Is this common for carers?

[maryjoan]

There is a lot of stuff in the press and on TV at the moment about carers and it was mentioned that some of us virtually become housebound.

Can I put this past you?

I yearn for respite, I want to lead a normal life. Neither is likely.

However, last night OH's son rang to say he would have his Dad to stay for 3 days or so, in about a month. I was delighted - at first.

But I have noticed in myself recently that I do not enjoy being in the normal world any more - because I have to return to my caring situation. Alone but for OH 24/7. When I enter the normal world - as I did yesterday, I feel completely out of place and envious of those around me who talk about holidays, work, ambitions, life.....

and then I go home, to the Poor Ould Fella, who does not talk to me, is messy, smelly, and all the things you can think of to do with dementia and having a stoma he cannot deal with.

I settle into my weird ( for me) routine, and do not want to stick my head above the parapet into the real world again. Within these four walls, I exist to a point and can reach out via the internet - but its not good, is it?

 

[marionq]

I'm a little bit afraid of what you describe Mary because I saw my mother becoming housebound for fifteen years. She had been very ill then simply refused to allow us to take her out. She no longer had confidence in the outside world and wanted only family in her home - plus her home help who became like another daughter to her. I deliberately go out with John every day he is not at daycare. He can only walk for ten minutes tops but we stop and talk to anyone and everyone and have become quite well known amongst neighbours, dog walkers, Mum's with pushchairs etc.

When he is in respite - once a year for two weeks - I make myself do things like going to the theatre or going away for a few days to another city. We have wonderful galleries and museums in Scotland. I know you are a genealogist and I am too and I go to the National Library of Scotland and look at some of the stuff in the vaults. Have found some stunning stuff.

The temptation to just sit and wonder how it all went so horribly wrong is very great but I urge you to fight it. When I spoke to my mother about her self imposed incarceration in her last years she said, " I have been very foolish".

 

[nae sporran]

Sorry Mary, I was going that way to some degree about two years ago and it's not healthy, so forced myself to go to yoga and to carers groups, and some days have to persuade my OH to go to day centre just to get us both out. I think, from reading some of your posts, that you may not have quite so many options. However, any chance to relax and enjoy some time to yourself in invaluable.

 

[maryjoan]

Sorry Mary, I was going that way to some degree about two years ago and it's not healthy, so forced myself to go to yoga and to carers groups, and some days have to persuade my OH to go to day centre just to get us both out. I think, from reading some of your posts, that you may not have quite so many options. However, any chance to relax and enjoy some time to yourself in invaluable.

Thank you nae sporran, I know I over think things, and I know I think there should be an answer to every question. Even OH picked up on my distress this morning and asked was it something to do with him........ he hasn't a clue, bless him!

 

[Philbo]

I have just had 9 days respite - the first since my wife was diagnosed in 2014. Sure I get 3 hours on a Monday and Tuesday and 9:30 to 15:30 on a Wednesday but that time goes in a flash.

My situation is not the same as yours as I am still able (at present) to get my wife out down to our local pub at weekends. The smartest thing I ever did was to cultivate what for us was a new social life based around a really nice pub in our town (we'd never had a local before!).

So that has kept my wife "in the real world" though for her, it's somewhat in her own happy little world - but she seems to enjoy it. It's been a real life-saver for me and has probably led to me not really thinking about the need for a break up until now?

Like you, I considered firstly how she would cope with being in respite (I was pretty confident she'd be fine) but also how I would cope with not only leaving her there but also the inevitable return to "normal" and how she would get on back at home.

Well, the holiday in Majorca certainly highlighted just how much I needed the break. I went with a mate and his wife from the pub, who were really great company and made sure I was kept occupied. I returned refreshed (all-inclusive so far too much food and drink) and am pleased to say my wife slotted back into home life straightaway.

Sure it's a case of "back on the treadmill" but in my view, it's better to step off whenever you can, even if only for a little while?

I do hope you can find opportunities to keep getting out and about.

Kind regards
Phil

 

[SouWester]

I got my first (in five years) week of respite earlier this year. It would have been all too easy to stay at home on my own and look inwards all the time. However I forced myself, and it was a struggle, to go away for that week. In my case I went to the Isle of Man for the TT races and there was so much to do it was like a week in heaven. Now clearly that's not to the taste of everyone but I think there are two points. Do leave the house and get involved in something that really interests you, a theatre group tour, a coach trip perhaps, the more to do during the time away the better. As I said it was quite an effort but it was so worth while.

 

[Beate]

It's really not healthy not to have at least one foot in the real world. At the beginning I had my work, but even after I gave it up, I made sure to go out to carers meetings, meet friends and go to the cinema. It helped obviously that John went to the Day Centre during the week, but when he lost his mobility completely I would have become housebound had I allowed the powers to be to send him back home. I didn't, and I don't feel guilty. It was my line in the sand as I couldn't even contemplate being stuck at home all day long. The more you alienate yourself from the world, the harder it will be to get back out. If you feel deep down that you are just a worthless carer who has made her bed and has to lie in it - not true. Work on your self-worth, take the respite, go out there and enjoy yourself. A good shopping trip always perks me up. But even if you are just at home on your own for lengthy periods, make the most of it - read, watch a nice DVD, have friends over, have a relaxing bath - whatever it is you enjoy doing uninterrupted.

 

[maryjoan]

I got my first (in five years) week of respite earlier this year. It would have been all too easy to stay at home on my own and look inwards all the time. However I forced myself, and it was a struggle, to go away for that week. In my case I went to the Isle of Man for the TT races and there was so much to do it was like a week in heaven. Now clearly that's not to the taste of everyone but I think there are two points. Do leave the house and get involved in something that really interests you, a theatre group tour, a coach trip perhaps, the more to do during the time away the better. As I said it was quite an effort but it was so worth while.

I would have joined you in the Isle of Man - I used to live in Douglas ( also Ballasalla,Ballabeg and Port Erin) loved the TT races !!! Ha ha - but, yes, you are right !

 

[maryjoan]

It's really not healthy not to have at least one foot in the real world. At the beginning I had my work, but even after I gave it up, I made sure to go out to carers meetings, meet friends and go to the cinema. It helped obviously that John went to the Day Centre during the week, but when he lost his mobility completely I would have become housebound had I allowed the powers to be to send him back home. I didn't, and I don't feel guilty. It was my line in the sand as I couldn't even contemplate being stuck at home all day long. The more you alienate yourself from the world, the harder it will be to get back out. If you feel deep down that you are just a worthless carer who has made her bed and has to lie in it - not true. Work on your self-worth, take the respite, go out there and enjoy yourself. A good shopping trip always perks me up. But even if you are just at home on your own for lengthy periods, make the most of it - read, watch a nice DVD, have friends over, have a relaxing bath - whatever it is you enjoy doing uninterrupted.

Uninterrupted - that is the key word - yes, yes I have to give myself a good shake and get on with it - thank you x

 

[SouWester]

I would have joined you in the Isle of Man - I used to live in Douglas ( also Ballasalla,Ballabeg and Port Erin) loved the TT races !!! Ha ha - but, yes, you are right !

I think it was a major point that once I was there I could not "make my excuses and leave" as I was on a pre-booked flight. It was a perfect solution

 

[Grannie G]

My problem with the real world was with conversations I was unable to take part in. The talk about holidays, shared activities, theatre trips, spontaneous outings, etc. was acceptable and normal even if I wasn't able to share experiences . I couldn't feel included I just felt isolated and could feel the tension building up . Then there was talk of trivialities which were so important to some but were not even near my worry scale.

My real world , which I had no understanding of before I became a full time carer, was a very different world. I remember bursting into tears when the GP`s receptionist said he was running an hour late . I had to be home for the sitter and the waiting time plus travelling time meant I couldn't afford to wait. This was ten years ago and I hope things are better now.

My husband refused day care so I was lucky to have two hours a day from Direct Payments with an agency carer. In addition I had 30 minutes morning and evening for help with dressing and undressing. It meant I was able to attend support groups and meet friends for coffee. I could also go to yoga , although I had to leave early and miss the relaxation time.

Even though I had three hours of respite daily I was still housebound for twenty one hours every day. I doubt anyone other than carers appreciate how this feels.

If it hadn't been for TP , life would have been even more isolated.

 

[karaokePete]

One of my wife's son took my wife to stay for 4 days last month and it was bliss for me. I had forgotten what it was like to have undisturbed nights and normal conversation.

As Philbo said, you do have to get back on the treadmill, and I found that treadmill got back up to speed quickly. However, I plan to repeat the respite because I still feel better for it - even though last nights disturbance ended with my wife spitting in my face (I think I was just in the firing line, rather than it being a deliberate action so I'm still smiling).

 

[Starbright]

@marionq...My husband can only manage a 15 min walk but we do it every day come rain or shine to go buy his newspaper . He will not do carers clubs or any of that sort of malarkey (( his words)). I had a break for one night away a few weeks ago it was lovely, yes I came back refreshed but I missed him and our routine so much ...15 years since we had a night apart.
Like you and I’m sure many others on TP feel strongly that it’s important to try and hold onto our identity but so hard to do when ones whole life revolves around the person you are caring for. For me I’m a mad crochet lady so my kids say ...I also am into family history although not so much these days.
Go out for a little walk @maryjoan whenever you get some time ...I’ve found that time and space however short does help a little.
Well done with your interview...do take care A x