Friday, April 29, 2011

Am I Better Off or Worse Off Than last Week (Month, Year, Decade)?

Here is an interesting question for all of us sister wives.  Am I better of than last week, month, year,or  decade?

Let's start with decade: 2001- much better, working full time, self employed, large staff, own home- no mortgage, healthy husband, younger and thinner,  investments and income property. 

Last year:  Costs out of sight, H no longer working, income way down, health costs soaring, house gone and in hated condo.  Subject to rages, loveless marriage and more rages.

Last week: bank balance lower, in elderly housing , rent due in a couple of days (have to liquidate more assets not making it .  Rage is a bit better last couple of days.  Less depressed than a couple of days ago since there is some peace.

When did things get bad?  Five years ago marks the beginning of the plunge. H starts to get sicker  Three years ago things start to get really bad and now we have today.  Insulin injections started a year ago and the worst of it really starts and my freedom and peace go.

I should also point out that I am paying for my mother's care since she refused to plan and I can not care for her too 24/7.  Her gifts to my children were  too large and disqualified her from medicaid forever.   They each have paid for homes, I have this mess.
Is there a way to turn the clock back?  Anyone have a time machine?  I could sure use one.

Running Hot

H's latest thing is that he always thinks he has a fever.  yet, he refuses to wear cooler clothes and is often drenched in sweat. He refuses to wear short sleeves.  Makes no sense to me.  Every sneeze to him now seems like imminent pneumonia.  He keeps asking me to feel his forehead to see if he has a fever, over and over.

I wonder if it is his endocrine system being  out of wack,  I will ask his doctor.

Still very little sleep.  I was up for the royal wedding this am without any need for an alarm clock.  He has been up all night again.  He has been some what calmer.  We will see how long that lasts this time.

Wednesday, April 27, 2011

Another Hard Day's Night

H was up all night with his stomach problems which I assume are all related to the garbage he has been eating non stop.  He just doesn't get the connection.  If he is up, I am up.  He will not leave me alone when he feels sick.

I got up and gave him a drink of diet soda at 2 am.  My night's sleep was over.  My night time work had begun.  He was ill in the bathroom more than once and I had to clean it before I could use it myself.  Once his stomach had calmed down somewhat, I had to get him some light sugar free food to hopefully keep down.

The only good thing about his being so ill was that he not raging and seemed genuinely thankful for my assistance.  How long this will last is unclear.

Monday, April 25, 2011

Where Love Has Gone

Do I still love him or is it just habit?  Our warm, loving marriage no longer exists.  I have gone from loving wife to room mate and care taker.  His nastiness has become a daily occurrence.  Life is stress and turmoil.

He never so much as hugs me, holds me, kisses me or touches me.  He has become so self absorbed that he never thinks of me anymore, it is always his wants and needs that matter to him, not mine.  And those wants and needs serve to limit and trap me.  They are not like those of  a normal human being.  They are all related to his diabetes and his deteriorating condition.  There is no affection for me and no physical relationship left unless you call injecting him a physical relationship.

He does not respond to me kindly if I am sad or unhappy.  Just the opposite, he will fly into a rage.  I now must try to hide my tears to not set him off.  He has been know to scream at me at the top of his lungs that he will divorce me during his rages.  It can be days and days of non stop cruel comments in which he blames me for everything.

I feel like I have lost my self respect dealing with him.  I no longer feel valued or loved.  Yet what am I to do?  Leave a sick husband and now with vastly reduced circumstances and negative income, how can we survive?  The financial situation for us and all the rest of the problems for him (since he can no longer or will not  take care of himself) hinder a future apart.

How much longer can I endure this  marriage?

Baby Sitting

I am now back where I was in high school, baby sitting.  My grandchild needed care today when his parents were at work and the sitter canceled.  So I left at 6 am to baby sit.  It feels great to get away from the house of horrors. 

I took my laptop and will get my work done when the baby sleeps.  I fed him, changed him and he is now asleep next to me.  I am enjoying the peace and quiet.

H called yelling that I had taken his keys.  I calmly told him to look in his jacket  pocket where he had left them yesterday.  I need a photographic memory to keep track of every item he may demand in an instant.  He always loses things and it is always my fault. 

Taking care of an infant is so much easier and more hopeful than taking care of a non compliant diabetic.  Babies cry and fuss but a simple solution is changing and feeding them.  They love to cuddle and respond to love.  There is hope and a future.  They grow and progress. 

Upon reflection, the opposite holds true for the non compliant  diabetic.  They scream and yell and you can not placate them.  The do not grow and progress, they regress.  They return your love and care with rage.  Often, it seems like there is no hope and they regress.  H sure has. 

Saturday, April 23, 2011

The Wrath of Kahn

H went into a rage tonight.  All I could think of was the old Star Trek movie The Wrath of Kahn since it was so bizzare, it was from another galaxy.  What set him off?  We have income property that is losing us $$$.  A tenant called saying there was a leak in her apartment.  I am evicting (in court last week) 2 tenants in the building for non payment of rent including the one above her when has been flooding the unit under her every couple of days even after I spent hundreds of dollars on plumbers last month.

H overheard the call and started to rage and rage screaming and yelling and of course blaming me.   I would not bite and he got angrier and louder with the tenant still on the phone.  I told him every thing was under control and that the water had stopped.  I was trying to keep my cool and calm him down at the same time.

He got nastier and said all kinds of nasty things.  He was screaming at the top of his lungs  that  I was mismanaging everything.  I walked out of the room.  He has been in bed mind you since eating supper at 5.  He has eaten tons of carbs today.  He does get out of bed to go to the kitchen to stuff himself with cheese and cracker, sting cheese, and who knows what else.  I do not even try to stop him anymore, since if I try to say something he flies into a rage.  I have noticed that he says the same thing over and over when he rages.  Anything can set him off.  The words are cutting and mean but then he has no memory of what was said or what it was about.  It is always verbal abuse never any threat of physical abuse- that is where I would be gone and he knows it. 

It was my misfortune to be in the the bedroom putting away clean laundry when the phone rang.  Note to self: avoid taking phone calls from now on in his presence. 

I wonder if our new neighbors in this senior complex can hear him. (Another reason I wish I had my house back, lack of space and privacy)  I told him that and he still screams unable to stop or not wanting to stop.  Tiny things become major issues to him and his fears seem to take over and control his entire being.

Another Saturday night for me watching tv and dealing with his craziness.  I'd take off and go to the movies but it is too late and he needed his second shot of insulin.  The inmate is truly running this asylum tonight.

Thursday, April 21, 2011

The Future

I get fearful thinking about the future and what it may bring.  My grandmother used to say it is not the things that you worry about that will harm you, it is the things you never worry about that will get you. My fears are many.  First and foremost is what will his health be like as the years go on.  Will I be able to care for him both physically and financially.  If I out live him, as most statistics show, how old will I be if and when that occurs and how will I support myself.

The medicaid folks call this spend down and spending down and down is what is happening to us.  My standard of living has declined greatly as have also my finances.  At the rate we are going, unless I hit the lottery (more likely to get hit on the head by a meteoroid)  we will be broke in 10 years or less.  Savings accounts earn nothing, gas prices are outrageous and everything from food to clothes keeps going up.  I wonder if I should deliberately impoverish us now and make transfers considering the 5 year look back so that if he needs nursing home care, we will not lose everything.

I think of where I will be should I survive him  We now live in senior housing due to his lack of working and his medical condition.  We pay market rates since we are considered "affluent".  How I miss my own home!!!  I do not feel like a "senior" needing senior housing.  I am too young for this.   I want to live like a "normal" adult not a "senior" .  I prefer doing the things I have always done, working, living not as an elderly person.  This is actually a different type of prison.  I want the freedom to not be considered elderly like him.

The home I own is 100 miles from here away from family and friends.  If something were to happen and he no longer lived here such as requiring care would I leave and move to my house?  I do not know.  I just desperately want my old house here back.  I can no longer afford to buy it back or a similar home or even a lesser home back.  That is thanks to the diabetes and lack of income.
 

What kind of a mess am I looking forward to in the future thanks to diabetes?

Wednesday, April 20, 2011

Bathroom Warfare

I am a decorated veteran of the bathroom wars.  I wage battle every day.  Today, I got a purple heart.  As I was scrubbing the tub today, so that I could use it after him, I stubbed my big toe and split the nail down the middle.  This was with sneakers and socks on no less.  It hurt like  a son of a gun and bled too.  What did I do?  I cussed a bit and than taped it up. 

I feel like the bathroom quartermaster.  I must stock huge amounts of toilet paper and cleaning supplies. I keep a supply of plungers too just in case. 

I am a sucker for anything new in cleaning products to cut through the mess.  Any robotic toilet bowl cleaner, no matter what the price, would be snatched up by me. Even a toilet brush grosses me out.   I am thinking of inventing one and selling it to remake my fortune and pay for the cost of diabetes.  Any one interest in buying one?

Old Before His Time

I am married to an old man now thanks to his diabetes.  He looks old and he acts old.  He is tired all the time, sleeps on and off 24 hours a day, takes dozens of pills a day, needs insulin and blood tests, He is always cold and wants the windows closed and the heat pushed way up high.  He no longer skis, plays golf, sails or goes out at night.  He can not work.  He can not do anything by himself any more.  He goes to bed after supper.  He wants me to take care of him 24/7.

He has constant medical appointments and tests and he wants me there at all of them.  He makes old people noises with his gastric, sleep and respiratory problems.  He smells old despite daily showers.  He walks like an old man with a shuffling gate.

He acts like he is in his 80s even though he is in his early  sixties.  When I think of my dad at that age, he was working and enjoying life.  My grandfather worked full time until almost 90.

One frightening thing happened this week, his seven year oldersibling was placed, by a spouse of many years who could no longer cope,  in a nursing home due to  Parkinson's and diabetes.   Is this what I have to look forward too?

Another Long Night

H was up all night.  He was focused on his throat.  he has had thyroid problems for years, Hashimotto's, and swears that he knows when it is out of kilter.  He has not received the results of his latest blood work so I told him to call the doctor.  He got panicky and refused.  he deals with things now by sticking his head in the sand.

I got up at 4 and went into a filthy bathroom.  Double yuck.  I was scrubbing away as usual.  I think I ought to buy stock in Chlorox !!!   He kept escalating about his thyroid.  Then he started to rage that I was not "concerned enough "about his health.  Right.  Anyone have any sure fire ways to deal with a diabetic's rage?  I figure he was low given the hour, so I tried asking him to check his blood. (He will not do that alone).  It provoked more rage. 


I have to get some work done today.  I need to earn some money.  Worrying about his thyroid at 4 am is not going to accomplish that.

On top  of that my mother had a melt down at the home today.  That involved three crazy calls from her, a call from me to the staff and then a call back from the nurse at the home.  Just what I need, more stress and before seven in the morning too.

Tuesday, April 19, 2011

Why I Stay

I guess you could say I am not a quitter. The old "till death do us part " thing.  I just hope this doesn't kill me first.

In all seriousness, we have been together so long and through so much, that when the going get rough, I am not about to run.  We have spent so many good years together and experienced great happiness.  We have been together through very bad times too with many losses.  We have buried those near and dear to us too including 3 parents, 5 grandparents and many aunts and uncles.  We have had other medical crisis of our own and our children.  We have always been there for each other.  That has always been our unspoken vow.  I am not about to break that bond now.

Yet I find that I need to protect me now and set some limits of what I will and will not do.

Monday, April 18, 2011

Food police

H had a huge meal today with our sons, their families and a couple of other relatives.  It was a pot luck with some really great food.  He stuffed himself with meat, potatoes, soup, 4 pieces of candy and flourless chocolate cake.  I could not stop him.  I gave up trying.  He seemed happy today for once.  I refused to be the food police.  I really could not have stopped him even if I tried.  He was so intent on eating everything in sight, I would have had to tackle him to stop him and I wasn't about to do that.

My cast iron stomach

One thing they never tell you at the world famous diabetic hospital is the gross stuff you have to learn to endure.  As a while of a sick diabetic you learn to cope with the following and still manage to get something to eat and keep it down: 1) rotten teeth and multiple extractions at once as his diabetes affects his dental health; 2) bowel problems and the smells and sights related to them; 3) wounds that are very slow to heal 4);  body odors associated with diabetes; 5) vomit and the sounds of retching;  6) sticking needles into him and drawing blood;  7) watching and seeing him regurgitate at the table;  8) hearing his wheezing and choking cough; 9) constant mucus that he spits out; 10) dirty kleenex in every basket in the house; watching his physical appearance deteriorate and deteriorate.  Then there are all the invasive tests that he under goes and the new trend to let the spouse sit with the patient as long as possible before the test and including during certain procedures.

I spend hours each day just cleaning.  Cleaning up from him.  The bathroom after almost each time he uses it. He uses it frequently and for long periods of time.  The table after he has a fit of coughing while eating.  I now mostly eat by myself in the living room and serve him at the table,  We do not go out with friends any more.  It is too gross to subject them. 

On the drawn patrol

Hey, Where is Errol Flynn when you need him?  Not on Turner Classic movies this am.  It is 4:46 am.  H can not sleep so that I am up.  He is thirsty and WANTS ME TO GET HIM A DRINK.  It is easier to get it then to listen to him. 

I do not want to wake up the dog.   Then I will have to take him out.  He wants a dog.  I have to take care of the dog.  He can not or will not.  I am glad to have a dog.  He is gentle and affectionate.  Good company night after night when I sit alone watching tv while h is in bed.

H is now is in the midst of reflux.  His stomach rules our life.  We only have one bathroom now since we have been forced to sell a condo he wanted and I knew was bad for us after he demanded we sell our home.  I lucked out and got us senior housing thanks to his being in his early 60s.  Try sharing a bathroom with an individual with bowel problems.  Yuck!!! I've cornered the bleach market. 

I am still waiting for dawn to break.

Sunday, April 17, 2011

Voodo Economics

Being the wife of a diabetic is very expensive.  They do not tell you about the hidden and huge costs.  You learn it as you go along.  He works less and less.  Your income drops.  there are multiple medical appointments and co payments.  At least a hundred dollars this month.  There is the deductable, several thousand dollars.  The medications and testing supplies cost at least  $500- 600 a month.  Health insurance is a fortune over a thousand a month and you can not shop for something cheaper  with his pre existing condition.

Your own earning capacity drops as he eats up more and more of your time caring for him especially with his complications and now his mental health issues.

He is spending more and more time in bed and becoming less mobil.  Adapting to that is costly.  Selling a home with stairs in this market is going to lose money for you especially if you bought it to downsize becasue he wanted to and you fought against it and lost to his rage.

Healthy food costs more.  You try to serve healthy meals but he demands far more and you now buy both healthy and unhealthy.  He goes to the market with you when he is terrified of being left alone and needing a shot when you are not there.

He does stupid costly things like buying too large a gas guzzler car and you give in because he rages.  The insurance and taxes are higher because the vehicle costs more.

You can not take a second job at night because he will no longer go out at night and that fear and terror translates to you going out at night.

You wind up sick and pay for that due to the stress of your situation.  A cold becomes worse because you are up all night while he is sick.  He doesn't sleep and gets bad colds.  You catch them.  He is terrified of being alone in bed and instists that you stay with him and check him all night, every night. Now the co payments for you and the pharmacy bill.  Almost $250 for me last week.

He demands, he rages, you give in and it costs.  He puts terrible pressure on you to earn more money but is crazy when he suggests spending less on his medications but spending it on un-needed things like watches and more watches.  You have dabbled in the stock market your whole adult life and now that is your income plus you are cashing in your accounts hoping to survive.

He becomes hooked on a video game and rages if you interrupt him while he is playing day after day.  He wastes time and spends money on video games.

You cut corners to pay for the added costs and you find yourself spending nothing on clothing.  You spend nothing on cosmetics any more.  You buy the cheap shampoo.  You do without many things you need.  New towels and sheets are a thing of the past.  You stop relacing old or broken items.  Who needs a mixer anyway?

Since your income has gone down so much. you can not afford your office.  You go to a virtual office to save money.  You no longer have any staff.  You are fighting to keep your head above water.  You want to work, you desperately want to, but there is no work.  People know he is sick just by looking at him and no longer want you.  He was you partner at work, self employed, now you have very little or no future at work and no pension or disability.  He has been sick since he was in his early 20s, not with diabetes but other things and not insurable.  Not for life insurance either.  Everything you've built up over a life time of work is going.

These are the voodoo economics of diabetes.

It Ain't Easy

I have been married to him for almost 40 years.  The last 10 have become hell on earth thanks to diabetese and its complications.  He has gastroparesis which is one of the worst.  He is in constant pain, has reflux that wakes him each night, and multiple other problems.

He is needle phobic trapping me with having to be there to inject him and taking away what freedom I had.  He has depression and anxiety.  I get blamed for everything.

Health care costs are killing us.  He is too young for medicare so we pay through the nose.  over a thousand dollars a month for health insurance.  Co payments for doctors' appointments at least $100  per month plus 500- 600 per month for his pharmacy bills which are only partially covered. 

Everything falls on me as he is less and less able to cope.  He can not even re=order his own meds on time.  I find myself becoming the food police.  He demands things that are bad for him and rages when I refuse to give them to him.  I find myself giving in more and more, soda with sugar, pastries and cake, tons of carbs, pasta.  He does not exercise.

He rages behind the wheel.  I am damned if I drive and damned if I do not.  he rages either way.  He refuses to take many of his meds or takes way too little of them.  He them feels sicker, takes them again and then stops as he starts to feel somewhat better.

He will not go out at night.  Last night, he needed a refill on a prescription and would not allow me to go out and leave him to get it.  He is terrified of being alone at night.  He is terrified of getting sicker but will not comply.

I have spent my whole life since age 17 with him. I have gone from loving wife to distraught caregiver.  The future terrrifies me since he is getting progressively sicker and our financial situation keeps getting worse and worse.  My earning ability has dropped drastically as his demand for care and his crazy behavior has increased.