New and really struggling x

Ang79

Registered User
Jun 11, 2016
9
0
Hello I'm new to this support site and would love to hear from people in similar situations as I feel so alone. I'm 36 and my partner is 44. He has a lot of health problems including epilepsy, diabetes type 1, neuropathy, he's registered blind and is in a wheelchair most of the time. I am his full time carer as well as partner. Just before Xmas last year he was given a diagnosis of vascular dementia after lots of tests and a brain scan but since leaving the hospital we haven't heard a thing, had no support and I have no idea what to expect or what happens next. My partner is a wonderful man and I love him dearly and we never argue about anything but lately he seems rather snappy and he's questioning things I say and turning them into an argument. His mood is extremely low aswell more so than usual with all his other health problems. We have a lovely family and I have a few good friends but I don't think they understand what we're going through. I just feel so low and alone and don't know who to turn to. My partner can't get upstairs anymore and has slept downstairs on a chair for the past 12 months and I'm upstairs on my own which doesn't help as the closeness between us is being affected and I really hate to say this but at times I feel more like his nurse then his partner and I miss the closeness we had. I don't really get much time for myself and I'm run off my feet most days as I also have a teenage son and elderly parents living with me which need help too. I hate to sound that I'm complaining because I love them all so much but the future just seems so bleak at the moment and I'm finding myself crying more and more which isn't me. Sorry for the long post im
just desperate to talk to someone that understands. Thank you for taking the time to read my post xx
 

Annypurple

Registered User
May 6, 2015
44
0
Welcome to this site .... you've got such a lot on looking after so many people...I'm really sorry to hear about your husband....complex illnesses cause such distress .... It's the ILlness not the person (as is said here) who is causing the distress. Can your GP give you better support? Make contact with other services locally via your GP? We were also given a diagnosis and to,d to go away and live our lives, that was four years ago and only this year have I made contacts finally with people who were here all along. It's just our GP didn't think, or know. It's worth searching out help. Sounds like you have become his nurse/carer and maybe you could be helped more and let someone else take care of some of his needs so you can keep some of the relationship you had? It's very hard and I'm sorry to read what you're going through. But sounds also like you have huge love and care for your family.
 

Ang79

Registered User
Jun 11, 2016
9
0
Thankyou anny. I think I will go back to the GP. He just gave us a little leaflet last time we went and told us to keep talking which we do all the time. I do worship my family and would do anything for each one of them it's just at times they seem to think I'm super woman lol and I'm really not. The other problem I have is my partner is no good at all with socialising and he's really shy until he gets to know someone which can take quite a while. I have been advised to get some respite for the both of us but he refuses to go to a care home / centre for the day or night ( which I wouldn't like either) and he's not keen on the idea of a stranger coming to the house which leaves us stuck really as our friends are busy leading their own lives and even though my elderly parents help all they can like looking after him for an hr while I nip out to do shopping that's about all they can manage bless them which I'm truly grateful for. I think at times its just having someone else to talk or off load too. I'm normally such a positive person that trys to see the brightside in everything but at the moment having to drag myself out of bed in the morning is becoming a task in itself. It's also a horrible feeling being with the one you love but at the same time feeling so alone. I really appreciate your reply like they say it's good to talk. Thankyou xx
 

Beate

Registered User
May 21, 2014
12,179
0
London
Good god, woman, if I had as many plates to juggles as you, I would complain too, so don't apologise for it!

You're running yourself into the ground the way you're going! Have you had a carers assessment yet? You're entitled to one by law. They or the GP should at least refer you to an OT to check over your house for things they could install. Your partner shouldn't have to sleep on a chair!

I would also suggest you make contact with your local Alzheimer's Society and the Carers Centre for practical and emotional support. They can do benefits checks and help with filling in forms like LPA. You need a lot more support than you're getting right now!

I know you sad he's shy but for your own sake, try to get him to agree to a befriending service like Age UK do. It will give you some respite to do other things, and if they match him well, he could make a friend.
 

Ang79

Registered User
Jun 11, 2016
9
0
Thank you beate. I have had a carers assessment it was them that mentioned the respite and the ot's have been good about his other conditions and managed to get us a recliner chair for him even though I know it's not ideal . It's just been with the dementia diagnosis that we both feel there's been no support whatsoever with who to turn to and what happens next. Thankyou for your advice to contact the alzhemiers society I definitely need to do that and I'm part of carers UK but I've never gone to any of there sessions or known really how to use there services I think it's just because I'm so unsure of it all but I do need to start asking for advice and help for us both. Thankyou xx
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,444
0
Kent
Hello Ang

Please try to find out more about available support in your area. I know you may find many people are much older than you and your husband but if you could find a support group you could both attend it may help you to talk to others who are in similar situations.

I`m sure Carers UK will help you if you explain how difficult you find taking the first step.

I don`t know where you live but if you click on the following link, it might show you what the Alzheimer`s Society provide in your own area.

https://www.alzheimers.org.uk/site/...=200121&_ga=1.230376028.1365205054.1462899247

It worries me your husband is sleeping in a chair. I`m afraid you may need to shout a bit louder to get your needs met. If Social Services think you are managing nicely they will let you get on with it. Please ask for more help.
 

HillyBilly

Registered User
Dec 21, 2015
1,946
0
Ireland
I have had a carers assessment it was them that mentioned the respite and the ot's have been good about his other conditions and managed to get us a recliner chair for him even though I know it's not ideal
Having to sleep in a recliner chair is surely unacceptable?!
Ang79 you have so much on your plate. Am glad you've found Talking Point where you'll be able to get advice and support.
Is moving to more suitable accommodation an option/possibility?
 

Casbow

Registered User
Sep 3, 2013
1,054
0
77
Colchester
Hello and welcome to Talking point. You are dealing with far too much on your own and no wonder you are feeling so low. Please contact Alzeimers society tomorrow and when they hear your circumstances I think you will have a visit from one of their people within no time at all. They will try to point you in the right direction and advise you on some help. They really are the best first call. There may be a Singing for the Brain support group near you which you and your partner can go together. Other clubs with people in the similar situation where you can have a chat and an hour or two of getting out of the house. I understand that your partner does not want a carer in or to go to a day centre as my husband is the same. He was diagnosed 9 years ago and so far I have managed him on my own. But with good medication. Back to your situation, you have more than dementia to deal with, and other people in the house as well. so you really do need some kind of support.I wish you all the best and hope things can be done for you, to help you and yours. Keep posting it will help you. It has certainly helped me.xx
 

Scarlett123

Registered User
Apr 30, 2013
3,802
0
Essex
Hi Ang, and a warm welcome from me to Talking Point. :) I'm gad you've found us, and you'll get lots of help and advice from the wonderful people on here. And you'll get sympathy too, and my goodness - you need it.

You have so much to cope with, and you and your partner are young, and poor man, he's been dealt a lousy hand of cards. As others have said, you need to shout louder to get help. I tried to be brave and stoic for years, and that got me absolutely nowhere, whereas daily phone calls, to the Powers That Be brought results.

I wish you, your partner and your family well xxx
 

vannesser

Registered User
Apr 4, 2016
436
0
well come

sorry to hear abought your husband .I know it is hard with his other problams .my oh as diabetes typ 2 and has trubble walking do to a strock he had 14 year a go and as just been diagnosed with vascular dementia.
when we whent for test docters at memory clinic all we was told was to go home and get on with it as no one knows what will happen and when like in his words how long is a piece of string.so that's all they tell you.we found a singing group thay do and we go to that hope you get sorted soon
 

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