Post by victoria123 on Aug 14, 2018 3:07:56 GMT -8
Looking for some help & advice. I've been married to my husband for 28 years. (Sci c5,6,7 T1 resulted from rta 30years ago) I've always been his carer & do everything. Bowel care, catheter etc with no outside help what so ever. I'm 46 next month & I'm feeling absolutely knackered & in need of a little break away by myself. Thing is I don't know where to start in getting help to have someone take over from me whilst I go 😔 any advice or help would greatly be appreciated. TIA. x
Firstly, I want to thank you for being such a great wife to your husband! The fact that you’ve been your husbands caregiver for so long is astounding. I can totally understand why you’re tired and in need of a break.
I personally don’t think it’s fair to use your partner as your primary caregiver since they’re your companion, not your nurse. With that said, I think you need to explain to your husband that being his caregiver for all those years have taken a toll on you and you need to rest. It doesn’t mean you love or care for him any less and you need to make him understand that. Tell him that you guys need to arrange some type of nursing care to take the physical burden off of you.
Hi victoria123. Does the government offer any help? What country are you in? You’ve done something amazing, and, yes, you deserve a break. I’ll suggest that you start by taking short breaks first,...maybe just for a day. Training an aide to do even the most necessary parts of his care (in my experience) will take a lot out of you, and there’s no way to know how well she’s understood the training until she is actually doing the job herself (or himself). Be sure that your husband can call someone who loves him and will come “ to his rescue”, even if that person can’t do the cathing, etc. I’m paraplegic, but have experienced being “cared for” by workers who, frankly, don’t care. Glad to have you here.
Post by victoria123 on Aug 14, 2018 7:51:00 GMT -8
Hi..Thankyou for the lovely welcome & your opinions so far. I'm in England. Husband was/is treated at Stoke Mandeville hospital in Aylesbury. I've absolutely no idea where to start in asking for help etc..I did have a bit of a 'breakdown' couple of months back & ended up at the doctors asking for help as I felt I couldn't take much more, mentally & physically. They said because it was someone else & not me personally that needed help there wasn't much they could do unless he asks for it. Long story short he's a stubborn arse that isn't keen. 😫🙁😪
victoria123, you are thinking clearly, but (no surprise) he isn’t. He will be so glad that you’ve trained someone else how to care for him if you ever become ‘out of commission’ for even a few days. Training someone else how to care for him is the only prudent thing to do. It will give you a chance to write down in a book all the things he needs done and what to do if ‘this’ or ‘that’ should occur.
My new aide, that just started today, has been caring for a young man with severe muscular dystrophy,..practically quadraplegic. She moved to my area and he lost her. I’d thought briefly, a moment ago, that if you were in my area, I’d put you two together, but “alas”!
Hi Victoria. As a wife and carer I can sympathise totally with you. I do not need to do anything like as much as you do for my husband and have only been doing it for 6 years but I find myself hankering after a break now and then - a few days with no one to think about but myself. I don't think that is selfish. However in our case it is finance as much as anything that stops this happening. Here in my part of the UK, respite is seldom funded by the Council or the government and is expensive. In house care at a specialist respite place is mega expensive - a week would cost around £1500. I looked into a temporary PA but that isn't do able - again because of the cost and also availability. A few days to train then a week while you are away is about the same cost as a respite home, as my husband would need someone to be there at night time too. It's a tough one as budgets are already stretched to cover physio which we pay for privately and all the hundred other expenses having a chronic medical condition entails. Have you managed a break together? Being out of routine and somewhere different helps me. How about somewhere like The Calvert Trust? They are a charity that offers holidays at their centres (focus is on outdoor activities) which are partly funded for families like yourself. www.calvert-trust.org.uk/ There is some good help here from Carers UK - maybe they can help? They have a PDF which tells you where to go to find out if there is any financial help available to you. www.carersuk.org/help-and-advice/health/looking-after-your-health/taking-a-break Maybe a family member, close friend or your GP can talk to your husband about why you getting a break is important? It's an emotional subject if he is resistant and can be hard to discuss without emotion. I guess after so many years of you doing what you do he is scared of someone he doesn't trust so much taking over for a few days. I understand that. But honestly - if you are having "a bit of a 'breakdown' " then he might have to face much worse than a few days with another carer if he doesn't engage. I get plenty of time off during the day as once we have done the morning routine, he can manage without me until bedtime - so time off is not a problem unless it involves me being away overnight. We also manage to get away for short breaks together. For the present it is enough for me. Sorry for long post - but please do get in touch with Carers UK for some proper advice on the best way to get some time away - they are really helpful and totally understand things from your perspective.
Post by victoria123 on Aug 15, 2018 1:53:02 GMT -8
Thankyou for taking the time out to answer, really appreciate it😘.The break I'm in need of without sounding selfish is a time away from it all one. I really am at breaking point. Husband has changed over the years, he has zero interest in any outside activities, doesn't socialise much & most invites we get to go to any functions is always attended by me alone. He won't entertain the idea of learning to drive, dislikes big crowds & because of meds can't drink. Never did I think I'd ever feel like I do. I'm not saying I don't go out ever. I do. I'm out most Friday evening's to our local for a few beers & I do go for walks out in the peak district sometimes. It would be nice just occasionally to go out for a night & not think I have to get back home.I also worry that should anything happen to me (🤞it doesn't but it could) what would happen to him then??? It's not a topic we can talk about without tears & raised voices at the moment. I fully understand that another 'carer' doing what I do is a scary thought but to be fair the thought for me carrying on as I am without any help scares me more..something or someone will give soon..unfortunately even if it's me.☹😪
I watched a Dr. Phil (psychologist) TV show a long time ago, wherein he said something that stuck in my mind and occassionally recurs to me. (It’s not that I think everything Dr. Phil says is correct,...this one just did get my attention.) This particular show was about an unmarried couple who lived together. (It had nothing to do with paralysis or caregiving.) When these two young people had gotten together, moved in together, and decided to live together, the “husband” had told the “wife” that they didn’t need to get married for them to have a legitimate union,...that a legal marriage was ‘just a piece of paper’. The woman had agreed to this, and they had been together for several years. But the woman became increasingly unhappy, wanting to marry the man. When she would broach the subject, he would become angry, accusing her of trying to break their “vows” to each other to stay together. Dr. Phil, with both of them before him, explained to the woman that “this works for HIM.” It took a few minutes more for it to sink in on the woman that there was a choice that was before her, if indeed the arrangement did not work for HER. Then the young man caught on to the fact that Dr. Phil was opening the woman’s mind to the choice of reneging on her agreement with the young man and leaving him,...if it didn’t “work for HER”. The young man was in shock and furious at Dr. Phil for de-stabilizing the little kingdom he had created with his girlfriend. The very idea that she could walk away from him!
I have a deep respect for the marriage arrangement and for people who value their vows, even when things get difficult. But sometimes imperfect humans try to create an ‘alternate universe’ and impose that universe (or kingdom) on their marriage mate, and the one creating this kingdom gets the other to buy into it. This ‘alternate universe’ may have nothing to do with what God intended when he instituted the marriage arrangement.
You need some relief from physical work and from continuous mental responsibility. Your mate has had you available to himself almost 24/7. That works for HIM. But, without in any way disregarding your marriage vows or other high moral principles, if you need help caring for your husband, you have the right to get that help, whether he agrees or not, because it also matters what works for YOU. And if that doesn’t work for HIM, then...well, I guess he has a phone.
Post by victoria123 on Aug 15, 2018 7:40:09 GMT -8
Vintage..WOW! what a post!!Thankyou so much for sharing that with me😘. In my head I know what words to say but every time I try it comes out all wrong. This explains the situation I'm in in a way that sounds fair & to the point I'm trying to make. 😊
Oh that does sound tough victoria123 , Seems like you have given the situation much thought already but is counselling worth a try? For either you, as a couple or maybe just your husband? Could he be depressed? Was your husband company shy before his injuries? Or is it a result of his injuries? If a result then it points towards depression. Though it sounds like you need a short term solution and counselling may take months to set up and yield results. Not advice - just an observation - but it sounds to me like some sort of outside (your marriage) intervention is essential. Carers UK is really useful for finding support and also the forum is full of people who have experienced exactly the same as you are facing and totally understand how you feel. Although this forum is brilliant, a forum of Carers has different advice and experience to share. Have you discussed this with your husband's Consultant/Doc at Stoke Mandeville? I ask because Peter has a rehab consultant at Salford Royal and she sees Peter and I very much as a team. She always enquires about how I am feeling/coping as she says that if one half of the team is in trouble it needs looking at. Like Vintage's post suggests - it about what works for you too not just him. I guess you live in my neck of the woods if you walk in the Peak District (which is stunning!). I live in Disley near Stockport. If money allows there is a respite centre in Southport (Revitalise). You could maybe do a few days with him there until he is comfortable then switch to one of their carers for a few days and you go off and have your much needed break knowing he will be well looked after and maybe make some new friends. Peter was as you describe your husband in the early days and it's only fairly recently that he is getting back to wanting to join in life again. Going out and socialising wasn't enjoyable for him as it meant so much work and worry. We started small and invited friends here where he felt more comfortable and gradually we got more adventurous - though he is still reluctant to go out in the evening as he gets very tired and pain levels increase. Fortunately he has realised that after doing something once or twice it becomes easier and the distractions and fun of company take is mind off his limitations and discomforts. He still frets if we do something new and I need to research facilities, access etc for him to feel confident - but the more we do things the less he worries. I think if he hadn't "seen the light" I would be where you are at the moment. I love him to bits but there are limits... I am in my 60s so it must be so much harder at your relatively young age to see life passing you by without the prospect of some fun and excitement and just being able to have the space to be yourself and do what makes YOU happy even if only occasionally. We all need it - otherwise what is the point?