New to Headway as the spouse of someone with TBI - Headway

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New to Headway as the spouse of someone with TBI

RichDC profile image
8 Replies

Good morning all,

Just a note to say hello and express my gratitude for finding this group! I've been married for 34 years and my wife had a TBI in 2016. Thank God the effects have been relatively mild, but enough to drive me to find this site. She almost died from a fall and had to undergo a craniectomy to save her life. She's fatigued almost all the time, forgets things, drops things, is much slower in her thinking than she used to be and can't do half of what she once did. She's 76 now and I'm worried that TBI is leading to cognitive decline. I'm 61, very actively involved in work and community work, 14.5 years her junior, and we're at such different places in our lives right now. Any advice deeply appreciated.

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RichDC
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8 Replies
Dizzy26 profile image
Dizzy26

I'm also the spouse of someone with mild Traumatic Brain Injury. It's not easy at all. Don't have any advice at the moment other than maybe we have to take on more burden to relieve the strain and stress on our TBI spouses.

RichDC profile image
RichDC in reply to Dizzy26

Thanks for just being there, Dizzy. It’s really good to know I’m not alone.

cat3 profile image
cat3

It's all too often the tragedy of brain injury that one partner loses lifelong skills and capabilities whilst the other is left grieving for the person they once knew. It's cruel for both.

I was dynamic/outgoing and great at playing devil's advocate in heated conversation, but since my ABI robbed me of short term memory (hence lousy word recall) conversation is a struggle. And my impaired balance makes past joys of climbing in the Peak district another loss.

It'll be heartbreaking for your wife after 34 years ; I guarantee it. We have to adapt and accept our new 'selves' but remembering who we were and how we lived life to the full is painful. But in partnerships there are always two casualties as you know all too well.

After 10 years I find I still need to achieve something every day but it's a fraction of what I did in the past. So I insist on family and friends doing their own thing (though still calling in or phoning every day).

If you can agree to compromise by holding on to your own interests when possible, whilst maintaining time for stuff your wife enjoys, then maybe a sort of 'double life' (for want of a better expression) would be less daunting.

I'm sure it's a weird transition having a whole new relationship which you didn't 'sign up' for. But allowing your lady to take life at her own pace might provide more harmony for you both.

I feel for you Rich ...... Cat x

RichDC profile image
RichDC in reply to cat3

Thanks Cat3; I’m slowly coming to the realization that you suggest— that I need to support my wife at her own pace, meet her where she is.

Painting-girl profile image
Painting-girl

Hello Rich, after just a mild TBI, I feel as if I'm functioning like someone much older ( I'm 64). And so of course I've questioned whether cognitive decline might be worse after TBI. There doesn't seem to be a great deal of research on this, but I did find a study that concluded that dementia was no more likely than in the general population. However, do all the usual stuff and get her a medical overhaul, and check whether any of her meds are anticholinergic, or might otherwise have a contributory effect.

ageuk.org.uk/information-ad...

Here's a few more ideas -

Did she have any neuropsychological testing done originally - because redoing that may pick up on any areas of concern.

With fatigue, it's hard to exercise, but it is something that helps overall.

I feel the key is focusing on and finding activities which are beneficial for brain health and are close to neutral in terms of fatigue - because fatigue makes everything worse.

Has she found successful strategies to manage her fatigue? It does plague most of us. You are very welcome here, but you may also find a local brain injury association in Canada that you can get further information from.

Also recurring depression often goes hand in hand with brain injury, which also affects how we function.

Neuropsychologists are very useful people for helping us develope coping strategies. A book co written by a neuropsychologist ( Frances Vaughan) that may aid the understanding of family and friends is called 'Mindfulness and stroke - a personal story of managing brain injury' by Jodi Mardula and Frances L Vaughan

Your wife is very lucky indeed to have you to advocate for her - see what you can do.

RichDC profile image
RichDC in reply to Painting-girl

Thanks so much PaintingGirl— sorry it took this ridiculous length of time to respond! We found a neuro place in Guelph, Ontario that deals with my wife’s issues; trying to motivate her to go up there. It’s only 45 minutes drive from our home but I think well worth the trouble! Will get the book as well. Hope you are doing ok and thank-you again.

Painting-girl profile image
Painting-girl in reply to RichDC

Thanks Rich - hope you are ok, and that she can make some progress, and you also get some input from local brain injury associations too

FlowerPower62 profile image
FlowerPower62

I do feel for you. I do do things withy my husband, but I feel guilty. It doesn't stop me doing some, like walking the dogs ( this was the thing we did most), but there are others I don't do as much. I have to walk the dogs, for them and me! The only thing I can suggest is that you get her tested for hormone deficiency. This has been the best advice I've been given, amongst many. My husband was finally diagnosed with growth hormone deficiency, and is now having treatment. I've seen lots of little, subtle improvements, and live in hope that they continue. Good luck. Xx

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