And so it begins.....

[Kikki21]

I know just what you mean. When I visit mum and she is unresponsive I look closely to see if she is breathing and to be honest I hope at last she won't be. Terrible I know but there is only one end to this and when you are completely disconnected from life there is absolutely no quality to this existence. Hope all is calm for your mum and you xxx

Things are calm & she seems settled but she is incredibly thirsty. Maybe it is the body’s last rally for survival but the dr obviously says she is still poorly & what was troubling her before is still troubling her. I am giving her sips of tea & yoghurt & then let her rest for a while ( and me too!) xxx

 

[Kikki21]

My mind is still blown by all of this today. It is so much to deal with & I know from this forum that it can happen. It also seems that mentally my mum is more with it too. Your head seeks answers because it seems too good to be true. Yesterday, sleeping & unresponsive. Today, wanting to drink & eat. She must be ravenous not having eaten for days but she is more thirsty.
It is a complete head f word, no other word for it. Xx

 

[Kikki21]

Having read a lot of posts on here, the rally seems quite common. It is so heartbreaking though. You go in & everytime, you think this is going to be the final time. Every see you soon you think will be the last time.

I am having a few hrs off before coming in again but my phone is on & I feel completely worn out by it all.

 

[Moose1966]

No your not. This terrible disease is so challenging. When visiting I regularly sit beside mum and cry. This is the most distressing illness I have ever seen anyone suffer from and we have taken care of my mother and father in law with lung cancer, brain tumour and heart failure and doesn't even compare to the length and severity of suffering with dementia.

I completely agree with you my father died within three months of diagnosis of a brain tumour he was 53 , mum with this disease has been EOL since August and is now bedridden , doubly incontinent and not eating just sipping fluid . I sit with her in CH for hours just talking / singing and well just being there for her ( and me ) I miss her so . It’s such a cruel end that is inflicted on our loved ones

 

[Moose1966]

Having read a lot of posts on here, the rally seems quite common. It is so heartbreaking though. You go in & everytime, you think this is going to be the final time. Every see you soon you think will be the last time.

I am having a few hrs off before coming in again but my phone is on & I feel completely worn out by it all.

Thinking of you ❤️

 

[YorkshireLass]

I completely agree with you my father died within three months of diagnosis of a brain tumour he was 53 , mum with this disease has been EOL since August and is now bedridden , doubly incontinent and not eating just sipping fluid . I sit with her in CH for hours just talking / singing and well just being there for her ( and me ) I miss her so . It’s such a cruel end that is inflicted on our loved ones

"Just being there" is all we can give and we do it day after day, week after week, month after month and year after year. I want to drag folks (politicians and those in the medical profession who can change this end to life) into every care home in the country and insist they go every single day and stay for at least 2 hours watching, listening and trying to comfort those with dementia. I want them to see first hand how we allow humans to suffer for so long when there cannot be any recovery from this existence. Our pets have enviable treatment when suffering. I understand as do so many lovely people on here xxx

 

[Kikki21]

Thinking of you ❤️

Thank you. And big hugs for you & your mum. We are just heading back to the hospital now. We have done our errands & I bought some Rescue Remedy to try & calm myself down a bit. Feel like taking the whole bottle. Xx

 

[Kikki21]

"Just being there" is all we can give and we do it day after day, week after week, month after month and year after year. I want to drag folks (politicians and those in the medical profession who can change this end to life) into every care home in the country and insist they go every single day and stay for at least 2 hours watching, listening and trying to comfort those with dementia. I want them to see first hand how we allow humans to suffer for so long when there cannot be any recovery from this existence. Our pets have enviable treatment when suffering. I understand as do so many lovely people on here xxx

I did say to my cousin G yesterday that if one of my cats was suffering like this then I would be completely heartbroken but I would do the kindest thing for my cat. I have had to do this for the first cat I owned & it was awful.
People that do not have experience of dementia & that is direct experience will not know just how bad it gets you xxx

 

[YorkshireLass]

Thank you. And big hugs for you & your mum. We are just heading back to the hospital now. We have done our errands & I bought some Rescue Remedy to try & calm myself down a bit. Feel like taking the whole bottle. Xx

@Kikki21 a word of advice regards Rescue Remedy from my physiotherapist when I was going into the MRI scanner for the third time in a week for an hour at a time and on the third time was going to have my head in a brace. "Don't bother reading the label and putting drops on your tongue, swig it from the bottle". I took her advice (but I had also eaten some Quiet Life tablets!) and I coped without having a meltdown. Hope it works for you xxx

 

[YorkshireLass]

I did say to my cousin G yesterday that if one of my cats was suffering like this then I would be completely heartbroken but I would do the kindest thing for my cat. I have had to do this for the first cat I owned & it was awful.
People that do not have experience of dementia & that is direct experience will not know just how bad it gets you xxx

So true. We can all offer sympathy and think we understand when offering comfort to our friends and colleagues who have a loved one with dementia but until you are in that position you really have no idea how utterly dreadful it is not only for the person but equally for those who love them. xxxx

 

[Moose1966]

So true. We can all offer sympathy and think we understand when offering comfort to our friends and colleagues who have a loved one with dementia but until you are in that position you really have no idea how utterly dreadful it is not only for the person but equally for those who love them. xxxx

Hugs and prayers for you both , I’m not visiting tonight going to have a glass of wine and try and relax . I know mum will be asleep so I have to stop worrying and churning up my feelings x

 

[Kikki21]

@YorkshireLass i did fill the dropper up full to be fair! The ward is quite noisy as the poor lady next to my mum is just breathing so loudly that when my mum speaks in a whisper, I can’t actually hear her & have to ask her to repeat herself.
My mum’s pallor seems ok this evening & although she is a little cool to touch then she looks better than she did yesterday.... of course we know that this could change very suddenly. She has had quite a busy day today so she has fallen asleep a bit now & she said she had a bit of pain so she has had a bit of morphine just now xx

 

[Kikki21]

Hugs and prayers for you both , I’m not visiting tonight going to have a glass of wine and try and relax . I know mum will be asleep so I have to stop worrying and churning up my feelings x

Enjoy the wine! I can’t drink wine or Prosecco anymore as I have developed an allergy to sulphites. I can drink spirits so had to revert back to vodka, whisky or gin. I also had to remind my fiancé not to drink too much of an evening at the moment as we may get a phone call..... x

 

[Kikki21]

So we are back home & my fiancé is cooking dinner & I am sat on the sofa with the cats ( who need feeding) & trying to process today’s events.
I honestly thought that my mum would not be responsive today so I can’t tell you how shocking that was for me & my poor head is going are the drs wrong?
Feeding my mum like a child feels so weird as well but I am glad to do that for her. I just want her to be comfortable in whatever time she has left with us xx

 

[Moose1966]

Enjoy the wine! I can’t drink wine or Prosecco anymore as I have developed an allergy to sulphites. I can drink spirits so had to revert back to vodka, whisky or gin. I also had to remind my fiancé not to drink too much of an evening at the moment as we may get a phone call..... x

If I’m honest wine doesn’t agree with me at all !! Sometimes I jus take a chance and have a glass , followed by lots of water before I sleep . So lovely to have found you on this forum and stay positive.

 

[Moose1966]

If I’m honest wine doesn’t agree with me at all !! Sometimes I jus take a chance and have a glass , followed by lots of water before I sleep . So lovely to have found you on this forum and stay positive.

Yes agree I find it very strange feeding mum . I want to treat her with respect and as my mum , but when your trying to get custard in mouth before it drips I revert back to the “ open wide one more spoon “ the things we do

 

[Kikki21]

Yes agree I find it very strange feeding mum . I want to treat her with respect and as my mum , but when your trying to get custard in mouth before it drips I revert back to the “ open wide one more spoon “ the things we do

I never got the chance to have kids so I must admit it is a bit alien to me, the concept of trying to feed someone & get them to drink too. I was conscious not to overload anything as need her to swallow the right way & not infect her lungs even more.... but she had a whole 2 beakers of tea plus quite a lot of yoghurt & some ice cream. It’s not much but much more than she had for a week. No wonder she was so hungry & thirsty.
I really want her to rally & fight but I also want her to be released from the grip of dementia x

 

[YorkshireLass]

@Moose1966 and @Kikki21 thank goodness for the forum. It helps so much not to feel alone and to have the support of folks who actually understand Hugs to you both xxxx

 

[Kikki21]

@Moose1966 and @Kikki21 thank goodness for the forum. It helps so much not to feel alone and to have the support of folks who actually understand Hugs to you both xxxx

Hugs right back at you @YorkshireLass - I am sat with my fiancé telling him how things have been & were with my mum in the past & in tears xxxx

 

[lis66]

Sending ((((hugs )))) to you kikki21 at this utterly heartbreaking time my wee mum is 4ft ten and a half lol and has had this horrundeous illness for six years ,Im dreading when it reaches the final stage and pray something else takes her ,we would not let animals suffer in this way xx