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.

Sunday, December 5, 2010

Tis the season...

...to get back to reality.
The responsibilities and increasing care needs of Hubby have brought me back from the online game escape I needed and took full advantage of. Juggling them both left one or the other lacking so I chose Hubby.
I know there will days when I will wonder why ;-)

I find myself struggling this year to get anywhere near the Christmas Spirit.

Perhaps it's the day in and day out of the same day, over and over and over again.

I should appreciate Hubby's emotional calm days.I'll take them anytime over the distress and hostile anxiety he has and can exhibit. These days are filled with confusion, repetition in deed and word. Mobility comes and goes. Mostly goes. Incontinence has increased to him not even trying to get up and go to the bathroom some times or sleeping right through it.

I bought a complete waterproof mattress cover at my local Wal Mart store. It zips the entire mattress and memory foam cover, in. I also purchased additional waterproof mattress pads for the bed in addition to the complete mattress cover

Another item of purchase for Hubby is a chair with arms. At Big Lots I found a perfectly sized tub style chair for Hubby to sit in as he eats. We have lots of stability issues and sitting on the side of his bed to accomplish the task is becoming increasingly difficult. Its a comfy little thing, the arms can keep him upright or propped as he needs. The only thing we need to adjust is the height. It seems to be a little low for Hubby so I will look for those bed risers. You know those things you put under the legs of your bed to raise it a few inches? I think they may be just the thing we need.

I do not recall if I mentioned we had a swallowing issue that has crept in to our lives on occasion. Less food consumed by it and pills not taken as often. We also encountered a self feeding issue once. Hubby could not feed his own self and I needed to feed him. This little chair will also come in handy for being able to sit in front of him to help with this should and when it arises again.

Yes, I think I shall like this little chair for its convenience and support and a little peace of mind. Maybe no more walking in on Hubby to check on him while I was preparing supper only to find that he was no longer sitting up on the side of the bed but fallen over and unable to raise himself. Initially I run over to offer and give assistance then I find myself chuckling at the site of poor Hubby like a turtle on his back. Yes I know, bad wife. I smile at Hubby and he usually smiles back and then I ask the smart question, "You need help?" We laugh and I get Hubby back to his original position.
 Hubby rarely ever calls for help anymore if he finds himself in a awkward situation. As a result I find I spend the majority of my day in the room with him. Ready to help at a moments notice. I sometimes wonder if this is the right thing for me.

Providing physical care for Hubby comes fairly easy.
I am blessed that I have the opportunity, health and means to do it.
I do see changes that need to be made before the providing becomes too difficult. I have placed myself last on the list of "dumb things to do". I have neglected my body and its proper needs for nutrition and exercise. As a result I am feeling the effects of self neglect.

The emotional caring I give Hubby is not up to its usual par. I find myself frustrated easier at his constant "what?", or, "Huh?" It seems that no matter what I say to him, he has to say, "What? or "Huh?"" and I must repeat myself more than once, more than twice and sometimes as much as several times. With each repetition I speak louder until it finally seems like I am shouting at him. There are times I get pretty tickled at his interpretation of something he thought I said, the result nowhere near what my original words were, and plenty of times leaving me confused as to what I was actually saying and why. 
I don't think it's always because he can't hear me, I think much of it is that he does not understand the words.

Then there are the times when Hubby wishes to converse with me. Knowing that the conversation is going to go nowhere and make no sense I almost cringe whenever I can't immediately guess what he needs and have to wait for him to try and tell me. It's not the waiting, it's the sorting out.

Lewy has stolen Hubby's vocabulary so he trades one word for another. Talk about ... I forot, what were we talking about?

Now on to the extra people in the house. I really, really, REALLY do not like the extra women here. They are nothing but trouble and keep Hubby distressed when he talks about them or thinks about them.
The sad thing is that these other women are ME!
 Is this where Me, Myself, and I are actually 3 people? Hubby speaks of one by my name, and the other as that other woman. Of course he always tells me that I know who that other woman is and then tells me things 'she' did that in actuality I did. When asked, Hubby can recall my name but there is no connection between me and them as far as he sees. Only that we work together to keep him confused.  So there it is. Another day or how ever many in our lives. The days all run together anymore. Nothing new to say or tell really so I feel like there is nothing to update about.

I will end on this.

We had the pleasure of a visit from our 2 daughters and a son in law. As the girls and I took off to spend some time together Son in Law, BLESS his heart, took responsibility for Hubby and took Hubby to town to get a cup of coffee.
God greatly blessed Hubby with a tremendous day, physically and mentally and Hubby was able to get out for a few mins.    
The hardest thing, Son in Law said, was getting Hubby in and out of the car. I KNOW Hubby was so looking forward to this time and greatly enjoyed it. I wish he had the opportunity to do more of it. Those are rare opportunities I fear but oh how appreciative we are for the ones we have.

God has blessed us with His goodness, all the time, even when it seems bad. I chose not to forget that.

1 comment:

  1. I do hope you have a good Christmas. Exhaustion for me at times takes the fun out of things! lol!

    I have only read a couple of posts, but I hope you have some type of home care helping. It can certainly help recharge the batteries.


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