Post by catlover on Sept 11, 2023 12:46:18 GMT -5
I have just written this ‘essay’ below. I was asked by the wife to write a ‘caregivers experience’ to be included in a set of stories for an upcoming conference. Obviously I wanted it to be attributed to ‘anonymous’. Now I’m not sure if I should show it to her.
Amyloidosis: A caregiver’s perspective
This is not going to be your normal glurgey story.
Not a lot of fun to be had being the ‘caregiver’ (or support person) for an Amyloidosis patient.
At first there is confusion, then anger, then confusion, then anger again, then resentment, and no, acceptance doesn’t feature in this story.
Initially you don’t know what’s going on, then, gradually, little bit by little bit the fun starts going out of life.
Fun stuff, diarrhea (can’t venture too far, unless there are bathrooms nearby), going for a walk becomes an exercise in patience testing due to muscle weakness and pain. (Haha, pun there, ‘exercise and ‘patients’). Forget going for a bicycle ride either. Can’t go to the beach, the walk is too long, where are the public toilets?
Constantly I have to worry about her falling, her skin is like thin onion skin and bone fractures happen very easily. Sometimes (often) feels like for every step forward there are 2 or 3 backwards.
Eating? HaHa, going to a restaurant sure isn’t what it used to be.
Unfortunately, intimacy seems to be one of the first things to fall by the wayside. Unfortunately, also, the partner doesn’t seem to care about it at all. Despite numerous discussions and ultimately agreement to start, or at least try, to resurrect things in some fashion. This all seems to be a farce and a means of keeping me quiet for a while. (ignore it and it will go away?). Try and snuggle up during the night? Nah, get shoved away. After some time I have just given up on that, rejection can only be tolerated so many times. Frustration and resentment? Yup, in spades.
It is also somewhat ironic, in that the patient in this case, has boundless enthusiasm for caring for the requirements of her ‘flock’ of admiring followers and travel to various conferences and meetings, but, when it comes to caring for the ‘needs’ of her spouse, haha, isn’t going to happen. (I do get lovely meals made for me though!). I don’t even get a hug anymore. May as well just be living with a roommate.
It is very difficult being the loving, caring husband when you get nothing back in the form of any physical affection.
Am I fed up? I think that would be a pretty accurate assessment! The Scots word, “skunnered’ is probably more accurate. Just fed-up and pissed off with the situation, in spades!
Amyloidosis: A caregiver’s perspective
This is not going to be your normal glurgey story.
Not a lot of fun to be had being the ‘caregiver’ (or support person) for an Amyloidosis patient.
At first there is confusion, then anger, then confusion, then anger again, then resentment, and no, acceptance doesn’t feature in this story.
Initially you don’t know what’s going on, then, gradually, little bit by little bit the fun starts going out of life.
Fun stuff, diarrhea (can’t venture too far, unless there are bathrooms nearby), going for a walk becomes an exercise in patience testing due to muscle weakness and pain. (Haha, pun there, ‘exercise and ‘patients’). Forget going for a bicycle ride either. Can’t go to the beach, the walk is too long, where are the public toilets?
Constantly I have to worry about her falling, her skin is like thin onion skin and bone fractures happen very easily. Sometimes (often) feels like for every step forward there are 2 or 3 backwards.
Eating? HaHa, going to a restaurant sure isn’t what it used to be.
Unfortunately, intimacy seems to be one of the first things to fall by the wayside. Unfortunately, also, the partner doesn’t seem to care about it at all. Despite numerous discussions and ultimately agreement to start, or at least try, to resurrect things in some fashion. This all seems to be a farce and a means of keeping me quiet for a while. (ignore it and it will go away?). Try and snuggle up during the night? Nah, get shoved away. After some time I have just given up on that, rejection can only be tolerated so many times. Frustration and resentment? Yup, in spades.
It is also somewhat ironic, in that the patient in this case, has boundless enthusiasm for caring for the requirements of her ‘flock’ of admiring followers and travel to various conferences and meetings, but, when it comes to caring for the ‘needs’ of her spouse, haha, isn’t going to happen. (I do get lovely meals made for me though!). I don’t even get a hug anymore. May as well just be living with a roommate.
It is very difficult being the loving, caring husband when you get nothing back in the form of any physical affection.
Am I fed up? I think that would be a pretty accurate assessment! The Scots word, “skunnered’ is probably more accurate. Just fed-up and pissed off with the situation, in spades!
