He is losing his sense of taste.
He is losing weight as he is not eating.
Last night he had severe cramps in his feet and legs. He could not get out of bed. His cell phone had fallen to the floor and he could not call me. Then he had a sugar crash - due to anxiety? He said that he finally managed to get up, take some glucose tabs, walk around and started getting better. But he didn't sleep at all.
So today, he is exhausted, scared, frustrated, upset and hurting. I suggested a call to his doctor and he declined. So I'm keeping busy outside with gardening (tis the season!) and trying to keep things quiet for him.
I feel so bad for him. Yet I know there's nothing that can be done. I think if he'd call his doctor, they might do something for his pain. But if he won't call the doctor - what can you do?
Tuesday he had his eye exam. The cataracts are growing, but they didn't think a surgeon would touch him (he has cornea transplants in both eyes). They are fitting him with a new contact lens that is deeper and larger in the hopes that it will stay in his eye and not pop out. Then he just waits until the cataracts cause enough problem that they have to try surgery.
He had labs done that day, but he's refusing to look at them. Sigh. I would at least like to know if things are the same....but he doesn't want to know. So I'll wait and see if the doctor calls him to come in for a visit.
Life with a non-compliant diabetic is not fun, that's for sure. I know - I'm such a bundle of joy today! So - on the happy side of life - I'm busy with 2 watercolor classes. Have 2 fountains and the pond up and running. Am putting up a decorative fence around the front yard. And the list of things that I need to get done is a mile long so plenty to keep me outside as long as the weather holds nice.
I think gardening and painting balance out the sickness in the house. Life is good!
DW
Friday, May 05, 2017
Friday, April 21, 2017
Back home again
Life is amazing. My sis and I had an incredible trip and then jet lag for about 9 days! All recovered now and life is back on track.
Hubby did ok - but he has started losing weight. Now - he is a rather large guy at about 270lbs. So he could stand to lose some. But not like this. In the 2 weeks I've been home a few new developments and I'm pretty sure they are all linked to Stage 4 ESRD.
The smell of food makes him nauseous. We walked into a restaurant in a town about an hour away and he was perfectly fine, but the moment he smelled the food, he got sick to his stomach.
He is only eating about half of his meal and then he feels sick.
But he will eat an entire box of fiddle fade (like cracker jacks) at one time. That stuff is completely loaded with sugar. Just what he needs!
He is experiencing a lot of diarrhea and stomach problems.
He cancelled his appointment with the endocrinologists and has not rescheduled. Says there is no point in going. I argued that they might be able to help him with ideas on palliative care.
His cataracts have grown to the point he thinks he is legally blind. He was supposed to go to the eye doc this week, but they cancelled so now rescheduled for May. In the meantime, I will be doing all of the driving.
His back is causing him a lot of pain. And I wonder if that pain could be attributing to the nausea.
It is sad to return after being away for 6 weeks and see the decline. Yet I know it has been going on all along - you just don't notice the little things when you are with someone 24/7.
Sis and I walked 9 - 10 miles almost every day. Even on an "off" day, we would walk 4-5 miles. It was a bit of a rugged walk at times going up and down primitive trails. So my knees, hips, thighs are in pretty good shape. We are back to walking 4 miles 3 times a week here.
And now, spring yard work starts so that will keep me busy. We just picked up new fence (metal decorative type) to add another fenced section to the back yard. Two of my sisters have started coming over a couple times a week to work on making jewelry. Today we are going to attempt some sterling silver soldering. We've all had classes in the past so it's time to refresh our skills.
Just thought I'd update as this blog serves as a record of his progression with his diabetes. I think overall, he's doing pretty good. Yet I know that it just takes something quite minor to cause a problem.
DW
Hubby did ok - but he has started losing weight. Now - he is a rather large guy at about 270lbs. So he could stand to lose some. But not like this. In the 2 weeks I've been home a few new developments and I'm pretty sure they are all linked to Stage 4 ESRD.
The smell of food makes him nauseous. We walked into a restaurant in a town about an hour away and he was perfectly fine, but the moment he smelled the food, he got sick to his stomach.
He is only eating about half of his meal and then he feels sick.
But he will eat an entire box of fiddle fade (like cracker jacks) at one time. That stuff is completely loaded with sugar. Just what he needs!
He is experiencing a lot of diarrhea and stomach problems.
He cancelled his appointment with the endocrinologists and has not rescheduled. Says there is no point in going. I argued that they might be able to help him with ideas on palliative care.
His cataracts have grown to the point he thinks he is legally blind. He was supposed to go to the eye doc this week, but they cancelled so now rescheduled for May. In the meantime, I will be doing all of the driving.
His back is causing him a lot of pain. And I wonder if that pain could be attributing to the nausea.
It is sad to return after being away for 6 weeks and see the decline. Yet I know it has been going on all along - you just don't notice the little things when you are with someone 24/7.
Sis and I walked 9 - 10 miles almost every day. Even on an "off" day, we would walk 4-5 miles. It was a bit of a rugged walk at times going up and down primitive trails. So my knees, hips, thighs are in pretty good shape. We are back to walking 4 miles 3 times a week here.
And now, spring yard work starts so that will keep me busy. We just picked up new fence (metal decorative type) to add another fenced section to the back yard. Two of my sisters have started coming over a couple times a week to work on making jewelry. Today we are going to attempt some sterling silver soldering. We've all had classes in the past so it's time to refresh our skills.
Just thought I'd update as this blog serves as a record of his progression with his diabetes. I think overall, he's doing pretty good. Yet I know that it just takes something quite minor to cause a problem.
DW
Thursday, February 23, 2017
what would you do?
Yesterday afternoon they buried my ex-mother-in-law. My son's grandmother. I did not go to the funeral or graveside but my son (age 38) texted me about 4pm that everyone had left and he was still there. He said he just wasn't ready to leave yet. I asked if he wanted me to come sit with him. He said yes. So I sat and shared as many memories of her life as I could. Pretty soon, he started telling me things that he recalled from his childhood about her and we were both laughing.
He was so incredibly close to her, loved her so much, and this devastated him. She had been in a near vegetative state in a nursing home the past few months and we all expected/anticipated her passing. Still, when it happens, it's not easy.
She was a truly wonderful woman. She always treated me like her daughter - always welcomed me into her life.
After about an hour of sitting on the ground, talking with my son, 4 cars came back into the cemetery. He had told me that everyone had gone back to the funeral home for a dinner. Out of these cars stepped my ex-husband, his brothers and his sister. I had not seen the ex in 20 years and did not recognize him until he said my name. What a shock!! I had seen the siblings in the past few years and knew them immediately.
The ex and I are amicable - we just live in different states and have no reason to run into each other. So we chatted for a bit. He said that he got in the night before and was leaving this morning. I thought, "how odd - your mom just died." Then he explained that he and his wife were leaving for Cancun on Saturday and they had to get back home (a 10 hour drive) to get ready for that.
We exchanged a few more pleasantries and he left. It was another half hour of chatting with my son before he decided that he was ready to tell his grandma goodbye and we left the cemetery.
Funny how the reactions of death by others give you reason to ponder what you would do. When my own mother died, I think in retrospect I was brain paralyzed. I don't think I functioned properly for several months - I just went through the motions of life. I was with her, holding her hand, when she took her last breath. How oddly different this ex husband who waited til 3 days after his mom died to make the trip here, stayed 36 hours and took off because he has a vacation to attend to.
And then I smacked myself silly! I am leaving next week to go overseas for 5 weeks with my youngest sister. We have been planning this trip for the past 6 months. What if my husband were to die the morning we leave. Would I cancel that trip? Wow! Now there's a wake-up call! What would I do? And of course I can't answer that because I don't think we ever know what we will do in a crisis. But did my ex-husband just give me permission to stick with my travel plans? I should clarify that the ex is a full-time mortician. Has he seen so much death in his life that he is numb to it - even the death of his own mother? Perhaps.
Or has he learned how to process death, prepare for death, deal with it and get on with life. Is it just another moment in his life? It really gave me reason to stop and ponder - what is the proper protocol when someone dies.....and does it matter what others think about how you react to death?
Now, I truly doubt hubby is going to die in the next week. But that leads to the next discussion. A couple of days ago he started vomiting and having diarrhea. I did some googling and came up with a new one....diabetic gastroparesis. That's when food doesn't digest, stays in the stomach too long, and comes back up. He pretty much has all the symptoms. I suggested he call his doctor. He said he wouldn't. I asked when his next appointment was. He said Apr 27. If he's not better today I will strongly urge him to call his doctor.
Last night, he asked if we had any chicken broth. OK - not something I stock but I got him a can of chicken noodle soup. I suggested that he might want to just have some dry toast and let his stomach rest. He replied that he was having a sugar low and had run out of glucose tablets. How can he run out of glucose tabs? Is he just not thinking? Sometimes you just have to wonder!
I wanted to post this as I won't be posting again until late April. This trip is a much needed getaway. He will be fine. We will Skype every day and keep in touch. I'm looking forward to this adventure so much! Hope you all have a great month!
DW
PS - there were a couple of comments that I deleted because they were full of weird characters. If it was your comment, I apologize. But I honestly couldn't quite make out the content because of all the weird letters/symbols. I think that happens if you use a fancy font that the internet doesn't recognize.
He was so incredibly close to her, loved her so much, and this devastated him. She had been in a near vegetative state in a nursing home the past few months and we all expected/anticipated her passing. Still, when it happens, it's not easy.
She was a truly wonderful woman. She always treated me like her daughter - always welcomed me into her life.
After about an hour of sitting on the ground, talking with my son, 4 cars came back into the cemetery. He had told me that everyone had gone back to the funeral home for a dinner. Out of these cars stepped my ex-husband, his brothers and his sister. I had not seen the ex in 20 years and did not recognize him until he said my name. What a shock!! I had seen the siblings in the past few years and knew them immediately.
The ex and I are amicable - we just live in different states and have no reason to run into each other. So we chatted for a bit. He said that he got in the night before and was leaving this morning. I thought, "how odd - your mom just died." Then he explained that he and his wife were leaving for Cancun on Saturday and they had to get back home (a 10 hour drive) to get ready for that.
We exchanged a few more pleasantries and he left. It was another half hour of chatting with my son before he decided that he was ready to tell his grandma goodbye and we left the cemetery.
Funny how the reactions of death by others give you reason to ponder what you would do. When my own mother died, I think in retrospect I was brain paralyzed. I don't think I functioned properly for several months - I just went through the motions of life. I was with her, holding her hand, when she took her last breath. How oddly different this ex husband who waited til 3 days after his mom died to make the trip here, stayed 36 hours and took off because he has a vacation to attend to.
And then I smacked myself silly! I am leaving next week to go overseas for 5 weeks with my youngest sister. We have been planning this trip for the past 6 months. What if my husband were to die the morning we leave. Would I cancel that trip? Wow! Now there's a wake-up call! What would I do? And of course I can't answer that because I don't think we ever know what we will do in a crisis. But did my ex-husband just give me permission to stick with my travel plans? I should clarify that the ex is a full-time mortician. Has he seen so much death in his life that he is numb to it - even the death of his own mother? Perhaps.
Or has he learned how to process death, prepare for death, deal with it and get on with life. Is it just another moment in his life? It really gave me reason to stop and ponder - what is the proper protocol when someone dies.....and does it matter what others think about how you react to death?
Now, I truly doubt hubby is going to die in the next week. But that leads to the next discussion. A couple of days ago he started vomiting and having diarrhea. I did some googling and came up with a new one....diabetic gastroparesis. That's when food doesn't digest, stays in the stomach too long, and comes back up. He pretty much has all the symptoms. I suggested he call his doctor. He said he wouldn't. I asked when his next appointment was. He said Apr 27. If he's not better today I will strongly urge him to call his doctor.
Last night, he asked if we had any chicken broth. OK - not something I stock but I got him a can of chicken noodle soup. I suggested that he might want to just have some dry toast and let his stomach rest. He replied that he was having a sugar low and had run out of glucose tablets. How can he run out of glucose tabs? Is he just not thinking? Sometimes you just have to wonder!
I wanted to post this as I won't be posting again until late April. This trip is a much needed getaway. He will be fine. We will Skype every day and keep in touch. I'm looking forward to this adventure so much! Hope you all have a great month!
DW
PS - there were a couple of comments that I deleted because they were full of weird characters. If it was your comment, I apologize. But I honestly couldn't quite make out the content because of all the weird letters/symbols. I think that happens if you use a fancy font that the internet doesn't recognize.
Saturday, January 28, 2017
and he's back
after being gone 6 weeks. I am truly struggling this time to acclimate myself to life with him. It is not easy. OK - it has been extremely hard.
I wonder if it's because we are both getting older. I wonder if it's because the marriage just isn't working. I wonder.....
It's the tiniest things that drive me up the wall. He said, "did you get rid of my laundry basket?" I said, "no, it's in your closet." He said, "no, it's not here."
So I put down what I'm working on, get up, walk to his bedroom, look in the closet and point to the laundry basket. He said, "that's no it." So I pick it up, take it out of the closet, set it on the bed and he says, "oh, it is!"
What the heck????
I pulled into the garage tonight and parked where I always do. When I went to open the door, I saw that a drawer on the tool chest had been left wide open. It sits right where I open the car door. I had to back up, get out, close the drawer, then pull up again.
He couldn't close a drawer???
He has an old DVD player (huge as it was one of the first ones out) and he wanted me to store it for him. I asked why? He said, "We've only had it 3 or 4 years, I just don't want to get rid of it." I said, "In May, it will be 5 years since we moved into this house and you had it at least 5 years in the last house. That makes it 10 years old!!!"
He has lost all concept of time!
None of this is anything major, but when it is 3, 4, 5, 6 times every hour - it just builds up. I could just go on and on with examples like this. I knew it would happen. I tried to prepare myself for it. But for whatever reason it is just not working this time.
I am doing a very good job of keeping my mouth shut. Biting my tongue. Trying to accept that this is just how life is with someone who probably isn't getting enough oxygen to their brain, who's kidneys aren't able to get rid of the waste, who refused to do anything about their health. I am trying hard. Just not sure it's going to work. Makes me appreciate the break I just had so much more!
DW
I wonder if it's because we are both getting older. I wonder if it's because the marriage just isn't working. I wonder.....
It's the tiniest things that drive me up the wall. He said, "did you get rid of my laundry basket?" I said, "no, it's in your closet." He said, "no, it's not here."
So I put down what I'm working on, get up, walk to his bedroom, look in the closet and point to the laundry basket. He said, "that's no it." So I pick it up, take it out of the closet, set it on the bed and he says, "oh, it is!"
What the heck????
I pulled into the garage tonight and parked where I always do. When I went to open the door, I saw that a drawer on the tool chest had been left wide open. It sits right where I open the car door. I had to back up, get out, close the drawer, then pull up again.
He couldn't close a drawer???
He has an old DVD player (huge as it was one of the first ones out) and he wanted me to store it for him. I asked why? He said, "We've only had it 3 or 4 years, I just don't want to get rid of it." I said, "In May, it will be 5 years since we moved into this house and you had it at least 5 years in the last house. That makes it 10 years old!!!"
He has lost all concept of time!
None of this is anything major, but when it is 3, 4, 5, 6 times every hour - it just builds up. I could just go on and on with examples like this. I knew it would happen. I tried to prepare myself for it. But for whatever reason it is just not working this time.
I am doing a very good job of keeping my mouth shut. Biting my tongue. Trying to accept that this is just how life is with someone who probably isn't getting enough oxygen to their brain, who's kidneys aren't able to get rid of the waste, who refused to do anything about their health. I am trying hard. Just not sure it's going to work. Makes me appreciate the break I just had so much more!
DW
Saturday, January 07, 2017
Storing medical supplies
Hubby has been gone since 12/12. I caught a cold and am recovering so not getting everything done I had hoped to get done while he is gone. He'll be back 1/21. It's been a great break (other than being sick for 2 weeks).
These reprieves are a complete blessing to me. There are moments when I simply sit here in the silence of the house. I know that I have been pushing too hard and that's probably why I got sick. On the other hand...I am fully rested and ready to turn back into a caregiver when he gets home.
We FaceTime. That is interesting. Because I don't see him all day long it gives me a different view of him. Puffy face. Retaining fluids? Swollen eyelids. Things I will look at differently now that I've seen them with space and time in between.
Hubby is holding his own with his diabetes. He will be seeing a new endocrinologist in April. Still no nephropathy referral which he should have had months ago. Maybe I can get him to follow up on that. Or maybe his primary care deleted the request after he said he wouldn't do dialysis. At any rate, life is pretty good at the moment.
One of the more interesting things about diabetes is finding storage space to keep the things you need to have on hand. We have a small place - 1120SF. I have just completed doing the final closet with the wire racks from Home Depot. I like them as you can adjust them to fit whatever you need. I no longer wear dresses so I just need a few feet to hang shirts and pants. The rest of the closet can be in shelves. I find the fabric cubes are perfect for storing all kinds of medical supplies. And I found some "half" wide bins at Home depot which have proven to be great for medicines and drugs. About a foot deep, 6" wide and a foot tall. Odd sized things fit nicely. So much more storage than just stacking stuff on a shelf and I can pull out the bin to find what I need. I have several of the full sized bins as well which are great for larger items such as back braces, leg braces, tens packs, etc. I now have one full closet dedicated to medical stuff. I never thought that would happen - but these racks and bins allow me to store it all in one handy place.
This week, I'm working on adding these "closet" racks to the garage. Once I'm done with that I think everything will finally have a "home". It's only been 4 1/2 years since we moved in here. But at least it's getting done!
Hope everyone has a healthy 2017.
DW
These reprieves are a complete blessing to me. There are moments when I simply sit here in the silence of the house. I know that I have been pushing too hard and that's probably why I got sick. On the other hand...I am fully rested and ready to turn back into a caregiver when he gets home.
We FaceTime. That is interesting. Because I don't see him all day long it gives me a different view of him. Puffy face. Retaining fluids? Swollen eyelids. Things I will look at differently now that I've seen them with space and time in between.
Hubby is holding his own with his diabetes. He will be seeing a new endocrinologist in April. Still no nephropathy referral which he should have had months ago. Maybe I can get him to follow up on that. Or maybe his primary care deleted the request after he said he wouldn't do dialysis. At any rate, life is pretty good at the moment.
One of the more interesting things about diabetes is finding storage space to keep the things you need to have on hand. We have a small place - 1120SF. I have just completed doing the final closet with the wire racks from Home Depot. I like them as you can adjust them to fit whatever you need. I no longer wear dresses so I just need a few feet to hang shirts and pants. The rest of the closet can be in shelves. I find the fabric cubes are perfect for storing all kinds of medical supplies. And I found some "half" wide bins at Home depot which have proven to be great for medicines and drugs. About a foot deep, 6" wide and a foot tall. Odd sized things fit nicely. So much more storage than just stacking stuff on a shelf and I can pull out the bin to find what I need. I have several of the full sized bins as well which are great for larger items such as back braces, leg braces, tens packs, etc. I now have one full closet dedicated to medical stuff. I never thought that would happen - but these racks and bins allow me to store it all in one handy place.
This week, I'm working on adding these "closet" racks to the garage. Once I'm done with that I think everything will finally have a "home". It's only been 4 1/2 years since we moved in here. But at least it's getting done!
Hope everyone has a healthy 2017.
DW
Monday, November 14, 2016
Balance
Managing wrote:
I don't know if I will continue to write....or for how long. I think I will need to write through the grief.
In the past 3 weeks, 3 women that I know have lost their husbands. One to diabetes, one to age, another to a 15 year disability. All 3 men were on hospice. And all 3 of these women have told me that even though they knew their husbands didn't have long, they were still "shocked" when they died.
It made me wonder - how do you balance the knowledge that he is going to die with the fact that he is gone after it happens?
Hubby burnt his finger quite bad today. He said he didn't know it was resting on something hot. He couldn't feel the heat.
And he has had a horrible amount of pain today with his sciatica. So I googled that and it could be from his kidney disease. He said he can't remember doing anything to pull it.
Will he go to the doctor? No. So I have to find balance between feeling bad for him and thinking that he is stupid because he won't even ask if there is something they can do for his pain.
Balance. We have to find something positive and good to balance out the negative.
Art gives me balance. I have just finished 4 classes over the past 6 weeks. They have brought new friends into my life and I am grateful for that. They have helped the creative side of my brain sort of wake up and I'm grateful for that. I am having fun and one class is a never-ending class that meets once a week and that is turning out to be the most fun ever! It's bringing some sense of balance into my life and gives me something to look forward to.
In all this, I have met a young artist. Quite good. He was in Iraq in the Army and hit with sarin gas and has developed MS. He's married with 2 young kids. Some mornings, he can't make his legs work. Other days, he does fine. I have been driving him to our classes and am so encouraged by him. He says that his body is that of a 65 year old and I can see that some days. Yet he gets up and paints a painting every single day. He has such determination to create. And he motivates me to stick with my art and with my classes. He brings another element of balance to my life. Perhaps that's what all of us need. Just an ounce of balance. :)
DW
This topic has nothing to do with your post I'm attaching it to. Since your experience has been so helpful in offereing some kind of "known" into our lives that follow your blog. . . I wonder if you will consider continuing your blog after your husband passes on?It sounds a little morbid and vouyeristic, but I suffer so greatly in two areas and one of them is I am sure I will never remember my husband as anyone other than who he is now; with all the anger and bad behavior. I don't want to remember him that way. So I wonder as you go through this process, if you discover that his earlier personality and how you guys felt together would come back to your memory as time goes by or right after his death, or just however that plays out. What do you say?
I don't know if I will continue to write....or for how long. I think I will need to write through the grief.
In the past 3 weeks, 3 women that I know have lost their husbands. One to diabetes, one to age, another to a 15 year disability. All 3 men were on hospice. And all 3 of these women have told me that even though they knew their husbands didn't have long, they were still "shocked" when they died.
It made me wonder - how do you balance the knowledge that he is going to die with the fact that he is gone after it happens?
Hubby burnt his finger quite bad today. He said he didn't know it was resting on something hot. He couldn't feel the heat.
And he has had a horrible amount of pain today with his sciatica. So I googled that and it could be from his kidney disease. He said he can't remember doing anything to pull it.
Will he go to the doctor? No. So I have to find balance between feeling bad for him and thinking that he is stupid because he won't even ask if there is something they can do for his pain.
Balance. We have to find something positive and good to balance out the negative.
Art gives me balance. I have just finished 4 classes over the past 6 weeks. They have brought new friends into my life and I am grateful for that. They have helped the creative side of my brain sort of wake up and I'm grateful for that. I am having fun and one class is a never-ending class that meets once a week and that is turning out to be the most fun ever! It's bringing some sense of balance into my life and gives me something to look forward to.
In all this, I have met a young artist. Quite good. He was in Iraq in the Army and hit with sarin gas and has developed MS. He's married with 2 young kids. Some mornings, he can't make his legs work. Other days, he does fine. I have been driving him to our classes and am so encouraged by him. He says that his body is that of a 65 year old and I can see that some days. Yet he gets up and paints a painting every single day. He has such determination to create. And he motivates me to stick with my art and with my classes. He brings another element of balance to my life. Perhaps that's what all of us need. Just an ounce of balance. :)
DW
Saturday, October 22, 2016
Lethargy
For lack of another term, I will use lethargy.
I have noticed that he can no longer pick up his feet when he walks. So he trips a lot. His feet get caught in rugs and on carpet runners. Shuffling.
Left the house and "forgot" to close the front door.
Got out of the car and "forgot" to close the car door.
Little things like that.
Yesterday, I'm not sure how, but when he opened a bottle of diet coke, it exploded. Gushing out. He just stood in the middle of the kitchen. Did nothing. I yelled to get it over the sink and he said, "I'm trying to".....but he didn't move. He just remained standing there in the middle of the kitchen.
It's like his mind thought he was moving....but his body wasn't.
And then I had to mop the floor, wipe down the cabinets, the stove, microwave, sink, countertops, refrigerator....it had spewed everywhere. Half the 2 liter bottle was gone!
I am trying to be more aware.....I have to be. Can't leave and have the front door wide open.
I have read enough to understand that this could be either diabetic neuropathy, kidney failure, or additional heart problems.
Almost like watching a slow motion movie in real life.
Life can be so interesting. :)
DW
I have noticed that he can no longer pick up his feet when he walks. So he trips a lot. His feet get caught in rugs and on carpet runners. Shuffling.
Left the house and "forgot" to close the front door.
Got out of the car and "forgot" to close the car door.
Little things like that.
Yesterday, I'm not sure how, but when he opened a bottle of diet coke, it exploded. Gushing out. He just stood in the middle of the kitchen. Did nothing. I yelled to get it over the sink and he said, "I'm trying to".....but he didn't move. He just remained standing there in the middle of the kitchen.
It's like his mind thought he was moving....but his body wasn't.
And then I had to mop the floor, wipe down the cabinets, the stove, microwave, sink, countertops, refrigerator....it had spewed everywhere. Half the 2 liter bottle was gone!
I am trying to be more aware.....I have to be. Can't leave and have the front door wide open.
I have read enough to understand that this could be either diabetic neuropathy, kidney failure, or additional heart problems.
Almost like watching a slow motion movie in real life.
Life can be so interesting. :)
DW
Saturday, October 15, 2016
How much do you share?
"managing" wrote:
Sounds like he's wanting to just check out. If you knew you only had three more months left with him would there be something you would want to have said to him or ask him to share with you that was previously not shared but you would like to? If I were these guys I would choose to die as fast as I could and not prolong the suffering in some half-way attempt at Beating this thing with surgeries or treatments that just keep your body alive but not getting better. Just not dying right away. And/or actually make your quality of life worse. Ugh! No thanks! I would choose the quickest and less struggling kind of way. I believe I will choose that, but I don't suppose any of us REALLY know until it is our own time. I wish you good things.
We have probably had all of those types of discussions that are possible....and more than just a few times. We also know that we could move to Oregon where assisted death is possible. And yes, we've discussed that.
There were moments during his spinal fusion surgeries that we did not know if he would survive. Afterwards we had long talks about it and about the fact that life could end at any moment. Then, 4 years ago, when his mom walked around the end of the her bed and dropped dead with a heart attack - we had many, many discussions. I think that brought it home that either of us could go just as fast. I think it would be the preference for both of us.
In some ways, I think he is afraid of death. Yet he is saying he will not do dialysis or transplant. He has had so many surgeries that I don't blame him. Yet when that "moment" comes - what will any of us do?
Our current discussions are sad. How much do we tell our family and friends? Do we keep quiet about lab results, doctor's visits....and then they are shocked when something happens? Or do we share with them and then they spend their time worrying. We don't want to create anxiety and there are some where that would happen (neither of us think his daughter could handle knowing what's going on with him). He doesn't want attention or sympathy and I do admire him for that. If we don't tell immediate family - there are some who will be terribly upset that we didn't. It's such a fine line and we still haven't decided how to balance it out. We have discussed his current status with a few family members and a couple of friends. But for the most part, we have decided to remain quiet for now.
And then there is the power of prayer. He does not want people praying that he stay alive. And I think that ties back into the above comment. If the body is not going to get well - why do people pray for the person to stay alive? Why not pray for a peaceful, painless resolution? I know of a woman who is about 85 and has been in a nursing home for 5 years. She has had numerous strokes, is on oxygen, can barely move, lays in bed all day long - yet people pray that she will live. She has shrunk and faded to near nothing. 90% of the time she is unaware of her surroundings. I pray for mercy for her sake - not that she live. But people think you are a horrible person if you don't pray for someone like her to live. Sigh.
The ultrasound on his kidneys came back clear. That means there is no growth or access blocking them. An indication that this is just kidney failure - nothing else. So now, we wait for the referral to nephrology.
There are days when he says he won't go to another specialist. And I understand that. But I try to tell him that it doesn't hurt and perhaps it could help. I suppose it depends on his mood when they call.
It's not been a particularly good week. He fell in the back yard. The gigantic black/purple bruise that covered most of his lower back was horrendous and he refused to go to ER or even call his doc. Then night before last I heard a gigantic crash in the kitchen. By the time I got there he was face down on the floor. He said he had dropped something, it his his foot and when he brought his foot up, he lost his balance and went down. It took him awhile to get up and once again, we sat and talked about what might happen when he can't get up on his own. At his weight I can't lift him and I'm not sure I could even roll him over.
Then yesterday - he was just mad at the world. Yelling and screaming at every little thing. I understood. He can't grasp things with his hands anymore - whatever it is just drops out. He has no feelings in his fingers. He is in pain for the recent falls. He is just mad at life. I made myself as scarce as possible in this tiny little house. It was an extremely stressful day - but we managed to make it through it.
The fall weather is holding out and I have been busy with my gardens. Hired a helper and we ripped up flower beds, removed mulch, put in metal borders, ground cloth, and have put down 1 1/2 tons of river rock. Probably another ton to go next week. They are looking lovely, well manicured, and it will be easier to clean the leaves out with a blower. I've also signed up for 3 art classes this fall. I had to laugh as all 3 classes gave me homework to do! Needless to say, I'm keeping busy! And I think that is the best way to handle a diabetic spouse - you just keep living - doing the things you would do if you had a healthy spouse - to the extent possible.
DW
Wednesday, September 21, 2016
Lab results
While many of his labs are outside the normal range, they are consistent with past labs. I. E., his A1c is 10.6....which is where it's been for ages.
However, the Microalbumin, ur, detection limit (should be under 30) is over 2000
The microalbumin/creatinine (should be under 30) is also over 2000.
The means his kidneys are not functioning and protein is high in his urine.
His doctor wants to do an ultrasound of his kidneys (to rule out a growth or blockage) and a 24hr urine test.
He said he is not going to do either test.
Sometimes he says that and then schedules the test anyway.
So I did some research and told him what I found and that I didn't think it would hurt to have the tests done. We have excellent insurance and it wouldn't cost anything. We'll see if he decides to do them - might take a week or so - I'll give him that long and ask.
But I do understand. Not knowing the test results - you can go on just as things are right now. They will either tell him that he needs more drugs, dialysis, or that there's problems with his heart (which I suspect). He continues to say that he is not going back into a hospital.
My argument is that his doctor might refuse to treat him if he doesn't agree to the treatments he recommends and further testing would be part of his overall treatment plan.
In the meantime, his pneumonia symptoms went away and he is breathing better. He had a "boil" type something on his neck and the doc put him on an antibiotic and it has not only helped the "boil" but everything else. He goes back to the doc on the 29th.
DW
However, the Microalbumin, ur, detection limit (should be under 30) is over 2000
The microalbumin/creatinine (should be under 30) is also over 2000.
The means his kidneys are not functioning and protein is high in his urine.
His doctor wants to do an ultrasound of his kidneys (to rule out a growth or blockage) and a 24hr urine test.
He said he is not going to do either test.
Sometimes he says that and then schedules the test anyway.
So I did some research and told him what I found and that I didn't think it would hurt to have the tests done. We have excellent insurance and it wouldn't cost anything. We'll see if he decides to do them - might take a week or so - I'll give him that long and ask.
But I do understand. Not knowing the test results - you can go on just as things are right now. They will either tell him that he needs more drugs, dialysis, or that there's problems with his heart (which I suspect). He continues to say that he is not going back into a hospital.
My argument is that his doctor might refuse to treat him if he doesn't agree to the treatments he recommends and further testing would be part of his overall treatment plan.
In the meantime, his pneumonia symptoms went away and he is breathing better. He had a "boil" type something on his neck and the doc put him on an antibiotic and it has not only helped the "boil" but everything else. He goes back to the doc on the 29th.
DW
Monday, September 12, 2016
The next phase?
A few days ago he started to cough. A dry cough. Said he felt like his chest was filling up with fluid. I told him to see his doc - he can't get in until Thursday.
Today, he is struggling to breathe. He talks in short sentences and you can tell he can't get air in to speak.
He refuses to go to ER
He refuses to call his doc.
I have done everything I can to make him comfortable.
What if his doc tell him he needs to go on dialysis - he still says he won't do that.
What if they want to admit him to the hospital - he says he won't go.
I think diuretics will help short term, but nothing much long term from what I can find.
I know my "worry factor" has increased in the past 72 hours. Wondering if we are now full blown stage 5 ESRD.....or if this will pass.
Today, I am feeling old beyond my age. Can't begin to fathom how he is feeling.
Today, he is struggling to breathe. He talks in short sentences and you can tell he can't get air in to speak.
He refuses to go to ER
He refuses to call his doc.
I have done everything I can to make him comfortable.
What if his doc tell him he needs to go on dialysis - he still says he won't do that.
What if they want to admit him to the hospital - he says he won't go.
I think diuretics will help short term, but nothing much long term from what I can find.
I know my "worry factor" has increased in the past 72 hours. Wondering if we are now full blown stage 5 ESRD.....or if this will pass.
Today, I am feeling old beyond my age. Can't begin to fathom how he is feeling.
Saturday, September 03, 2016
Do you still love him?
I am having a great day playing artist....but when you do that, you loose control of what you are supposed to be doing. So, to "managing" - I deleted you comment and didn't get it copied. Sorry!
And it was a great comment about how you used to love your non-compliant diabetic spouse and how you are coming to terms with not loving him any more. I truly understand that! And I think on some level, I went through that in the 3 years mine was gone taking care of his dad. It is so strange when the fellow you were so madly in love with becomes a "roommate" of sorts...that you don't necessarily always want to have living with you. :)
This week has been interesting. He has been steadily losing control of the use of his hands - can't hold a thing. The first solution was to prepare finger food. Nothing that you have to cut with a knife. Sandwiches are great. Burritos, tacos, etc. But this week there have been more drops, spills and accidents than I can shake a finger at. The mop is now permanently stationed in the kitchen - it has been used so much.
It's the little things like this that are attributable to neuropathy....but no one tells you about them. When there is no sensation left in the fingers, you can't "feel" an object to grasp hold of it or hang onto it. I used to mop the floor once a week, then once a day - now multiple times per day.
And that has started me longing for one of these "tiny houses" - with no floor to mop. No "stuff" to spill or drop. LOL! OK - give me my fantasy - I'm entitled to that much!
Here's the sad part....no one tells you, no one prepares you. I didn't know. And while the issue has been increasing over the past few months, something has happened this week to where it has been daily.
The other thing I've noticed is an inability to pick up his feet when he walks. I have plastic runners on the carpet done the hall. He is constantly catching his foot on it and "tripping". He doesn't fall, just takes a few extra steps. And mutters under his breath. This has happened in the past, but this week - every day, multiple times.
So you have to wonder if something has happened internally to present these increased external incidents. It's something to ponder.
And I think he notices. He is ever so much more frustrated with life. He gets upset and explodes over the tiniest incident. I can usually ignore them. Suddenly, he hates living here, hates this place. So I quietly said, "well, move then." Ended that outburst. :)
I used to react, now I don't. That helps. Just let him have his rant, know that it may or may not be a sugar hight or low, keep doing whatever it is that I'm doing, don't let him have control over me, keep pushing the monkeys back onto his back. Difficult to do at times. But it seems to be helping.
Do I love him? Isn't that the $64,000 question? I did. I do. I just don't "love" the person he has become.
I have been studying "pump head" a term applied to people who have CABGS surgery (open heart) and are not the same as they were before the surgery. Quite an interesting concept....but perhaps a lot of truth to it. The heart "knows" that there was no blood pumped through it. It "thinks" it should have stopped. It then gets confused post-surgery. The brain gets confused. You do things you never did before. Some people get angry. Some just do unexplained things. My dad tore down a perfectly good house after his bypass surgery....for no acceptable reason!
So then you have to combine the aspects of "pump head" with a non-compliant diabetic. Very little research written about that. Very interesting study.
Do I love my pump-head, non-compliant diabetic? Well, that almost sounds funny enough to make you wanna love the poor schmuck! And even though there have been trying moments this week, it's been a good day today.
DW
And it was a great comment about how you used to love your non-compliant diabetic spouse and how you are coming to terms with not loving him any more. I truly understand that! And I think on some level, I went through that in the 3 years mine was gone taking care of his dad. It is so strange when the fellow you were so madly in love with becomes a "roommate" of sorts...that you don't necessarily always want to have living with you. :)
This week has been interesting. He has been steadily losing control of the use of his hands - can't hold a thing. The first solution was to prepare finger food. Nothing that you have to cut with a knife. Sandwiches are great. Burritos, tacos, etc. But this week there have been more drops, spills and accidents than I can shake a finger at. The mop is now permanently stationed in the kitchen - it has been used so much.
It's the little things like this that are attributable to neuropathy....but no one tells you about them. When there is no sensation left in the fingers, you can't "feel" an object to grasp hold of it or hang onto it. I used to mop the floor once a week, then once a day - now multiple times per day.
And that has started me longing for one of these "tiny houses" - with no floor to mop. No "stuff" to spill or drop. LOL! OK - give me my fantasy - I'm entitled to that much!
Here's the sad part....no one tells you, no one prepares you. I didn't know. And while the issue has been increasing over the past few months, something has happened this week to where it has been daily.
The other thing I've noticed is an inability to pick up his feet when he walks. I have plastic runners on the carpet done the hall. He is constantly catching his foot on it and "tripping". He doesn't fall, just takes a few extra steps. And mutters under his breath. This has happened in the past, but this week - every day, multiple times.
So you have to wonder if something has happened internally to present these increased external incidents. It's something to ponder.
And I think he notices. He is ever so much more frustrated with life. He gets upset and explodes over the tiniest incident. I can usually ignore them. Suddenly, he hates living here, hates this place. So I quietly said, "well, move then." Ended that outburst. :)
I used to react, now I don't. That helps. Just let him have his rant, know that it may or may not be a sugar hight or low, keep doing whatever it is that I'm doing, don't let him have control over me, keep pushing the monkeys back onto his back. Difficult to do at times. But it seems to be helping.
Do I love him? Isn't that the $64,000 question? I did. I do. I just don't "love" the person he has become.
I have been studying "pump head" a term applied to people who have CABGS surgery (open heart) and are not the same as they were before the surgery. Quite an interesting concept....but perhaps a lot of truth to it. The heart "knows" that there was no blood pumped through it. It "thinks" it should have stopped. It then gets confused post-surgery. The brain gets confused. You do things you never did before. Some people get angry. Some just do unexplained things. My dad tore down a perfectly good house after his bypass surgery....for no acceptable reason!
So then you have to combine the aspects of "pump head" with a non-compliant diabetic. Very little research written about that. Very interesting study.
Do I love my pump-head, non-compliant diabetic? Well, that almost sounds funny enough to make you wanna love the poor schmuck! And even though there have been trying moments this week, it's been a good day today.
DW
Wednesday, August 24, 2016
The funny things people write to me
I find it humorous when someone writes to me and says that I can't understand this or that because I'm not diabetic.
I disagree. I cannot understand your personal feelings, but I probably could pass for a ph.d on this topic. I have never experienced any of the symptoms or side effects of this disease. But having experienced a substantial amount of pain from a variety of issues in my lifetime - I do know what pain is.
Anyone understands events, illnesses, issues that sap energy out of you. I'm thinking childbirth would be a really good example! LOL!!! How exhausting is it to be in labor for 24 hours, pop out a child, then start to hemorrhage so severe that you have to go into surgery? Talk about pain that saps every single ounce of energy in your entire system? I've been there, experienced that!
I really do understand that excess sugar damages veins. As well as nerve endings, organs, etc. I completely understand that it's not providing him with the energy he needs. I know exactly where his lethargy comes from.
The difference is, he does not do what he is supposed to do. He is a seriously non-compliant diabetic who eats whatever he wants, refuses to do any type of exercise, is in his chair or on his bed most of the day.
I do understand that diabetes is never behind you. Trust me. It is right here every single solitary day - right in my face - whether I want it or not - and I do not have this disease. However, I have to live with the outcome of a diabetic who does not care to take care of himself.
When something goes "wrong" with my body, I will research the internet to see what I should do. If it says to see a doctor - I go. If there is a problem, I follow my physician's orders to the letter. I don't play around with health.
Which is probably what makes it so incredibly difficult to live with someone who refuses to do what the doctor orders, who has basically given up on life and is just coasting until the next major crisis. Personally, I think he is going blind. He is having more and more of these optical migraines where he can't see. He just goes to bed. One of these days, his vision will not return and I have no idea what will happen then.
And I do understand the depression. The fact that there is no hope. The fact that you never really know (especially when you are noncompliant) when you will have a sugar crash, start acting like an idiot, drive off the side of the road.....I live on the other side of this 24/7. I have to be the nurse, the person who is alert all the time. I never get a break. I do not get relief from the constant knowledge that he is constantly depressed. That being said, I am really tired of being his cheerleader, making sure he eats a solid meal....all the things that go with living with a diabetic.
I am tired of watching the impact of what is happening to him because he doesn't take care of himself.
To another writer - if you've read my blog as you state, then you would know that I do not promote anyone else's products. Comments are not the place to put your "ad". And I find it comical that you would try. Besides, we have extremely good insurance that covers everything you mentioned - so no need for us to look elsewhere. :)
I did have a wonderful 6 day reprieve when I flew to give a presentation at a conference. Being in the hotel, walking all over the city, exploring coffee houses and art venues - it was refreshing. I even read a book! Sort of makes you want to run away full time! :)
DW
I disagree. I cannot understand your personal feelings, but I probably could pass for a ph.d on this topic. I have never experienced any of the symptoms or side effects of this disease. But having experienced a substantial amount of pain from a variety of issues in my lifetime - I do know what pain is.
Anyone understands events, illnesses, issues that sap energy out of you. I'm thinking childbirth would be a really good example! LOL!!! How exhausting is it to be in labor for 24 hours, pop out a child, then start to hemorrhage so severe that you have to go into surgery? Talk about pain that saps every single ounce of energy in your entire system? I've been there, experienced that!
I really do understand that excess sugar damages veins. As well as nerve endings, organs, etc. I completely understand that it's not providing him with the energy he needs. I know exactly where his lethargy comes from.
The difference is, he does not do what he is supposed to do. He is a seriously non-compliant diabetic who eats whatever he wants, refuses to do any type of exercise, is in his chair or on his bed most of the day.
I do understand that diabetes is never behind you. Trust me. It is right here every single solitary day - right in my face - whether I want it or not - and I do not have this disease. However, I have to live with the outcome of a diabetic who does not care to take care of himself.
When something goes "wrong" with my body, I will research the internet to see what I should do. If it says to see a doctor - I go. If there is a problem, I follow my physician's orders to the letter. I don't play around with health.
Which is probably what makes it so incredibly difficult to live with someone who refuses to do what the doctor orders, who has basically given up on life and is just coasting until the next major crisis. Personally, I think he is going blind. He is having more and more of these optical migraines where he can't see. He just goes to bed. One of these days, his vision will not return and I have no idea what will happen then.
And I do understand the depression. The fact that there is no hope. The fact that you never really know (especially when you are noncompliant) when you will have a sugar crash, start acting like an idiot, drive off the side of the road.....I live on the other side of this 24/7. I have to be the nurse, the person who is alert all the time. I never get a break. I do not get relief from the constant knowledge that he is constantly depressed. That being said, I am really tired of being his cheerleader, making sure he eats a solid meal....all the things that go with living with a diabetic.
I am tired of watching the impact of what is happening to him because he doesn't take care of himself.
To another writer - if you've read my blog as you state, then you would know that I do not promote anyone else's products. Comments are not the place to put your "ad". And I find it comical that you would try. Besides, we have extremely good insurance that covers everything you mentioned - so no need for us to look elsewhere. :)
I did have a wonderful 6 day reprieve when I flew to give a presentation at a conference. Being in the hotel, walking all over the city, exploring coffee houses and art venues - it was refreshing. I even read a book! Sort of makes you want to run away full time! :)
DW
Tuesday, August 02, 2016
August already!
I am posting this solely as reference notes. I forget with day-to-day life that I still need to keep track of changes.
I have been studying post CABG (open heart surgery) cognitive dysfunction (aka pump head). It is an interesting topic. My dad had 5 bypasses done when he was 45 years old and I'm pretty sure he had this. About 10 years after his surgery, he tore down a perfectly good house. He lived 17 years after his surgery, which, at that time, was considered a pretty good track record.
Hubby is now 6 years post CABG. I see signs of "stupid" decisions. His brother wanted his parents house and he decided to keep his grandmother's apartment on the property. It doesn't make good financial sense to me. He can't sell it (the property has to be sold as a single unit). Any money he puts into the place (and it needs a ton of investment) will be money down the drain as he can never sell the place to recover it. Not good financial choices.
He just spent a month there - the hottest month of a year in a place where it's hot! Why July? Why not January? It doesn't make sense.
He is dropping things and getting angry. Why get angry? Why not go to a doctor, physical therapist, occupational therapist - see what can be done? I suppose it's easier to just get angry.
He told me that he would like to just be a recluse. I told him I'm not ready to live with one. We are at odds.
While he was gone, I found 4 bottles of nitroglycerin in his bedroom and bathroom. I asked him if he was taking that again. He said no. There should be 25 pills in each bottle. One had 2 pills, one had 4....I suppose he doesn't want me to know that he's taking it? Why not? I suppose he didn't think I'd literally count the pills. LOL!
Today was a particularly horrible day. I had loaded up the truck with bits of lumber (I just replaced the crossboards on our privacy fence) and tree branches I've cut and yard trimmings to take to the dump. Got the tarp and tiedowns on it. He said he'd go with me. It started raining on the way. It let up, so I got out and started putting everything in the roll-off dumpster as we weren't allowed to go into the dump due to the mud. Then it started to pour. There I was in the pouring rain, moving stuff from the back to the truck to the dumpster while he sat inside the cab. He didn't offer to help. He didn't budge. And I just wanted to cry. But I didn't. I finished the task and came home to a long hot bath.
Next week I'm flying 1300 miles to speak at a conference on a history topic I've been researching the past 10 years. I am looking forward to being surrounded by like-minded souls, to making new friends, to socializing. I went to dinner this past Sunday with out-of-state friends I have known for 40 years. He didn't go. He said he would have nothing to talk about. I thought that was sad. I talked and listened for 3 1/2 hours!
I would love to get a small travel trailer and travel while we still can. He said today that he wouldn't go with me. So I won't be doing that. He probably thinks it would be too much work - but I'm not sure why that's an issue since I did all the work today while he sat inside the truck. Somehow, he just doesn't see that.
I have been quite busy the last 2 months. We have 180' of privacy fence and I am painting it inside and out, replacing crossboards and repairing pickets as I go. I have had to clean out the flower beds along the inside and move boulders to get to the bottom of the pickets. Still walking 3 miles every other day with my sister. Getting plenty of exercise.
It makes me sad that he has chosen this path for his life. That he has given up on living - that he finds no joy any more. And it is a struggle for me to keep my head above water most days - but I am succeeding. Building a niche for myself, building a circle of friends. Keeping busy. Started watercolor painting classes 4 weeks ago. I am horrible at it! But I am meeting some very interesting people in class and the conversations are wonderful! I'm even looking for more classes to take.
While I am sad at his life and lifestyle, I am blessed with mine. Staying busy, keeping active, finding new things to be interested in - that may be the key to surviving life with a non-compliant diabetic!
DW
I have been studying post CABG (open heart surgery) cognitive dysfunction (aka pump head). It is an interesting topic. My dad had 5 bypasses done when he was 45 years old and I'm pretty sure he had this. About 10 years after his surgery, he tore down a perfectly good house. He lived 17 years after his surgery, which, at that time, was considered a pretty good track record.
Hubby is now 6 years post CABG. I see signs of "stupid" decisions. His brother wanted his parents house and he decided to keep his grandmother's apartment on the property. It doesn't make good financial sense to me. He can't sell it (the property has to be sold as a single unit). Any money he puts into the place (and it needs a ton of investment) will be money down the drain as he can never sell the place to recover it. Not good financial choices.
He just spent a month there - the hottest month of a year in a place where it's hot! Why July? Why not January? It doesn't make sense.
He is dropping things and getting angry. Why get angry? Why not go to a doctor, physical therapist, occupational therapist - see what can be done? I suppose it's easier to just get angry.
He told me that he would like to just be a recluse. I told him I'm not ready to live with one. We are at odds.
While he was gone, I found 4 bottles of nitroglycerin in his bedroom and bathroom. I asked him if he was taking that again. He said no. There should be 25 pills in each bottle. One had 2 pills, one had 4....I suppose he doesn't want me to know that he's taking it? Why not? I suppose he didn't think I'd literally count the pills. LOL!
Today was a particularly horrible day. I had loaded up the truck with bits of lumber (I just replaced the crossboards on our privacy fence) and tree branches I've cut and yard trimmings to take to the dump. Got the tarp and tiedowns on it. He said he'd go with me. It started raining on the way. It let up, so I got out and started putting everything in the roll-off dumpster as we weren't allowed to go into the dump due to the mud. Then it started to pour. There I was in the pouring rain, moving stuff from the back to the truck to the dumpster while he sat inside the cab. He didn't offer to help. He didn't budge. And I just wanted to cry. But I didn't. I finished the task and came home to a long hot bath.
Next week I'm flying 1300 miles to speak at a conference on a history topic I've been researching the past 10 years. I am looking forward to being surrounded by like-minded souls, to making new friends, to socializing. I went to dinner this past Sunday with out-of-state friends I have known for 40 years. He didn't go. He said he would have nothing to talk about. I thought that was sad. I talked and listened for 3 1/2 hours!
I would love to get a small travel trailer and travel while we still can. He said today that he wouldn't go with me. So I won't be doing that. He probably thinks it would be too much work - but I'm not sure why that's an issue since I did all the work today while he sat inside the truck. Somehow, he just doesn't see that.
I have been quite busy the last 2 months. We have 180' of privacy fence and I am painting it inside and out, replacing crossboards and repairing pickets as I go. I have had to clean out the flower beds along the inside and move boulders to get to the bottom of the pickets. Still walking 3 miles every other day with my sister. Getting plenty of exercise.
It makes me sad that he has chosen this path for his life. That he has given up on living - that he finds no joy any more. And it is a struggle for me to keep my head above water most days - but I am succeeding. Building a niche for myself, building a circle of friends. Keeping busy. Started watercolor painting classes 4 weeks ago. I am horrible at it! But I am meeting some very interesting people in class and the conversations are wonderful! I'm even looking for more classes to take.
While I am sad at his life and lifestyle, I am blessed with mine. Staying busy, keeping active, finding new things to be interested in - that may be the key to surviving life with a non-compliant diabetic!
DW
Sunday, June 12, 2016
Summer is just flying by!
Busier than ever! Maybe it's good that there's just not time to worry about diabetes. :) Things are fairly stable and that's great! My flower beds, sisters, art - all keep me busy. Decided to take some classes this summer. That might have been a mistake! :)
To Tom's wife - how was the surgery? My youngest sister has developed what is called a "frozen shoulder". She is doing PT and massages and everything in order to avoid surgery. Her docs said it might take 3 years to "unlock". She's pretty frustrated! So glad to hear you made it to Israel - my favorite vacation spot. Couldn't go this year as sis can't travel. Maybe next year.
Hubby is declining slowly. He has started having trouble walking. His knees give out after a few steps. So he walks, then sits, then walks. He has had several sugar lows this spring. Most of the time he recognizes them. Tonight - not so much. His activity level has come to a halt. He continues to have optical migraines where he goes blind for 2 hours. I am doing all of the driving these days.
I'm still walking 3 miles every day. Between that and my gardens I think I'm pretty active.
Have a good friend her who's hubby is diabetic. We compare notes a lot. He had to have a pacemaker put in a couple of years ago and I think he's under age 60. He has been on a pump for quite some time. Oxygen is not getting to his brain and he has developed dementia/Alzheimer's. He walked away from their home, caught a ride with complete strangers, ended up on the edge of town, but safe, so now she is looking for a home to put him in or hospice. The doctors want to turn off his pacemaker. So sad. Just 3 years ago he was still working. It can happen so fast! (She's self employed in retail and has to keep her business open to pay the bills).
It's going to be a hectic summer as I'm speaking at a conference in Seattle and have lots of prep for that. I'll try to check back in from time to time. We are doing ok.
DW
To Tom's wife - how was the surgery? My youngest sister has developed what is called a "frozen shoulder". She is doing PT and massages and everything in order to avoid surgery. Her docs said it might take 3 years to "unlock". She's pretty frustrated! So glad to hear you made it to Israel - my favorite vacation spot. Couldn't go this year as sis can't travel. Maybe next year.
Hubby is declining slowly. He has started having trouble walking. His knees give out after a few steps. So he walks, then sits, then walks. He has had several sugar lows this spring. Most of the time he recognizes them. Tonight - not so much. His activity level has come to a halt. He continues to have optical migraines where he goes blind for 2 hours. I am doing all of the driving these days.
I'm still walking 3 miles every day. Between that and my gardens I think I'm pretty active.
Have a good friend her who's hubby is diabetic. We compare notes a lot. He had to have a pacemaker put in a couple of years ago and I think he's under age 60. He has been on a pump for quite some time. Oxygen is not getting to his brain and he has developed dementia/Alzheimer's. He walked away from their home, caught a ride with complete strangers, ended up on the edge of town, but safe, so now she is looking for a home to put him in or hospice. The doctors want to turn off his pacemaker. So sad. Just 3 years ago he was still working. It can happen so fast! (She's self employed in retail and has to keep her business open to pay the bills).
It's going to be a hectic summer as I'm speaking at a conference in Seattle and have lots of prep for that. I'll try to check back in from time to time. We are doing ok.
DW
Wednesday, April 20, 2016
Response to "Managing"
"Managing" wrote:
My husband does and it is almost unbearable to be around him because of all the stupid things he does and says. I worry that it will also make him be so forgetful that he will get himself into real trouble in the shop around tools and vehicles, etc. But he will not listen to my words of warning.
The weird thing about our ongoing grief is that it is such a constant that I have trouble recognizing what "normal" would be. I am not sure to what degree this has affected my personality. Am I even able to make good decisions anymore? I love this man and am commited to helping him but as he loses his ability to think straight his requests of me become less and less "Do-able" or he'll forget and change them. I think that MJ makes his mental state much harder for me do deal with. But for some reason it is what they want. Maybe to run away from reality?
All of this combined with his anger and hate for everything and everyone has pushed us further apart than ever before. Each consecutive step that separates us makes me feel guilty that this man who used to be my partner in crime - now sometimes straight up disgusts me. It makes me not like myself very much. I pray for him and now I pray for myself to find the love and kindness and patience to love him and forgive him his human flaws.
Looking at your timeframe makes me so scared that I will not make it through this. It is so depressing already. And I do things that I need in my life and get out a couple times a week. I'm thinking that getting a place of my own for some of the time may be necessary to get away from it and refresh myself enough to come back at it with a kinder, more patient and loving attitude. Do you think that will help me to make it through the long haul?
If you have read past posts, you know that hubby left me for 3 years. All I can say is that in retrospect, it was a gigantic blessing. Not anything I had planned for. But I certainly needed the respite and while I'm not sure it will help me through the long haul....it's gave me time to grieve my mom's death.
It also taught me that he was well enough to take care of his father ....and himself. He's been back since last August and I do not take care of him. I worry about them. But if he was "well" enough to leave me to care for his father....he's well enough to take care of himself now.
And I did put my foot down in a couple areas. If he ever threatens to leave me....he best be prepared to do so as I will be packing his stuff up that moment. That used to happen on a weekly basis. Not anymore! If he gets mad and demands that I let him out of the car...I will...and I will not go back for him. So that has changed a few things.
I keep telling myself that he picked his father over me. For three years. Thus, now, I have the absolute right to pick my life over him. That was his choice. This is mine. And it does make things different!
DW
Sunday, April 17, 2016
Glucose inbalance once again
You'd think I'd be prepared. But I never am. Increase in sugar lows. Too much insulin? Too little food? He almost passed out twice this week.
Skin tone is very gray.
Other problems going on. Many nights of no sleep - awake vomiting. So I don't sleep.
You'd think I'd be prepared. After his heart attack, bypass surgery, spinal fusion surgery...you'd think I'd be prepared for anything.
But I never am. And I doubt I ever will be.
I was thinking about grief. I know 10 people who have passed away so far this year. No one really close - cousins, quasi-kin, etc. Yet I watch the survivors grieve. Each in very different ways.
A couple of close friends have spouses who have had heart attacks - I watch their panic set in.
Grief can make you do stupid, stupid things. I've been there. I've done them all.
Hubby said he doesn't want to travel any more. I love to travel. So I will grieve that "loss". Is one loss bigger or smaller than another? I'm not sure anymore.
I no longer know how to help those who are in "new" grief. Perhaps because there has been so much in my life? Words do not comfort. You just get up and get on with life. Or you don't. It's about that simple! I turn to my faith and I get up every single morning and start a new day with a song in my heart. But I'm realizing that others do not understand that. They think I should be lost in grief. These days, I give it "10 minutes" - then get on with life. Otherwise, I doubt I could function!
It's been a rough night. But a new day starts in about 3 hours. And I will get up, put on my happy face, and start the day in a positive mode. It's only here, in this blog, that I share my sadness, my grief, my feelings of hopelessness. That way, I can let go of them and get on with life.
Seems to be working pretty well. :)
DW
Skin tone is very gray.
Other problems going on. Many nights of no sleep - awake vomiting. So I don't sleep.
You'd think I'd be prepared. After his heart attack, bypass surgery, spinal fusion surgery...you'd think I'd be prepared for anything.
But I never am. And I doubt I ever will be.
I was thinking about grief. I know 10 people who have passed away so far this year. No one really close - cousins, quasi-kin, etc. Yet I watch the survivors grieve. Each in very different ways.
A couple of close friends have spouses who have had heart attacks - I watch their panic set in.
Grief can make you do stupid, stupid things. I've been there. I've done them all.
Hubby said he doesn't want to travel any more. I love to travel. So I will grieve that "loss". Is one loss bigger or smaller than another? I'm not sure anymore.
I no longer know how to help those who are in "new" grief. Perhaps because there has been so much in my life? Words do not comfort. You just get up and get on with life. Or you don't. It's about that simple! I turn to my faith and I get up every single morning and start a new day with a song in my heart. But I'm realizing that others do not understand that. They think I should be lost in grief. These days, I give it "10 minutes" - then get on with life. Otherwise, I doubt I could function!
It's been a rough night. But a new day starts in about 3 hours. And I will get up, put on my happy face, and start the day in a positive mode. It's only here, in this blog, that I share my sadness, my grief, my feelings of hopelessness. That way, I can let go of them and get on with life.
Seems to be working pretty well. :)
DW
Wednesday, March 30, 2016
Diabetes and marijuana
It doesn't really matter whether you live in a place where it's legal or not.....anyone can get it with very little trouble. And hubby does. Am I watching him turn into a pothead? What impact does it have on his diabetes? What does it do to lungs/body that are being eaten away by high blood sugars?
I don't have any answers. I'm watching. Sort of like watching a water...wondering when it's going to boil? It does ease his pain. He sleeps better. He only uses it at night before going to bed. But he doesn't get up til about 10 am. His is lethargic.....mostly an "I don't care" attitude.
In some ways, I think it makes living with him easier. The mood swings aren't as great.
But the "forgetfulness" is at an all time high.
Any drug that numbs the pain has to numb 100% of the sensors in the body and that includes memory, response time, thought processes, etc.
Most forgetfulness can be forgiven. But forgetting to lock the door? Not so much! Forgetting what you said....problem causer.
Did he tell his physical that he is using MJ? Of course not. And I'm sure that would have an impact on his treatment plan. I can't fix stupid - I hope I have at least learned that. He's been using pretty heavily for the last 8 months. I do see him becoming more mellow. I am watching closely. Not sure there's anything else that I can do.
If you've had experience with a non-compliant diabetic who uses I'd love to hear your experiences.
DW
I don't have any answers. I'm watching. Sort of like watching a water...wondering when it's going to boil? It does ease his pain. He sleeps better. He only uses it at night before going to bed. But he doesn't get up til about 10 am. His is lethargic.....mostly an "I don't care" attitude.
In some ways, I think it makes living with him easier. The mood swings aren't as great.
But the "forgetfulness" is at an all time high.
Any drug that numbs the pain has to numb 100% of the sensors in the body and that includes memory, response time, thought processes, etc.
Most forgetfulness can be forgiven. But forgetting to lock the door? Not so much! Forgetting what you said....problem causer.
Did he tell his physical that he is using MJ? Of course not. And I'm sure that would have an impact on his treatment plan. I can't fix stupid - I hope I have at least learned that. He's been using pretty heavily for the last 8 months. I do see him becoming more mellow. I am watching closely. Not sure there's anything else that I can do.
If you've had experience with a non-compliant diabetic who uses I'd love to hear your experiences.
DW
Wednesday, February 03, 2016
Ulcers and other such nonsense
I am convinced that a non-compliant diabetic spouse can give you an ulcer! And I am determined that it doesn't happen to me. But I have my days, that's for sure. Can't believe it's been a month since I last updated.
He went without any insulin for 5 days (last post) and he was a complete mess....not to mention my emotional status! But we finally got his health insurance straightened out, and got the insulin. You know, he has been on disability for 3 years now and a year ago, he went on Medicare.....and that was the beginning of a year long battle with our private insurance. They couldn't handle technologically that I am the payor, I am not on Medicare, he is the spouse, on Medicare. It took 5 people, 4 departments and 3 months of me calling or emailing each person every week to follow-up. But finally, we are on the right track. I even filed a grievance with the insurance company.
The end result is that his insurance is correct now, with the right co-pays and benefits. However, he overpaid the entire past year and I do not have the energy to request a review of that....it's paid for, I'm going to drop it.
Completely exhausting going to battle with a private insurance company. But well worth it. His $667 Humulin R-U500 now costs him $40 (2 month supply). His former $50 office visits are down to $10. The Medicare gap is gone. And he would not have any of these benefits if he was not married to me. Yeah, I sort of let him know that! LOLOL!!!
So now that we are done with the whole insurance/Medicare issues....I'm ready to get back to my life. Hubby spends most of his day in his room. Playing a lot of computer games. Watching reruns of sports. I'm writing a history book, upcycling clothes, walking with my sister, doing Bible Study, creating art.....keeping as busy as I can, creating an active live (yes, even at this age) in order to have a life outside of diabetes. I'd say it works 90% of the time. And that is good. I am setting goals, working to achieve them, trying to maintain as "normal" a routine as is possible. And working on my weight again. I am up 15 pounds since he moved home and starting the long journey of getting that back off. For the most part, life is good for the moment, yet I realize that it can all change in a heartbeat!
DW
He went without any insulin for 5 days (last post) and he was a complete mess....not to mention my emotional status! But we finally got his health insurance straightened out, and got the insulin. You know, he has been on disability for 3 years now and a year ago, he went on Medicare.....and that was the beginning of a year long battle with our private insurance. They couldn't handle technologically that I am the payor, I am not on Medicare, he is the spouse, on Medicare. It took 5 people, 4 departments and 3 months of me calling or emailing each person every week to follow-up. But finally, we are on the right track. I even filed a grievance with the insurance company.
The end result is that his insurance is correct now, with the right co-pays and benefits. However, he overpaid the entire past year and I do not have the energy to request a review of that....it's paid for, I'm going to drop it.
Completely exhausting going to battle with a private insurance company. But well worth it. His $667 Humulin R-U500 now costs him $40 (2 month supply). His former $50 office visits are down to $10. The Medicare gap is gone. And he would not have any of these benefits if he was not married to me. Yeah, I sort of let him know that! LOLOL!!!
So now that we are done with the whole insurance/Medicare issues....I'm ready to get back to my life. Hubby spends most of his day in his room. Playing a lot of computer games. Watching reruns of sports. I'm writing a history book, upcycling clothes, walking with my sister, doing Bible Study, creating art.....keeping as busy as I can, creating an active live (yes, even at this age) in order to have a life outside of diabetes. I'd say it works 90% of the time. And that is good. I am setting goals, working to achieve them, trying to maintain as "normal" a routine as is possible. And working on my weight again. I am up 15 pounds since he moved home and starting the long journey of getting that back off. For the most part, life is good for the moment, yet I realize that it can all change in a heartbeat!
DW
Tuesday, December 29, 2015
So bad it's almost funny
If you have followed this blog over the years, you will know that I have given up. My mantra, "you can't fix stupid"!
So we were at the in-laws place finalizing some estate stuff and left to drive home Sunday afternoon. We were packing up and I started asking him questions, "do you need to take...." and he got pissy and said, "I have my checklist and I will get it when I get to the list."
I shut up and packed up my stuff.
We got 6 hours away and he realized he did not pack his insulin. I had seen it in the refrain....but it was on his "check list".
We found a hotel and yesterday morning, he called the pharmacy. Made up a lie rather than simply telling them he forgot it 6 hours back. They needed to check with is doc to see if they could refill it.
I drove the next 6 hours. Got to the pharmacy which is an hour away from our home and they had gotten the doc's ok, but they don't stock Humulin R U-500 - they would have it today.
Today, he drove the hour and they had no record of any phone calls. No Humulin. Will have it tomorrow after 1 pm.
That means he missed 40U Sunday, 80U Monday, 80 U today and at least 40U tomorrow.
Yep, he is about a cranky as I have ever seen him. Pretty much slammed the door shut to his room, not speaking to me, grumbling, snorting, trying desperately to piss me off every time he surfaces.
But this is his problem, not mine. All of it. I went to see my sisters today and we had a great time. Then I unpacked most of what I brought home and now I'm cleaning the teapot, bread machine, etc., that he had been using down there the last 3 years. I swear, the man never cleaned a thing. The toaster oven (it's a $350 oven or I'd throw it away) is so bad....but I'm making progress. Exhausted. But ever so grateful to be home.
Am I worried that he might go into a coma? Of course I am. I'll deal with it if and when it happens. There is nothing I can do to make him think, reason, plan....I have learned. He is like a bull in a china shop - going to do it his way, every step of the way! I just sit back and watch. It is his body, his disease, and he won't listen to me, gets upset when I remind him of things or ask him about things.....so yep, I simply sit here and wonder why anyone would treat their body the way he treats his.
Most of the drive home, I pondered his need to lie to the pharmacy and how much he must be lying to me. I wonder if he lies because he lies to himself about his diabetes? Interesting thought.
At least we are home. :)
DW
So we were at the in-laws place finalizing some estate stuff and left to drive home Sunday afternoon. We were packing up and I started asking him questions, "do you need to take...." and he got pissy and said, "I have my checklist and I will get it when I get to the list."
I shut up and packed up my stuff.
We got 6 hours away and he realized he did not pack his insulin. I had seen it in the refrain....but it was on his "check list".
We found a hotel and yesterday morning, he called the pharmacy. Made up a lie rather than simply telling them he forgot it 6 hours back. They needed to check with is doc to see if they could refill it.
I drove the next 6 hours. Got to the pharmacy which is an hour away from our home and they had gotten the doc's ok, but they don't stock Humulin R U-500 - they would have it today.
Today, he drove the hour and they had no record of any phone calls. No Humulin. Will have it tomorrow after 1 pm.
That means he missed 40U Sunday, 80U Monday, 80 U today and at least 40U tomorrow.
Yep, he is about a cranky as I have ever seen him. Pretty much slammed the door shut to his room, not speaking to me, grumbling, snorting, trying desperately to piss me off every time he surfaces.
But this is his problem, not mine. All of it. I went to see my sisters today and we had a great time. Then I unpacked most of what I brought home and now I'm cleaning the teapot, bread machine, etc., that he had been using down there the last 3 years. I swear, the man never cleaned a thing. The toaster oven (it's a $350 oven or I'd throw it away) is so bad....but I'm making progress. Exhausted. But ever so grateful to be home.
Am I worried that he might go into a coma? Of course I am. I'll deal with it if and when it happens. There is nothing I can do to make him think, reason, plan....I have learned. He is like a bull in a china shop - going to do it his way, every step of the way! I just sit back and watch. It is his body, his disease, and he won't listen to me, gets upset when I remind him of things or ask him about things.....so yep, I simply sit here and wonder why anyone would treat their body the way he treats his.
Most of the drive home, I pondered his need to lie to the pharmacy and how much he must be lying to me. I wonder if he lies because he lies to himself about his diabetes? Interesting thought.
At least we are home. :)
DW
Thursday, December 24, 2015
Eyesight and filth
I understand that diabetes will attack the eyes. Hubby has been having events which he calls white migraines. He will get the headache, everything goes white and he cannot see.
But I'm wondering about other vision. He had cornea transplants at age 30 and now wears hard lenses over soft lenses in both eyes which are supposed to correct his vision to 20/40.
We are at the in-laws working on some estate issues. I pray this is my last trip here. I left in May and he came home in August. He's been here for 2 weeks this time and I flew in yesterday.
I cannot begin to describe how filthy the toilet is. Stuff piled everywhere in this tiny place. It's like he comes in and just lays things down wherever there is a spot.
So I have started cleaning. Can he not see the urine stains on the rug under the toilet? Or is it that he just down't care? Can he not see that the stopper in the sink is covered with toothpaste skum? Or does he just not notice?
I am packing up everything that is mine and taking it home this trip. So do I even care? He can keep this place as a place to stay when he comes to visit his brother. Our "real" house is quite small and I don't have room for much, so I will leave everything here except for personal items. I simply can't keep up with the cleaning - I just cleaned his bathroom at home when he left for this trip!
The piles that I have to look at are gone, the bathroom is clean. I have packed several boxes already. I think I'm done for the day. And yes....it's the day before Christmas. Not exactly what I planned to be doing but a bathroom at McDonald's was cleaner than this one!
May 2016 bring great joy to your life and may your non-compliant diabetic have their blinders removed!
DW
But I'm wondering about other vision. He had cornea transplants at age 30 and now wears hard lenses over soft lenses in both eyes which are supposed to correct his vision to 20/40.
We are at the in-laws working on some estate issues. I pray this is my last trip here. I left in May and he came home in August. He's been here for 2 weeks this time and I flew in yesterday.
I cannot begin to describe how filthy the toilet is. Stuff piled everywhere in this tiny place. It's like he comes in and just lays things down wherever there is a spot.
So I have started cleaning. Can he not see the urine stains on the rug under the toilet? Or is it that he just down't care? Can he not see that the stopper in the sink is covered with toothpaste skum? Or does he just not notice?
I am packing up everything that is mine and taking it home this trip. So do I even care? He can keep this place as a place to stay when he comes to visit his brother. Our "real" house is quite small and I don't have room for much, so I will leave everything here except for personal items. I simply can't keep up with the cleaning - I just cleaned his bathroom at home when he left for this trip!
The piles that I have to look at are gone, the bathroom is clean. I have packed several boxes already. I think I'm done for the day. And yes....it's the day before Christmas. Not exactly what I planned to be doing but a bathroom at McDonald's was cleaner than this one!
May 2016 bring great joy to your life and may your non-compliant diabetic have their blinders removed!
DW
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