Hi, I’d like to introduce myself. My names Sue Marshall and I’ve been caring for my disabled husband Phil for over 20 years. During the last couple of years his health has deteriorated and I am feeling extremely isolated and lonely. I wanted to join a forum so I could chat with others who are in the same situation for moral support.
Hi Sue, welcome to the forum. Has your husband had a Needs Assessment from Social Services, and you a Carers Assessment, in the last year. Are you getting any help, any time off?
@Sue24 Hi Sue. Welcome aboard!
Just a quickie: I strongly recommend you change your username as soon as possible. It’s not really a good idea to use your full name on forums - it helps keep things anonymous, which makes it easier to talk about things.
Loneliness and isolation are a big feature of being a carer: it sort of creeps up on you because you’re so busy caring that at first you don’t notice it.
Currently I’m caring for my wife, who has a spinal cord injury, my eldest son who has a number of issues, including depression, sleep apnoea, and spasms caused by a neck injury that went untreated. Long story. I also have a son with autism who lives in his own place, but we’re still involved in his care, and used to care for my parents and sister, all of whom are no longer with us. It wasn’t because of the caring, honest!
Do take a look and join us in “Roll Call” - it’s where we all check in and chat, a sort of over the garden fence drop-in…
I and my partner care for adult daughter with schizophrenia it is being on call 24/7 and lots of practical help with running her home and trying to help her keep safe.
Welcome to the forum, it is a desperate feeling caring and feeling overwhelmed and alone.
I care for my 84 year old husband. Totally get how isolating and lonely it is and 20 years is a long time. It is a very supportive ‘Roll Call’ so looking forward to getting to know you and the challenges you face - you will find members totally understand.
Hi guys, thank you so much for your kind messages. I feel a lot better after reading them.
Hi, thank you for your message. He had a care assessment a year ago but his Heath has got worse in the last 12 months. I’ve contacted our OT and they’re arranging another assessment and for a physiotherapist to assess his mobility again.
Welcome to the forum. Take a look around and post in the various sections to offer and request advice. Roll Call and the social section are good too for having a chat.
Carers uk also run virtual meet ups
Like me, you have been caring a long time. It does take its toll however much you love the person you are caring for.
I care for S he has autism, related learning disability and health needs. I find caring lonely too. I would love more of a social life but it’s not easy to achieve as I’m either at work or with S. S can’t be left alone so we tend to come as a package (except on my days off when he is at his college day service for a few hours and then most of my friends are working.)
I agree with Charles it’s a good idea to change your username to protect your and your husband’s identity- if you can’t work out how to to this let us know
It’s good you have contacted the OT and your husband will be seeing the physio as well. His Needs Assessment for support from social care and health will likely need updating too.
Sorry my answer is muddled I’m using my phone and it’s not easy to edit or view what you are typing!
@Sue24 Hi Sue - and another Welcome to the Forum!
I care for my husband, Graham, who is 67 and suffered a stroke 18 months ago. He’s had a series of health issues including Prostate Cancer and Cardiac Issues and now has problems following a Retinal Haemorrhage. We worked together and had to close our business very quickly after his stroke so I can care for him 24/7. He hasn’t had major issues from the stroke but if he is in a busy area or people start talking at once he gets flustered and gets ‘brain freeze’ then gets disoriented and a bit distressed.
Our new dog, Buster, is the light of our lives and is calm and caring, so that’s a bonus, even though I have to do all the walks when I might perhaps like to be a couch potato sometimes.
Hope to see you on the “Roll Call” thread - if you check it out you’ll find that sometimes it’s serious and sometimes just making fun of ourselves (or even some making fun of me - isn’t that right Charles?)
Hi Chris, nice to meet you. Sorry to hear about Grahams ongoing health issues. I’m glad the stroke wasn’t too major, though I do sympathise re the issues it has caused. My dad had a stroke 10 years ago but is doing okay.
We sold our house a year and a half ago to buy a bungalow so my husband Phil could get around a bit easier and mum and dad also moved in with us.
My daughter and her partner have just got a puppy. We’ve always had dogs up until a couple of years ago so it’s nice to have one back in the family. Yours sounds great, I do think it helps having a dog around and like you said it saves us becoming couch potatoes .
Hi Melly, thanks for your message. It sounds like you are doing a great job in caring for S. I also work full time which doesn’t leave a lot of spare time. I’ve had a look at changing my user name but it won’t let me edit it? I’ll keep trying and hopefully will be able to sort it soon.
Hi, thank you. He’s had a needs assessment over a year ago but I’m just in the process of arranging for him to have another one. I was lucky to be able to have a week away the week before last and had carers coming in whilst I was away. Unfortunately Phil had a TIA whilst I was away which has caused a knock on effect re his movement but we’re hoping this will resolve itself soon. I’m encouraging him to try and keep moving as much as he can to build up the muscle strength again. His mobility wasn’t great before but if we can get him back to where he was before I went away that would be great.
Hi Ula, I’m sorry to hear about your daughter, that must be very tough on you both.
Hi Helena, thank you for your message. It’s nice to hear from you. I’ve been thinking about finding a group to join like this for a while and think that it will be great to be able to talk to others going through similar. I just need to get used to how to use this site as not great with technology
Hi @Sue24! Welcome and lovely to meet you.
I’m sorry to hear your husband’s health has deteriorated.
I thought I’d share some details of my story too
I’m currently living with, and caring for my Mum who was diagnosed in 2019 with 2 separate cancers. In 2020 she had 2 surgeries, chemo & radiotherapy. In 2021, one of the cancers returned and now has daily pills to control it. She has some osteoarthritis mobility issues & lasting effects from chemo/radio therapy but manages well. Mum & I have a close loving relationship which was cemented through extremely challenging times looking after my dad.
My dad soldiered through multiple operations to sustain his health (heart operations, congestive heart failure, rheumatoid arthritis - titanium knees hip, tendons cut & stitched). However, in 2015 an infection caused internal bleeds & a traumatic hospitalization, caused vascular dementia. He was diagnosed with bladder cancer in 2016, had a trans-section & then another in 2017. From that point, the plateaus of stability were shorter & the step-down declines sharper.
The accelerated decline of my dad meant from 2018 to his death at home in Jan 2020, in tandem with Mum’s cancer diagnosis, we went through one long nightmare of hypervigilance, paramedics, falls, and hospital issues.
In 2015 I lived in Brussels (I relocated >10 times in my career) but took a leave of absence to help care for Dad. I returned to work end of 2016 but then chose to resign in 2017 to support Mum. I set up a small company (to keep my little grey cells dancing) that fits around my caring for Mum.
Given the nightmare & rollercoaster before, we relish the calm of now, despite the uncertainties & limbo-waiting-for-results, that living with cancer brings.
I went to the CarersUK conference in 2018. Where I made a couple of good friends who I text quite regularly. I returned to the forum recently and enjoy the empathetic connection; the laughs, photos, and camaraderie, that stems from that underlying, unspoken sense of mutual understanding & appreciation!!
What kind of puppy does your daughter have, Sue? What kind did you have? I have dog & cat envy of several other members given the lovely photos I’ve seen & stories shared. Not an option for me given my moves and work before, and not something Mum is into now.
If you do manage to get a little time to yourself what do you enjoy? Reading? TV? Those are topics I could share endless recommendations on
Hi Victoria, it’s nice to hear from you. I’m sorry to hear that one of your mums cancers returned but glad that she’s managing well. It’s nice to hear that you have a close relationship with her. It sounds like you’ve been through some very tough years with both your dad and mum but I’m glad things are calmer for you now.
I think that I will find the support and company from talking to you and others a great support. My husband Phil has been ill for a number of years now and is only 56. He is severely overweight and has osteoarthritis, he can only walk using a Zimmer frame and is now virtually housebound. He hasn’t been able to get in the car for around a year and a half now as can’t lift his leg high enough. He does have a mobility scooter but can barely walk to the bathroom in our bungalow let alone get outside. We’ve had adaptations done to the bungalow such as a ramp and wet room but he’s struggling to move at the moment. He has other Heath issues such as diabetes, sleep apnea, high blood pressure, and insomnia. He can only use a riser recliner chair and has a hospital bed but only manages to sleep in that for no more than an hour a night. The rest of the time he’s asleep in the front room in his chair. He had a TIA the week before last and this seems to have affected the limited amount of movement he had before, hook trying to encourage him to get up and move every few hours to build his muscles back up.
My daughter and her boyfriend have a 4 month old golden retriever called Buddy. Phil and I have previously had 2 retrievers over the years so it’s lovely to have another one in the family. It is great that I can send him home though at the end of the day (he comes to our bungalow whilst they’re working so he’s not left alone in their flat)
I work full time so didn’t have a lot of spare time but like to read and watch TV. I’m looking forward to when I can take Buddy out for long walks .
@Sue24 I think that exchange gives a hint as to what SOMETIMES appears on the Roll Call thread - as well as serious support!
looking forward to reading and using roll call!