Well Wishes to JustMike

a reply to: Serdgiam
Wow... Thank you for the first-hand (or first-back) input. Much appreciated!

Also, please check your PMs. You should have two messages from me.

a reply to: JustMike

Looks like things are being sorted out and eventually you can look back at this nightmare and it will all be over. I have been praying for you and Dada and for the best possible outcome. Much love to you both and gentle hugs!

a reply to: Night Star
Hi Raine,

I wrote a long reply, all carefully edited and corrected, then hit a wrong key and it just disappeared and I wound up on another website that's in my bookmarks. One about time travel and so forth.

Okay okay, I know it's better to write longer posts off the site in ege a word document first then copy and paste, but I couldn't be bothered this time.

And now? Well as you know, trying to rewrite a post so it comes out the same simply doesn't work. So this time I'll just say yes, it looks like we're getting there slowly. Still lots of real-life things I need to worry about, like getting our car in for its change-over to winter tires, which is booked in for Nov 5th and I guess is now on the "impossible to do" list.

Lots of other things are going on that list as well. Like getting our bathroom finished so we can install the shower and new boiler before winter. Now, it's just not going to happen. That is a real downer, to be honest.

Dada's condition is worsening. She's getting more psychotic episodes now due to her dementia. Delusions and also hallucination, sometimes combined. She's very near the point where she will need to go into permanent residential care. I'm just hoping I can get well soon enough so I can have her back home again and look after her there, at least for a little longer.

Just a little longer...

a reply to: JustMike

Mike, thank you for keeping us posted, it is a little disheartening with Dada's situation, but at least she is in some way cared for if not adequately at the moment. I agree with your approach to the dreams, we process our fears in our dreams, kind of like sorting out the junk so we aren't too overwhelmed emotionally in RL.

Now you stay put, no dancing or shenanigans.

a reply to: JustMike

I just read this, again thank you. You candor is refreshing to me. I for one do not tolerate sugar coating.

The two of you have prepared for these last years for so long and you have been so meticulous , now this; and to be immobilized as you see her deteriorate must be heart wrenching.
Unload here, any where, where this a kind ear. So you can face what ever may come. You have invisible warriors behind you, we are here.

a reply to: JustMike

Thanks for the update Mike.

It sounds like you are in good hands and Dada is nor being forgotten.

Hopefully they get the job soon so you can begin your recovery.

My thoughts and best wishes ...

a reply to: JustMike

You are most welcome

My own surgery took a while to get to, due to sheer medical incompetence. As you know, time is not the best thing with these issues, and it took several years for someone to actually look at my imaging. That neurosurgeon literally said "oh sh!t." Comforting, right?

Either way, the surgery truly did wonders. Some lingering aches here and there, but that's not even remotely a big deal (as I'm sure you know).

Now, if they could fix the issues in the thoracic, I'd be all set!

If you go through the surgery, and they use newer technology, I truly feel you will be amazed at how quick the healing process is. It was pretty much outpatient!

Depending on your own stuff, it might not be a bad idea to try sleeping "sitting up" in the interim and through recovery. There are a lot of different angles to try there. I use a system of one wedge pillow and four normal pillows. Some try the typical pillow between the knees too, but I don't know too many that that's helped.

Regardless, treat your sleep like the treasure it is and everything else will fall into place. Its easily overlooked..

a reply to: Serdgiam
Years of waiting for an expert assessment is appalling. Glad to heaer that when they finally got round to it, it worked out pretty well.

I use the pillow-between-the-knees trick and it generally helps me. But every day (or night) is different and sometimes nothing really helps much. But yes, I have a nice pile of pillows to help me sleep half sitting up.

a reply to: JustMike

Dearest Mike, My heart breaks for both you and Dada. One of my best friend's Mother went through dementia or Alzheimer's. I know how difficult and heart wrenching this is for you.

You are an absolute Angel with your deep love and devotion to your precious wife. You have and are doing everything you possibly can. I know it makes it harder because you yourself need looking after.

It is very difficult for a care giver to be the one who needs care themselves. We want to be so strong and just be there like we've always been, but we are human. You will need time to heal from your operation. You are wounded emotionally having been through so much with Dada and need love and support. That is one thing we can give to you, as much as you need, for as long as you need it.

We will surround you with our love. Miles cannot separate you from your ATS family from all over the world.

Warm, gentle hug for you and Dada.

a reply to: Night Star
Thank you, Raine.

I didn't publicly say anything about this last night, but we got released from hospital yesterday (ie Tuesday).

Long story short, I am firmly booked in for surgery in the Ceske Budejovice (CB) hospital on Nov 25. They have the best neurosurgical team in the region, so the neurosurgeons in Jindrichuv Hradech hospital (JH -- where we were until today) consulted with them and set things up. CB is the first port of call for all the more complex cases, so the docs in JH decided it was better for me to have my surgery there. They often cooperate with CB in cases like this.

Nov 25 is simply the earliest date they have available at CB for scheduled surgery. They always have to keep some times open for the non-scheduled but urgent cases, like trauma or sudden, major deteriorations etc.

So, rather than have me sit around in hospital for three weeks, the docs let me go home. However I am now under some pretty strict conditions -- AKA "doctors' orders". I must take things very easy, not lift anything heavy, and call an ambulance if I get any symptoms of further serious deterioration. Meanwhile I'll continue my regular visits to my own doc for daily infusions, then in the week before I go into hospital he will do all the pre-op prep stuff with me.

Meanwhile I have to care for Dada, at least until she goes into the temporary care center on Nov 12. She is now pretty far gone; the docs describe her as "severely demented". She rarely responds to anything said to her, has to be monitored non-stop, and is frankly an awful lot of work mentally and physically to manage.

The docs and nurses in JH were very sympathetic when they saw just how bad she is. They said it must be hard to deal with and yeah, they were right: by about 7 in the evening yesterday I was exhausted from caring for her since we got home cca 4 hours earlier. (This was after a pretty long day in the hospital, though.)

That's one of the reasons I didn't say much last night. I was feeling pretty down and negative, so preferred not to go into details.

However I need to point out that any major changes to her daily routine always unsettle her a lot. This is normal for people with her condition. Today she is a little better than she was yesterday. Several times today she even responded directly to what I said to her. She's also on a new medication to help calm her down a bit and yes, it helps.

Somehow I have to manage while I "take things very easy". However now that her new medication is starting to have its effects my work load is a little lower and that helps us both.

As for me, I'm managing. I had my infusion this morning and got through the day pretty well. Nov 25 will come along soon enough, and hopefully the surgery will go well and then, once I've recovered and she can come home, I can do a better job of caring for her.

a reply to: JustMike

Just ((((hugs)))

a reply to: JustMike

I am glad that Dada was given a medication that helps. I know how exhausting this must be for you looking after yourself and Dada. Accept any help that is offered to you by friends, neighbors or whoever. None of us likes asking for or accepting help when we have always done things for ourselves and others, but it's ok to ask and people genuinely want to do something for you and Dada. Love is a very powerful force.

It's ok to be vulnerable, we all are at one time or another. It doesn't mean we are weak, it means we are human.


Try to rest. I will be here checking in every day.

a reply to: Night Star


Thank You Mike, I agree with Night and couldn't have worded it better.

Bundles of WIS hugs.

a reply to: JustMike

I'm happy to hear that they have given you meds to calm your wife. I think that will help quite a lot. There's nothing wrong with a sleeping pill.

You said that in the weekend you can't get your own meds (infusion?) so maybe you can ask your Doc for something for the weekend for yourself. If memory serves, they have opiate plasters. (Band-aids?) I think my Dad had those at one point along with a sleeping pill to keep him under at night (cancer). (There's nothing worse than waking up in the night feeling scared and alone, which is why he got the sleeping pills while in the hospital visits.)

I know for a fact that there are slow-release opiate (morphine?) pills that work for at least 24 hours. It might be helpful to ask if you can get those in the times you can't get your regular meds in the weekend. I'm just trying to think with you.

My heart and prayers are with you. You are a strong man, Mike. I know you might not always feel like you are - but you are. God bless you and Dada.

a reply to: AccessDenied
Thank you, AD. It's so good to have contact with you again.

a reply to: LightSpeedDriver
Hi Light,

my doc tried me on fentanyl patches but they just weren't very effective, so we moved on to other methods. But your recollections are right: the patches can even last for 72 hours.

I have opiate tablets I take every day. One is a slow release oxycodone tab, which I normally take every 12 hours, the other is a faster working morphine sulphate, which I take on an as-needed basis. On the weekends I up the dose of the slow-release from 12 hr intervals to eight and slightly increase the number of other tabs as well, along with using 1,000 mg doses of paracetamol 3 times a day. All that combined gets me through the weekends.

I don't take any sleeping tabs specifically, because I need to be able to wake up fairly easily in case Dada needs help, or if there is simply some emergency like eg a fire.

Anyway, only 24 days til my surgery, thank goodness. After that I hopefully won't need any of the above medication.

Thank you also to Raine, WIS and angeldoll for your messsages. They all help me and I'm grateful.

Thank You, one drop at a time.

Hi Mike. Hope you are keeping yourself occupied while you play the (painful) waiting game. I’m sorry to hear about Dada. You both are in my daily thoughts and prayers. Sending you love and strength.