Just checking in on anyone else out there who has a parent with this terrible disease.
My mum looks after my Dad who is in what I would call 'late' stages, but actually not sure what late means. She is having an awful time, pretty much housebound herself because of his illness. We have people come in twice a week (for 30 mins) to give him a bed bath. I can't visit as much as I'd like - and she can't leave the house.
Going to the bathroom has become a problem - and while we are in the process of increasing days for bed baths, you can't schedule the bathroom (as one website advised we try to do...) so it sometimes feels like such a waste when he's been bathed and then needs to be cleaned again after the nurse has left.
I feel like any advice we get just can't apply to our case.
'Put him in a home' - not something we want to do as we know he's a particular patient who wouldn't survive long away from home, plus even if we could, who can afford this without selling their own house?
'Get more help' - good help is hard to find and expensive. I've been so frustrated dealing with some of the staff who do the bed baths - either not very thorough, or understanding, or some have made insensitive comments. To be fair most are very good and patient so grateful for that, but it's so hard to accept strangers in the home.
'Take them out for walks' - my dad is in such a stage where he really can't leave the bed never mind go outside
There just seems to be little we can do except wait for him to die - sounds so awful to even type that, but it's literally his only way out of this. My mum clearly feels trapped and her health is suffering because of this. She has a nurse come every THREE weeks for THREE hours, which she waits for patiently and uses as a chance to go to the shops. Is this a normal way of life? I just don't think it is. How are other people coping? With little extended family around I just don't know how people deal with situations like this - my mum is literally living a Groundhog Day.
And then of course outside of the difficulty of every day life with this - there is the extreme sadness - the mourning of a person who is alive but already gone. He's not the same person - and he looks so miserable at times it is heartbreaking to see.
Not sure if I'm asking for advice or just ranting here - I know there's no answer to this. Just sick of reading websites where certain pieces of advice aren't realistic to everyone's way of life. I've rang charities for help or a chat and while well meaning, they do not help.
I can't describe it but it feels like our situation is so bespoke that no one could understand - I'm sure thats not true and lots of people are going through the same thing, but it's a very lonely time and if I feel it, not living there, I have no idea how my mum must be feeling.
Love to anyone going through similar situations - hoping for better days.