It seems to be happening so fast! It's been a difficult few weeks, as I observe further decline in Jim's ability to function. Today I updated the specifics of these changes on the second page of my blog, which can be found here.
Primitive reflexes are seen in infants. Sucking reflex and startle reflex are two such examples. Developmentally, these reflexes disappear at the baby grows. In my quest to understand the changes that I've seen in Jim, I've discovered that these primitive reflexes can reappear in late stage dementia. Over the last few weeks, I've observed both of these reflexes with increasing frequency.
At meal time especially I see the sucking reflex. Anything that he can bring to his mouth seems to elicit this response. When I approach him with a spoonful of food, he often will purse his lips, trying to suck on the food that is on the spoon. He often reaches for utensils, napkin, placement, clothing protector, seemingly anything but food, and will exhibit this reflex. It has resulted in some challenges to help him actually ingest food. His weight is stable, and he drinks plenty of fluids (via straw), so no worries at this point about adequate intake.
Yesterday there was a close call at bingo. As I've mentioned before, Jim is a passive participant at structured activities. He seems to enjoy being present, but is not able to actually participate. Yesterday he picked up a bingo chip, brought it up to his mouth, made a sucking noise and it went into his mouth! I was able to safely extricate the chip without much difficulty, but it was alarming to me. If he had actually tried to swallow it he would have choked for sure.
I've notified the appropriate staff, including therapists, about my concerns. Putting into place the appropriate safeguards within a very busy memory care unit will be challenging for sure.
Jim startles very easily. In spite of my soft voice and slow movements, the slightest unexpected movement or sound causes him to be startled. His body jerks back, his arms go up and there is an involuntary movement in his legs. I'm doing my best to keep things even keeled for him, but sometimes it seems unavoidable.
I've read that as the dementia progresses there is a loss of peripheral vision and eventually a loss of distance vision beyond a couple of feet. Jim seems to have lost the peripheral vision. Not sure about the distance. But I'm grateful for my own awareness so that I can adjust what I do in supporting him with this change in vision.
Physical therapy continues, but I have to say it seems pretty discouraging. I'm not seeing improvement as I had hoped. If anything, he seems more unsteady when standing.
Awareness of his surroundings seems to be diminishing further. It's harder to break through and find him. The vacant look is increasingly present. But he's still in there, and I can still find him.
Yesterday we were sitting in his room, he in his wheelchair and me on his bed. On a whim, I lifted one of my legs and rested it on both of his legs. He immediately started rubbing and massaging my leg! Wow! It was an incredible way to connect with him. I took my shoe off and he started massaging my foot! An amazing physical and emotional connection that made us both very happy.
Years ago we used to give each other back and leg massages, especially following a difficult hike or bike ride. Somehow his brain was able to fire on all of its cylinders at that moment yesterday and create an experience for us that I will never forget.
Still able to connect, to find him.
Thanks for stopping by. I so appreciate the support of all my kind readers.
Thursday, March 28, 2019
Saturday, March 9, 2019
Where Do I Begin....
It's been quite a while since I last posted. It's been a difficult time, as I witness the further progression of Jim's dementia. If you are interested in reading the specifics of his progression, I recently updated the second page of my blog at this link.
His mobility has declined quite a bit. He now needs a wheelchair most of the time. Occasionally he is able to use a walker for short distances, but someone must be near him to make sure he doesn't fall. Physical reasons have been ruled out as an explanation for this decline. Thyroid functioning is OK, blood pressure is fine, there is no infection, and he is not on any medication that could contribute to this decline. The consensus from the professionals is that the decline in his mobility is a progression of his dementia.
He is receiving physical therapy to optimize the strength in his legs. For as long as possible, the goal is to maintain his ability to stand. This helps the staff providing care for him, for things such as changing his brief, dressing him, showering him and transferring him from chair to bed. I actually go to the PT sessions with him. What we have discovered is that he responds well to me when directions are given 😊. For example, when the PT tells him to do something (stand up or sit down for example), Jim stares into space as if not hearing or making a connection. The minute he hears my voice, he turns to me and smiles and then proceeds to do the best he can to follow the direction. Wow! How sweet is that!!!
So in the middle of all this sorrow, I still have my bright spots! I'm so thankful that I can still "find" him. He's still in there and I still know how to reach him. But I must temper my bragging with the reality that there are times when even my voice does not always get a response.
Sometimes you can tell that he is trying to do something, but his body is not cooperating. The brain is connected to every single thing that our body does. So activity such as walking will only happen if the brain is firing on all cylinders, making that connection to get the nerves and muscles to do what they are supposed to do.
The last few weeks he has needed a lot of help with eating and drinking. It used to be that I simply had to cut up his food for him and encourage him to eat/drink. Now, if left alone, he may not eat or drink at all. I've also seen him pick up an empty spoon and put it in his mouth. At times he would try to use the handle of a fork trying to suck on it (thinking it was a straw?). Occasionally he will try to eat non-edible items, such as styrofoam plate, clothing protector, napkin.
His weight is stable, so I know that he is getting enough to eat, even when I am not there. I'm always there for lunch and I stay the afternoon. This gives me the opportunity to make sure he gets enough food and fluids. Dehydration is very important to avoid. It can lead to constipation, low blood pressure, and with Jim's history of kidney stones he needs to stay well hydrated to avoid any reoccurrence.
Jim is almost mute. On rare occasion there may be a word or two. But his sweet smile and beautiful brown eyes light up when he sees me. At least most of the time. There are times when he seems to be looking right through me. It's heartbreaking. But so far, that happens with me only once in a while. He still hugs me, kisses me and caresses me. Every day that he is still able to respond this way, I am truly grateful.
His decline over the last few months has been very hard for me. My saving grace is that Jim is content. I think back to when he was in the middle stages of dementia where he had a dramatic change in his personality and behavior. He was so very angry, upset, inconsolable, and I was afraid for his safety as well as mine. But now that he has declined further into the later stage of dementia, his old personality is back! The Jim I married was a guy who was quiet, soft spoken, kind and loving. And he is back.
I know that the day will come when he is no longer able to respond when he sees me. Dr. M. reminds me that he will still be in there, and that I will find other ways to connect with him. This has been a very difficult journey for both of us. Our love for each other sustains both of us. And I'm honored to be with him and see him through this next stage of his life.
*********************************************************************************
You'll notice that comments pop up on a separate page. I think this will resolve the issue and allow me to respond to comments from readers. Thanks for stopping by. I so appreciate each of you sharing this journey with me.
His mobility has declined quite a bit. He now needs a wheelchair most of the time. Occasionally he is able to use a walker for short distances, but someone must be near him to make sure he doesn't fall. Physical reasons have been ruled out as an explanation for this decline. Thyroid functioning is OK, blood pressure is fine, there is no infection, and he is not on any medication that could contribute to this decline. The consensus from the professionals is that the decline in his mobility is a progression of his dementia.
He is receiving physical therapy to optimize the strength in his legs. For as long as possible, the goal is to maintain his ability to stand. This helps the staff providing care for him, for things such as changing his brief, dressing him, showering him and transferring him from chair to bed. I actually go to the PT sessions with him. What we have discovered is that he responds well to me when directions are given 😊. For example, when the PT tells him to do something (stand up or sit down for example), Jim stares into space as if not hearing or making a connection. The minute he hears my voice, he turns to me and smiles and then proceeds to do the best he can to follow the direction. Wow! How sweet is that!!!
So in the middle of all this sorrow, I still have my bright spots! I'm so thankful that I can still "find" him. He's still in there and I still know how to reach him. But I must temper my bragging with the reality that there are times when even my voice does not always get a response.
Sometimes you can tell that he is trying to do something, but his body is not cooperating. The brain is connected to every single thing that our body does. So activity such as walking will only happen if the brain is firing on all cylinders, making that connection to get the nerves and muscles to do what they are supposed to do.
The last few weeks he has needed a lot of help with eating and drinking. It used to be that I simply had to cut up his food for him and encourage him to eat/drink. Now, if left alone, he may not eat or drink at all. I've also seen him pick up an empty spoon and put it in his mouth. At times he would try to use the handle of a fork trying to suck on it (thinking it was a straw?). Occasionally he will try to eat non-edible items, such as styrofoam plate, clothing protector, napkin.
His weight is stable, so I know that he is getting enough to eat, even when I am not there. I'm always there for lunch and I stay the afternoon. This gives me the opportunity to make sure he gets enough food and fluids. Dehydration is very important to avoid. It can lead to constipation, low blood pressure, and with Jim's history of kidney stones he needs to stay well hydrated to avoid any reoccurrence.
Jim is almost mute. On rare occasion there may be a word or two. But his sweet smile and beautiful brown eyes light up when he sees me. At least most of the time. There are times when he seems to be looking right through me. It's heartbreaking. But so far, that happens with me only once in a while. He still hugs me, kisses me and caresses me. Every day that he is still able to respond this way, I am truly grateful.
His decline over the last few months has been very hard for me. My saving grace is that Jim is content. I think back to when he was in the middle stages of dementia where he had a dramatic change in his personality and behavior. He was so very angry, upset, inconsolable, and I was afraid for his safety as well as mine. But now that he has declined further into the later stage of dementia, his old personality is back! The Jim I married was a guy who was quiet, soft spoken, kind and loving. And he is back.
I know that the day will come when he is no longer able to respond when he sees me. Dr. M. reminds me that he will still be in there, and that I will find other ways to connect with him. This has been a very difficult journey for both of us. Our love for each other sustains both of us. And I'm honored to be with him and see him through this next stage of his life.
*********************************************************************************
You'll notice that comments pop up on a separate page. I think this will resolve the issue and allow me to respond to comments from readers. Thanks for stopping by. I so appreciate each of you sharing this journey with me.
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