From partner to carer

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From partner to carer

Postby Cheltz » Fri Jun 21, 2013 8:07 pm

How do you cope with a shift in your relationship from partner/OH to carer.

I have suffered with FM and Discoid Lupus for approx 6 years and on the whole managed pretty well. Yeah things were a struggle but I held down a job, coped with daily life etc, until a year ago when my health took a dramatic turn for the worse. I developed P.O.Ts. This means that my heart rate upon standing goes up from the normal 70 beats per min to 180 BM and if I dont sit or lie down I collapse. I am 52 and I am now wheel chair dependant.

I need a lot of help on a daily basis, which falls mainly on my partners shoulders, with help from my Mum, Dad and daughter, who is married with a child. My daughters health isn't great as she has MS. My parents are both in their 70's and shouldn't have to run around after me.
My partner has to work 12 hours a day now that I am unable to work and do all the things that I am not able to do. Need help to bath, shower, dress, cook, clean, shop, etc etc.

I can't drive anymore and rely on my OH to take me everywhere. He does so much and I feel so guilty. I try to do my bit but that's all it is, A BIT. Bless him, he never complains and that sometimes makes me feel worse about the situation. He is now more carer than OH. I don't know how to cope with the guilt, he didn't ask for this way of life. When we met, I was well, fiercely independent and on the go the whole time. I am finding this shift in our relationship so very hard to deal with and wondered if anyone else felt the same.
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Re: From partner to carer

Postby painprincess1 » Fri Jun 21, 2013 8:36 pm

awww lovely your very lucky to have a wonderful man . can u go out to the local pub and eat together once in a while or even if u watch tv together cuddle up close and give him a kiss now and again .and hold his hand . simple little thing to let him now how much he means.and tell him look him in the eyes and tell him just how lucky u are, these little things can do so much and u dont need to spend a penny to hold hands in the settee or give him extra kisses xxxx
smiles and the world smiles with you. cry and you cry alone.
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Re: From partner to carer

Postby Dave shepherd » Fri Jun 21, 2013 8:51 pm

I totally agree with the pain princess I have been a husband for 32 years and my wife has had figromyalgia for 10 years plus other illness it take a lot in face it total change or life but a few kind or loving words too each other make all the differance
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Re: From partner to carer

Postby macca » Sat Jun 22, 2013 10:23 am

Same here from a husbands perspective. I've been with my wife for almost 28 years from the age of 15. She's always had health problems which got worse from the age of 19 and have just gone downhill ever since. Every bloke will have his own view on stuff but when i decided i wanted to marry my wife because despite everything else she's a great person and mum, i took the vow in sickness and in health seriously.

We've had our challenges along the way for sure. Yes we've had the expected scraps with DWP etc but we've also had to deal with family issues too. Sadly my own mother told my wife she is nothing but a crippled b@st@rd! ..... I no longer have any contact with the woman and whereas some folks may think thats sad we tend to take the view that our lives have enough trouble already, we don't need anymore.

Ironically as the years have rolled by we have got tough on stuff. We're not self centered or demanding but at the same time we no longer tolerate people that bring negativity to our lives. We and our two adult children have become quite a tight family unit.

As for the future well we know things are going to get worse but we're prepared for that. We purposely moved house to provide ground floor living and i built a shower room and toilet on the ground floor for my wife. The downside of that is the mortgage dictates i'll be working til i'm 65. So somehow i've got to come up with a plan to be out of work earlier as i know my wife's care needs are only going in one direction.

Bottom line, life isn't a bowl of cherries, it changes and we just have to be prepared to change with it.

Keep your chin up, sounds like he's there because he wants to be.

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Re: From partner to carer

Postby Iceskatemum » Sat Jun 22, 2013 11:32 am

My OH recently told me he couldn't cope with my illness. I was very hurt and didn't know how to react, I guess I was numb for a few days

Please don't get me wrong he is such a good person and has always been there for me , we tended to joke that while he signed up to the whole "in sickness and in health " lark, he didn't think it was going to be in sickness and more sickness!

Although we are both together, there are still difficulties & issues between us that are difficult to vocalise and explain and I guess we are both scared of the hurt talking about things may bring to the other person.

I just wish there was somewhere that tended to the needs of those around a person with a chronic condition as it is hard on them as well .
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Re: From partner to carer

Postby MichelleJ » Sat Jun 22, 2013 7:56 pm

Hi Cheltz, its really hard having to rely on your other half to do everything for you. I too had to give up a promising career because of my health and no longer work. As I was the main earner this was especially hard. My hubby has definitely found it hard but is much better now than he used to be. He always wanted to play his guitar for a living and when this happened I couldn't see how he would a achieve it but he has and is now a professional musician with his band his only job. His health is a issue too at the min as he had a seizure and has ongoing issues while we wait to see a neurologist to get epilepsy confirmed and get him on meds. His dad has it and its identical so we know what we're dealing with and he's had what now appear to be small epilepsy seizures for years. But this was the first tonic clonic one. So it's not good for him to have my care to do too.

He was doing my care but he went away in January for 3 months with the band and so I had to get a care assessment done and social services put carers in to help me. This was originally short term but they assessed me as needing it to continue when he came back. I get 7 hrs a week funded. This might be something you could look into as it sounds to me like you any qualify for it. Ring the council adult care team and ask for an assessment of your needs. They come out to see you. They assess your finances to see if u have to contribute but its only yours not hubby's that is looked at, so hopefully u would get it Free like I do. Be honest about the help he gives u and tell them its too much for him with his working aswell.

Even a small amount of help will take the pressure off him a bit. I feel happier with my carer doing my personal care than asking him to do it all the time. Your husband is entitled to support in his own right too if u qualify for care. We haven't done this Yet put it is available.
Dx with fibromyalgia m.e/Cfs and asthma
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Re: From partner to carer

Postby whoami » Sun Jun 23, 2013 1:27 am

Cheltz.......try not to feel too guilty. You would help your hubby if the tables were turned.

I was married only six months when I had an accident at work, which in return triggered fibro.. My hubby was raised in a home with a father with MS and a sister with spina bifida, both in wheelchairs and totally dependent on others. I didn't think my hubby deserved to be stuck with me. When I asked if he wanted a divorce he was angry enough to almost give me one, LOL

We have gone through many, many surgeries, infections, nurses coming for a year at a time. He has never missed a Dr's appointment. He has laughed with me through a stroke and cried with me dealing with cancer. My hubby has many health issues of his own. We lost triplets and cried some more. Not once has he ever complained.

Our journey started just over 23 years ago. He said I would do everything in the world for him so he does for me. My hubby was 25 and myself 33.

You have a wonderful hubby, it is obvious how much he loves you. Remind him everyday how much you love him. He would not be there and help if he did not want to. This illness belongs to both of you.

Respect, sharing, trust and love have got you this far. Whatever else you are doing is working. Don't try to fix anything that is not broken. Relax...x

Expect the worst in life you won't be disapointed and you'll be prepared!
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Re: From partner to carer

Postby Cheltz » Sun Jun 23, 2013 10:40 pm

Thank you for your replies.

Yeah I am so lucky to have the Love and support from my OH and family. I do thank them all and tell them how much I appreciate their help but it's sometimes all too easy to get consumed with the day to day coping of having these debilitating illnesses that I selfishly forget how I affect and at times hurt those that help me the most. I don't do this deliberatly, but when I am tired, in pain , feeling ill and there's no let up, just more of the same to look forward to, I know that I am snappy and irritable. Then the guilt sets in as I watch my OH who's tired from doing a 12 hour shift having to set too and take care of my needs.

Pain princess, I took your advice and we went out this evening for a meal. I could only manage to go out for a hour and it took us a couple of hours to get me showered, dressed etc before we could go but as I told my OH, it takes some able bodied women that long to get ready LOL, so I think we did pretty well. I am absolutely shattered now but giving my OH time off from cooking was worth the effort.

We do talk quite openly about things and when I say to my OH that I would understand if he wanted out, he always says, he's here with me because he wants to be and not because he feels he has to be. So while I may be unlucky with my health situation, I was certainly lucky in my choice of partners. I am going to make a conscious effort to let him know that a little more often than I do now.

Ice skate mum and those that have partners or family members that are struggling to deal with things, I hope that things work out for you and that you can find a way through. Thank you so much for sharing your stories with me. X
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