Personal Stories of Triumph, Pain and Everything In-between…

Lewy Body Syndrome

I should have been posting articles; it has been a long time since I have. It almost seems that even though I quit my job, I am busier than ever and to walk upstairs to my office is too much. Ridiculous I know. My emotions are like a roller coaster, and sometime I feel like I am bi-polar.

As my husband slips deeper into his illness there are limited things he can do. He is having a very hard time walking so he is immobile. We have a routine; he usually sleeps late and when the CNA comes we wake him up, and I help her take him to the shower. With the help of both of us, we can get him into the shower; I have bought handles, so he can grab on and feel safe when he is stepping in but he is still full of fear that he is going  to fall. It is quite an ordeal to get him to sit in the shower chair – once in a while he will refuse but most of the times we get him to sit.

Once he is showered shaved and cleaned up, he is helped into the front room/ kitchen area eats takes his medicine, and if I am lucky, he will take Bi-polarit without incidence sometimes he starts chewing getting confused about the difference between swallowing and chewing.  I feed him if he just doesn’t seem to want to eat himself. I put on the TV even though I don’t think he can really understand it – sometimes he will talk back to the people on the TV. I also have cards I will give him, and if he is in the mood, he will play with them. When he is not in the mood for that he will want to finish his paperwork for his business, so I give him a red bag, and he will pull out papers and write on them gibberish. But to him – he is being productive.

He stays up around five hours, and then he is tired and wants to lie down. He wants me beside him and many times when I am not in the bedroom with him; he calls for me. He is in his hospital bed, and I will sit by him and hold hands, climb into bed with him or just lay on my bed beside him. We have a enormous TV on our wall that we watch. He will talk and chatter telling me things I cannot make out but I pretend to understand.

He is getting so skinny that it worries me. He is 5’10 when he was healthy he weighed 180 lbs. Now he is down to 140 as skinny as he is you would think that lifting his legs and helping him would be easier, but it isn’t his legs are like dead weight; I have hurt myself numerous times trying to help him. He just cannot move himself even when I help him into bed; I have to situate his body so that he isn’t crooked.

I have knots in my stomach – and I feel lost.  I have never had to be alone like this before.

I want my husband back…

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The night, we packed to go back home from Tampa things were really hectic. My husband just couldn’t sleep – not a good sign. When he is tired, the symptoms are worse than ever. Since we both were exhausted from no sleep the night before we stumbled awake a 4 in the morning grabbed our bags and headed out to Tampa Airport.

Southwest has always been very good to us. We checked in, and a wheelchair was waiting as we were whisked to the plane.

The problem didn’t start until we had a layover in Denver – once taken through the gate we had a 2 ½ hour layover – I grabbed us some coffee and waited. My husband said Traumatichis legs were stiff, and he wanted to get up and walk a little. I watch him as he walked over to the store to look at some clothes, he was talking to a lady. I looked at my phone for a moment, and he was gone – just like that. You know how with small children your biggest fear is that they wander off. That was the awful feeling I had a sick feeling in the pit of my stomach.

Denver’s airport is big I look down the corridors – I was afraid to  leave the immediate area, in case he returned. I was frantic – there was a bathroom, so I got the guts to ask a man to check – nope. I ask someone else they said he was in a stall… So I waited still nobody came out. It was an hour; he didn’t have ID, and he doesn’t have a phone.  It is within 15 minutes of boarding the plane then…

I spotted my husband looking lost in the middle of the crowd I walk quickly over to him; he saw me and hugged me – he was scared. He said he didn’t know what to do – and couldn’t find me.  I was still traumatized as we boarded the plane.

The plane was sitting on tarmac delayed for a short while as the plane took off my husband decided to get belligerent with the flight attendant. NOT KIDDING – he was getting loud, she was trying to understand him. Since he has a heavy accent, she was having a tough time understanding him. He said she doesn’t love me, and she is trying to poison me. OMG I kept trying to get him to calm down and knew they would land the plane if he kept it up – I could just see him in handcuffs being hauled away. I signaled to the flight attendant to ignore him (God must have been with me)…

I don’t know how I did it, but I did get him to calm down – he still had a look of anger in his eyes for the next two hours. I was petrified he would start acting up again.

By the time we landed got the luggage and headed home, I was a total wreck. I think I had PTSD because for the next couple of days, I just couldn’t pull myself together.

We landed at home on December 31 2015 – and in bed by 8 the whole weekend, I was tired – in tears and drained.

I love my trip – but I came home worse than I left…

Thank God I am an eternal optimist or use to be….


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Woman staring to the side

I am so very sad; it is an extremely hard day for me.  My life as I know it will never be the same.

I knew that this time was coming, but I could overlook it and pretend things are fine until this week.

My husband seems to be going downhill, and I need to try to get him to let me take over and pay the bills. He has lost two checks and thinks someone stole his money – some woman. I am the only woman he has been with …

I need to start thinking seriously about how to handle things and what steps I need to make…

God please give me the strength to do all I need to do. Please give my husband piece and tranquility that no matter what happens in the end everything will be alright.

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