[Discombobulated]

I ask because the above intro states:

A place where caregivers, family, concerned friends and partners of people with a mental health issue can come for advice, guidance and mutual support about how best to help a loved one in their life with a mental health or other concern.

The two statements seem to me to be not necessarily the same thing.

Is this forum solely for caregivers of those with a mental health issue as the first part of the sentence says, or as the second part implies, does it also encompass caregiving to people with other issues?

I’m asking this for two reasons.

One, I myself am transitioning towards caregiving to someone who has no mental health issue but several other issues. I myself have had mental health issues however so msf is an online safe place for me.

Two, this is a very quiet, to the point of almost dead, forum. If it were widened to caregiving to a range of conditions maybe there would be more traffic here?

Thanks. Realising I may be talking to myself as it’s so quiet here.

[amandalouise]

Originally Posted by Discombobulated

I ask because the above intro states:


The two statements seem to me to be not necessarily the same thing.

Is this forum solely for caregivers of those with a mental health issue as the first part of the sentence says, or as the second part implies, does it also encompass caregiving to people with other issues?

I’m asking this for two reasons.

One, I myself am transitioning towards caregiving to someone who has no mental health issue but several other issues. I myself have had mental health issues however so msf is an online safe place for me.

Two, this is a very quiet, to the point of almost dead, forum. If it were widened to caregiving to a range of conditions maybe there would be more traffic here?

Thanks. Realising I may be talking to myself as it’s so quiet here.

if I remember right this forum board was made because the other forum boards were getting overwhelmed with folks who -

didnt have a mental disorder their self but had someone in their life that did have a mental disorder.

a husband or wife of someone with a mental disorder
an intimate partner with a mental disorder
a relative with a mental disorder
an aid, babysitter, foster parent and so on that was helping someone with a mental disorder.

but the poster their self, did not have a mental disorder.

they had questions about the mental issues and how to help those in their lives who did have mental disorder issues.

there was enough husbands, wives/ couples, intimate partners, relatives, aids and so on posting in the other forums that doc john decided to give this category of people their own forum board, where they can post and ask questions and help each other get through their issues of having someone in their lives that are mentally ill but they their self dont have a mental disorder.

I think of this forum board like real offline groups where folks who do not have an alcohol or drug issue have their own support group to talk about getting through the struggles of having someone in their life who does have an alcohol or drug issue. or like a parent's group where they are parents of children who have mental issues.

even relatives, spouses, loved ones and so forth, need help sometimes when they have someone in their life that is mentally ill. this is where they get their questions answered and help from others who are in the same situation.

[CANDC]

@Discombobulated that is a great idea. I have posted here about multiple caregiving situations.

How are you holding up with caregiving duties? Those can be stressful.

Feel free to post away and if the threads show up as caregivers maybe they will change the name, but please feel free to post here and tag any people with the @ sign you want to get a mention so they know you posted here. Example @Discombobulated

CANDC

[Discombobulated]

Originally Posted by CANDC

@Discombobulated that is a great idea. I have posted here about multiple caregiving situations.

How are you holding up with caregiving duties? Those can be stressful.

Feel free to post away and if the threads show up as caregivers maybe they will change the name, but please feel free to post here and tag any people with the @ sign you want to get a mention so they know you posted here. Example @Discombobulated

CANDC

Thanks, that’s a great idea @CANDC

I’m doing okay thanks but it’s up and down I’m finding and because I’m generally prone to anxiety it’s triggered by some situations. It’s a balance between looking after myself and those I’m supporting too, I find I tend to overlook myself which is common I think.

[CANDC]

@Discombobulated I hear you. I tend to put myself last and then I get burned out, angry and feeling unloved.

So what I am trying is putting my care first. I am actually more cheerful, kind and compassionate because I am giving from a full cup. I am surprised at the difference.

CANDC

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[CANDC]

@Discombobulated just thinking of you wondering how things are going.

It is rough seeing my partner get less outgoing but sometimes they light up and join in a song. I started singing

only substituting their name for the names in the song.

What a hoot!

CANDC

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[SquarePegGuy]

I'm glad you posted, @Discombobulated.

I saw this forum quite a while ago, but there was so little content I passed it by.

My caregiving officially started when my wife was stricken with a neurological disorder and sent home after four weeks in a hospital. She recovered the ability to walk (with awkward gait and balance issues) but had / has constant pain.

She has ups and downs. I work hard to do chores during the down cycles (in addition to my day job). But then when she's "up" all I want to do is rest and recover, so I tell her to go shopping or go to the movies (or whatever) with a friend. And so we've become caregiver / patient instead of husband and wife. Maybe I'll put that in a separate thread one of these days.

[Discombobulated]

@SquarePegGuy thanks for your reply, I appreciate it. I understand what you mean about the shift in relationship dynamics, especially when it’s your spouse and how you can find yourself in caregiver/patient roles.

I support my husband, something in our case which has come on gradually. I still can’t bring myself to say I care for him because to me that denotes something far more full on than I’m currently doing (like bathing and dressing for instance). I can see some caregivers are akin to nursing care, that must be hard. I know however that he would struggle without me now and that makes me feel sad.

It must be tough doing a day job and caring for your wife? I only work part time, that’s still doable thankfully, if I didn’t get to work my mental health would suffer, I need that change of scene.

I get what you say about using your downtime to rest, that sounds sensible. It takes up a lot of physical and mental energy. I regret I let my exercise regime slide for much the same reasons.

[SquarePegGuy]

Fortunately my job is of the "cerebral and sitting at a computer variety." So the chores allow me to give my head a rest and work off some stress. And some are soothing to me. Folding laundry is my favorite.

Thanks so much for responding, @Discombobulated!

[nonightowl]

Years ago I tried to start a social group for this group of people, WAY before this forum. Sadly, it never took off and like many social groups on here, it has been dead for years. It is somewhat true in some forums I'm sure, but there are very few I view regularly.

This is definitely similar to support for people who have partners with not a mental illness, but maybe an addiction like drugs or alcohol. The partner or caregiver needs support too, and to be able to talk to people (online or real life) who relate or might have tips.

I don't know about the UK but in the US, caregiver help is very hard to find. It's expensive too, and not everyone qualifies for the government "help". They make it hard to even qualify, let alone actually apply. Nursing homes are understaffed and I hear horror stories all the time. Still, these places cost thousands of dollars a MONTH. Almost everyone would run out of money in no time. We have both a shortage of nurses and caregivers. The latter pays very little for one thing, for such a demanding job.

Sick, sick, sick system as this is an essential thing for people as they age: CARE!

[Discombobulated]

I had an assessment for talking therapy earlier this week, on the same day my husband had yet another fall which landed him in A&E. So I was kind of shaken whilst doing the assessment but that was probably no bad thing as the assessor could get the idea of the stressors in my life.

When I am talking with professionals I notice they are very keen to signpost to other organisations, that’s how it works here. The therapy assessor mentioned Carers Centres. In the UK this is one of the main charitable organisations available to support Carers. Years ago I volunteered with them myself, facilitating a social group.

Anyhow. The assessor mentioned the Carers Centre but then mentioned that they prefer to deal with registered carers. I think this means people who’ve applied and qualify for carers allowance. This seems like a golden ticket for many things.

At the moment I’m not there. For one I earn too much, you can’t earn more than £151 a week. You have to give 35 hours of care a week - I’ve never quantified it. I have no idea how many hours I give. He doesn’t require the full on washing/dressing/feeding but he is requiring more and more support unfortunately.

Anyhow just wanted to update.

Sorry @nonightowl and @CANDC I realised I didn’t respond to your posts earlier, thanks for replying, I’ve been preoccupied.

Today I’m hoping I can persuade him to have a day trip, last night he was quite down and not talking much so I’ll have to see how he is today. I thought a change of scene might help.

Got to hang the washing out first.

[CANDC]

@Discombobulated no problem respond when you can.

I would find it interesting to know howmany hours I caregive. The dishes, cooking, cleaning, laundry, shopping, sitting with them, paying bills, doing yard work, fixing things, and that is just to start. There is a lot of time where I am helping them but quantifying it sounds difficult.

Hope you find time for self care. Maybe you have a program already but I use the Healthy Mind app for mindfulness, Palouse mindfulness, adrienne complete beginners yoga (youtube) and 5 minute Tai chi (youtube).

CANDC

[If you want me to see your reply to this post please include @CANDC in your message - not in requoting my message]

[Discombobulated]

I feel petty quantifying my household input. I always did pretty much everything but now I do everything. In terms of hours I don’t know what that is. But if my husband wasn’t living here and I was alone id be doing everything anyway, apart from his laundry .

In terms of support, that’s crept up slowly but there’s no personal care and that always seems like the biggie.

[nonightowl]

Originally Posted by Discombobulated

snip:

I had an assessment for talking therapy earlier this week, on the same day my husband had yet another fall which landed him in A&E.

When I am talking with professionals I notice they are very keen to signpost to other organisations, that’s how it works here.

I had to look up A&E as I knew it didn’t stand for arts and entertainment, a network here! Accident and Emergency, comparable to the ER (Emergency Room) in the US. I know you have different words there on some things even though both countries speak English.

I also didn’t know the meaning of signpost in this context, I just found it’s a sign on a post. It sounds like it means give a referral to someplace else. Lately it feels like I don’t know ANY words as I’ve looked up words in my books too.


We have income and age restrictions for benefits or programs too. So many fall through the cracks because of this and I’m sure it’s about money.

Well if you see this know I’m thinking of you.



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[SquarePegGuy]

Gosh, I would love to get reimbursed for the caregiver effort I expend for my wife. Is there such a thing in U.S.A.? She's not considered disabled (she was denied and lost her appeal).

[nonightowl]

Originally Posted by SquarePegGuy

Gosh, I would love to get reimbursed for the caregiver effort I expend for my wife. Is there such a thing in U.S.A.? She's not considered disabled (she was denied and lost her appeal).

As far as I know you have to have the official title with the certification. I know disability gets denied to most people. Our system sadly needs an overhaul and to be realistic about how people live. And what things cost.

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[Discombobulated]

In the UK the rules are you have to provide over 35 hours of care a week to your relative(s) and you can’t be earning anymore than £151 a week. Carers allowance is £81.90. So assuming you were earning absolute max of £151 you’d be on £232.90 a week - that’s equivalent to $168 apparently. Not much to live off.

What this benefit does bring though is access to all sorts of other things - for example free accompanying carer tickets to cinema and theatre etc, and accessible seats. Accessible seats have become an absolute necessity for us recently, not always easy to find.

It isn’t easy to get this benefit at all and I doubt very much if I’d qualify. So I’m in this situation where my life has changed considerably but there’s no recognition, I’m not classed as a carer. The fact he would sadly struggle terribly without me isn’t one I like to think about but there’s no way of this is acknowledged. I think there must be loads of us in this situation, juggling employment with family caring roles, often for several people.

[SquarePegGuy]

I am very well off, and I'm grateful for that. If there's a limit to how much a state, county or town can provide to the masses, I'd rather the benefits go to the lowest (or no) income carers.

[Discombobulated]

Originally Posted by SquarePegGuy

I am very well off, and I'm grateful for that. If there's a limit to how much a state, county or town can provide to the masses, I'd rather the benefits go to the lowest (or no) income carers.

Yes I feel much the same. I’m not very well off but we do okay.

I think my main concern is that I would possibly like to access support in the future and I’m not sure if that’s possible without being recognised as a registered carer. I could be wrong, I’ve never been here before.

[nonightowl]

Originally Posted by SquarePegGuy

I am very well off, and I'm grateful for that. If there's a limit to how much a state, county or town can provide to the masses, I'd rather the benefits go to the lowest (or no) income carers.

Thanks for recognizing some folks don’t have income. In the US people are expected to have income. But if you don’t work, get disability or social security, you’re screwed. And qualifying for those are tough. One may get income from life insurance for example but it may not be monthly. It could be a lump sum.

If one is unemployed for too long you get stigmatized and employers weed you out. You need a job to get a job, a Catch 22.

You can get in home care but only if on Medicaid. Each state is different. Income limits are insane, you couldn’t even live off it. You have to be practically on your last dime to qualify then the application process is slow and complex. They demand so much proof and documentation one may not have. Digital divide is still here, especially now that they didn’t renew funding for the internet program for the poor. And many government benefits require online applications and their websites aren’t user friendly.

One can get a private caregiver but they are costly. (Child care costs have also become unmanageable.) There’s non medical help such as grocery shopping or housework, caregivers for someone with dementia which is a whole other ballgame, etc. But it costs an arm and leg.

As I get older I don’t know what I’ll do. I’m able bodied and healthy but that could change. I live alone and have no one left. A neighbor who said she’d check on me never does. So the US lacks enough resources for people in need, just like over there. Another thing our countries have in common other than language, though it’s nothing to feel proud of.

Had to rant……



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