Sometime I feel so mundane – like going through life and trying not to feel the pain. Never who I use to be, and I don’t know if she will come back again.
No more innocent belief or joyous laughter – I look at my husband and think about how his life was so full and rich now he is towards the end, and it is devastating…
But there are little things that make me smile like when he is happy and just chattering away in his own language but still happy…
Unless you have been through this, you really don’t understand how days are like roller coaster, and your emotions change from hour to hour. Thinking about the past and being afraid to think about the future you cannot imagine life without him, and you feel guilty even thinking about it. I know my husband doesn’t want to live this way that is the reality, but I am selfish because I just want to kiss his face and have him smile at me forever –
And I do have a lot of blessings the people that help me care for him are like family now and the help they give us is priceless.
I was at the point where I was trying to find a support group, so I knew I wasn’t crazy – then my sister brought over a kindred spirit who was losing their spouse to a terminal illness and just talking and communicating has been such a blessing.
So instead of crying I should be rejoicing in the wonderful friendships I am building and the amazing life my husband has lived…
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.
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 butter, 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.