer who had been working downstairs and had been in the home for three years had left Donal at risk because of how she fed and had admitted she had not been trained. I also showed him how she had left the room. He gave his apologies and said he would investigate.
Anyway I stayed with Donal , creamed him with his nivea ,did his laundry but was aware that a meeting was going on with the carer ,the owner and the nurse on duty. I was then called into the office and the carer gave her apologies but admitted that she had been trained and had told me a deliberate lie.
I could see the owner was so angry and now disiplinary action is going to be taken.
The home is a good home but today proved how a carer can bring down it's reputation and as well put a residents life at risk.
I've given myself a good talking to and know that I have to stay positive. Love Patxx
Am feeling a lot better today even though I had a problem at the home today.
I have to use face flannels under Donal's chin because he drolls and they stop under his chin being wet. When I arrived there was a very large amount of thicken juice which obviously had come out of his mouth and it indicated that whoever fed him hadn't checked that he had swallowed. I also saw that half a glass of thickened juice had been left uncovered on his bed table, something that infection control had insisted should not be done.
I asked a carer to help be move Donal to a more comfortable position and as we did another large amount of juice came out of his mouth. It was clear that Donal's swallow was badly delayed today but it also confirmed that whoever fed him just kept spooning the juice into his mouth and then left him. A very dangerous thing to do.
My temper was on overdrive ,I checked the book to see who fed him and as I walked back into Donal's room the actual ownner came down the corridor along with the carer who had supposedly fed him . She came into the room with me and after I expressed my concern about how he had been fed and the risk of aspiration, she quite calmly told me she had not been trained to feed.!! Can you imagine my reaction , I almost lost it , When she left the room I was shaking and very upset .
The owner then came in and I told him how disgusted I was that a carer who had been working downstairs and had been in the home for three years had left Donal at risk because of how she fed and had admitted she had not been trained. I also showed him how she had left the room. He gave his apologies and said he would investigate.
Anyway I stayed with Donal , creamed him with his nivea ,did his laundry but was aware that a meeting was going on with the carer ,the owner and the nurse on duty. I was then called into the office and the carer gave her apologies but admitted that she had been trained and had told me a deliberate lie.
I could see the owner was so angry and now disiplinary action is going to be taken.
The home is a good home but today proved how a carer can bring down it's reputation and as well put a residents life at risk.
I've given myself a good talking to and know that I have to stay positive. Love Patxx
Donal has been struggling badly today ,he just cannot get the strength to cough up and he is being suctioned. had a word with the acting manager today and we agree that Donal's swallow is getting weaker and weaker . Few days at a time are passing where he just dosent know how to swallow. They are keeping a close eye on his already underweight. he hasnt a temp and seems comfortable although even the nurse says she's apprehensive as to how he looks. He seems very flat.
In my usual way Im stressing a bit because my daughter is away on holiday and I feel very vulnerable not having her close. So im trying to off load my concern to the forum.
The NH home today had compulsary training for all staff, Its in connection with my last post. So something positive has come out of it. All staff now have to sign to say they understand the training , don't think there will be any more lies!! Patx
In my usual way Im stressing a bit because my daughter is away on holiday and I feel very vulnerable not having her close. So im trying to off load my concern to the forum.
The NH home today had compulsary training for all staff, Its in connection with my last post. So something positive has come out of it. All staff now have to sign to say they understand the training , don't think there will be any more lies!! Patx
Pat, sorry I missed your previous post.
Well done for bringing this to the attention of the owner. It's not good enough for Donal to be treated like that, he cou;d easily have aspirated. Hopefully today's training will make sure it doesn't happen again.
Trouble is, anything like that makes you want to be there all the time, to make sure things are done properly, and that really shouldn't be necessary.
Glad you can unload here, you're doing all you can for Donal. I hope you're managing to keep your own strength up.
Love,
Well done for bringing this to the attention of the owner. It's not good enough for Donal to be treated like that, he cou;d easily have aspirated. Hopefully today's training will make sure it doesn't happen again.
Trouble is, anything like that makes you want to be there all the time, to make sure things are done properly, and that really shouldn't be necessary.
Glad you can unload here, you're doing all you can for Donal. I hope you're managing to keep your own strength up.
Love,
Thanks Hazel,
Donal's swallow not good today at all. The window of opportunity to feed him is getting less and less. This is very much down to Alzheimers and Donal, Im just worried that decisions Ive made do not come to haunt me . Its also a situation where's it's difficult to balance faith with suffering.
I'm trying to stay calmly focused and be with him as usual, I love him very much and I want him to be peaceful whatever way that is to be. Tomorrow is another day ,Patx
Donal's swallow not good today at all. The window of opportunity to feed him is getting less and less. This is very much down to Alzheimers and Donal, Im just worried that decisions Ive made do not come to haunt me . Its also a situation where's it's difficult to balance faith with suffering.
I'm trying to stay calmly focused and be with him as usual, I love him very much and I want him to be peaceful whatever way that is to be. Tomorrow is another day ,Patx
Dear Pat, sorry, not been around much .....
If you are anything like me, this disease makes you challenge any faith you ever had ..... and I still worry now (more than three years on) did I make the right decisions at the right time for mum? Pat, you do all you do out of love and do your best against the backdrop of such heartache and constant challenges. Please, believe in yourself, if nothing else.
I know too the anguish of ‘not wanting to make a fuss’ (but in my case needing to throw a complete tantrum about my mother’s care on more than one occasion which hopefully she remained blissfully unaware of) to maintain the serenity and standards around her .... it’s a tightrope .... but you are finding the strength to balance the needs to speak up where needs be ......that’s part of the loving, isn’t it?
You are stronger than you think, I am sure. And being strong doesn’t always have to mean being positive. Please don’t shackle yourself with any more worries than you already have.
Much love to you, Karen, x
If you are anything like me, this disease makes you challenge any faith you ever had ..... and I still worry now (more than three years on) did I make the right decisions at the right time for mum? Pat, you do all you do out of love and do your best against the backdrop of such heartache and constant challenges. Please, believe in yourself, if nothing else.
I know too the anguish of ‘not wanting to make a fuss’ (but in my case needing to throw a complete tantrum about my mother’s care on more than one occasion which hopefully she remained blissfully unaware of) to maintain the serenity and standards around her .... it’s a tightrope .... but you are finding the strength to balance the needs to speak up where needs be ......that’s part of the loving, isn’t it?
You are stronger than you think, I am sure. And being strong doesn’t always have to mean being positive. Please don’t shackle yourself with any more worries than you already have.
Much love to you, Karen, x
Pat, Karen's right, these decisions always haunt you. I had to make them first for my mum, then for John, and those are two places I still sheer away from. It's like a wobbly tooth - you know the best thing is to keep your tongue away from it, but.........
As Karen says, as long as you have made the decisions based on love, and for the good of the other person (as I know you have), then you just have to hang on to that and not probe the 'what ifs'.
As for faith, having been very active in the church all my life, I stopped going when it became too much for John. Now I'm dabbling my toes in the water again, but very hesitantly. My faith remains (though I don't probe that too much either), but not sure about anything else.
Stay strong, Pat. I know Donal would say you're doing everything right.
Love,
Karen and Hazel, thanks so much for your support and I accept everything you both are saying. I'm struggling time wise to log on as helping with this situation has taken over. Of course not everyone is able to be with their loved one on a daily basis ,this is the positive side of being close by. Mind you I have to be honest here and say because he is close by I feel the need to be constantly with him and so it takes over everything I do.
The swallow ! well it is still there and when he dosent respond to the routine of feeding I then try to encourage him. The window of opportunity is so unpredictable ,one minute he cannot feed and then within five mins of the carer leaving I can get him to swallow at least a little. There are days when we can't get him to swallow the med to dry up his secretions so then his lungs fill up. A vicious circle.
So a day at a time , I'm more settled in my mind but feeling physically very tired !! Sending love to all of you who are struggling with this disease. Patx
The swallow ! well it is still there and when he dosent respond to the routine of feeding I then try to encourage him. The window of opportunity is so unpredictable ,one minute he cannot feed and then within five mins of the carer leaving I can get him to swallow at least a little. There are days when we can't get him to swallow the med to dry up his secretions so then his lungs fill up. A vicious circle.
So a day at a time , I'm more settled in my mind but feeling physically very tired !! Sending love to all of you who are struggling with this disease. Patx
