caretakers, please let me vent
some of you remember me altho i have not posted in awhile as my husband has als now for 2 years, and is at the point that he can do very little for himself anymore, and i can barely find a min. to get online to say hello to my siblings ea. day to let them know how we are. i have been wanting to get on this particular caregiver's thread and 'vent' a little, and it was about this very first posting i came to entitled 'am i doing too much?'
my husb. had a great deal of physical strength and dignity when first diagnosed a year ago, altho had symptoms for one year previously. he had limbonset and it has progressed very rapidly also.
he walked as long as he could, even on a walker, he cut his own food as long as possible, and struggled up until one month ago to wobble to the bathroom on a walker. now, we have his hosp. bed, rocking chair, and portable potty chair lined up in a row in the den, and i sleep on a couch (getting very little sleep) as he gets panicky if i'm out of the room. he cannot even wipe himself now.
can you just imagine what is going on in their minds, which are not affected by als, when a loved one has to do all these things for them? somedays, i run myself ragged trying to take care of him, me, laundry, meals, etc. and he is at the point now that he is frustrated and gets very impatient with me, but i understand it is not intentional or personal. but.... let me tell you - all this is taking it's toll on me, the caregiver. i went to the dr. yesterday and had to pay an off-duty homehealth care cnt to stay with him, as i had gotten a staff infection on my left hand for not using latex gloves taking care of his hygiene with bms.
my blood pressure yesterday was 220/90 and i tho't i'd pass out when the nurse told me. after talking to a kind, caring dr., he retook it and it was still 190/70, the highest it has ever been in my life. i am 70, and in good health except for arthritis.
the dr. told me to pay that home health cnt to come at least once a wk or once every other wk, and pay her whatever she wanted, and me get out and get away from all this chaos and craziness, or i'd end up in the hosp. she is the only one i trust him with bec. if he gets choked on phlemn, or had to use the potty, he would not be so humiliated as to have to have a family member help.
i told the dr. somedays i wanted to scream and scream. i am soooooo tired. but he did not ask for this disease, and i feel i have it too, only mine is wearing me out, and his is tiriing him out.
thanks for letting me vent. jackiemax