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, April 6, 2012

Ghosts

Hubby requested we go out to eat so he could get out of the house.
Then in his next breath he said, "At least you let me do that."

Poor Hubby, he wants so much to do things but 99% of what he wants to do he isn't able, ie: driving, going places by himself etc
I've suggested over and over that he participate in different activities but his stubborn side refuses to hang out with "old people".
Seriously?! The man himself is 75 yrs old! LOL!!

Anyway,
At this request to go, I set aside everything I am doing, jump in the shower and get ready.
Then I help Hubby who had decided he wanted to lay back down while I get ready. Not a good thing because the end result is a sleeping Hubby by the time I get finished and we go nowhere. This time he was still awake watching a western.
We get him dressed and shaved, his hair combed and all the extras that go with preparing to leave.
We talk about where he wants to go. He doesn't care.
We talk about what he would like to eat. He doesn't care.
I suggest fish, steak, hamburgers.. He doesn't care.
So I cut my eyes at him and suggest MY favorite with a sly smile, Chinese.  He cares!
Drats!

We find ourselves once again at a favorite and accommodating place.
We eat a quiet and slow supper, just like all our others.
They seem to get slower and quieter for us.
I tip well for fear they might charge us rent on the table.

Hubby has lots of trouble eating and I assist where I can and am allowed.

Just before we finish a couple we knew walk in.
We haven't seen these people in 5 yrs.
I smile and wave and as they pass our table Hubby looks at the gentleman, perks up and says "Well, Hello Joe!"
I was thrilled that Hubby remembered who these people were and even more thrilled that they took a couple mins to say hello to Hubby. Much of the time Hubby is overlooked when others are around.

Hubby stays all perked up as we leave and he gets all chatty about nothing in particular on the ride home.
Hubby realizes he is chatty and we both laugh about it, but I like it.
When we finally get home I jump out of the car, open the house doors, let our new dog, Booger, out and get the wheelchair from the trunk for Hubby. He and I decide to "walk" the dog.
We enjoy the evening in the yard for a few mins when Hubby asks me, "When are we going home?"
I answer "We are home."
Hubby reponds, "This isn't my house."
One victory at a time I suppose LOL!

Hubby continues his downturn through the night.
He informs me that he has been thinking.
I swallow hard.
Then I ask about what.

Hubby doesn't know where he is.
I ask him if he knows who I am and he says yes, my name is Kathy.
I ask if he knows what my relationship to him is.
He does not know this answer.
I inform him ( I was nice about it!)
I asked him if he felt safe with me.
He said yes.
I tell him we are at our own home.
I asked him if he felt safe at this house.
Hubby looks out the window and says yes.

He tells me he thinks he recognizes my car.
He also tells me that he bought the car for me.
I agree (even though it was I that bought the car)
He continues that he bought the car for me and for "the other one"
I ask who the other one is.
"She is supposed to be Kathy."
Hubby looks confused as he sits down.
He then says "but she can't be Kathy"
I ask why.
Hubby answers, "because she isn't.. She's a ghost."

I refrain from a smile and tell Hubby that there is an actual medical term for him thinking there were 2 of me, Delusion.
He seems satisfied with my answer.
I'm satisfied that he says he feels safe.
And he isn't afraid of ghosts.


16 comments:

  1. Kathy I have known u all my life. I truly admire you for the person you are and the strength you have. What you endure on a daily basis is a lot. My boyfriend and I cared for his grandmother with dementia until it was to difficult. It broke his heart that the woman that raised him no longer recognized him. Your strength is amazing. You sense of humor astounding. You have a big heart filled with lots of love. Bobby is one very lucky man to have you. I believe he knows that. Love you. Cheryl

    ReplyDelete
    Replies
    1. Cheryl,

      Thank you for popping in :)
      Yes you do know first hand the challenges of caring for someone with dementia.
      I understand your boyfriends heartbreak and I admire your willingness to care for his grandmother.
      It's a life that is full of twists and turns for sure!

      I appreciate your kind words, I don't always feel strong but I have a strong moral support team that includes friends and family that know how to laugh with me. Thank you for being on my team :) I love you too :)

      Delete
  2. Hi Kathy,

    I agree with everthing Cheryl said. You're lion-hearted and a trooper, and it seems you make the best of every moment.

    Take care,
    Megan

    ReplyDelete
    Replies
    1. Hi Megan :)

      Some times I must look very hard, did I say very hard?, to find the best in a situation and then sometimes, the situations make themselves the best. I'm just fortunate enough to be there and then write about it! LOL!
      Thank you for commenting :)

      Delete
  3. Kathy, you handle all of this with such grace.

    I used to get so frustrated when people who knew Mom would ignore her and talk just to me or Dad.

    Praying for you, my friend.

    Tammie

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    Replies
    1. Hi Tamara,

      I hope that I am already learning to have more compassion towards people.
      I find myself looking at the people, mostly elderly, sitting outside the store waiting and I make it a point to smile at them and say hello to them instead of rushing by.

      Thank you for your prayers,
      They mean so very much :)

      Delete
  4. Kathy, you handle all of this with such grace.

    I used to get so frustrated when people who knew Mom would ignore her and talk just to me or Dad.

    Praying for you, my friend.

    Tammie

    ReplyDelete
  5. Big hugs to you, Kathy. It is a difficult job as a care giver with rewards we often can't see yet.

    ReplyDelete
    Replies
    1. Sue,

      Hi :)
      Thank you for the hugs!
      You are so right, many rewards we can't see. I always wonder if our situation is less for us and more for someone else. We never know who's "reading" our life book or what they are getting out of it, do we?

      {{{HUGS}}} to you my friend :)

      Delete
  6. Hi kathy, I'm enjoying your blog and wanted to introduce myself. I'm sonya, 37 and I've been caring for my 42 year old hubby for nearly 3 yrs now. Its been a long time of tests and drs and they have finally just diagnosed him with lewy body disease. So, a lot of what you write is all too familiar to me...and some of it shows what lies ahead for us. Thankyou for sharing.

    ReplyDelete
    Replies
    1. Hi Sonya,

      I'm glad you found my blog but I am so sorry you had to.
      My heart is wounded for you and your husband as you go through this disease.
      I will be adding you to my daily prayer list.

      I hope you are considering keeping a journal. Not just to document your husbands progress but to see the growth in yourself through this.

      Please remember you ARE NOT alone in your thoughts and struggles. My best advice is to start setting a plan in place for help and support even if you don't feel like you need it right now, at least you have it available when you do. That day will come faster than you expected.
      If you have any questions I would be very happy to help as much as I possibly can and if I don't know the answers, I'll try to find someone that does.

      Please keep in contact.

      Delete
  7. Hi Kathy, I have just started reading your blog, my husband was diagnosed with LBD in December, my husband also refers to the other Anne, I try to smile and explain that there is only one Anne, sometimes he will say I know but that's what the other Anne says. I say we have been together for 21 years so surely you know I am your Anne, his reply often is really have I known you that long. This is such a hard condition to deal with, I will read on but just wanted to say you have the best title for this I always say who has stolen my husband. Thanks for your share of this

    ReplyDelete
    Replies
    1. hi Anne,

      Thank you for taking the time to read my blo.
      There's a ton of stuff so please try not to overwhelm yourself LOL
      I get a little long winded.

      More than anything I hope you are able to learn something and use our experiences to make your own life and that of your husband's easier.
      As I said to Sonya above, I will be adding you and your husband to my daily prayer list as well.
      Please keep a journal. It will come in very handy.
      And please look into finding support and help now.
      I have an AWESOME moral support team. Family and friends and full of prayer warriors. I couldn't keep my wits about me without them.

      I try, really try, not to take it personally that Hubby doesn't know me anymore as his wife.
      I know your pain and frustration, when Hubby remembers someone else he only knew for a short time and yet he's been married to me for 30 yrs and has no recollection of us getting married and asks me where I live! ugh!
      I have to keep telling myself, Lewy just didn't make Hubby forget, Lewy stole that away and it is gone forever. Tough thought to swallow some days but true.

      Please keep in touch and if I can help answer any questions or lead you in a direction for answers let me know. I'll be happy to be on your team of moral support and prayer warriors :)

      Delete
  8. Hi Kathy

    Thanks for your supportive reply. We are very alike, my hubby Hugh is 74 and I am 49, we have been together for 22 years. You blog has been a great read. Hugh suffers hallucinations and will say to me when did the visitors turn up... I say who, he ill say the 2 on the other settee and the one one the computer, I smile and say there is only you and I and our 2 cats in the house, his response is always ...well that's your opinion, I see them. He is also convinced that there is a lady in a tent in the garden who does work on our barbecue everyday I have to mile at that one.

    I will pray for you and your hubby each day and look forward to reading more of your blog. I will start a journal and work back to when we got the diagnosis. Thanks again Kathy, take care x

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    1. Kathy the above is from Anne, I pressed the wrong button!

      Delete
    2. HA HA Anne!
      I'm a wrong button pusher from WAY back! LOL!!
      If you're a FaceBook-er feel free to add me to your list of friends if you would like.
      I'm Kathy Gill Lowrey. Just shoot me a message so I'll know it's you :)

      Delete

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