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Réponse de Melinda
13 avr. 2014, 10 h 40

Thanks Tracie and Cathie! Yes I have tried the protien powers in his juices and he absolutely hated it. He did not like the texture and spit it out immediately. But he does drink boost with extra protien...but thanks for the idea about the puddings. I am going to pick some up today!!
Aside to Tracie...Stan suggested we try mango in a smoothie..thought of you right away lol!
But we never did try it.  Stan is still in such denial about his condition. (though I do wonder if that is being chipped away)...and he firmly denies being in any pain..(that I am starting to wonder about too).  Cathie, unfortuately the radiation is supposed to start this Wednesday. No time to build him up. I offen wonder if the Doctors offer this stuff to make the patient feel better. I wish Stan would not go through with it and I am hoping once he starts he will stop it.
He is so weak and radiation is no "walk in the park"! I will be with him for the first two days, but after that he will be on his own at the Lodge..and I don't think he will do well...he is not one to take care of himself.
Yes Tracie, it was really nice to get away yesterday...but when I got home I felt incrediably guilty that I had left him alone...I am starting to feel I need to be around more.  We will see how it plays out...I can start working part time and maybe I am there now...we will see.
Buddy is supposed to be done today with the final coat of paint.  So I am having a huge party to celebrate.  Just kidding!! Wink   My house need to be in order one way or the other.
Well I can hear the coughing in the basement so he made it through another night! Will bring him down a coffee and hopefully today will be a good one. Thanks again for talking to me. You are a lifeline!! 
 
Réponse de marstin
13 avr. 2014, 18 h 47

Hi Melinda,

Len couldn't stand the texture of the protein powders either. The puddings I think were okay. Lol! Mango eh? Can you see me shudder?

Len used to always tell me that doctor's 'practice' medicine. I think they try whatever is possible to see if it will work. It's probably the same with the radiation. If Stan thinks that it will work then if nothing else, it helps him to continue to believe that he will be cured. Maybe it's not such a bad thing and brings him peace of mind.

I am so happy to hear that the final coat of paint is going on today. The added stress of that is definitely not something that you need. Maybe then the 'buddy' will take off and leave you alone. Of course with Stan going to the lodge I guess you won't have to put up with this guy anyway.

I can imagine that you felt guilty yesterday when you returned home and found that Stan was not doing well. Still though, you probably needed the diversion for a few hours so that you can handle this next round. You are important too. It's hard to watch our big, strong men become so weak and broken as this disease advances.

I guess this week will give you some idea of where things are at with Stan. Maybe they will decide that he should be in the hospital and being watched over instead of at the Lodge where there is no medical staff. I guess only time will tell.

He's still drinking coffee? Anything that goes into him and stays there is a good thing. Yes, even the beer with it's calories. It may be what keeps him going.

I hope today is a good one for the two of you and that you can bounce his buddy out the door so that you can spend quality time with Stan without the distractions.

Hugs,
Tracie
 
Réponse de marstin
15 avr. 2014, 14 h 49

Hi Melinda,

I just wanted to touch base with you and let you know that I will be thinking of you when Stan begins his radiation treatments tomorrow. This has been such a tough road for you but I must say that you are doing a great job caring for him. I think we all have to find what works for us so that we can retain some sense of sanity while dealing with everything that gets thrown our way.

I hope that the 'buddy' is finished his work and out of your way. At least you will have that burden off of your back while Stan is at the Lodge. If you have the opportunity please drop a line and let us know how things are going.

Hugs,
Tracie
 
18 avr. 2014, 22 h 56

Hi Melinda
I am thinking of you - you must be home now and Stan must be having his chemo. I hope you have some bright flowers in your house to cheer you up over Easter.
Cathy
 
Réponse de Melinda
19 avr. 2014, 14 h 06

Hello ladies! Things are going okay here. Got back from Ottawa on Thursday. Really glad I spent the night with him at the Lodge. He loves the place and chatting with all the different people. It's a change of scenery for him and all the people there are in the same boat. They take care of each other. The cancer society will pick him up next week on Tuesday morning and bring him back on Friday.  I am so looking forward to having the time to myself!! Buddy is finally finishing up the odds and ends today and then he will be gone. My daughter and granddaughter spent the day and overnight...we had such a good visit. So I am power cleaning today because of the three dogs (two are hers, one is mine).
So Stan is feeling positive about this treatment and perhaps its a good feeling to know they have not given up completely on him. The radiation will stop the bleeding for awhile so it will give him more time. I am not feeling as stressed either...which is such a good thing!! :)
Stan has been making the effort to eat more....and I agree the beer is probably keeping him alive (fluid and sugar)...Though this morning he is having alot of face swelling from the radiation...oh well, today is a good day...tomorrow who knows!! Enjoy one day at the time.
Happy Easter eveyone!! Melinda
 
Réponse de marstin
19 avr. 2014, 15 h 18

Hi Melinda,

It's funny how we don't realize that living with this illness causes us to, in a sense, hold our breath. It's only when you can take some deep breaths and take a break from things that we see how tightly wound that we are. Knowing that Stan is well looked after and in the company of people who actually understand what he is going through must be a relief for both of you. For him to be able to share some of his thoughts with others in the same boat must bring him some peace of mind and for you to be able to place his care in the hands of professionals and enjoy some family time is so good for your soul.

At least this will allow you to rest up a bit before the next round of caregiving. I'm so happy for you that the buddy will be done so that you can have some time for self care and relaxation. Are you gazing out at the spring thaw yet and dreaming of your kayak and lazy days of drifting along? Maybe for now you can run a big tub of hot water and bubble bath and just lay back and relax. You can get up in the morning and not be listening for the coughing or smelling the cigarettes and stale beer. Now you can recharge your batteries.

I wish for you a beautiful, serene weekend where you can curl up with a book and do whatever it is that you want to do.

Hugs,
Tracie
 
19 avr. 2014, 16 h 21

What good news to hear about Stan talking with other people and even laughing! What a relief actually! I hold dear images of my mother laughing at dinner with other AlHeimers sufferers. Take some pics of those moments for him to have and for you to have when he is gone. Thank you for sharing some good news abou Stan. I am so glad you chose to accompany him...if you hadnt you wouldnt have seen those happy moments...You got him there by keeping him alive at home and should be proud and take comfort in the good you are doing. I am proud of Stan for choosing to let people in ehen he's at the Lodge. Maybe his choosing treatment is a way of choosing life and being related to others. If this his his way then I can celebrate that. Enjoy your respite time. Cathy
 
Réponse de marstin
25 avr. 2014, 23 h 41

Hi Melinda,

I've been thinking about you all week and wondering how things are going. Please drop a line when you are able to.

Hugs,
Tracie
 
Réponse de Melinda
30 avr. 2014, 13 h 11

Hello! Stan has two more radiation treatments and is not doing well. He has massive swelling on his face and can only get nourishment with a straw. He will be seeing the radiation Doctor this morning...my concern with him now is infection. His neck is a mass of raw skin and has alot of green slime on it...poor Stan. He is staying at the Lodge right now and I will be picking him up tomorrow to bring him home. He also has an appointment with the chemo Doctor..why I don't know, he was told "no more chemo".  He says he still has no pain...hoping that does not change.  His voice is very weak...I will be glad to get him home. Have a feeling I need to be with him more. Feeling very weepy and sad today.
 
Réponse de marstin
30 avr. 2014, 15 h 18

Hi Melinda,

It's so sad how much a person has to go through to try to survive when they have cancer. Having to witness all of this is like living a nightmare and just tears at your heart. There is so little that you can do except to be there. I'm surprised that Stan is feeling no pain but it's definitely a good thing. You would think that with his neck being such a mess that he would feel something. Is he on any pain medication? Any antibiotics at least? It sounds like his neck is infected but I would guess that if they thought it was that they would have him on major antibiotics. I know that Len had one infection after the other. I guess the immune system becomes so weak that it can't fight off much of anything.

Len saw the chemo doctor one last time also, even though the hospital told him there was nothing else that could be done. I guess they hand it over to the professionals to see if there is a glimmer of hope or something else that could be tried. At least they do everything in their power to save a person.

Have you been getting lots of rest? I hope you've been able to take some time for self care. Once Stan gets home you will probably want to stay close and hopefully they will step up the home care. Did you ever get the chance to find out about getting him a hospital bed? I know that here, they offered a bed, wheelchair, shower seat etc. Anything that makes it easier for the patient and their caregiver. The bed just makes it easier to adjust the pressure on different parts of the body so that if they become bedridden, they don't end up with bedsores.

You have had to witness so much and this is extremely painful. I wish that there was something I could say or do to help you through this. Just know that I am here listening and sending you a huge amount of love to help you get through this next part.


Hugs,
Tracie


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