We have been fortunate to have the widows and widowers let us know when and how their spouses died. And, several have been before the "last stage" (Stage 7 - d and e). I do not recall reading (it may be my mind forgetting) about the horrendous muscle shut down that they go through. My husband is now in that stage. His head is always leaning toward his right side (he has had several mini-strokes and TIAs over the last three years), and he has had difficulty holding a fork or spoon for a while now. He has been shuffling his feet for over a year. He hasn't been able to talk for years.

Within the past month:

He keeps his head down and his eyes almost closed, even when awake (which comes and goes).
His brain can not communicate with his hand and arm to bring the food to his mouth. Occasionally the connection will reconnect, and he'll be able to do it. If you place a full spoon of food in his mouth, he can get the spoon and pull it out and put it in the bowl and stop...he can't fill it and lift it. He can take one bite of a sandwich, sometimes bring a grape, etc. to his mouth, but not a second time. He will be as still as a statue. (He will sit in a chair until you say you are going to help him up and count to 3 and pull him up) Be ready for him to sit right back down, because his legs do not always get the message that those muscles are supposed to be alert and tighten. It is similar to a puppet on strings and you let one of the leg strings go. He will go down if you do not catch him or lower him quickly back to the bed or chair. Once up, and he knows both legs are responding, he can wobble with you holding both arms between the bed/chair/tub.

To watch this, and to watch his hands begin to draw up (so I keep his toothbrush and new toy in his hands because they vibrate and that seems to ease that muscle tightness that tries to take hold) is SO HARD.

There are no words to describe my feelings while watching this slow deterioration of my husband. I know his stubborness and I know he is fighting to keep on eating, walking and sitting (and trying to help pull his pants up which takes longer than if you did it for him alone). He is losing the battle. I don't know if it will take a week, a month, or six months before the AD wins, but in the meantime, I'm making his last days as pleasant as possible.

If others have things to add - or others who can tell us more, please do so.

I realize that most of you reading here have spouses at stages 5 and 6 and are at the hair pulling stage and have spouses who can talk and get into trouble. This discussion is not for you yet, and hopefully not at all.

Love to all,
Mary

Mary, I know very well what you are referring to....I watched my husband over a period of about a month become unable to walk, talk, feed himself and sit upright. It was at that point that he became bedridden...I truly believed that he would not live very long....I couldn't imagine that someone could survive in that state...well, he lasted for five years in that condition.

It became what was normal....he lived at home in a bedroom and became part of the fabric of our lives. People were amazed that I continued to maintain a life, socialized, entertained, traveled and kept up a life of my own.....In other words, I took care of his needs but also my own. As hard as the deterioration was to watch, he was through fighting at that point and life became easier because I felt like we had fought the battle, lost the war, but were now living in peace.

I am sorry you are having to experience this....I wish all our loved ones departed before the end stage........

Your attitude and zest for life will serve you well......

Mary i am so sorry its coming to this. i can sympathize with you one on one. I saw personally last sat when you visited how debilitated DH has become. but within his weakness he does have a zest to keep on living and fighting. otherwise he couldnt have made the trips with you. as with you my DH has also begun showing loss of muscle and walking is a chore even for 2 of us holding him up. and like you eating finger foods seems to come and go and then out of the blue like on sat's visit he eats icecream by himself. its a box of chocolate and we never know what we will get each day. while not easy i know we will continue to be the AD warriors we have worked so hard to become. we started as privates and are now in the ranks of 5* Generals. its been a long and hard fought battle and we already know the outcome of the grand 'finale' seige- but are making it damn hard for the enemy to gain that last feat. and yes we do pray that before they become final end stages another lesser fight will take them first. hugs, i know you are a dedicated wife and caregiver and although the battles are nearly ended the real victory over love and caring is yours.
hugs and understanding from your friend always.
divvi

Mary and Divvi,

It must be very difficult to see your husbands struggling as they are. Your care for them has been nothing short of heroic, and your attitudes towards life are inspiring. ((((Hugs))))Love you.

Janet

Mary--thank you for starting this thread. I sit here with tears in my eyes reading what you and others are going through with your loved ones and although I know it is in my future, I can't wrap my brain around it yet--it seems surreal. Those of you whose husbands have survived until the later parts of stage 7--can you tell if your LO is suffering?

Sandi--I have a question--was your husband on hospice for the entire 5 years that he was bedridden? I know that it can be recertified after a period of time elapses, but I am curious.

once they get to end stages hospice care sees to it that there is no physical sufferings. they ask every week if there is any signs of distress or pain. they do physical manipulations to see if that can provoke a sign of pain. that said, mentally i am not so sure. i will always be convinced there are moments of lucidity even in end stage and especially at deaths door. my DH tears up at times and says thank you or you are good to me out of the blue and i am sure its one of those moments. we can never know for sure but in my opinion they have some awareness at chosen times. the good thing is its not very often as i would not want DH to be subjected to that distress if it makes him sad.
divvi

Marilyn, in answer to your question regarding hospice...my husband was certified for hospice in October of 2003 and continued until January of 2005...then he was released from hospice as he was not getting any worse....that is when I brought him back home and cared for him here. In March of 2008 I suspected he had pneumonia and called hospice in....they certified him and he was under their care until he died on March 16 of that year. He was in no pain that I could tell, but he was on a continuous morphine patch for the last years of his life.....

Marilyn, after he was de-certified in 2005 and there was no significant decline for those three years I didn't ask about having hospice back on board. First of all, they did nothing that I couldn't handle myself....I hired help to bathe him and the rest of the stuff I took care of. Hospice is wonderful for end of life care, but my husband was just existing....he was very healthy except for the AD......I didn't need a bath aide three times a week nor an RN....why charge the taxpayers for something unnecessary at that point.