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

terminal illness

Molly’s Movement is a series of video’s about dementia that chronicles the life of a son and mother living with dementia.

I have been following the videos of Molly and Joey for a few months and it is heart breaking. Molly has Lewy body Dementia that is what my husband has but he also has Parkinson so his body is stiff and rigid. This documentary is well worth watching it will give you a glimpse into what happens when a loved one suffers with Lewy Body Dementia.

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One of his favorite breakfasts use to be oatmeal, not anymore…

Something  has happened that is a little strange.  My husband used to love oatmeal in the morning with nuts, raisins, dates, etc. One day I fed him oatmeal just like he loved it and when I turned around he was spitting out all the hard pieces right on the table. Now this guy is Mr. polite society, so he would have been horrified to know he had done this. Currently I make his oatmeal with Oatmealbutter, cream, maple syrup. The things he would have avoided in the past. It gives him extra calories since he is so skinny now and it is delicious… Problem solved.

This morning I to cut up onions, peppers, potatoes into little pieces and cook them on the stove until they were really nice and crisp.  Then I  cooked eggs over easy – put all the delicious  at the bottoms of the plate and then lay  the eggs on top. It is scrumptious. This is something we have enjoyed for breakfast for a longtime.

Once again today I went to feed him, and he started spitting out the crispy pieces, he hated them. He would only eat the eggs.

From  now on oatmeal and everything else will be smooth, I will make sure there are not small chunks of anything in his food.  It’s just kind of odd  how this illness has affected his perception.

 

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With each level of these diseases along with substantial life changes my strength is constantly tested.  I am afraid I am about to undergo one of the hardest things of all…

The last few days have been very emotional for me. My husband is going downhill – for the first time he didn’t know who I was it was just for a moment, but it is heart breaking.Strength

He is down to 125 lbs and at his healthy weight, he was 182 – the last time we weight him; he was 140 now 124 so skinny.

He is not making any sense at all – he jabbers in his language and when I can understand him, he worries about his grown kids being OK.  His kids never come and see him – his sons are too busy it breaks my heart. His daughter does and he is so happy when she, and his granddaughters come over.

It a misnomer to think he doesn’t know when people come to visit him. They are thinking that he doesn’t know who they are anyway – but he does feel their love and energy. He needs his children to come and just love him.

They are in their 40’s for god sake, it’s not like they are children.

I have always put off making funeral arrangements of any kind I thought when the time comes we will deal with it. Now that I really think the time is near, I am compelled to start getting things together. I don’t want all of his many brothers, sisters and children to come in and just take over.

It’s funny how as time goes on I am changing and rapidly. For the first time in my life I feel like an adult like I am stronger I didn’t realize the strength I had.  Having to take charge and figure everything out myself this last few year makes me realize how strong I really am.

Going through it I felt like I was going to fall to pieces I didn’t.

Now is the greatest test of all when I think of life without my husband I just want to melt into the floor and die…

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