Separate names with a comma.
Discussion in 'End of life care' started by Jezzer, Jul 5, 2018.
Thank you so much. Your wonderful responses are calming me down now! xx
Every single word of this message is such a huge comfort. The bit about the rug pulled out from under our feet struck a particular chord. Thank you so much. C. xxxxx
Sending Love and Hugs @carolynp xxxxx
I have been silently lurking and reading the posts about you and your Mum recently.
This latest, when your Mum asked 'Am I going funny?' really hit home as it's exactly the phrase that my Mum uses.
Not only are these people who we love so very much, having every last little bit of dignity stripped away - it eats me up inside that their minds are in constant turmoil and worry. Early on in my Mum's 'journey' I naively hoped that we may come to the point where all her worries and anxieties would be overtaken by the disease - sadly this has not happened. Right from the outset my Mum has constantly questioned if she was 'going funny' and her GP and I for medical reasons, decided it was best not to disclose. She obviously knew then deep down, and still does even now, that something is not right and is beyond her control, so I have been changing the subject and 'working around it' for years.
All the time that things could be explained to Mum with some success, I used her Consultant's great explanation, that as we age our faculties fail. Some lose hearing, others mobility or in Mum's case it was her memory that was showing signs of age. This did the trick at the time, even though Mum would inevitably forget and ask again.
I thought Mum may be relieved of this worry as her mental capacity decreased - sadly, it hasn't.
My hope is that like with everything else, their memory completely wipes out the question and anxiety of 'going funny' until the thought rises to the surface again.
You wouldn't wish this on your worst enemy would you?
Love to you and your Mum
Bless you for sharing this with me. I really do appreciate it. No indeed, you wouldn't wish it on your worst enemy. This is the first time mum has asked this question. I am so sorry it's a constant query with your dear mum; that's awfully tough on you. I really don't think this fear is constantly with your mum. When you say it "eats you up"that's how I felt yesterday. Has her greatest fear, i.e. going the way of her sister, lodged in her mind and I spent the rest of yesterday fretting about it. I'm with her now and she's fast on. My whispered"I love you mum" brought a smile and her face is rested and relaxed. This disease is truly awful isnt it Tony? Mum, like yours Im sure, was fastidious about her personal hygiene, kept a clean and tidy home and would absolutely hate having to have everything done for her. Your mum has a wonderful, caring son. There are dementia residents here whom I'm told have families who never visit and I feel so sad for them. They didn't ask for this and to then be abandoned by family is beyond me. Thanks again for your post. Nice to "chat" and if you feel like getting in touch again, it would be lovely to hear from you. Take care J xxx
Thanks for your lovely reply.
Just for your info - I'm a daughter, not a son! I'm rubbish at thinking up usernames, and 'Toony Oony' seemed as good an any. It was what Mum and Dad called me when I was just a bump, back in those dim and distant days when nobody knew the gender of their baby until it arrived. So for several months I was Toony Oony. When I had my daughter we were not as inventive, and the poor child was known as 'The Bump' until she was born .
I'm so pleased your Mum was relaxed and peaceful today. I'll be in again to see mine tomorrow ... currently every visit seems to herald a new problem. Thank goodness for Classic FM - I listen to it on the way in to get me energised and ready for the day's issues, and tune in again on my drive home to calm and (if necessary) console.
Take care, hope the coming days with your Mum are good ones, and I'll pop by again sometime.
Oh heck, so sorry for referring to you as a "son"!!! I think I saw Tony instead of Toony. Apologies! I'm really sorry each day seems to bring new problems. This horrid disease is one of the cruellest things I've ever encountered. I wonder if it's on the increase or that people talk about it more now? Back in the 80's my cousin had a breakdown and was admitted to a psych ward. I vividly remember a group of elderly ladies sitting like zombies, doped up to the eyeballs. I bet they all had some form of dementia and that was how they dealt with them at that time. We are more enlightened now but need to find a cure or at least effective treatment very soon. I too use music driving to and from my visits. Needless to say, I have quite a variety!! I loved the quote on the other thread, so much so Ive made a note of it. It really resonated with me.
I will be thinking of your mum and, of course, you too. Thanks for your good wishes. Speak again hopefully. Take good care xxxx
That is my dad exactly @Bunpoots he say's he must be 'going barmy' no idea at all.
Good morning my friends
A quicker-than-I-would-have-wished visit this morning as I am at the hairdressers shortly. Mum very sleepy but I'm told she managed a half bowl of porridge for breakfast. She's taking lots of fluids which is good. I whispered in her ear about England's result last night which produced the following unexpected response -"Typical"!! No, no mum they've been great I replied. Sadly she's not witnessed our rejuvenated young team and will no doubt be thinking of the England team of old. Still, her response made me smile. She's still with us for sure. Maybe not always but right now, I'll take the mum I still have with gratitude. Sending love and hugs to all xxxx
So glad to hear your mum still has a comment on the England team, whatever time she’s got in mind
Feeling pretty sad myself today. The dream is over - now what’s going to distract me from day to day life? Will probably turn to a bit of Wimbledon but that’s finished soon too....
Anyway need to pull myself together as off to see Mum after lunch.
Hope you enjoy the hairdressers.
In hairdressers now Lindy (still) Good job you can't see me as I look like the Creature From The Black Lagoon. Having colour on to hide the grey! I think we're all a bit flat after the footie. I love Wimbledon normally but that's not the same this year. Let me know how visit goes. Love to you and mum xxxxx
OOO what colour are you having, Jan? Loved your mum's response to the football!! Gxxx
My colour as it used to naturally be Geraldine - I guess you'd call it strawberry blond. Disguises the grey! Yep, good old mum!!!! xxxxx
Oh a strawberry blonde, how lovely, well done you. Your mum is endlessly full of surprises!Gxxx
She is indeed!!!! xxxxx
One thing I’ve never given up on is highlights Being blonde (not grey as I really am now) seems to be part of my personality..... well done @Jezzer on the strawberry blonde
Quite a good visit with Mum today. She was in her room and shouting, but mostly stopped while I was there. Managed to read some poetry to her (haven’t done this for months and I think we both enjoyed it). It’s the rhythm, familiarity and emotional connection that seems to work, I think. I tend to stick to our old favourites....Sea Fever by John Masefield, Daffodils, that sort of thing.....ones she may have learnt by heart at school nearly ninety years ago!!! She can still recite the odd few words, usually the ‘punchlines’
Also looked at a few photos but I tend to avoid these as she either doesn’t recognise her family, or worse, wonders why they haven’t seen her lately.....
so very pleased you had a good visit Lindy. How lovely that you read poetry to your dear mum. It clearly brings her comfort and enjoyment. Take care. Love and hugs. Night night xxx
Had docs appointment this morning but the important issues first. Poor mum has lost her speech again. I was greeted by that gorgeous smile, as were staff popping in and out but, bless her, she was unable to communicate verbally. Strange how her speech comes and goes. So it was a visit of holding hands, kisses, cuddles. There is honestly a palpable feeling of love between us. I'm certain she understands that I know she's struggling and that it's OK to just be together with her drifting in and out of sleep. And that smile appears when her eyes are closed so I hope she's having happy memories or perhaps my dad is around giving her support and telling those silly jokes he used to! He had a tremendous sense of humour. Who knows? There appears to be no distress and I'm focussing on that. Boy, is she thirsty though! Coffee disappeared very quickly as did two tumblers of juice. Good that she's taking on fluids so well at the moment.
Well I have a bit of a health worry at the moment. It's a molehill as opposed to a mountain but here goes. I was diagnosed with an ectopic heartbeat years ago and told nothing serious, just have to live with which I have (er, obviously or I wouldn't be doing this! ). However, since Xmas the missed beats etc have gotten worse and have been daily and ongoing accompanied by dizziness and a throbbing head. Also I've been having very brief blackouts. No warning - I just suddenly hit the deck, take a few seconds to get myself together and I'm OKOK again. Well yesterday it happened when Bess and I were headed to the park. She must have thought Auntie Jan was playing a new game i thought, but when we got to the park she would not leave my side & wasnt interested in running after and fetching her ball. So we sat on the grass and had a "bit of love" as I call it. Those eyes! She's amazing! I digress and am prattling again. While doc was listening to my heart, it duly obliged and performed its circus trick again. Good really as doc could clearly hear it. So blood tests first thing Monday and he's referring me for an ambulatory ecg. My fear about inheriting dad's motor neurone disease can be dismissed as he said it would have presented itself long before now (dad was 42 when we lost him). So there we are. Just have to wait and see.
Weather hotting up. Wishing you all a peaceful weekend although I know so many of you are having a hellish time. I send my love, accompanied by many hugs, to you all and to your loved ones who are so unfairly suffering with this cruel, sadistic disease. Jan x
Sorry to hear about your health worry. Hope they can things sorted out for you.
Thanks Izzy x