Hands up I’m new here!
But I’m trying to work out how there is a BAME subcategory here but not an LGBTQ+ subcategory?
As an “older gay” I’m more than glad that society has done a great deal of catching up and that many things don’t have the disparities that they did. But there are just some things that are “different” from the heteronormative for those of us waving rainbow colours.
As a Gay Man caring for his husband there’s not much surprising for me about changing his sheath catheter; but I was given advice as though I were a 70 spinster lady that had never encountered a penis before.
I’m also continuously accused/dismissed as the carees SON because of a 10 year age difference; whereas I’m pretty damned sure that if I was female it wouldn’t have been suggested I was his daughter!!
I’m writing this as a cis white middle class male with all the privilege that attains me, I am certain that there are others far more marginalised that suffer some similar and markedly different indignities; but as queer folk that have grown up before these current societal changes occurred we very often have a slightly different worldview caused by our need to create rule sets of our own. It would be nice, in what is intended to be a safe space for carers, if we could have that additionally safe space to share amongst peers some parts of the navigation that are more specific to us gays and theys.
I’d welcome EVERYBODY’S thoughts
@bowlingbun please don’t misunderstand me; I’m not suggesting that we’re not welcome. Just that we have some additional “quirks” that come with the territory that an additional subcategory may help cater for
Hi Richard - you’ve already found “you’re not the only gay in the Forum”
I will confirm I have been made very welcome and never experienced any issues (well one minor one…but I wont go there)
When I first joined the Forum I didn’t make a ‘thing’ of coming out - I am so fed up with having had to do that over the years and faced discrimination that I now regard it as someone else’s problem - NOT MINE. I lost a job because of homophobia and I just don’t let people get away with it these days. On one job a bloke put up a “Page Three Calendar” so I took in a Chippendales calendar and when I was asked to remove it I pointed out the other one which had been on the wall for months and asked what was the difference…
Seriously I get where you are coming from and when I worked for the police some years ago I was dismayed to find that the Black Police Association would not allow white people to be members. Now if THAT wasn’t discrimination I don’t know what is! I don’t like it when people play “The Race Card” and I don’t like what I describe as “Screaming Queens” who set out to offend heterosexuals. “Just treat others as you would like to be treated” is my motto.
I wasn’t aware there was a BAME category - but perhaps just cos I hadn;t looked.
I have chatted with quite a few other gay people and offered the same support as I do to anyone else. I dont go out of my way to tell them I am gay at the outset, but I think I can empathise when it comes to some discrimination by Social Workers (oh yeah it happens) families and medical “professionals” as I have had it all. Not been referred to as Graham’s son yet - but often asked if I am his brother. Many of our patients thought we were brothers and when I mentioned where I lived some would say ‘oh doesn’t Graham live in that village as well, what a co-incidence…’ Oh dear!!!
My background was a very religious family and believe me Catholic Guilt can beat you down with a candlestick every time! I still have Faith but don’t Practice but unlike some ‘radical’ gay people I don’t condemn as I don’t believe I have a right to do so - would I not just be promoting bigotry like some religions do? I know you’ll be all too aware of that sort of thing from Peter’s profession.
I take your point about having an “area” to express views and opinions but I think you will find there is an almost universal lack of judgement on the Forum and in the Roll Call thread we laugh and joke and take the P out of ourselves. No-one has worked out which of @Charlesh47 and myself is the “Straight Man” in the comedy duo yet (although I believe his wife has had something to say on the matter!)
I’ve just thought - I wouldn’t mind being called Graham’s son - it might make me feel a bit younger. Mind you he is certainly looking his age now so perhaps not!
OK enough from me for the moment. Dog walk is needed as it’s cooling a bit. Good you felt able to raise the subject as I am sure it’ll promote debate and that’s always a good thing.
We are a Forum for Carers so you will be very welcome. I enjoy the diversity here. We share the ups and downs of caring on Roll Call and there is a lot of empathy, support and yes humour. Been a Life Saver for me at times.
I am totally straight (albeit Mad Cat Lady!) but I care for my medically non compliant 85 year old husband or at least try to. I am 62 and yes often taken as his daughter. Unfortunately he gets very upset about this. Not a lot I can do frankly but at times I feel bitter because I am sure if I was the same age I would not be expected to do as much as I am expected to do for him. I feel totally written off by the NHS partially due to his non compliance. But he has ‘mental capacity’ so I do have some sympathy with the District Nurses who discharged him back to the GP Surgery. So I am now trying to work out if the pressure sores are coming back and having to try and check the area on his bottom cheeks. I am trying to get him to take the inhalers properly rather than just squirt into his mouth as the coughing in the night is a nightmare for me as it keeps me awake. But I get asked ‘which Medical School did I qualify from and when’. and it is getting to the stage where I am now starting to ‘disengage’ for my own sanity.
Ha - the comment about your medical knowledge. I get that too. Start talking about his medication and I get ‘oh are you a nurse?’ (mostly NOT in a condescending way!) - my usual response is 'good gracious NO but I do listen and read as I like to know what I am taking responsibility for… That usually stops them assuming I am trying to interfere.
@selinakylie i think my chagrin on the “son” scenario is more to do with the difference in perception of how important this situation to me.
As a child you have to come to terms with the fact that a parent will get elderly and experience difficulties as time goes by, but it’s an implicit relationship that you’ve had all your life and some of the “now” is turnabout for the care they gave you as a child. MAJOR DISCLAIMER I am not denigrating or disrespecting any of you caring for a Parent- it must be horrendous
But as partner, this is the person you have actively chosen to spend your life with; this is the gaping chasm in your heart that is being slowly wretchedly torn apart. This is the person you joyously went skipping off into the wide blue yonder with and hoped to enjoy some spectacular sunsets with as the nights drew in to a close. And the tables could so easily have been turned. And you’re reduced to at best a skivvy, at worst a bystander. You’re expected to go into battle by and for the caree and the next minute be screamed at for doing or saying the wrong thing or interfering. The love you’ve nurtured and cared and curated over the years constantly shattered into millions of tiny pieces.
It’s the disrespect by the //heavy irony// “professionals” that pings my buttons. I’m not “concerned about how I might pay for a care home”, I’m bloody devastated that my entire world is being ripped apart. I don’t have a spouse/significant other to be able to go and offload these concerns to; he’s sat right there in front of you going through hell. So whilst he may be difficult, awkward, in pain, intransigent, I might just bloody well be too as it’s killing me just as slowly and surely as it is him.
And breathe
Now to compliance! Have you got a good local community pharmacist? They are a godsend and will help you in all sorts of ways to create a regimen where there can be as much compliance as possible.
Does he use spacers with his inhalers? They drastically improve the delivery of the drug to the lungs rather than coating the mouth and throat. Get the asthma nurse in to visit and demonstrate the how to use. Check whether he prefers a spacer with mask or without.
If he’s had breathing issues for a while, he’s potentially glued to his “blue puffer”; yes they worked in the 1970’s and so does a black and white telly… other things have improved (he’s old enough to remember how to double de-clutch!) and so have the inhalers! If he uses his prophylactic inhaler properly morning and evening he will have less and less need to use his ventolin/salamol/salbutamol. If he’s still constantly needing his short term relief of the blue inhaler then get an asthma review to get a more appropriate prophylactic/preventer for him
@AUM3RLE Thank you. He thinks he ‘knows everything’ and would not co-operate with the asthma nurse when she tried to show him how to use the inhaler spacer. I have thought about the pre boxed pills but he often does not know what time or day it is. He is on blood thinners. He has been referred to the Pulmonary Re hab and we are still waiting for the course to start BUT I am sure he wont finish it. I get lots of chemistry lessons on how he knows more than the Consultant/GP/Nurse/Pharmacist. Frankly for my own sanity I am disengaging. Yes I prompt a couple of times re the pills but totally given up re the Spacer. I have explained endless times the Fostair is to keep the Astmha under control and the Ventolin for attacks. But when things stabalise he stops using the Fostair!!! I have no patience or compassion left sadly. I have been caring officially since 2013 but unofficially probably a couple of years longer. I wish I could say I do it out of love but have been so ‘ground down’ over the years I now do it so that I can keep my home. I get threatened with divorce if I were to try and put him into a home and tbh he does have ‘mental capacity’ even though I think he is a danger to himself and we are getting to the stage where he needs 24/7 supervision.
@selinakylie my heart goes out to you for 10 years. I’m breaking just coming up to the 1st anniversary. I don’t think I want to envisage 10 years of this. I can completely understand a level of disengagement!
Because I have fingers in this pie…
The pre-filled online medication stuff sounds fab, but it means one less set of scripts through your local nearby physical pharmacy. The one you depend on to come through with last minute changes to meds, or the antibiotics, or the fridge goods (and yes Fostair counts as one of those).
The online pharmacies also aren’t any good for:
Chatting things through without an appointment
Chatting things through full stop; it’s a purely digital solution (in every sense of the word)
Thinking outside the box and looking for potential alternative holistic solutions
Checking in on the carer and how they are doing in all this
Speedily returning that emergency antibiotic script to the spine
The real downside is that if not enough people use their local pharmacy for medication supply, they close. They’re a private business with one extremely expensive member of staff. It’s a use them or lose them scenario. The good ones will be your friend and sounding board and all of them will be an actual “medical professional” when you need to throw that back at the beloved
My local Pharmacy are very good and do deliver so if he needs antibiotics urgently they usually come the same day. He had several bites and was putting Ajusel on them but I did get him to phone the Pharmacy and thankfully they agreed with me that this was not a good idea so antihistamines were prescribed. I do not drive so frankly it is a godsend and I do put 5* reviews on Facebook. They were good with him with regard to the Covid vaccinations too.
Husband nearly died in 2013 with an acute on chronic brain heamatoma btu then he was drinking nearly a litre of vodka a day.
2016 his kidney function went down to 7% after a kidney infection became sepsis. Again nearly died.
2020 Pulmonary Emobolism and again I did the ‘right thing’ and encouraged him to phone 111 as he had issues breathing. Again mega serious but after he stabalized he discharged himself. He has been on blood thinners since then but having a real challenge right now to get him to take them.
I feel for you if it has been a year. My only advice is to try and ‘carve out’ some kind of life for yourself. For me it is my Book Club even though I have to take him with me. I am also an Admin for a Social Group but sadly can only attend very local events as have to be able to get back. Very hard as it is a lovely supportive group and I keep getting offered lifts and members saying if we went to a theatre or cinema matinee could I come as husband says I cannot go out at night .(TBH I have more freedom at 16 than I do now). I could ‘disobey’ but would risk coming back to him leaving keys in the door and/or risk of him letting the indoor cats out because as he says 'police would not arrest him as he would go into ‘poor little old man mode - cat got past me boo hoo’. Sorry for the rant but I no longer even like my husband. He has no friends and my friends say they see him as a price of being able to see me! He is a total nightmare at group meals complaining and kicking off. Even at the Book Club he said he made one member and previous supporter of his drive home in tears as he had kicked off that much. I call him ‘The Senile Toddler’ and this is the polite version!
@AUM3RLE I think the big problem for @selinakylie is that husband is totally non-compliant in ALL respects. He knows better than anyone else on every subject. He won’t use a spacer or use the inhaler properly but squirts it directly into his mouth/on his tongue. No on can convince him the correct way to use it!
I agree that online dispensaries can seem useful but a local service provides much more than just pre-packaged drugs. Our GP has a dispensary in each surgery (four in the practice as it is a very rural area) and the staff are amazing. When G has had to have antibiotics due to his repeated UTIs they prioritise them and phone me to say they are ready even before a doctor calls sometimes as they know he needs them quickly. Now I put up his weekly meds boxes it is more organised, but he used to keep running out and putting in urgent requests but not once did they complain or criticise him. I now put in online requests to them 10-14 days ahead of schedule so they have time to order if stock is low. Just trying to be helpful. I even put on a note saying when I will collect so they can see if it’s urgent or if no rush.
In Bristol there have been some instances of pharmacies closing down and the remaining ones not being able to cope and having to ask people to wait two weeks or more as they dont have enough staff to cope with dispensing requests.
@AUM3RLE Sorry didn’t mean to go ‘off topic’ and welcome again to the Forum. We are a lively group and it is well worth you ‘lurking’ on Roll Call and hopefully joining in when/if you feel ready.
@selinakylie it wasn’t a problem at all. I’m so sorry you have to stare down the barrel of that gun every waking minute. I just discovered that link and went “oh so they do recognise the issue” they just haven’t given it any space themselves
