Just tired?

[T-val]

Mum has been bed bound since Christmas Day but has managed to eat a little better than earlier in Dec when her swallowing just stopped... then it returned. However today she is just tired and for the first time ever she did not want to get up for a wash and has not even wanted the TV on. Palliative care thought we only had weeks/short months early in December but I thought it would be the lack of swallow that caused it.

I'm not sure if she's just tired but she's sleeping most of the day now or could she be fading away?

This really is an emotional rollercoaster and the hardest thing I've ever had to deal with.

[Cbui]

Hi T-Val,

I am so sorry that you are going through this emotional rollercoaster. I too am riding a similar rollercoaster with my mom in terms of swallow going away and somewhat coming back and not knowing what is next to come with this horrible disease.

Right now my mom goes in between various states. I had posted about last week and it felt like the end was near, but then some swallow came back, lungs cleared up, some oral intake, some days very sleepy, some days not. What I am going by so far is a total picture of more days put together may be more telling than each day. Some days could be dark, but the next day not as dark, but not as bright as your heart wishes. But some light

Others in this forum have a 20/20 perspective and more hindsight they can help you with.

Take a big breath, don’t forget to take care of yourself and give your mom a big hug. Hang in there, I’m rooting for you and your family

[T-val in reply to Cbui]

Hi Cbui,

Thanks for your reply, it sounds like we are in similar positions and it's so hard. I'm not sure how many more big breaths I can take. It's my Mum's birthday tomorrow so I'll be grateful to celebrate another one with her that I didn't think we'd see and take each day as it comes now.

Big hugs to you too x

[OllieFisher1]

My Dad's condition does fluctuate. A few weeks ago (I posted on here), he practically slept for 9 days straight bar waking to eat and drink. I was hoping it would be his end, but he has since perked up and back to the way he was before that. It is frustrating, but part of the journey.

[T-val in reply to OllieFisher1]

Thanks for your reply, it's such a roller-coaster, I feel constantly sick wondering if today is the day. Today is her birthday and she's had a few visitors and some smiles but totally exhausted now and seems so frail, however, I'm so grateful we made another birthday and got to make a wish on the pink caterpillar cake (well, what else!). Her breathing is quite shallow now but I don't know if that's just complete exhaustion from the day.

[bichonbear1]

Hi, my mum has CBD and is very up and down. Some weeks very tired and barely communicative and other weeks more lucid and awake. Appetite is up and down. It’s a rollercoaster for sure and distressing and upsetting for everyone. Some weeks we think we are losing mum and the next things pick up. It plays with our emotions every day and seeing mum as she is, immobile, incontinent and with poor cognition is distressing. Keep strong.

[T-val]

It certainly seems to test us all, my emotions are all over the place so god knows how they must feel. I hate this disease. Thanks for your reply, sending hugs to you too.

[jeannette1964]

im in same boat as you all, never known such a cruel horrible illness so true like a rollercoster. our latest thing is constant crying im coping with carers help but the crying and sobbing for no reason is getting me really dow its horrible she looks so so distressed doesnt matter what you say and do she cant control it, then it stops fine then randomly starts again, dr prescribed lorazepam 0.5 up to 4 times a day to calm the agitation that goes with it, helps a bit anyone elses loved one had this prob thanks

[T-val]

Hi Jeannette, it's hard enough to see my mum lose all her independence and everything she loved to do being robbed from her with this illness but I don't think I could cope either if she was crying but have read it in the forums before. Sending big hugs your way x

[jeannette1964 in reply to T-val]

thats the hardest to cope with she cant help it maybe dr can help some days worse than others she just stops on her own dont matter what we say