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I feel so alone - Carers UK Forum

I feel so alone

For issues specific to caring for someone with dementia.
Good evening all first time poster here I have lurked for a while but have finally decided to reach out.

I am a full time carer for my Dad (67) who has had rheumatoid arthritis for 30+ years he has cardiovascular disease, COPD, severely ulcerated legs, to be honest the list just goes on, he used to smoke heavy but he quit six years ago after a lengthy stay in the hospital due to septic shock.

Well what's bothering me now is how fast my fathers cognitive decline has come around I took him in for an angioplasty of his leg to help increase the blood flow to hopefully heal his ulcers (seems to be working now) this was a week before christmas, well let's just say I took him in my dad and fetched him home a completely different person. He was at home for 3 weeks before he went back into hospital again, with sepsis again and pretty much since then hes struggled with remembering anything at all. He knows his name and his date of birth and who I am. He dont recognize his own home, he dont recall ever being married or having kids (despite him knowing I'm his son) he cant remember any of his grandkids and he was heavily involved in their lives. I should add that after he got discharged from hospital he was home for less than 24 hours before I had to call for an ambulance to take him back, it turns out dad was refusing any treatment at hospital and they didnt even asses his capacity so they sent him home.

Well after he went back in this time they said he has got something called Delerium as it shows the same symptoms as dementia and that hopefully he will show an improvement in the coming weeks or months, this was back in march time and hes not shown any signs of improvement hes hallucinating alot keep seeing cats and other animals. They put him on anti psychotics which seem to have worked as he dont mention seeing things that's not there as much now. He finally returned home today after a long stay in hospital I told them that I cant deal with my dad on my own anymore so they arranged 2x carers to visit 4x a day. There is so much more than I could write to this but I've already gone on and on. I think he has Dementia of some kind, I'm calling the GP tomorrow to get the ball rolling about his memory again. They said to me they dont usually start the dementia pathway until someone has problems for 6 months.

I just feel so alone right now like no one is or has experienced the same as what I am, I know there will be but whenever I have spoke to someone they dont know what to say it's got me so down I struggle to sit with my dad anymore as it's just not what I remember. I should add hes not really got any worse in this 6 months but has certainly got no better. Anyway I'm sorry for rambling on I just thought writing it out helps a little and hope I can seek some comfort in knowing I'm not the only one in the situation. If you made it this far thankyou, Luke
Hi Luke, welcome to the forum. I'm dismayed that dad was sent home like this, there are so many similar things happening. Hospitals just wanting their beds back without proper consideration of the consequences.
Have Social Services given you a Carers Assessment - a written copy?
Has dad had a Needs Assessment - with a written copy?
Do you have Power of Attorney?
Does dad own or rent his home?
Does he have over £23,000?

Your answers will help guide our suggestions about what to do next.
Thankyou for your reply bowlingbun I have had a carers assessment they did send me a letter saying I'm eligible for the NHS funded restbite service, Dad had a needs assessment in the hospital after I told them I can no longer manage on my own, I have not seen any written copy of this. Dad doesn't have any savings, he rents his bungalow from the council and i do not have power of attorney, he was managing his finances well before Christmas and he could self medicate with not really any issues and he could make his own decisions on his health so it's not something we was rushing to get into place I feel like I may struggle with this now? Since his return from hospital only yesterday lunch time I have been called by the carers who are going in each time as dad is literally shouting for me, (he thinks we live together and that his bungalow is my home) despite me not living with him since my parents got divorced.
Thankyou for taking the time to get back to me, I really appreciate it, Luke.
Luke, you need to keep a written record of what is happening.
It sounds like this discharge is also failing, very quickly.
Ask the carers NOT to call you, but to call their manager who can call Social Services, if there are problems. Their manager can email you with updates. The carers just want to call someone and leave someone else to sort things so they don't have to!
Has dad been provided with a Lifeline pendant?
I had so many battles with hospitals over my mum's care, it's so stressful. Look after yourself.
Hello Luke

Welcome to our forum, I'm sorry to hear about your situation, it sounds a lot to cope with. Have you considered coming along to one our online meetups Luke? We run them weekly, its a great way to connect with other carers who are experiencing the same feelings as yourself. There's no pressure to share anything you're not comfortable with, we've had quite a few new carers join the sessions lately and many have said how helpful and supportive they've found them. And it's good to take a bit of time out for yourself too!

Please have a look at the website and see if you would like to come along, we'd love to see you there

Care for a Cuppa: https://www.carersuk.org/help-and-advic ... ne-meetups - This social is a great way to have a little break if you are able to and spend some quality time talking to people who understand what you are going through right now.

Share and Learn: https://www.carersuk.org/help-and-advic ... e-sessions - these sessions range from creative writing activities to beginners Latin dance sessions.

And of course there is also our Carers UK's helpline should you need advice or support - Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org)
They can help provide support and guidance on:
- Benefits and financial support
- Your rights as a carer in the workplace
- Carers' assessments and how to get support in your caring role
- Services available to carers and the people you care for
- How to complain effectively and challenge decisions.

with best wishes
Ingrid
Your not alone. You are in a rough place and you needed someone to know. The truth is our friends and family simply just don’t understand and it’s very difficult to discuss something if they don’t have mental issues of their own.

I hate the fact that we are expected to fake like we are ok and not talk about how we feel. I am tired of being judged.

Hang in there. This time will pass
HI Luke
I don't have any experience of dementia, but I have had experience of an occasion my dad had a severe shock and short term memory loss for several months, it was hard on my mother.
Also my mother has had some mini strokes TIA which had short term memory issues for several months and she gets infections which affect her and confuse her.

It is difficult in many ways, it is physically draining and emotionally exhausting that your parent has this and the wait to see if it is permanent or if they will get back to themselves is interminable. My mother had a punctured lung, then sepsis and a heart attack in hospital and went rather schizophrenic with it but she came back to herself but the wait had me on the edge of my seat.

Others don't and can't understand, we all live within our own experiences.
So when it happens to them and one of theirs then you will be their go to person for support.

It's true what Bowlingbun said about the carers, so get in cohorts with them to get onto social services so that it's all recorded and a case is built up.

There's no limit on lengths of posts, you are going through a very difficult and frustrating time and it is hard to have the headspace to be concise.

Yes, at times like this you can feel very alone, the trick is to step back, take a deep breath, be pragmatic and ask for help in here and take action to get things sorted to do the best that can be done for your dad. You are not alone here.

Be your own best friend, take good care of yourself and try to see in a positive light that you are doing your best for you dad and steel yourself for some battles and bloody mindedness with the authorities.

Good luck Luke