Friends, Family & Carers Forum

[artee]

Still travelling down the coast slowly in Qld. Some days are better than others. It has already helped to realise there are people out there, on this forum, that can offer support. I've realised that the worst thing that could happen in a brain injury, is to suffer an anoxic injury, like hubby has. It doesn't leave any part of the brain unaffected. If I start a conversation (which is rare), he'll suddenly tangent into the most ridiculous conclusions, which cannot be questioned. Or resort to using the same phrase again and again and again. This week it's been "kangaroo court" pretty much after passing every police car or regulatory sign. And sadly, there are a lot of both out there.

One of the many things that bother me about hubby's current state, other than it will never, ever improve in any way, is his appalling lack of hygeine. I'm forever saying "wash your hands", then, after he puts his hands under the tap for maybe 2 seconds, "use soap". And then telling him to keep his hands under the water. If I don't remember to tell him, he just won't bother. Or to brush his teeth. Or clean his dentures. He will never ever do either without prompting. He often won't do it when I do.

Because we live mostly in caravan parks, I can't go check on him in the shower, but I check the soap, and he rarely uses it. He won't wash his hair with soap or shampoo.

He won't change his clothes. He gets angry every time I tell him to do anything to do with hygeine. So, I pretty much give up. He hides dirty clothes under the bed where I can't find them, because of my mobility issues (osteo-arthritis in the neck). he gets them so dirty I can't get them clean.


It's completely exhausting having to check every single thing he does, before I can do anything for me. When I don't check, he stuffs up. My nails used to be amazing, now they're bitten to the quick. I look and feel like c**p and I'm exhausted all of the time. I'm trying to find us a house to rent, but he is being very difficult about that too. He fears I might get support that way and then he couldn't control me.

[PeppiPatty]

Thinking about you @artee
And here to read you

Anne

Or ..... @justabother47yr

[Appleblossom]

Glad you could post.  Yes his whole sense of self has taken a terrible blow, and he is desperately trying to keep control of something as he adapts to this new condition. The male egos very tender. Sadly, it seems it is you, who are closest, who get the control treatment..

The perserveration tendency in ABI is frustrating but you can probably only give it p grade attention out of A-Z.  But the controlling and driving and moving is not the best option long term. It is fear that is probably causing him to want to run. 

Maybe you could set up some appointment in a town you are planning to arrive in, when you are ready to get accomodation. You need to link in with support services.  My sister-in-laws accident happened 30 years ago and she has a "settled" life in a small country town with plenty of support services when she gets in trouble, drank for a long time then made AA her thing.  There will be issues but this way too much falls on your shoulders and you should not be that isolated,  You would both be able to operate much better if you could find a place and settle down.

Maybe it will take a while for the possibilities of a settled life to sink in to his mind ... as he is probably still running from facing his situation. I wouldnt try to rationally engage him but dropping hints maybe ... otherwise you might have to do it solo without him and he might try and find you and then you work it out.  Good luck .. how about an Anglicare crisis accomodation service or something like that ... heaps of people can get help like that and you are entitled to something.

[Janna]

Hi,

It's nice to hear from you.  It must be incredibly difficult caring for your husband from both a physical and psychological aspect.  Many of the things you've describe sound eerily familiar.  The abusive controlling components sound very similar to my ex-H, whilst the personal hygiene issues sound like my son (minus the dentures).  Unfortunately you've got the two combined in one.

One thing that I picked up on in your post is that you said you are looking for a place to rent, but that he probably wont like that.  In a situation like this I think you need to take charge and do what is best for you and for him.  If you can secure a rental property this could reap some really positive benefits for both of you.  You would then be in a community where you can start seeking out support.  Additionally the stability of a home with familiar surroundings may help your husband manage a bit better.  Some of his behaviour may be attributed to anxiety around the continual unfamiliarity of his surrounds.  Being in rental will also allow you to get into a clearer routine which again may benefit your husband.  Many people operate much better having a predictable routine - e.g. same place, same time, etc.  Once you find a rental it will also allow you to make some friends and socialise with familiar people.  Even if that just means having a chat down at the local shop, these are all small things that will make you feel less isolated.  I'm not sure where you're intending to find rental but it may be worth checking out the local services and their proximity and accessibility before committing.  Try and find somewhere that is within easy reach of the services which you may need so that distance and inaccessibility is not a further issue.

I wish you the best of luck in finding a suitable rental property.  I would be putting that up fairly high on my list of priorities so that you can get start getting some support.

In the meantime don't frett too much about his personal hygiene.  This is a time when you may have to lower your standards and just accept that he doesn't always use soap, or wash his hands thoroughly, or do this or that.  That's not to say that you shouldn't be mindful and encouraging, but just don't let it stress you. Im not sure if he has the capacity to read and fully understand, but have you considered writing or typing up a list of what he needs to do and pasting it onto a mirror in the bathroom or getting him to read a laminated card.  Maybe if it's written in a simple way (e.g. Step 1 - 10) he'll follow.  Even simple little instructs such as "Please use soap to wash your hands" or the like may help.

All the best

Janna ❤️

[Appleblossom]

Really his situation would improve heaps if you were to be able to find a home somewhere ... there are options.  He would be able to relax more and develop healing activities and you both could get support.

[artee]

Thanks again for the support and suggestions. Yes, renting is a priority, but for now, we're doing a bit of housesitting, that at least gets us into a house and gives him some responsibilities. And more things to demand I do, but that is how it goes. I'd rather buy a house, but don't quite have the funds. Have done driveby's on a few, but they're all disasters and I'm certain hubby isn't capable of doing the things he thinks he can do. We used to renovate houses, but he can't even follow plans now.

I have been looking at several locations along the Qld coast, and services are my major concern. I have deliberately not said anything to H or he will just be more difficult. It's obvious he's terrified of anyone else knowing his disability. H wants to live somewhere remote and isolated. I've told him if he wants that, he's free to go do that. He can't access bank accounts or understand how to count anything but single digits so he can't do it alone and he knows it.

Yesterday, he drove me crazy with his driving. I had to tell him to speed up, slow down, stay on the road. That doesn't happen all that often, but concerns me greatly.

• Today he has been the best he's been for months. I am grateful for the break, but know tomorrow is another day.

[Janna]

Happy to hear that you've had a good day. Take full advantage of the respite. Please ensure that you don't end up in a remote and isolated place as it won't serve either of you. Your H is clearly fearful of what others think, however, I think he would do much better in an environment that embraces his disability, as opposed to one that denies it. This is the bridge he has to cross. If he can feel accepted for the way he is, this is far better than gaining comfort via invisibility.

You need to work on that part of him that holds this fear of judgement. This is why I think it's vital you get stabilised in one location and engage in therapy etc. It's going to be a long journey but it can be made easier with support.

Janna

[PeppiPatty]

Hello @artee
Don't you enjoy reading @Janna and my dear feoend @ Appleblossom , both clever and intuitive.

I'm a great believer in timetables. There's many good ones..... Daily timetables on pin interest. When I was at my lowest, I hired and still do..... Get silver chain in and they used to write these timetables and stick them on the wall so I could manage my day. They were are are one of the best things I've gotten for myself.
On that note.....
Would a silver chain lady/ man be able to get him in the shower ?
It's only a thought. Personally, my husband only showers once every week or two weeks ..... It's just too difficult to get him to so it more and he has made other fantastic changes in his life ...... I don't say anything. I just have my daily shower.