• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

How to help

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
My husband is my caregiver and here are some of the things we have had to deal with together:

Its nice to be asked if I want to go out somewhere and for a suitable, accessible outing to be planned, rather than to be left at home because 'you cant take wheelchairs there, its too noisy etc'.

I like to be asked if I want to go on a trip, even if we all know im going to say no or cant do it.

Using a manual wheelchair - it takes a lot of time and skill for the pusher to get it right. They have to realise they are at the will of the pushee, not their won, when they do this task. So I don't want to be taken somewhere I didn't ask to go, or be spun round quickly at doorways or bumped roughly down curbs. I have a PA now and she pushes me too fast most of the time which is a bit scary!

Im still a human being - at times roles can get mixed up - we sometimes try and hold hands while he's pushing me in the wheelchair so im not just a passive person and him the active one.

Im not just my illness. Im still a woman, a mother, an intellect etc and want to be treated as such.

To caregiver who are not my husband: Don't talk AT me for prolonger periods of time, because I am polite I will not make you stop and it WILL make me ill. Similarly don't leave me standing in the doorway while you tell a long, unasked for anecdote, because again I wont leave and lay down until you stop as im mainly too polite.

Listen to me.

come with me to appointments and take my side/advocate for me.

Find things out for me.

Make me nice food.
 

andyguitar

Moderator
Messages
6,581
Location
South east England
Great post justy. I spent several years as a paid (most of the time) care giver and including the sufferer in ordinary everyday life was, to my mind, the key to having a better life. There are many things even very disabled people can do. You just have to convince people of this.
 

sissypop

Senior Member
Messages
194
Location
USA
Yes this.

While some, myself included, sometimes have a hard time coming straight out asking someone to do such and such for me. But often times I do drop some not so subtle hints at things I need or want.

Like my kitchen faucet has leaked for months. I have it rigged so a pot catches most of it under the sink but it's still more work and aggravation for me to the point I try to really limit how much I use it. If I need quite a bit of water then I carry it from the bathroom sink. I know it's coming from a very old faucet that leaks all around then drains and drips underneath. No major plumbing involved but new faucet is needed I'm sure. I can buy a new faucet. I can't do it but have family that knows this stuff and could probably switch out a new one in a few minutes. Yes I can call a professional plumber but the last time I did that ( the toilet was constantly running ) it ended up costing me $153.00. And all that was needed was adjusting the little float thingy in the tank. I could have bought a whole new toilet for that with a lot of money left over. But by the time they charged me for minimum labor, their truck fee :rolleyes: etc there you have $153.00 bill. Now I have mentioned this several times to my family that are the ones that can do this type of work but the best I got was one of them at last said "oh yeah I can put that on for you but I'm pretty busy right now" that was at least a couple of months ago. They are also very aware of my financial situation and know I lost my full time job last spring and only very recently start back to work part time.

The other one that bothers me so are my hints to them that I would love to play cards. And these are card playing people. But everyone seems so busy with their own lives.
 

AndyPandy

Making the most of it
Messages
1,928
Location
Australia
@justy

I can relate to your post.

A few other things:-

Don't interrupt me and try and finish my sentences when my speech is slow and/or I am having trouble word finding

Don't speak on my behalf without my permission even if the person asking the question directs it at you assuming I can't speak for myself

Don't change direction quickly when you're pushing my wheelchair as this causes me pain and forces me to use more energy to stabilise myself

Don't assume something will be fun for me or be something I can do just because you enjoy it

Don't assume I will be well enough to do something because I could manage it on a previous occasion

@justy I have learned to be more assertive about my needs. If talking with someone is exhausting me I will tell them and end the conversation. If I need to interrupt someone and sit down I will. I remain polite but I put my health needs first. For me being politely assertive is something I have become better at with practice. I've had to become more assertive since becoming ill.

I think good clear assertive communication is key in the caree/carer relationship as well as good boundaries.

Best wishes Andy
 

char47

Senior Member
Messages
151
My carer is an absolute Godsend. There are loads of things i love about her, like her sense of humour, her genuine care for me, & her compassionate, kind, gentle heart. I could go on & on, I've been blessed enough to find someone who i would want in my life even if i didnt need her, someone i'd want to spend time with even if i didnt have to. But in terms of the main helpful things.....

- She is eager to do things the way I would like them to be done, rather than the way she would necessarily do them for herself/at her home. She recognises that this is MY home & she is there to be MY hands/arms/legs, not to do it her way or impose her will/preferences. Goodness me she even does things like slicing the butter the way i would do it. Little things like asking me where i want things put rather than just deciding where she thinks they 'ought' to go.

- She is, generally (barring unexpected things out of her control), on time, if she says 1pm she arrives at 1pm. Shes very reliable.

- She has willingly taken the time to learn about ME, is eager to read what i put in front of her & has been able to grasp some of the political nonsense going on & why i'm so nervous of the doctors

- She never, ever, "chivys" me along (more on this in the 'worst' answer)

-She is flexible when she can be, so if i need to modify hours etc wk to wk depending on how i am, then where she can accommodate that she does

-She isnt in any way 'parental'. What i mean by that is she asks me what i want & then does it/buys it etc without comment or judgement - clearly does not see it as her place to even have an opinion on what i choose to have for my tea or how much chocolate i eat (for instance).
When I ASK her what she thinks about things (which i often do) - then she will give her advice & input in a very non judgemental, sensible & compassionate way.
But she never treats me like a child who needs rescuing, never treats me as if i am incompetent or need someone to 'take over'. Even though at times she has to. - this is a biggy because when i crash i get so confused i dont know whats happening & literally incapable of knowing what i need & cannot speak coherently to express it, so if this happens while i'm out she has to take over. But that hasnt led to her thinking of me like that when i'm not in a bad crash. I think it may be because she has history of working with pwlearning disabilities & she is very respectful of me as a fully fledged adult, despite me sometimes needing her help to count out money in a shop.

- She LISTENS to what i need & has taken the time to develop a good grasp of the nature of ME, so that I never feel like small things like "thats a bit bright' or 'too noisy in here' are looked upon as being "difficult". She understand that what might be fine in terms of noise at 1pm is intolerable at 3pm after a trip to the dentist.

-She BELIEVES me. She knows i am genuinely ill.

-She holds my hand when i sob my heart out with grief. She doesn't want me to 'put myself away' or stop crying, or "be positive" but recognises that tears will dry up naturally with support & understanding. She doesnt let her discomfort and sadness at my pain (eg recent bereavement) prompt her into trying to 'cheer me up' - which when done by others only leads to smothering of feelings & further sense of loneliness.

-She is trustworthy

-She is full of creative ideas, she is interested in finding ways for me to access things/achieve things, fix little problems - but again not in an interfering way - she offers these ideas in the context of my talking through problems with her, not unsolicited 'fix it' behaviour.

- This isnt necessarily crucial for everyone but it's important for me because my life varies hugely, on any given dayy i might need her to take me out to an appointment & advocate for me, talk through a problem, mow the lawn, help me have a bath, phone a utility company, make dinner, assess whether the cat needs the vet & then take her, clean up my vomit, sit with me while im upset - i'm afraid there is a lot to be upset about at the moment, do a spot of decorating, bury the dead cat, clean the toilet, go to the supermarket etc etc etc. I mean all these are negotiated i dont just expect her to do things i havent discussed that she is happy to do, she is by no means a slave & i respect her righ to choose & opt out of things if she wants to & care deeply about her welfare too. But the point is that she is my helper & companion, she is whatever i need her to be at that time, she doenst do "thats not my job".

-She is respectful & mindful of my privacy & dignity with things like helping out of the bath etc. she looks just over the top of my head rather that directly at me.

LOL someone mentioned above being good with the wheelchair & recognising what it's like to be the 'pushed', it's not an easy experience sometimes.


____________________________________________________________________________________________


The worst things carers can do is "re-enablement". ie thinking i'm not already doing as much as i can for myself, that i need to be chivied along or persuaded/encouraged to do things - like going out when i'm not well enough.... things like "come on you'll feel better once you're out in the fresh air". Or trying to get you to "think positive".

My carer recognised very quickly that if i said "i cant today" that really did mean I cant, not that I'd be able to if i thought positively or tried harder or 'had the confidence to' - she doenst say any of those idiotic things people say like "you wont know until you try", - because she can see that I DO know. And that actually i'm more inclined to push too hard than not enough.
But even then she never interferes unless i ask her to. - so sometimes (because of the cognitive issues/confusion i'm not too sure whether I am well enough to do something) I will ask her what she thinks - 'do i seem well enough to do this to you'? And she will answer which is such a help. But unless i ask she doesnt comment.

Also being intrusive, treating you like because you are ill you somehow lost your intelligence or competency, or right to make your own decisions about everything without comment or 'parental' input. This i refer to as 'top down' care, rather than support from underneath or alongside. Its people using "support" or "care" as a way to control or feel empowered themselves, having all kinds of opinions about what the person 'ought' to want/have/do/not do & then foisting them on you.

And there are obviously the issues of trust & respect & dignity in personal care aspects etc there are all kinds of horrors that could come under the 'worst' things but they dont need articulating here i dont think.

----------------------------------------------------------------------------------------------------------------------------------------------------

Sorry that was long, but i think its important & i'm looking for another carer at the moment to supplement main carers hours so it was useful to write it down, thought i may as well write it here jic it helpful to someone else :)
 

char47

Senior Member
Messages
151
I think good clear assertive communication is key in the caree/carer relationship as well as good boundaries.

Oh i so agree with that Andy. Clear open & honest communication is crucial, sooo crucial.
And boundaries are very important & clear discussions & agreement on these are essential, it can be quite tricky to navigate when the person is your main companion, they essentially become like a family member, but they're not, its hard sometimes but sticking to the boundaries is wise & healthy.
 

char47

Senior Member
Messages
151
Don't interrupt me and try and finish my sentences when my speech is slow and/or I am having trouble word finding
Thats interesting because i have asked mine to help me with this in certain circumstances, otherwise we're there all day & i simply will never find the word & therefore not be able to ask for what i want. For me its the manner in which this is done. So she will wait a while & then ask "do you mean .....?" Rather than just jumping in impatiently.
 

andyguitar

Moderator
Messages
6,581
Location
South east England
Yep must be one of the most irritating things when people cant wait for a sufferer to finish speaking before they butt in. Another thing I saw happening a lot when I was a care giver, was people assuming that anyone in a wheelchair is probably deaf!! Where on earth does that idea come from?
 

Seven7

Seven
Messages
3,444
Location
USA
The biggest for me was bathroom and food when I was really sick.
They gave me a ring bell but I was even so tired to reach that. So make sure to check up on me on the clock for restroom and food.
My hair!!! I felt so disgusting and I didn't dare to ask on top of everything else. But. Don't let my hair get Greasy somehow I felt more sick!

Another thing, if a person is crashed
Anything diet friendly is a lot of effort to chew! Try eating an apple while in a crash!

Low noise, smells, light ( I use earplugs and mask so I control my environment) but when they take it off so I can hear then is on the care giver to lower the volume.