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At a crossroads in life

Hope45

Hello, I'm not one for expressing my weakness, or my life online, but I feel I really am at a point in my life that I have become lost and pretty fearful for what my future holds. I would like to discuss my past and current situation to see if there is any advice or information to point me in the right direction as to how I can move forward from here.

I'm 43 year old and male. My problems started when I was a teenager. I started to withdraw from society and my mum took me to doctors and then mental health team. I was diagnosed with Social phobia, and then major depression and a panic disorder. Leaving the house was becoming a challenge and to this day many years later It's got worse to the point of close to being housebound.

I always had my mum doing everything for me right up until she got dementia and now it's advanced she is unable to help me. I still do phone calls, but It's just not her anymore and she needs support from my family. Now my family is of a decent size. I Have a brother and sister and a good few niece's and nephews, but no kids of my own.

My brother took over from my mum in helping me with shopping, managing money, taking me out and other needs. Now that help is limited to my niece's and nephews that drive as I live a good distance from everyone. That's with my families work commitments and focusing on my mothers health through her dementia.

For a while my life was manageable after I met a girl online who understood me and we stayed together for a good few years. We had plans for a future and she already had a little boy who I treated as my own. My world came crashing down after i had an accident which caused nerve damage in my pelvis area and lower back. It was being diagnosed as pudendal neuralgia and chronic pelvic pain after around 8 months of various tests and pelvic floor physio. That was 8 years ago and the nerves never healed. I still get pins and needles constantly though it has deminished slightly, but the symptoms including ice cold genitals and numbness caused the breakup of my family. My partner left me and my stepson who i miss dearly. This left me with sever struggles and feelings of not wanting to live anymore . I had a nerveous breakdown and just wanted to die at this point.

Then when things couldn,t get any worse I had a heart attack and now have heart disease and angina. I have never recovered and after investigations into mobility and breathing problems they found i have moderate paraseptal emphysema on my lungs through being a heavy smoker with stress.

Daily activities and getting around are now very difficult. Even walking up stairs in my home I need to rest and recover and taking inhalers to help breath. I really could do with being homed in a bungalow closer to my family for easier support and management, but so far even with letters from my OT i haven't had any luck, still in the waiting list.

The reason I moved away at that time was because i had been abused for years by people in my street where I lived. Tortured because of my disabilities. I had a knife held to my throat and my flat wrecked one day when i wasn't at home. I needed out of that place and after a discussion with my family it was decided i should move away and try a fresh start. That was years ago and now with these extra health problems It's took a turn for the worse. I now am miles away from my family and not getting the help i need.

I fear of being homeless as i live private rental, I'm afraid of losing my benifits which is a lifeline for me to at least have some sort of life without fear of no money cause there is no way i could hold down a job. I'm afraid of being alone the rest of my life and unable to keep friends or have a relationship again. I literally have no one only my neices and nephews, who try there best to support me. This isn't enough and if it wasn't for my wee dog I think i'd rather just be dead. How does one move on like this with constant pain stress and worry ?

I'm currently getting enhanced living and standard mobility, but that was 4 years ago before my heart attack and copd problems. My main diagnoses was always social phobia. with all these changes with benefit and housing, The isolation and feeling unloved or no point continuing is getting stronger each day. I don't know what to do.

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Hope45

hi Catherine, I’ve had letters, emails etc from my family and OT with no success. The housing officer told me the wait for a bungalow is 20 years for someone under 55 . Even with my conditions and disabilities she wasn’t very helpful.

I spend a lot of time in bed because I find it hard to sit with my nerve pain which is greatly affected when seated I need a donut cushion to sit on and even that is just bearable.

I will keep pushing for to be homed but so far no luck only an upstairs flat offer which I turned down as it was no good with all stairs, plus I need a separate dwelling due to my mental health and past experience of shared flats.

Thanks for your words and yes my dog keeps me going. He looks very much like yours.

figraspberry41

#Hope45,

I am so sorry to read of your situation. I cannot imagine what you are going through at this time. However, can I ask do you have a Social Worker, who might be able to offer you some help with getting you re housed back nearer to your family.

It is very difficult for you with your mother having Dementia, that is a dreadful condition to have (Both my parents had Alzheimer's), and I have been a qualified nurse, so am reasonably familiar with the problems Dementia brings and how hard it is to cope with this devastating condition.

You have suffered a lot of trauma in your life, coupled with your other mental health issues, I'm not surprised you feel isolated and unloved. How do you cope with talking to people on the phone? Is this too scary for you? Might I suggest that there is the Samaritan's that you could call in a desperate situation.

You may also like to see if your GP surgery has a Social Practitioner, (this is a relatively 'new' role and was not around when I was nursing), however, I believe part of their role is to sign post people to others who can offer some solutions (or at least look into some places that may be of support and help for you.)

Your GP may also be able to help by writing to the housing department where you want to go to put your case for an urgent review. I won't promise that the GP will do such a letter nor that it will (if GP does do a letter) be any quicker responses but at least you can try this avenue as well, so that way you can feel that you are being 'pro active' in trying to help yourself. Also, do you still have contacts with a Mental Health Team, who also may be able to put your case for you, especially as Social ability is one of your primary conditions.

I am no expert by any means nor is Mental Health Conditions an area that I have any expert knowledge of other than I do have neuro diverse conditions myself and have experienced some conditions through my work but these may be places to seek some kind of support for you whilst you are experiencing this crisis.

Please try to remember although you feel alone, and getting physically out of the house produces major challenges for you, there are people out there who can 'help' you in different ways. I hope this is of some use to you and that you do not give up in despair. It may seem like an uphill struggle now but I'm sure that you will find some solutions to some of your problems soon.

Hope45

https://forum.scope.org.uk/discussion/comment/1047983#Comment_1047983

hi, thank you for responding. I don’t have a social worker and not sure how to navigate to get one. I’ve rang my mental health team and got a letter to explain things , but the housing officer says the housing situation is a long wait even with the evidence provided it still will be a while. She says it’s because I’ve a roof over my head atm and would need to be homeless to get any more points.

I don’t think I could survive in a hostel or whatever with my dog and too many people in it.

I haven’t got the right support and not sure about who I need to talk too about all this. My family have wrote letters also, but apparently I’ve got the maximum points I can have atm.

It’s all a nightmare especially feeling so lowly, and depressed to do anything. My pillow is soaking every morning with tears before I get up because I don’t know where to find the strength to get through the day. Housing is a problem , but these feelings of doom and despair are seriously taking a toll on me mentally.

Albus_Alumni

Hey there @Hope45 and welcome to the community.

Thank you for sharing your tale, I know how much courage that needed, it's really appreciated. It sounds like you've really been struggling without your mum, understandably so. So I think what we need to be looking into first is getting that support back for you.

I've popped you a little email, if you could keep an eye out for it, that'd be great.

Littlefatfriend

Hi Hope45

Unfortunately demand for bungalows has well outstripped supply here for decades. There simply aren't enough of them. Companies make more profit building and selling larger properties and the government hasn't built bungalows since the 1980s.

However, I encourage you to also consider self-contained ground-floor flats and perhaps flats with lifts. Far more of them are available. When I studied and lived in the North-west and then mainland Europe I lived very happily in a few of them. I use a wheelchair all of the time.

Essentially I'm suggesting you consider what types of housing other than bungalows may work for you. If you can be as flexible as possible it will likely help.

The addition of having a pet may also limit your housing options to some extent but it probably should be possible. Lots of people do.

Keeping a reasonably open mind is likely to help you. I appreciate that can be complicated, but it's often worth it.

A social worker also ought to be able to offer much more advice because they'll know the area where you live/want to live, and they'll know far more other useful stuff than I!

A way you could access a social worker is by referring yourself for a needs assessment. That's how I did it, more than once (in different counties). That will very likely be a good route to assistance. You can do all that online here:

https://www.nhs.uk/social-care-and-support/help-from-social-services-and-charities/getting-a-needs-assessment/

As figraspberry41 suggested, your GP is also likely to have available what I've seen described as social prescribing, they will likely have a link worker for that based at or regularly visiting your GP surgery. I expect you (or a social worker) could organise a home visit from them if that helps.

"Social prescribing is a key component of Universal Personalised Care. It is an approach that connects people to activities, groups, and services in their community to meet the practical, social and emotional needs that affect their health and wellbeing."

https://www.england.nhs.uk/personalisedcare/social-prescribing/

Ask your GP.

It may take time and patience will likely help you, but solutions should be available.

Good luck

figraspberry41

#Hope45,

I'm pleased that other people have also given you some ideas. You certainly can phone Social Services and as for a home assessment of your needs.

I would suggest that the person who suggested thinking more of a flat rather than a Bungalow as they are correct very few available and tend to go fast. That said, you can also try your local Council and see what may be available locally. Some areas have Bungalows in Council areas that might meet your needs, although you may find that due to your age you might not fit their criterion. (Not sure but only going on people that I've met through my job). You might get some support or ideas from other Charitable Trusts, no harm in trying as many avenues as you can.

I can sympathise with the housing situation a bit, I'm aware that there is desperate need for housing, my son and his family had to be physically homeless and had to move into Bed and Breakfast before they were temporarily housed in a two bedroom flat for a family of five, eventually they were housed, so I appreciate that your wait will seem like an eternity for you, but try to be patient.

It might be worth you considering talking with your GP as regards how all of this is making you feel right now and possibly consider (if GP suggests) some medication to help with that too. Again, I can appreciate you may not like being taking medication, sometimes it does become necessary to enable you to see things in a more positive way and help you manage this crisis.

I hope you get some positive help you need soon. Good luck.

Hope45

thank you all for responding. Will phone for an assessment of my needs and take it from there.

I understand getting a bungalow could be difficult. It doesn’t have to be one. A separate dwelling type flat or apartment would do. Something that has a garden and a bit of privacy.

I had a very traumatic experience being in a shared block of flats and definitely don’t want to have to move from my home here the past 15 years to somewhere I hate to be closer to family. I would not cope if I hated the place. That’s what worries me and why a bungalow would be ideal , but sometimes things aren’t possible in life.

The strain on my mental health trying to come to terms with my conditions is very overwhelming right now, I feel so alone and yet don’t want to mix with anybody due to social phobia. Every day is an uphill battle to just get to the next day.

I know at some point soon I am going to be unable to manage on my own and that scares me cause I’m only 43 and never had much of a life. it’s been a poor quality of life for many years.

will see what the assessment process is and if I can get any more help other than my CMHT.
thanks to those who responded

NeuroEve

https://forum.scope.org.uk/discussion/136629/at-a-crossroads-in-life

My heart goes out to you and your situation. Your little pup is gorgeous by the way. As a mother to 2 adults who are not able to work due to disability and have complex needs and will always need support, it’s heartbreaking to hear your story. You need to contact or get someone to contact your local authority and ask for a needs assessment. Our daughter has had a one and we also looked after an uncle for a lot of years who also had a needs assessment done, I wish you all the luck in the world and sending hugs.

Hope45

https://forum.scope.org.uk/discussion/comment/1048109#Comment_1048109

Sorry to hear about your situation. It makes me tear up to hear of other peoples stories about life.

I’ve lived for the past 25 years with these mental health problems. I feel robbed of my life. It’s been more like an existence with not many good memories to talk about. Friends and family have slipped away over the years and I feel like I don’t have anyone in my life. Now with the physical problems I feel done.

I’ve got some good advice and links from people on here to work out my next step. For ages I have been reading on here but never posted until this post as I’m at my wits end and struggling to cope as things stand. I’d really need an advocate as that was what my mum was for me. Without her help I feel like I’m lost and don’t know what to do. I’m terrible at talking face to face or on phone as I have difficulty explaining things. It takes me long time to construct these messages.

My childhood wasn’t great either. My dad had bad mental health and would be trying to top himself every few weeks. He spent 9 months in a facility and put my family through hell. I believe that played a significant part in how I ended up with panic disorder, and sometimes feel like I’ve got his genes passed down to me. We would of got calls to say your dad is lying over at the shops off his rocker and my mum would of had to go over and get him either an ambulance or taken home to bed.

My brother used to help a lot, but he has a lot on these days and sends his kids my nieces and nephews to help with some of the things my mum would have done, but it’s not the same. I’m their uncle and feel shame about it all.

I know there is a lot of people on here with their own personal issues and problems. Makes me feel like being a burden on people.

I also believe I have BPD or something that’s been missed in my diagnosis process as I have all the hallmarks. Tried explaining this to my psychiatrist but she didn’t say much only my history points to Social Phobia. To me things are far worse than Social Phobia. It’s like elite level mental illness to the point I can’t function properly even when I’m on my own at home

My life’s just a mess and I don’t feel like I’ve the strength to go on much longer. As I said earlier, I’m just living for my dog as I suffer from abandonment issues and would never leave him. He’s my best and only friend and the only thing keeping me going. I need help to get some sort of support preferably my family, but I’m just so far away.

Kiki23

https://forum.scope.org.uk/discussion/comment/1048186#Comment_1048186

https://www.youtube.com/watch?v=NSWTZllisl0&list=RDNSWTZllisl0&start_radio=1

Greetings dear heart….

Sometimes I want to say and write things, especially pertaining to things that I can relate to…. But most times a song that expresses what's in my heart is the most I can share x