Sunday, January 20, 2008

My 53 year old husband has Frontotemporal dementia

I just turned 46 in December.My husband of 23 years,53 in November.Four years ago or so he started doing things and acting ways that were totally out of character for him.Fast forward to now,he is dying ,his disease is progressing rapidly.He has Frontotemporal dementia/Pick's disease,the rarest of the dementias. I don't know what else to do besides cry,care for him,make legal arrangements,take care of all the household stuff.
Our love was the stuff fairytales were made of.We met both battered from previous marriages.I had a very rough past,so did he.The first 2 years we were together I couldn't believe that this miracle happened to me.
We had our ups and downs,but we loved each other's company,we laughed lots,we never had much in the way of material things,but he was my soulmate.My protector,my lover,best friend.Now,he won't hold my hand,doesn't sleep in my bed for the past 2 years.He barely speaks.He doesn't bathe or change his clothing unless I help him.His dementia though is the agressive kind.He has poked my face twice in the past month because he didn't like my answer.H grabbed my chin hard 2 nights ago,because I wouldn't french kiss him,even though he was purposely drooling like a child.
Welcome to my world,or what is left of it.I have never put material things and worldy goods at the top of my list.I love a good person,and pure soul,over a tropical vacation.We are losing what little we have.Our only house of 14 years,is going.We have no savings,never could,raised 4 sons on a painters salary,so I could be a stay at home mom to my 4 sons.After this more health insurance.
What I mourn the most though is the loss of the relationship I had with my husband Paul.I miss his affection,his laughter,his sillyness,his huge heart.
One of the things that made me fall in love with him all those years ago ,was that as masculine as he was ,he was sensitive and soulful and wasn't afriad to cry.He has treated me like a princess,made me feel that I was worth more than diamonds.
I am mourning,someone told me recently that ot live with this Frontotemporal dementia,FTD for short is like Death by a Thousand Cuts.Hence the title of my blog....Debra Lewis Caruso


jimmy paravane said...

Hya Blackdove. I'm so sorry to hear everything you having to go through with this. Have you applied for Social Security Disability yet?

Jimmy's Wife said...

I fortunately do not have Picks; but do have the beginning stages of frontal lobe dementia. i am fairly clear most of the time. in time; jimmy will have to face what you are facing and i KNOW how hard and bad it is going to be for him.

I am very glad you had good years, and i am also very sad for the bad time you are having now. i wanted a DNR now; but jimmy wants me around as long as possible.. when i'm a veg, what part of me will be there????

and the violence.. i really really can see that would be impossible for either jimmy or i to live with.

i hope you can find the support and help you need.

Jimmy's Wife said...

i forgot to tell you that your title for your blog is so perfect. it feels like that to me now. one day i won't feel anything; but jimmy still will; as you do..

i am so sorry..