Update on Bob & I

[Guest guest]

Hi All,

Well Bob is hanging in there at Rehab. Wednesday he had to have IV

fluids because he was not drinking enough by mouth. His BP dropped to

74/52. They said it was dehydration.He perked up and has been a

little better since then. He is starting to choke and cough after

drinking. I met with the Speech Therapist who tried him on thickened

liquids. He still coughed some after drinking the thickened apple

juice she gave him. The Speech Therapist said thickening his drinks

would increase the likelihood of Bob getting dehydrated because they

are thickened and most people do not like to drink them that way. So

I said " No thanks. " to thickened liquids. I will not ever have a

feeding tube put in Bob if and when it comes to that. It would just

prolong the suffering of Lewy.

Bob's twin sister a is flying in today and I am picking her up

at the airport. She will stay with me a week. She wants to see her

twin brother one more time and help with his feeding and sit with him

to keep him from trying to take off his clothes and throwing

everything on the floor, which is what he does when he is alone in his

room. He kept on tearing off his bandage from the hip surgery.

Luckily now that the incision is healed enough the staples are out and

it looks good, so no more bandages. It will be quite a shock for his

twin sister when she sees how bad Bob is. She has not seen him since

last summer when he was still able to walk and talk a little on his

own. Bob needs two CNA's to transfer from the bed to a wheelchair and

only mumbles and rambles nonsense now. I do not foresee him getting

better to the point where I could transfer him myself alone as his

dementia is sooo bad now. He does not understand al ot of what the PT

asks him to do and will do just the opposite of what they want!

I am getting resigned to the fact that if he lives on like this I

will not be able, nor do I want to bring Bob home to care for any

longer. It is just too difficult and exhausting, not to mention

painfully emotional to be with him and see how he has declined to be

less intelligent than a one year old child now. For a man who has a

PhD in Education, who taught high school math and computers, and who

was a Baptist minister for 15 years, this is truly a devastating and

dreadful slow good bye..... So sad to watch it is really unbearable,

but I must bear it somehow as it is what it is. When the Medicare

Rehab time and money come to an end I will be placing Bob there in the

nursing home part and have applied for Title 19. I never wanted to do

this, but I can no longer stand to care for him at home or handle my

emotions. I vary from anger to sorrow to depression, and am really

mourning the loss of our life together and all our hopes and dreams

for the future are smashed forever. I will never understand why this

has to happen to such a good and kind man, God does not answer when I

ask him why? Maybe I will know when I get to heaven, but right now

this is hell on earth.

Pat M.

58 Wife/caregiver of Bob 76, dx PD 2003, LBD 2009, now in Rehab Center

post second hip replacement surgery.