APPROACHING END WITH MUM : EVERY DAY IS DIFFERENT

[Jezzer]

Oh my darling girl. I wish I could be with you. A hand-holding visit is good, holding hands is so wonderful. I am so sorry you are feeling ill, not surprising. With you my darling, with you. all love, Geraldinexxxx

Thank you Geraldine. Just a bad day which I know we all experience. Wishing you, and all of us visitors, as good a day as it's possible to have. Love to all xx

 

[Jezzer]

Dear @Jezzer, sorry to hear you felt so unwell. I know you like to visit your Mum every day, but would it be possible for you to perhaps only visit every other day for a while? I know how hard this might be for you, but the stress is so overwhelming for you that it can only be contributing to your heart problems at the moment. I can say this because I have been having palpitations myself for some weeks now and had some kind of weird missed beat thing in a shop a few weeks ago. I thought I was going to faint in the aisle, but it passed off quite quickly and I got home. Much as I want to see my Mum, I get palpitations as soon as I get up when I know I am visiting that day. In fact, I am going this morning and my heart is already pounding. The anxiety is a sort of nameless dread, probably after living on a knife edge from one emergency to another for so many years caring for her at home. Then those emergencies continued in the nursing home. I limited myself to every 3 days visiting my Mum, right from the beginning as I knew I would be going back to work and didn't want her to get used to seeing me everyday, only for me to have to stop suddenly. I also knew that in order to recover any health of my own, I had to let go a small amount. I know your circumstances are different, but the stress is the same and the anxiety too, which we bury in order to put a smile on for the person we love. Do you think for a little while you could limit your visiting at least until they have sorted out your own health problem? I completely understand that it's anxiety if we do visit and anxiety if we don't. It's just a slightly lesser anxiety to not visit as I know for myself. Thinking of you and sending a cyber hug. xx

Good morning my friend. I really appreciate your kind and thoughtful post. I'm sorry you are experiencing palpitations and giddiness. Frightening isn't it? I was diagnosed with an ectopic heartbeat years ago and I've learned to live with it. However this is different and the blackouts really concern me. About visiting; before he went to work, my brother pleaded with me not to go today I said I'de think about it (but with every intention of going) However since I've got up I don't feel so well so, reluctantly, I've decided not to visit. I should have asked the doc about driving too. God forbid I feel faint at the wheel. I could be responsible for an accident and I would never forgive myself. I'll ring later to check on mum. I don't feel happy about not going but I need to be realistic. I'll see how I feel tomorrow - my blood test results should be back today. Thank you again. Sending Love and Hugs J xxxxx

 

[Jezzer]

I'm so glad you have come to the decision not to go. The sad truth is your dear Mum is probably not aware enough to know when/whether you are visiting or not, all the time. Not only that, but if she only knew, I am certain that she would not want you to risk harming yourself by trying to visit and would be horrified to think that you are putting yourself at risk. The driving part occurred to me also when you first posted about blacking out. You absolutely must look after yourself for the time being sweetie. In the absence of anyone else to look after us, this is what we have to do. It is the right decision and I know I can say this out loud because of the situation with my own Mum, even though upsetting to hear, even if something happened with your Mum whilst you were not there, it is still right not to visit until your health is sorted and you would still be doing the right thing. We can not change what is happening to them and sadly, our visits will not alter the unalterable course they are on. As I put on my own thread a few days ago, your Mum is as safe as she can be for the time being and now it is you who is not. The focus must shift to you. It's going to be another hot one today, so hope you can keep cool and manage to rest your body and mind xx

You are right. Mum would be dreadfully upset if she knew what was going on so I am glad - if that's the right word - that she's not. Have recorded some programmes I've not got around to watching so maybe I'll stay cool and be a couch potato today! I know it sounds silly but I needed someone to give me "permission" to stay home today so Thank You again. What would I do without TP and chums like you? Please take care of yourself too, bless you xxxx

 

[Lindy50]

Good morning Jan @Jezzer
Sorry to hear you're not feeling good and I second everything @Carmar so wisely and warmly says.
Take care of yourself Jan. I hope you get some rest today.
Good luck with the blood results and stay cool X
Love
Lindy xx

 

[Jezzer]

Good morning Jan @Jezzer
Sorry to hear you're not feeling good and I second everything @Carmar so wisely and warmly says.
Take care of yourself Jan. I hope you get some rest today.
Good luck with the blood results and stay cool X
Love
Lindy xx

Ah Thank you Lindy. Feels very strange not getting ready to go out. I do appreciate all you lovely people! Please look after yourselves too. Love and Hugs Jan xxxx

 

[Scouts girl]

Sending hugs and thoughts to you too Jan. I can appreciate how difficult visits to the care Home can be. I visited mum nearly every day for a year she was there. The manager and Carers kept saying I should not visit so often as it was so upsetting for me each time I went to see her but I knew I would be so anxious if I did not go. I think in my thoughts I felt that if I went every day to see her she would not forget me, which she never did up until the end. It does play havoc with your stress levels though doesn’t it? However, your health is the most important thing to concentrate on now as I used to think that if I became ill mum would not have many visits as the family were all working and my brother lived 100 miles away. Away, my sweetie, please take care of yourself and get as much rest as you can. The home will ring you if needs be. Good luck with your results today and enjoy being a ‘couch potato’ even if just for a day. Lots of virtual hugs to you xxx

 

[Toony Oony]

Hi @Jezzer
Hope you are 'chilling' a bit today. Thought I would just pop by, say hello and send a virtual hug.
Oh yuk poor you and poor @Carmar - I can really relate to the heart issues. About 3 years ago I had ridiculous palpitations and missed beats. Turns out I had atrial fibrillation and my heart was fibrillating over 23% of the time. I was having huge issues with Mum at the time and I was told to try and keep my days calm and not get over anxious about anything. Huh some hope! I bet there is a correlation to intense anxiety and these sort of medical problems - someone should do some research. The whole thing was scary at the time but I had surgery to freeze part of my heart (so I'm even more of a cold-hearted 'you know what' now!) and thankfully it proved successful.
So glad you are getting things checked - you imagine all sorts of things - but the best thing is to confront it head on and get it dealt with. Good luck with the ambulatory ECG. Is it 24 hrs or 24/7? I had to do both and the 24/7 one was hilarious. I am allergic to adhesives, so all the sticky pads itched and left weals all over me that I kept having to scratch. I had loads of events that week and had to choose my clothes carefully to cover the wires and control box, so there I was in baggy stuff surreptitiously scratching when I thought no one was looking. To crown it all, Mum had a cataract op, and I stayed at her place overnight. It was boiling hot and I had to wear the biggest passion killer nightdress ever to cover up all the gadgetry, so Mum didn't see and start to worry.
Like you, I also run around like one of those blue-bottomed insects(!) visiting Mum and reorganising everything just to get to see her. She has been telling people for the last 3 years that I never visit, cannot remember when I have been and if during a visit I pop to the en suite in her room, she is surprised when I come out as she's forgotten I was there. I sometimes think I could miss the odd visit and she'd be none the wiser .......... but I would know! Better to do it all now - then if I happen to be poorly, as you are at the moment, I can take care of myself and take a bit of time out then.

I'm off to see my Mum later. Hope you have a lovely calm day. It's cloudy here in SW London and I am praying for rain for my straw-like lawn!

Take care X

 

[Jezzer]

Sending hugs and thoughts to you too Jan. I can appreciate how difficult visits to the care Home can be. I visited mum nearly every day for a year she was there. The manager and Carers kept saying I should not visit so often as it was so upsetting for me each time I went to see her but I knew I would be so anxious if I did not go. I think in my thoughts I felt that if I went every day to see her she would not forget me, which she never did up until the end. It does play havoc with your stress levels though doesn’t it? However, your health is the most important thing to concentrate on now as I used to think that if I became ill mum would not have many visits as the family were all working and my brother lived 100 miles away. Away, my sweetie, please take care of yourself and get as much rest as you can. The home will ring you if needs be. Good luck with your results today and enjoy being a ‘couch potato’ even if just for a day. Lots of virtual hugs to you xxx

Oh bless you, lovely and Thank You. Just waiting for my hospital appointment to arrive so hopefully we can get this sorted and I can move on. Watching old episodes of ER (yep it's sad I know) but a young George Clooney - wow. Not helping my heart though! Thanks again for thinking about me. It means so much. Huge Hugs winging their way to you. Love Jan xxxx

 

[Jezzer]

Hi @Jezzer
Hope you are 'chilling' a bit today. Thought I would just pop by, say hello and send a virtual hug.
Oh yuk poor you and poor @Carmar - I can really relate to the heart issues. About 3 years ago I had ridiculous palpitations and missed beats. Turns out I had atrial fibrillation and my heart was fibrillating over 23% of the time. I was having huge issues with Mum at the time and I was told to try and keep my days calm and not get over anxious about anything. Huh some hope! I bet there is a correlation to intense anxiety and these sort of medical problems - someone should do some research. The whole thing was scary at the time but I had surgery to freeze part of my heart (so I'm even more of a cold-hearted 'you know what' now!) and thankfully it proved successful.
So glad you are getting things checked - you imagine all sorts of things - but the best thing is to confront it head on and get it dealt with. Good luck with the ambulatory ECG. Is it 24 hrs or 24/7? I had to do both and the 24/7 one was hilarious. I am allergic to adhesives, so all the sticky pads itched and left weals all over me that I kept having to scratch. I had loads of events that week and had to choose my clothes carefully to cover the wires and control box, so there I was in baggy stuff surreptitiously scratching when I thought no one was looking. To crown it all, Mum had a cataract op, and I stayed at her place overnight. It was boiling hot and I had to wear the biggest passion killer nightdress ever to cover up all the gadgetry, so Mum didn't see and start to worry.
Like you, I also run around like one of those blue-bottomed insects(!) visiting Mum and reorganising everything just to get to see her. She has been telling people for the last 3 years that I never visit, cannot remember when I have been and if during a visit I pop to the en suite in her room, she is surprised when I come out as she's forgotten I was there. I sometimes think I could miss the odd visit and she'd be none the wiser .......... but I would know! Better to do it all now - then if I happen to be poorly, as you are at the moment, I can take care of myself and take a bit of time out then.

I'm off to see my Mum later. Hope you have a lovely calm day. It's cloudy here in SW London and I am praying for rain for my straw-like lawn!

Take care X

Hey Toony! Great to hear from you and so sorry about your own heart problems. May I ask, were you having blackouts too? Im not sure if I'll be having 24 hrs or 24/7 ecg. I recall wearing one of those beauties years ago. Aren't they lovely and oh so comfortable (I don't think). My late partner chose to sleep on the sofa as he said I reminded him of a Borg from Star Trek! Charming! Oh yep. Those horrid weals too. As the song goes "It's all coming back to me"! I have wondered if it's AF but I am trying not to think about it too much until I have had all the tests. So glad they got you well. Thank you again and take carexxxxx. George awaits!

 

[Lindy50]

Oh bless you, lovely and Thank You. Just waiting for my hospital appointment to arrive so hopefully we can get this sorted and I can move on. Watching old episodes of ER (yep it's sad I know) but a young George Clooney - wow. Not helping my heart though! Thanks again for thinking about me. It means so much. Huge Hugs winging their way to you. Love Jan xxxx

Ooh I think I have watched every episode of ER they ever made ! Loved George aka the gorgeous Dr Ross of course, but also the brainy Dr Greene (I wept buckets when he was ill) and the flawed but lovely Carter - remember Greene saying when he walked out of the ER for the last time ‘set the tone, Carter’!!! Ooh I loved it....as you can tell lol Enjoy and relax x
Lindy xx

 

[Jezzer]

Ooh I think I have watched every episode of ER they ever made ! Loved George aka the gorgeous Dr Ross of course, but also the brainy Dr Green (I wept buckets when he was ill) and the flawed but lovely Carter (remember Green saying when he walked out of the ER for the last time ‘set the tone, Carter’!!! Ooh I loved it....as you can tell lol Enjoy and relax x
Lindy xx

Me too Lindy!! I DO remember the lovely Dr Greene saying that to Carter! It was groundbreaking at the time wasn't it and still stands up today. Thoroughly enjoying it. Hope you are as OK as possible xxxx

 

[Jezzer]

LOL. Indeed I am! Apart from going to the loo, making cups of tea and a lovely little visit from Bess and her owner who is such a good friend. Bess proceeded to almost lick me to death and just sat gazing at me. Ide like to think it was pure love but more likely she was hoping for more treats! She's a total sweetie. And when they'd gone I fell asleep for an hour which is not like me. I feel weary but relaxed. It is still so humid which is draining. I think I needed this today. Rang CH & mum OK but sleeping 90% of the time which I expected to hear. Thank you for checking in on me. Much appreciated. I've posted a little message on your Thread. Take care, Love Jan xxx

 

[Kikki21]

Oh @Jezzer Jan you need to take it easy! I don’t visit my mum every day. It is 2 or 3 times a week Business permitting but we live 5 mins drive away if there are emergencies. One of the reasons why we moved! Xxxx

 

[Jezzer]

Oh @Jezzer Jan you need to take it easy! I don’t visit my mum every day. It is 2 or 3 times a week Business permitting but we live 5 mins drive away if there are emergencies. One of the reasons why we moved! Xxxx

Thanks Monika. Xxx

 

[YorkshireLass]

I'm so glad you have come to the decision not to go. The sad truth is your dear Mum is probably not aware enough to know when/whether you are visiting or not, all the time. Not only that, but if she only knew, I am certain that she would not want you to risk harming yourself by trying to visit and would be horrified to think that you are putting yourself at risk. The driving part occurred to me also when you first posted about blacking out. You absolutely must look after yourself for the time being sweetie. In the absence of anyone else to look after us, this is what we have to do. It is the right decision and I know I can say this out loud because of the situation with my own Mum, even though upsetting to hear, even if something happened with your Mum whilst you were not there, it is still right not to visit until your health is sorted and you would still be doing the right thing. We can not change what is happening to them and sadly, our visits will not alter the unalterable course they are on. As I put on my own thread a few days ago, your Mum is as safe as she can be for the time being and now it is you who is not. The focus must shift to you. It's going to be another hot one today, so hope you can keep cool and manage to rest your body and mind xx

Such wise words Carmar, thank you. I sometimes forget that I can't alter the course of the disease. As a full time carer when my mum was at home and having responsibility for absolutely everything for ages and ages it's a difficult one to accept I've dealt with and changed as much as is humanly possible, So many years trying to keep mum "normal" and in the early days managing to do that. Now the disease has taken over! Sending a hug to you all and hoping @Jezzer you've had a good day xxxx

 

[Jezzer]

Such wise words Carmar, thank you. I sometimes forget that I can't alter the course of the disease. As a full time carer when my mum was at home and having responsibility for absolutely everything for ages and ages it's a difficult one to accept I've dealt with and changed as much as is humanly possible, So many years trying to keep mum "normal" and in the early days managing to do that. Now the disease has taken over! Sending a hug to you all and hoping @Jezzer you've had a good day xxxx

Thank you so much. I've had a restful day and I do think it's been good for me. Looking forward to seeing mum tomorrow xxx

 

[kindred]

Such wise words Carmar, thank you. I sometimes forget that I can't alter the course of the disease. As a full time carer when my mum was at home and having responsibility for absolutely everything for ages and ages it's a difficult one to accept I've dealt with and changed as much as is humanly possible, So many years trying to keep mum "normal" and in the early days managing to do that. Now the disease has taken over! Sending a hug to you all and hoping @Jezzer you've had a good day xxxx

checking in my darling girl, rest please. Oh what you said, bless you abous so many years trying to keep precious mum normal, I know, my love, I know. More anon sweetheart. all love, Geraldinexxxx

 

[Jezzer]

Morning folks!
I think my "day off" yesterday helped. Slept like a baby last night, despite the heat, and no dizziness this morning. THANK YOU from the bottom of my (irregular(!!)) heart for all the lovely messages received throughout the day. Can't tell you how they boosted me. It's all the more appreciated because each and every message came from someone who is trying to cope with their own pain due to having a loved one with Dementia and also from those who have been bereaved because of this cruel illness. Your selflessness is amazing, so kind and very humbling. Well, looking forward to seeing my darling little mum today. Wonder how she'll be. I'm told she slept mostly yesterday so that seems the norm right now. Wishing you all as good a day as possible (is there such a thing as a "good" day with Dementia?), and, once again, Thank You for your friendship and support. (Oh by the way blood results hadn't come back yesterday so hopefully today). With much love and immense gratitude xxxxxx

 

[Jezzer]

@YorkshireLass,
I know exactly what you mean about that responsibility. Dementia must be one of the few terminal illnesses where the NHS has virtually no input and we are left as often inexperienced, amateur carers to try to understand, manage and cope alone. It is very hard to accept that we can not save the person we love. When my Mum went in to hospital a year and a half ago with delirium, I had been managing completely alone for nearly two years without carers or respite. It transpired that a heart attack had triggered the delirium and I never expected her to come out alive. But she did and we carried on alone with additional physical problems for my dear Mum. I remember a nurse from the GP's surgery coming out to visit, one of the only 3 visits from the GP sirgery that we had in the 3 years Mum was at home. When I told her that I couldn't understand how Mum's extremely frail body and mind had survived the heart attack and that by rights she should be dead, the nurse said "Perhaps she is staying for you?". (Mum and I have been very close all our lives). I said I thought not, because a few years ago, when Mum and I were talking and she could still understand, I made her promise faithfully to me that if she got the chance to go home as we call it (die), that she would take it and never, ever, stay here longer than is necessary for me. I told her that no matter what, I would be aright. She made that promise and I hold on to that now as she gets more and more frail. This must seem a strange conversation to some for us to have, but Mum and I have always shared the same beliefs in life after death and so to me, discussing death is not the taboo subject it is to many. The beliefs don't take away the emotional pain but the finality is not there as to me, death is moving on to another form of life. Mum has survived another gruesome year and a half since then but I hold fast to the thought that her time is not up, or she would have gone. I do hope that talking like this does not further upset any of you reading, including you @Jezzer, as this is your thread. If anything, it is my wish to bring comfort. Hold tight to your knowledge dear @YorkshireLass that you have given your all and more to your Mum. You have lived and continue to live your love for her. That is a wonderful thing to have done in a life. x

Morning @Carmar I have always believed in life after death so I am not in the least upset by what you've said; in fact I welcome it. My belief comes not merely from the wish to see my dad and my partner again but from the spiritual experiences I have had throughout my life. (there is a new Thread in the Tea Room about Spirituality for anyone interested). I know Dad is waiting for mum, (after 52 years apart) and that when she joins him, she will be free of this disease just as dad became free of his. @YorkshireLass, I send my love and hope you can take comfort from @Carmar 's lovely post. Xxxx

 

[Jezzer]

@Jezzer, I am so glad you are feeling more rested. If you find that today brings a return of your symptoms, then you must rest again for a day or two more. Your Mum slept most of the day and did not miss your visit, as much as you missed her I know and I am sure she would wish this for you. So good that you slept like a baby too. x

Thanks so much @Carmar. Yes I realise I've got to be realistic and sensible. Mum would say the same if she could. Xxx