This is what just happened in only the last ten minutes or how I get heart pounding, stomach dropping, tension in neck!
I am trying to sort through important paperwork. I realize DH needs clothes laid out . STOP Run upstairs but he had Ialready dressed.. TWO different striped pullovers and unzipped jeans. Fix clothes situation calmly. Then notice XL Grey jkt in wash basket. He is a M. This not his! He doesn't know where it came from but is not disturbed by it. Someplace he took a wrong jacket. Probably Day Care ... Ok so now I go onto bathroom A minute later, he's yelling my name and he has set alarm off in house an doesn't know code anymore. I run out half dressed .
It's only been ten minutes!,,,And everyone says"he looks so good"!
Yes, I know your feeling. My DH had on three prs of pants and refused to remove any. He refuses to chg undergarments, depends, so I keep scissors handy.
Sure know the feeling of what can happen in 10 minutes---Paul put jeans on backwards and was trying to get hands in pockets- I turn them around ,better he says. went on to brush his teeth(I already had toothpaste on sink )he puts fix-o-dent on brush and said this tooth paste must be outdated does not work!!! Clean that up and get teeth in mouth,on to shoes. I sit them in front of him the right way but nope he puts them on the wrong feet anyway. I asked him to put them on the right way and get his usual answer"these are the only feet I have". Ready for coat now I hand it to him go to get mine and come back to find he has it on backwards and upside down. Yes all this in a few minutes can REALLY wear you down.. But as you say others look at him and say "Oh he is doing so well!"
Yes they do look good, because we think for them and they don't have the stress of decision making! Sometimes when people say my DH looks good I really want to say, "Well, that's because he's very well cared for -- BY ME!" So let's all pat ourselves on the back for a job very well done.
Oh, how I remember those days! We would go somewhere and our "friends" would say how nice he looked - and I always made sure he did - but no one ever said that to me! I got a lot of "you look really tired", "how are things" ....etc...but no offers of help! I still hate this disease for you who are still struggling.
Oh, Vickie, we are on the other side of the abyss now. People, I would give anything to take 3 days to cut his hair again...to have to feed him special ice cream to get his meds in him...to get wet clothes off him and fight to clean him up...to just see his darling face and kiss his cheek and have him smile at me in that impish way. Enjoy what you have left. Separate it. All the bad is the disease. All the good is your LO. But to get to do that would be very selfish on my part because he is at peace now...no more struggles or frustration...whole again...waiting for me.
Linda, I sometimes wonder if the pills and patches that are suppose to slow down this disease are the right thing to do. If the dh goes right back to where they were with the disease when the rx is stopped, is it better to allow them to go ahead and reach that peace instead of prolonging all the frustration associated with arriving at that peaceful point?
When I'm ask about my dh, I usually say I'm Blessed that he's as well as he is because I know he will get a lot worse. He can still swallow! With his Living Will and knowing his wishes, there want be a feeding tube. You are unselfish to realize you don't want him going through all that agony.
I don't think the pills or patches slow down the degeneration. I think they help keep the brain functioning better with its more limited resources, and we then see a steeper loss once the brain looses enough mass. So I think it is helping with symptoms for a period of time but not really changing the trajectory of the disease.
Correct Paul - IF they work (which is less than 50%) they allow them to stay cognitively functioning while the disease continues to do its damage
I asked the neurologist last fall about stopping the galanatime and she said no. My husband is loosing more ground - having problems finding words mostly and wants to go walking 2-3 times a day.