Are we nearing the end? It is hard to tell. There are good days, when he is awake and responsive and seems to enjoy life. And there are days when he sleeps and doesn't eat and sleeps some more. These days seems to happen more often than the good days. And I watch....
He is weak. Some days it is too much to make the trip down the hallway to the bathroom. Some days it is too hard on him to change his clothes. There have been times he doesn't want to brush his teeth and he doesn't have enough strength to let me do it for him. When he does want to walk down the hall we use the walker. Many times he can make it back with help. But more and more the trip back to his chair takes place in the wheelchair. He is having increasing bouts of what I call 'stutter' steps. The Parkinson's that causes his feet to freeze and he just can't move them. But there are days that he wants to get out of the house. The cabin fever has set in. And I treasure those days. But, unfortunately, they wear him out and then he has 'bad' days while he recovers.
Sometimes when I look into his eyes, he doesn't seem to be there. He looks back but it is as if he doesn't know who I am. This doesn't happen very often. But there are times. I watch him at night while he is sleeping. Or while he is staring at the ceiling. Is he lost in thought? Or does he see things that I cannot see? He mumbles to himself. Or to those I cannot see. He never, ever talked in his sleep before. And I watch....
There are changes in his skin. It is very dry and very flaky. I brush away skin cells each time I am near him. At times his skin color is grey and he gets cold and clammy. And then, slowly, the pink color returns and the temperature goes back to just being cool. He is often cold. He wears his flannel pajama pants with a sweatshirt over a tee shirt. And socks. And always covered with three blankets. Sometimes more. Sometimes he wants my quilt. He likes my quilt. He says it smells like me. This makes me smile.
He is at times confused. What day is this? What is the year? When is Justin coming (and Justin has just left), where are the kids? Is this the Parkinson's dementia? The stroke? Lack of oxygen to the brain? He always knows people when they are here. And he knows who we are talking about. I think. But there are times he looks around the house and has a look that says, 'where am I?' Those are not the good days.
He has no appetite. I try to entice him with foods that he used to love. His tastes have changed. Recently I wanted to fix him a poached egg for breakfast (he used to eat 5 eggs a week, usually poached) and he replies, "I don't care much for eggs", then tomorrow he will ask for an egg. We let him decide what he wants to eat. We let him decide when he wants to eat. This is hard. It is natural for want to feed someone. It is the ultimate offer of comfort. I am happy when he eats a quarter of a cup of something. He used to have a big appetite. He has slowed on drinking. Maybe a bottle of water a day. And always a Pepsi. He didn't used to be a big soda drinker. He likes his Pepsi now.
He sleeps a lot. Not always on my schedule. Mostly on his. A lot during the day. A little during the night. Long periods at a time. Or little short naps. But it is usually peaceful sleep. He is not restless. He is not in pain. His breathing is shallow with little gasps at the end. Sometimes. And sometimes it is regular and deep. Less often is it regular. But sometimes.
There is little that he can do for himself. I help him with his toilet needs. I help him brush his teeth. I shave him. I change his clothes. I walk with him. I raise his head while in his recliner. He cannot adjust the recliner any longer. I help him with food and fluid.
Is he dying? I don't know. Crazy, huh? I am a nurse. Can't I tell? In the hospital it was usually sudden. Or we just found them. In the nursing home I was only there 8 hours of the day and I couldn't just sit and watch. And I had 30 residents to watch. But I wonder. And I watch.....
He is weak. Some days it is too much to make the trip down the hallway to the bathroom. Some days it is too hard on him to change his clothes. There have been times he doesn't want to brush his teeth and he doesn't have enough strength to let me do it for him. When he does want to walk down the hall we use the walker. Many times he can make it back with help. But more and more the trip back to his chair takes place in the wheelchair. He is having increasing bouts of what I call 'stutter' steps. The Parkinson's that causes his feet to freeze and he just can't move them. But there are days that he wants to get out of the house. The cabin fever has set in. And I treasure those days. But, unfortunately, they wear him out and then he has 'bad' days while he recovers.
Sometimes when I look into his eyes, he doesn't seem to be there. He looks back but it is as if he doesn't know who I am. This doesn't happen very often. But there are times. I watch him at night while he is sleeping. Or while he is staring at the ceiling. Is he lost in thought? Or does he see things that I cannot see? He mumbles to himself. Or to those I cannot see. He never, ever talked in his sleep before. And I watch....
There are changes in his skin. It is very dry and very flaky. I brush away skin cells each time I am near him. At times his skin color is grey and he gets cold and clammy. And then, slowly, the pink color returns and the temperature goes back to just being cool. He is often cold. He wears his flannel pajama pants with a sweatshirt over a tee shirt. And socks. And always covered with three blankets. Sometimes more. Sometimes he wants my quilt. He likes my quilt. He says it smells like me. This makes me smile.
He is at times confused. What day is this? What is the year? When is Justin coming (and Justin has just left), where are the kids? Is this the Parkinson's dementia? The stroke? Lack of oxygen to the brain? He always knows people when they are here. And he knows who we are talking about. I think. But there are times he looks around the house and has a look that says, 'where am I?' Those are not the good days.
He has no appetite. I try to entice him with foods that he used to love. His tastes have changed. Recently I wanted to fix him a poached egg for breakfast (he used to eat 5 eggs a week, usually poached) and he replies, "I don't care much for eggs", then tomorrow he will ask for an egg. We let him decide what he wants to eat. We let him decide when he wants to eat. This is hard. It is natural for want to feed someone. It is the ultimate offer of comfort. I am happy when he eats a quarter of a cup of something. He used to have a big appetite. He has slowed on drinking. Maybe a bottle of water a day. And always a Pepsi. He didn't used to be a big soda drinker. He likes his Pepsi now.
He sleeps a lot. Not always on my schedule. Mostly on his. A lot during the day. A little during the night. Long periods at a time. Or little short naps. But it is usually peaceful sleep. He is not restless. He is not in pain. His breathing is shallow with little gasps at the end. Sometimes. And sometimes it is regular and deep. Less often is it regular. But sometimes.
There is little that he can do for himself. I help him with his toilet needs. I help him brush his teeth. I shave him. I change his clothes. I walk with him. I raise his head while in his recliner. He cannot adjust the recliner any longer. I help him with food and fluid.
Is he dying? I don't know. Crazy, huh? I am a nurse. Can't I tell? In the hospital it was usually sudden. Or we just found them. In the nursing home I was only there 8 hours of the day and I couldn't just sit and watch. And I had 30 residents to watch. But I wonder. And I watch.....
I'm sorry to hear your love is failing. I'm glad that you have him at home. My thoughts are with you and your family.
ReplyDeleteThank you so much Lisa. We are glad to have him at home with us too...most of the time :)
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