Sunday, November 09, 2014

November update

He was here for a week this month.  First time since January.  Things actually went just fine between the 2 of us so perhaps caring for his father and being gone for over 2 years has been good.  He has to come back to get labs and see his doc in order to continue to get his prescriptions.

A1C was at 10.2.  Not good at all.  But looking back at the grid I used to keep, he has been at 8 and 9 most of the time since Feb 2010, which is when he had his heart attack.

His cataracts are growing, but they prescribed new contacts.  He had cornea transplants 30 years ago and they don't want to do cataract surgery until they have to.

He went on Medicare with his disability.  Thought he was part of the "donut" where he would have to pay very high Rx for the last 3 months of the year.  However, he's on my HMO which protects him from that donut and he won't be paying $2500 per month for his insulin (Humulin RU 500 concentrated) - not on anyone's formulary.  So he needs to stay "married" to me.  I suggested that he needs to "keep me happy".  LOL!

I spent the summer gardening and decided to lose some weight.  Down 32 pounds and still working on it.  Walking at least 18 miles a week.  Feels great!  I am learning how to not eat for comfort.  I have given up all soda and sweets, red meat and most flour.  Throwing myself into raising flowers was so therapeutic this summer - I loved it!  Already making plans and lists for my gardens next summer.  And some major projects this year.  I put in 1500 pounds of flagstone making a patio and path.  And I hung new "used" kitchen cabinets in the garage along with putting up slat wall to give me more storage.  I also put in all new closet systems in 4 closets in the house and added 2 in the garage.  Wow!  I think I did some work this year!

I walk with one sister every day and see the other sister 3-4 times a week.  I've been making jewelry and just recently returned to leather crafting.  It's been a really great year and I'm looking forward to the next few months.  I'm getting close to my weight loss goal, getting healthier both physically and mentally.  Enjoying my reprieve from caregiving.  Been a great year!

Sunday, August 31, 2014

Summer's over!

And I'm just getting back to this blog.  I received this comment:

Your blog has helped more than anything else I have read. Just knowing that this can go on for years and years gives me the courage to know that I MUST protect my own life. I still can't help wondering about the future and how I will make it, but at least I won't let it take me down with him. Thank you! I am very curious if after their spouse's passing, anyone out there who has gone through the long years of decline has been successful in forgetting those horrible things and remembering just the wonderful spouse they used to have before Diabetes changed them. Or do the long years of horrible weird dying things just stay in your memory of that person as the main part?


I think it must be like childbirth.  36 years later...I barely remember what happened.  I don't remember the pain even though I know I had 23 hours of it!  Hubby has been with his dad for almost 2 years now and I know I'm glazing over the diabetes issues (until I sit and read what I've written about it!)  I no longer have to deal with it so I just don't think about it.

That being said.  Hubby still calls every day.  He is coming for a couple of weeks in October.  He hasn't been here since January and needs to visit all his doctors to get his meds refilled.  His dad, another non-compliant diabetic, had a sugar crash not too long ago.  Hubby called me in a panic saying he thought his dad was going to die.  The hospice nurse came and informed him it was a sugar crash.  

So think about it....a diabetic really would not know how to recognize the symptoms of a sugar crash because they do not see what happens to them when they are having one.  Interesting, huh?

I waited a couple of days to make sure his dad was ok and then asked hubby if he remembered the sheer panic he had been in.  He did.  So then I asked him if he realized that is exactly what I feel every time he went low.  He said no.  So I think this is a good experience for him as he is getting to feel everything I have been through for the 5 years before he left.  He might understand a little better what others have to deal with when he crashes.  I think he's also getting a good feel for what it's like to care for someone with diabetes.

He still says that he's moving back here when his father passes away.  I still say, "we'll see."  His dad is just now 80 and while he does have hospice care, he could live for a couple more years.  Or he could go tonight.  

In the meantime, I've had a wonderful summer of gardening, growing luscious flowers, creating paths, making hidden gardens.   Have decided it's good to be outside as much as you can!  Went for my physical and my doc said I need to lose weight so I'm down 22 pounds and it feels wonderful.  Going to work on firming up my muscles next but I've been walking 3 miles 4 times a week and loving it.  Have a sister that walks with me so that makes it more enjoyable.   

Think it's going to be a great September!!!

DW

Tuesday, June 10, 2014

From Wife of a Diabetic 2

Here's a note from Tom's Wife:

Hi DW, I had a major computer problem and in the recovery process, I lost access to my blog. Google tells me it is not recoverable -- no one can access it at all any more! :( So I am requesting that you post this the next time you are on line (its a good thing that's not very often anymore because your life has changed for the better!) I don't know if I am going to create a new blog now. Tom's health is good, mine is getting better and the blog is not as important to me as it once was. (I am guessing the same for you) Do you find it interesting that there are more options for people today than when you started? I am ever grateful for your blog. it helped me understand that I was not alone. I wish you all the best and will check in with you from time to time in the future if you even look at this. Take care, Tom's Wife


Dear Tom's Wife,

Have you checked your blog today because I can see it and read it just fine.  I think sometimes Google has a "glitch" and in a few days things get back to normal - if google has a "normal".  LOL!!!

My life has changed for the better.  I am having a busy summer gardening.  The flowers are gorgeous and digging in dirt if very therapeutic.   The rain comes and the weeds grow even faster.  I have figured out "tune radio" and carry music in my pocket all day long.      Hubby is still living with his father.  I am no longer sure who is taking care of who in that situation. 

 In September, hubby will have been on disability for 2 years and he will go on Medicare.  He called the other day asking if his Social Security was going to end in September.  He was very concerned.  And confused.  I simply couldn't comprehend why he was asking me this question and then I realized that he must be in a sugar low.  It's pretty hard to recognize them via phone.

He spends most of his days lying in bed watching TV.  He does take his father to his medical appointments and they continue to try to port his dad for dialysis - which his father is refusing.  He is sort of the opposite kind of diabetic, very tiny man, all skin and bones.  I am simply grateful that I am not there having to live with 2 generations of diabetes.

I agree, there are many more options these days.  There are many more resources.  There are numerous support groups.  However, some of the same antiquated thoughts still exist.....that the healthy spouse should take care of the non-compliant spouse to the extent that we "manage" their disease.  The "guilt" that a non-compliant diabetic tries to impose on their spouse.  The "denial" people have about calling this a "disease".....the list is endless.  Some things never change.  

Yet no matter how much "support" one can receive, I still believe writing your personal story, sharing your personal experience, putting your thoughts down into words....that's what heals a healthy spouse.  :o)



DW

Wednesday, May 14, 2014

Time flies

Hard to believe that nearly 3 months have passed and I haven't blogged.  Life is very good.  I am busy with my gardening.  Busy with my sisters.  Hubby says he wants to come for a visit in August or October...he's still a thousand miles away staying with his dad.  Hard to believe he's been on disability for 2 years and now we start the process of getting him on a Medicare plan that will pay for his humulin r u 500 concentrated.  About $431 per month for the cheapest plan in his state.  I'd like to get him something there so he can get labs done locally.   Lots of research to do next week.

Sort of my life at the moment...if it's not digging in the dirt...it can wait til next week!!!

Wednesday, February 19, 2014

Another visit - went well

Hubby was here for about 10 days.  Everything went well.  He visited his docs, got his prescriptions renewed, had his labs done.  And he still has not "allowed" me to know the results.  I just find that pretty suspicious!!!  But I have decided this is part of letting go.  There is no reason for me to know what his labs are.  As long as he is not living here in the same house with me.  We were very "polite" to each other during his visit.  I was gone for 4 days to an art retreat so we really didn't have much time together.

I often wonder what will happen when his dad dies.  Does he think he can just move back in with me after this long of a separation?  In my mind, the only reason we are not divorced is because he needs my health insurance.  And while he will qualify for Medicare at the end of this year, I have been researching and it does not appear that his Humulin RU500 is on any Medicare formulary, so he will need to stay with my insurance. 

There is some conflict in my mind knowing that I cover him for his health insurance and he will not let me know what his labs are.  That will change if he wants to return here. 

I suppose lots of things will change.  But I cannot worry about it until then.  :o)  In the meantime, I'm getting ready to take an overseas vacation with my youngest sister, I've started working 1-2 days per week in a local craft store, I'm having fun designing pieces of art and in another month or so, I can start gardening for this year.  Well, I suppose we should wait until the middle of May the way the weather has been going in most parts of this country.  :o)

My health remains good.  My 2 sisters both quit their jobs last week, so that gives us more time to share together.  I'm happy.  Life is good.  :o)

DW

Wednesday, January 22, 2014

in answer to my question

Deb wrote:

t's me again. Ironically I am a health care professional in dialysis and very familiar with ESRD. Because of this I also know too well the outcome of many noncompliant diabetics.

Diagnosis of ESRD is only conclusive through examination of a person's blood work, of course. Some physical symptoms include fatigue, muscle aches and cramping, dry and itchy skin, and lessening of urine output. Many ESRD patients still make urine. The blood work tells most conclusively whether the kidneys are efficient in removing toxins from the body. Most diabetics, especially uncontrolled ones, should also be under the care of a nephrologist in order to monitor the level of kidney function. Once it goes below a certain level, hemodialysis is indicated.

The majority of hemodialysis patients are such due to uncontrolled diabetes. You would not be surprised to learn that even that does not ''wake up'' most of them to become compliant.

''Uremia'' also manifests in mood disturbances, mental confusion, depression, and even hallucinations if severe enough.

my reply:

Hubby has been diagnosed by his physicians as Stage 4 ESRD.  He is under the care of a nephrologist.  He has said when the time comes, he will refuse dialysis.  He's had 8 treatments (when he had his spinal fusion surgery and his kidneys completely shut down) and he says he won't go through that again.  He's the 1 in a million who actually felt the blood going through his veins and had severe exhaustion after each process.   

I have researched uremia and know what he will go through when he is there.  It's between stage 4 and then that I'm wondering about.  

He does seem to have a lot of memory problems.  I'm not sure it's mental confusion, or just loss of memory.  He's been in depression for at least 3 years.  And I think I need a better description of mood disturbances.  I could joke that his mood is always disturbed.  :o)  As for mood swings - yep - he can be a sweetie one moment and a horror 10 minutes later.  

He is coming home for about 10 days next week to make another round of doctor's visits because they are refusing to renew his prescriptions without a visit.  His last labs were 9/13 and were:
A1c 9.1
Triglycerides 1441
gfr 36.1

It will be interesting to see what they are this time.  As it turns out, I will be gone to an art retreat most of the time that he is here.  

Thanks, Deb, for replying.  I was sort of hoping that a spouse who has lived through the end times could share their experiences with us.  And while I'm sure each story is different, it seems to be something that no one writes about.

DW

Tuesday, December 31, 2013

I know....I know....

it's new year's eve and here I am writing another post on this blog.  Yes, I live a boring life!  LOL!!!

First - I need your help.  Does anyone out there have experience  with ESRD?  What are the signs of the final end stages?  I have read about it, I'm just looking for personal experience - not textbook information.

Hubby is still gone - still taking care of his dad. He has been gone 1 year, 3 months and 2 weeks.   This week he got sick.  He has not been able to keep anything down in the last 3 days.  Everything he eats and drinks comes back up.  No, he will not go to a doctor.  I know that it could just be the flu, but he has had so many episodes like this that I wonder if his digestive system is shutting down.  Neuropathy of the stomach?  intestines?

He said this evening that he is feeling a little better.  Well, I think that he hasn't had anything going in for 3 days so he should be at the point where there is nothing left inside to come back up.  He said that his ribs hurt and I reminded him that a couple of years ago, he broke his ribs coughing.  

Second, I'm sharing a comment from a reader:

I've followed your blog for awhile now and I wanted to let you know that you have helped me cope in my own struggle to try to co-exist with a non-compliant diabetic. After 26 years of watching the downward spiral of my loved one I can truly say that I have been able finally to detach and try to recover my own life lest I lose it due to stress and worry. She continues to eat whatever and however she wants, refuses to take her meds properly or at all, won't go to the doctor, won't exercise, etc. I know the worst case course of this disease and she is on it and knows it and refuses to change. I am done and your example has given me the strength and courage to step away and save my own life. Thank you for your sharing and courage. God bless

I have to say that this past week has been an interesting for me.  Probably my usual end-of-year review.  I'm an artist.  And I have always admired Laurel Burch.  However, I had absolutely no idea that she had passed away.  At the end of 2007!!!  And when I did the math....that is about the time that hubby started getting ill, having complications from his diabetes....about the time that I sort of took a hiatus from my art and started caring for him almost full time.  It was quite a shock to realize that the last 6 years of my life have literally been on hold.  I wonder if I should have said I was done before I ever started???

I continue to get back some of the person that I used to be.  I now know that while I feel so sorry for him, he is not here, he is 1000 miles away, and it is not my job to worry about him, or help him out.  I can (and am) a good listener.  He can call me anytime and I will listen and then try to remind him of things he has forgotten.  We do have a history together.  We still talk 2-3 times a day.

My youngest sister and I are planning a vacation together.  We are going overseas and it will be our 3rd trip to this destination.  In the past, I have planned everything about every trip and this time, I turned it all over to her.  I told her that I am just not who I was.  Not yet.  And she said she understands.  Part of it is due to mom's death.  I am coming out of that grief.  But I am also coming out of the grief that this marriage is over.  Yet at the same time I know I am so much better than I was a year ago.  I'm in a much, much better place.  I have found my art again.  I am being creative again.  I am discovering things such as the death of someone that I completely admired.  I am taking care of myself.  my body AND my spirit.

Which brings me to tomorrow.  Someone sent me a great quote.  Tomorrow is the first page of a blank book....write an amazing story!  I feel so refreshed and energized.  I want to write an incredible story in 2014.  I want to have an incredible year.  I pray that my grieving is over.  I know that we all have to go through it.  I know the steps well.  I am looking at midnight as a door.  And while I cannot shut the door to the past completely (not sure I would really want to do that),   I am opening the door to 2014 wide.  I EXPECT it to be a great year!!!  I am praying that God will bless me and make me a blessing to others.  I pray for anyone who is living with a non-compliant diabetic.  That God will bless you and lift you up and give you the strength where I failed.  And my failures have been huge.  

I pray that I can continue to share the knowledge I have of living with a diabetic....even having a long distance non-relationship with one, and that my life might help you a little.  I thought when he told me that he was staying to take care of his dad, that my life with a diabetic had stopped.  But not really!  The stress is less.  My life is much better.  The diabetic spouse is in the background now.  Backgrounds by nature of the term are always there - they never completely totally go away!

May each of you have a wonderful 2014!

DW