Disclaimer

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.

Friday, February 5, 2010

Hold on to your stomachs in these ups and downs

The other day Hubby had his Dr appt for medication review.

I appreciate the Dr we have that is handling this. What is very interesting is that the Dr visit is a tele-meds visit. We sit in a room with a social worker in front of a computer screen and the Dr, whom is in another town, talks with Hubby and with me about how Hubby is feeling and doing. I appreciate that the Dr is considerate of the fact that Hubby is in the room. We have run into our fair share of people even medical professionals that as soon as they see his Lewy Body diagnosis act as if he isn't in the room. So sad :(

The Dr has been working with us to wean Hubby back from so many meds. right now Hubby is at 12 diff meds and 2 diff eye drops. Not including asthma inhalers. Our progress is slow but that is fine with me. At the  visit  Dr considered my recommendation in not changing any meds right now. After running out and having to wait a long weekend to get the refills in the mail I was sure we had hit the rough patch I didn't want to stay in. Boy was I glad when the meds finally arrived and we got leveled out. Needless to say I was afraid of things getting and staying worse as a result of more medicine changes. I feel it's best to see how long we can stay where we are and not rock the boat. The waters have been smooth lately.

On the way home from the Dr we stopped and had lunch with some very dear to our heart friends. I time of prayers, some good food, fun conversation and laughs was just what our (my) heart needed. Hubby had been having some remarkably good days. I wish they could all be like that.

 I wish all the things we planned were able to be our reality but unfortunately Hubby can not do the things he once did. He has not accepted that as fact yet but knows he has a problem. Before we left the restaurant Hubby started feeling bad and I could see a marked change in his demeanor and ability both physical and cognitive. He started shaking more and his walking difficulties increased as we were trying to leave. On the way out we ran into an old friend we hadn't seen in a while and that he knew well but I could tell from the look on his face and the way he tried to converse with her that he had no idea who she was.

She in turn was stunned to see the downturn Hubby had made. I assured he he was having some good days lately.

We arrived home and Hubby went to bed. the rapid fluctuations can leave me spinning to try and sort and catch up. He can go from having a decent conversation about something to complete incoherency in a matter of sentences.

 That same night he told me he was cold. I told Hubby of course he would be cold. I would be cold running around in only my underclothes in the winter. I told Hubby to get his pajama pants and house shoes and housecoat on. He just kept looking at me like I was speaking a foreign language. I asked him if he wanted his housecoat and he finally answered and said yes, He wanted me to put my housecoat on. ( I was fully dressed) LOL! I reached over and handed him his housecoat and helped him put it on. He just laid down and slept the rest of the evening.

 I want him to be up and going. I want him to engage in friends and family. I want him to get out and about. But do I want that for him or for me? He is most content staying home and avoiding the confusions of the world that seem to throw him off balance. Although he enjoyed his lunch with friends the social setting of the noise (even though it's a very small restaurant) of other patrons, the laughter of us. His inability to keep up with the conversation and the trouble with some of his food items took it's toll. It is a rare treat to go out. Only when we have a Dr appointment to go to do we even try. Sometimes the long term effects make it not worth it for me.

Hubby becomes more confused afterward.

The next day he slept most of the day.
He did ask me about a ceiling grate in our kitchen.
A logical subject about a real thing and looked at me and asked
"Did Kathy (that would be me) put that in there?"
I answered "Yes, I put it there"
He asked "Oh, you did? When did you do that?"
I answered "About a year ago"
He stated "Huh I never noticed it before"

Probably because it's only been there a year ;-) I didn't say it.

Yesterday started off badly with a missed trip to the bathroom. frustrated and embarrassed Hubby wanted nothing from the outside world including his aide. I just quickly changed the sheets, scrubbed the floor, helped hubby and made no incident of it. He stayed in bed the rest of the day.

Then last night he brought me a bottle of water to unscrew for him. He asked me if my father still worked at the place that fills those. (My father never filled those but he did overfill the Arizona tea bottles) I just answered that my father retired. Hubby looked at me in surprise and said "He's in College?" I have NO idea where that comment came from except that Lewy quite often has a way of twisting around words inside Hubby's head. I just repeated myself and once more Hubby looked at me as if I spoke a foreign language and was trying to confuse him. He took a sip of his water, placed it on his bed table and finally settled into bed.

Today he sleeps. He woke to complain about his back hurting, as always, and I prepared his favorite breakfast, Malt O Meal. No telling what the rest of the day will bring.

1 comment:

  1. Kathy, I didn't know you were blogging! I've been following your daily stories on FB, but didn't realize you were blogging. I will add you to my feed reader so I can keep up with ya over here and leave ya some comments! :)

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