AN AGONIZING PLATEAU

[carolinesimmons]

My husband Bill is at a really bad (from my point of view) place in this disease as he can do nothing for himself except hold a cup. He has help for everything else - standing, going to the bathroom, eating (he is on a JPEG tube for 12 hrs./day). ...

[carolinesimmons]

This rest of this post was deleted somehow. Please do not pay attention to it if the rest of it is not restored.

Caroline

[jillannf6]

i a m sorry bout you husband and that your pos twas deleted!

it ha happened do me a few times and i blame t j]e w more sensitive mous e hta t we now have

still smiling tho

lol jill;

[nomansland]

dear caroline...this illness is like no other except for als,my wife has been on a total feeding tube for over two years and can,t even see anything as her neck is so stiff that she looks straight up at all times without any motor functions left....I know how you feel ,you know caroline the strength has to come so you can cope,as I am alone all the time my only friend is the higher power,when as an airforce pilot I felt something was wrong I would tell God if I go down you are coming with me,today we still have that type of conversation and I gurantee you it,s not always holy but I do get the required strength to continue,short of that I don,t know where one turns in this roller coaster ride...love to you both Rollie

[carolinesimmons in reply to nomansland]

Well, I lost my first reply, Rollie. But I was just thanking you for your words of support. You are so right that what comes next won't be good. But, we WILL manage.

Caroline

[Prayingforacure in reply to nomansland]

Thank you Rollie for this posting, God provides us HIS strength to care for our loved one.

[Robin20]

My dad is the same,he's been on the peg for one week,and last night was taken in hospital with pneumonia.hes so fed up.with they would just let him have the antibiotics at home,home and family is all that's left.good luck Caroline,just try and make some happy moments x

[Greenbee in reply to Robin20]

Hospice provides antibiotics in Texas.

[nomansland]

robin,we were the same,you need an MD with a head on his sholders,not a book in his hand,we use to be in often for pneumonia avelox plus clindamycin daily will make the trip much,much,smoother Rollie

[jimandsharynp]

Caroline, You have my sympathy. I'm in a similar place. My wife cannot feed herself, walk even a few steps, hold a cup, get to the potty, dress, shower, brush teeth, etc. etc. However, I don't mind doing it all for her. We've been together 24 years and aren't about to let anything get us down. One thing about a plateau is that when it ends you know it won't be good. Fatigue is major for my wife and she can stand to help with relocation from bed to wheelchair to lift chair and back again if not fatigued. When fatigued she can barely stand to help and I have to wonder if being Hoyer lifted place to place is far off. Hang in there and enjoy the plateau while you can.

Jimbo

[carolinesimmons in reply to jimandsharynp]

Jimbo, how fortunate you both are to be so much in love! And to accept that you will stay close for the long haul. When I think about it, we (you and I) really have the "easy" part. Thank you for your reply.

Caroline

[Prayingforacure in reply to jimandsharynp]

Bless you Jimbo, my husband needs my help in all too, we will be married 58 years in may. God provides us the strength we need to continue taking care of our love one.

[Peter3]

My husband too is in a similar situation. He can stand with a great deal of support and that is about all he can do.

Very recently he has lost the ability to feed himself finger foods, he hasn't used cutlery for many months now. Feeding him takes a long time with a much choking all the time. He has refused a PEG, he says he doesn't want to be kept alive artificially and is prepared to accept the choking even though at times it is distressing. I feed him a fairly high fat content diet and this is preventing weight loss at the moment.

I feel I lost my husband 7 years ago when his personality started to change and now, apart from his physical appearance he has gone.

Well its time to start cooking so back to getting on with life.

Love to you all

Peter3.