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

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.

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

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

Monday, November 14, 2016

Balance

Managing wrote:

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

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