We're approaching the end of the road

[kazza73]

Thanks all. I am so confused by it all. As far as I understand Vas D tends to be a series of downward steps with periods of stability along the way, steps back up are very rare. The fact is that mum has regained things which we thought were lost forever, she is still very frail and reliant on nurses for virtually everything but there has definitely been a marked improvement, how long it will last is anyone's guess. I am of course very grateful for the extra time with mum, it is something none of us ever thought we would have.

Dad is visiting tomorrow so will no doubt get an update afterwards.

Lots of love to you all
Karen xx

 

[BeckyJan]

Hello Karen:
Its good to hear from you and I totally understand your emotions having been there several times myself.

Half of us want to see the end of this torturous disease but the other part panics when the final bit seems near. The TP line 'one day at a time' seems so relevant.

You could do without an infection but I hope you and the children soon feel better.

Take care and best wishes

 

[nicoise]

Hi Karen,

What an amazing development!

My mum's dementia was the fluctuating type - sometimes it seemed like a dam blockage had cleared and suddenly she was lucid again, only re re-block over time. So that was always a bit difficult to know quite what we might find each day.

I'm sure you are in tight control of your feelings after all these months of being on red alert, and that can stop you from getting your hopes up too much about what might come next, or quite believing what has happened. Just enjoy these special moments with your mum, and don't look too far into the future for now.

 

[creativesarah]

Amazing lots of support still there, on this roller coaster journey
Luv Sarah

 

[susanne1964]

Hi Karen, have not posted on this thread before, just to say I caught up on it last night and have come on again tonight to add my support. As everyone else here I know what you are going through and wish you all the best
take care
Sue
x

 

[kazza73]

Well Dad's visit today wasn't great.

The agitation has increased significantly since last week. Mum's speech has deteriorated again and she has gripped, nipped, twisted and pulled dad's arm until it is sore
Dad said he stayed for an hour but 10 minutes would have been plenty (but having been given a lift from a friend for the 2 hour round trip he felt he had to stay for long enough to make it worthwhile) He thinks they will need to increase the meds again.

It looks as if the drastic improvement was very short lived

 

[Dazmum]

Oh Karen I am sorry to hear that, your poor dad. Thinking of you all. X

 

[eastiesgir]

So sorry to hear your news. Thinking of you and your family x

 

[kazza73]

Oh and just to add to the joy of my life at the moment...youngest daughter is still poorly, my day was started with her projectile vomiting all over the place several times before 9am! Despite lots of scrubbing my house stinks of sick! The wee man is a day behind his sister with this cold/ bug so really hope he isn't sick next.

But through it all I keep reminding myself there are people a lot worse off than me. This too will pass, tomorrow may be brighter and as well as a lot of sadnessed I am blessed with much joy in my life.

Karen xxx

 

[Izzy]

Oh Karen, I'm really sorry - about all of your news. Be strong and take care. x

 

[florence43]

Dear Karen,

I just want to say I feel for you. The little bit of "mum" must have been so precious, and I can understand what confusion you must have felt. I try to imagine that happening during the 10 days we were syringe feeding mum and watching and waiting. I'm not sure I could articulate what that would do to me...good or bad.

All I want to say is that we're all still here, for every step.

Do take care,

 

[Grannie G]

It happens so many times, what seems like a big improvement, but lasting such a short time. No wonder we are said to be on a Rollercoaster.
I`m so sorry Karen.

 

[creativesarah]

lots of support
Sarah

 

[kazza73]

Forgot to mention, on Friday I had to take our darling old black cat to the vet to be put to sleep

 

[kazza73]

My sister rang the unit today. The nurse confirmed the agitation is definitely increasing again, she said mum was slightly more settled this morning but had been very agitated at lunchtime, thumping the table and screaming because it was too noisy, she ate very little as she was so wound up. Medication is going to be adjusted again once the consultant has seen mum.
Dad is quite down about everything

 

[Grannie G]

Please tell your dad we know how he feels, Karen.

 

[piedwarbler]

Dear Karen, I'm so sorry to read your recent posts. Like your mum, mine has Vas D and she has deteriorated a lot. I've been surprised that since going on a morphine patch she actually seems more lucid at times but also more agitated. She has a pressure area but states firmly she is in no pain.
I'm sorry about your cat too. My cat is the only one who can comfort me at times. He's gorgeous. He ate rat poison the other night and has to take an antidote for weeks. I don't know what I'd do without him.
Wishing you lots of strength and sending positive vibes xx

 

[elaine n]

Sorry I've not been posting on your thread Karen, I have been reading but I run out of words sometimes. lots of love to you xxxxe

 

[kazza73]

I popped in to see mum yesterday. She is definitely deteriorating again, speech is getting worse, agitation is increasing etc. Yesterday there were times she seemed frightened but was unable to communicate why, she was reaching out for something that wasn't there. The jerking was worse yesterday as well.
There were a few golden moments though, at one point she had her eyes closed and then opened them, looked at me and said 'What a beautiful face', another time she reached for my hand and said 'You know I love you'.
At one point she was quite restless and when I asked what was wrong she looked at me in despair and said 'I need a cuddle'.

One of the nurses popped in to say hello, she's been away in Australia for a month, she said she's noticed a big change in mum while she's been away. She is only a few years younger than my mum and says seeing mum as she is has made her reevaluate her life a bit and she and her husband have put things like POA, living wills etc in place as a result.

My sister is visiting mum today. I hope she has some golden moments too.

Karen xx

 

[kazza73]

Just had a call from my sister. She had an awful visit this morning, only stayed for 15 minutes + left in tears.
She saw the consultant briefly in the hallway, he's been off for a week so hadn't seen mum but said from what he'd heard it sounds as if the brief improvement has now been followed by another downturn, he will see mum later and make a decision on any medication changes.

I hate this illness and what it is doing to my darling mum but - also hate the impact it has on all our lives. It is such a cruel, devastating disease.