This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.

This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.

Saturday, September 17, 2011

Wanted, Dead or Alive!

For the last few days sleep has been fleeting during the night for various reasons.
Cool temps, crick in my neck, staying up late, Hubby's busyness, worry that I would not wake on time for something so I watched the clock all night, sleeping with my hand curled up under my chin putting it to sleep and then at some point moving it and it wakes up (I don't know why I started that sleep habit),  etc
That makes for long days and nights and leads to mental and physical tiredness.
Oh, I'll eventually catch a nap for "a few mins" and find I've slept like a rock for a few hrs. A couple of times like that and I'll be all caught up.

Last night was no exception but I slept/didn't sleep for a longer stretch of time. Headache tired put me in bed before 9 PM and I finally crawled out at 8 AM. I argued at the clock every time I opened my eyes and looked at it. "I am NOT getting up!" I guess I told it! hmmph!

Dreams were crazy too! I will chalk this up to a 3 hr trip to a funeral. The sheer emotions of everyone and the 3 hr trip back and the car conversations. I dreamed that everyone I encountered had to hug me, no, embrace me. The long, clinging, tight, don't want to let you go, kind. Sometimes the embrace was very sensual.
(Note to self, stop watching so many back to back episodes of "Bones" if you want to keep the men out of your dreams)
I woke while packing backpacks for those going on a trip.  I didn't know where they were going but apparently they needed hamburger meat in patty form. 

Our son, SonnyBoy, stayed with Hubby so I could attend the funeral. I tried to make it as easy, comfortable and convenient as possible. I made Hubby hamburgers the night before for his lunch (that's where that thought came from).
I made SonnyBoy a time sheet to get BIL on the bus for school.
BIL is Hubby's 63 yr old brother with Downs syndrome. Our annual 4 months of his care began the first of Sept. Hubby's 2 sisters and I share BIL 4 mo of every year. We have done this for several years now. It's funny but I never considered having BIL as caregiving. He is just "one of the kids" and I have always considered it a pleasure to be able to have him. He makes me smile so much and is a treasure.

So SonnyBoy takes over the duties and for the first time in more than 3 yrs, I am a vast distance from Hubby. I just wish the circumstances had been different.

Back at the ranch...
I woke fully from my sleep and looked over at Hubby.
I hear his breathing, not labored  and I could see his chest rising and falling in rhythm.
He was sleeping calmly.
I need coffee.

For the last 2 days I have had something rolling around in my head.
The words of another have stirred deep feelings.
I'm NOT jumping on a lynch mob wagon but I do need to get MY feelings out.

By now everyone has heard about the advice Pat Robertson gave.

          Mr. Robertson was asked what advice a man should give to a friend who began seeing another woman after his wife started suffering from the incurable neurological disorder.

          "I know it sounds cruel, but if he's going to do something, he should divorce her and start all over again, but make sure she has custodial care and somebody looking after her," Mr.Robertson said.

          He also stated he wouldn't "put a guilt trip" on anyone who divorces a spouse who suffers from the illness, but added, "Get some ethicist besides me to give you the answer."

         When asked by Terry Meeuwsen, Mr. Robertson's co-host, about couples' marriage vows to take care of each other "for better or for worse" and "in sickness and in health."
         The answer Mr. Robinson gave was :
         "If you respect that vow, you say `til death do us part, but this is a kind of death."

 As a spouse to someone with dementia this is how I (emphasis) feel about this.

From the worlds perspective as opposed to my beliefs and faith I first understood when he basically said, if you were going to find a relationship outside of your marriage then you should get a divorce BUT make sure the ill spouse had a caregiver.
I understood it as much as I understand the thought, If you're going to continue to have an affair (whether your spouse is ill or not) you might as well get a divorce.

I also understood when he said he wasn't going to put a guilt trip on anyone who divorces an ill spouse.
I know it is very hard to be alone and have the same desires and needs, physical and emotional and not be able to fulfill those with your spouse.
Neither am I going to judge anybody for their actions. This is not my place. I don't know how they feel or what they are experiencing. I only know me and my experiences. We are all different with different needs wants and desires. Some people, for whatever reasons, can not be alone.

In his final sentence, I tried every way to re read into what Mr Robertson said. Maybe I misunderstood. Perhaps he meant something else, but there was no further explanation. I can only think Mr Robertson's answer was based on a worldly view. (Again, as opposed to my own beliefs and my faith).
A view that can give us excuses for what we want to do or not do.
But what I do not understand, either from a world view or my own beliefs is how Hubby can be considered dead. I can find no excuses to lead me to accept or believe that Hubby is dead.
I even looked up the medical definition of death here.

I watched and listened to Hubby breathing all on his own this morning.

Lewy Body Dementia can be kill many things I think.
Hubby's mental loss as it continues is like a slow death but he is not dead.
Lewy takes away many of hubby's daily living activities.
We must make adjustments to make what is left of Hubby's life more comfortable, convenient and provide for him the best quality we can. He is still alive.
So alive he ordered breakfast this morning.

Does he remember who I am? No not really, He knows I'm Kathy, he knows we are supposed to be married, he knows I take care of him but he does not remember we got married almost 30 yrs ago.
He does not remember that the things he talks about in our past include me.
He is always surprised when he talks about something and I say, Yes I remember that. He wants to know how I remember it LOL :)

He remembers our children.
He knows I am their mother, but he can't connect us together with them.

He doesn't believe he lives in his own home.
He keeps talking about moving and going to his Mother's home.
It is one of the last places he remembers living at.

He can't walk far, just a few feet, we use the wheelchair quite often.
He sleeps much of the time.
He complains that I am stealing from him and keeping him trapped.
He says me and Kathy and the other one whom he can't remember, are tricking him. (Me myself and I)

Does he always know what he's takling about?
No and neither do I.
He gets anxious and sometimes he cries.
He talks about his death and sometimes I have no idea what to do for him so I hold him for comfort.

All of these things are done by a living and breathing person.
He isn't dead.

The funeral I attended, the man in the coffin, he was dead.
I did not experience the rhythmic breathing from him.
I'm pretty sure of it.

Is dementia easy to live with?
I whine and complain about it too.
Do I have the same relationship with Hubby as I had before?
My partner and I can no longer have the same intimate relationship.
We can't plan for the future like had once did.
I have no sounding board for concerns and there is nobody to turn to for physical or emotional comfort.
I have no pillow talk friend.
My help mate isn't able to do simple things like bringing home a gallon of milk on his way home.
My chauffeur is retired so my back seat driving has turned into actual driving.
My security from car problems is now unavailable.
My scary thing hero can no longer kill the bugs and chase away the opossums.
My protector now needs to be protected even from his own choices and mishaps at times.
I have to think for 2 and react for 2 and care for 2.
All of this and much more has been lost.
I get lonely for my husband.
I miss his physical touch and the fulfilling of our desires for and with each other.
It might feel like someone died sometimes. Grief can creep at every loss.
Yet Hubby is very much alive.

For me, I made a vow, a promise, not just to my spouse, but to myself and to God.
I choose to keep my word.
I don't do it because I have to, I do it because I want to.

1 comment:

  1. Good for you. Everyone I know agrees with you and so do it. I admire how you handle everything.


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