Nearly done with clinics

[Jellycat]

So, today we went to our first specialist als clinic. Arrived for 4pm appointment and finished up at 8.30pm. Very impressive clinic with a prof who really knows her stuff. How I wish we'd met her earlier! Got more info today than almost all our other neuro appointments all put together.

So why nearly done? Although she didn't tell us anything I didn't in my heart know, she put it clearly, baldly and now it's out there. Zero function in all limbs. Zero speech, swallow catching up, dementia. Talking palliative care. How long? Who can say..that's in God's hands.

So though we were offered more appointments we just feel we have other things to do with the time and energy we have. Like sit in the sunshine. Like live peacefully rather than stretching every fibre to get on time to clinic. And practically such long days are borderline feasible anyway. Please friends don't think we are giving up. No, just choosing where and with whom the remaining energy is spent with. We already have a good relationship with our local hospice-seems like time to lean on them and let clinics fade into the background ...

 

[brooksea]

Hope y'all have lots of SUNSHINE in the coming days! I totally understand.

Give yourself and your mum a big hug from me!

 

[LornaDoone]

Sounds like a good plan. My pals is getting super tired of her appiontments too. We often cancel them cause it's just too much to make the trip and wait around, etc. I am totally with you guys on this one.

 

[Katie C]

No thoughts from here that you're giviing up, just making choices. And that's what this disease presents us with. And when dementia is involved the values of the choices change. Enjoy what you can, don't sweat the rest.

 

[Jellycat]

Thanks so much for the support. I appreciate it. I don't seem to have done much sleeping last night. Processing all I heard I suppose.

 

[DgtofTNfan]

If this was Face and then the Book jellycat, I would like your post 100%. Feast on the sunshine!

 

[abbas child]

I totally agree with your plan. It must be draining to think through, but your conclusion sounds correct, and you're dealing with this very gracefully. Love you, Avril. Ann

 

[Ladyinn]

Avril, I don't see you giving up -- I see you using the time together more wisely! Choices aren't always easy, I know, but I admire you for recognizing how precious your time with your mum is and choose to make it filled with sunshine.. Hugs to both of you. You are so blessed with one another.

 

[Alyoop]

Wise, wise words, Avril. There is a peace and maybe acceptance in your decision. Enjoy your mum, enjoy the peaceful times together.
Aly

 

[Jellycat]

Thanks for all your kind words of support. I am tired and my mind is still going over clinic conversation but there is also peace. Mum as you might imagine is pretty wiped and has slept a lot since getting home. Hugs to you all.

 

[joni51]

Avril I hope your mum gets rested up, and you can enjoy some days ahead...

 

[LizT]

massive hugs to you, Avril. and please, give your mum a kiss on the forehead for me.

 

[laurel]

Jellycat I'm so sorry that time is running out for your mother. You sound like such a good daughter and good person. Blessings to you and your Mum.
Laurel

 

[Al]

When I was first diagnosed I was told to save my energy for the things that were important to me. Sounds like your mom and I agree on that.

AL.

 

[Jellycat]

Al, what wise advise. We have been liberated into that way of thinking thanks to Thursday's visit. The sun is actually shining here today so once sleeping beauty awakes it'll be a good day to sit in it's warmth. Indoors mind you, not summer yet! Liz-how did you know that she likes a kiss on her forehead? Joni, Laurel thanks.