Challenges for BUB’s

challenges aheadRecently my BUB (dear husband / back up brain) and I were discussing the impact of the constantly changing deterioration of my abilities, how it feels for him to watch it happening, and perhaps even worse than that, there is nothing he can do about it. Quite often he notices things before I do. I wondered how it is for him to live by my side, supporting me without taking over from me or minimising my motivation to continue to strive to do things for myself.

I challenged him to write a couple of guest blogs for me, one about it feels to be watching this happening, and another about how he thinks it is best to support me. He has an even stronger opinion than me (!) about not liking the word carer, and in fact I usually have to be very direct if I want him to take over for me.

For the men living alongside a woman with dementia, it is difficult for them not to be able to ‘fix it’. For women, it is difficult not to simply take over, something most have women have done especially if they have had a family.

Sitting back and letting the person with dementia struggle is perhaps one of the most difficult of all, but for us to function to the best of our ability, or we will be inclined to give up. Initially, this must be regardless of the fact our abilities are decreasing all the time. We might need help to find ways to function with the disabilities, in the same way as someone who loses their legs or eyesight has to adjust the way they operate.

When dementia comes along, I believe it is imperative our partners let go of their inherent male or female roles, and become more like a disability advisor, and our BUB’s, working together with us on the challenges ahead. When the time comes, there is no doubt they will probably have to take over, but by then hopefully we won’t remember it!

16 thoughts on “Challenges for BUB’s

  1. Your are so right, Kate-there are many challenges with illnesses/disabilities, and caring for a loved one. It certainly is a struggle watching someone’s health deteriorate-can be very gruelling, strenuous, demanding, draining, and difficult. I know your husband is very proud of you, Kate, as i am-your fabulous.

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  5. Oh my blessed friend, I really know nothing about Dementia (thankfully!) but I do know one thing for sure….How blessed you are to have your HubbyBub love you so dearly to have stayed by your side through thick and thin. Many would have departed! I sure hope you consider the adrenalin that Tony speaks of. While I know you share similar thoughts on Big Pharma drugs as I do, the thought of slowing this down or even reversing it just a tad is so inviting! I just want the best for you and if you could maybe feel better then I say go for it! From a distance I don’t see any difference in your abilities at all…Just the same sweet and wonderful you 🙂 Blessings…VK

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    • Thank dear friend. I will definitely be asking my neurologist to talk to Tony’s doctor, but feel like it may not be suitable as I don’t have AD. Worth asking, and trying if he thinkls it is worth it. Blessings to you too VK.

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  6. …Dearest Kate….reading about you today, it reminded me to tell you that I saw my Doctor on Monday 25th, to talk about my progress with Adrenalin, and how I have been able to reduce my dosage back to what I started in mid 2010…….I explained that ,according to my records, I am back to feeling and acting as I was in 2003…..I personally believe this means I have been doing something right, to be like this in 2013.!!!…..I spoke about you and my Doctor said she would be quite happy to discuss with your Neurologist anything that you may require to know about my case in relation to Alzheimers/Dementia……take care…Tony Hogben…

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    • Thanks Tony, and WELL DONE. I saw my neurologist Dr Casse yesterday, and am having a few tests to review my progress, seeing him again in 29 April… I will definitely ask him to contact your doctor. Take care.

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  7. well said dear one, i often wonder this same thing, the next time we come to stay, whether i would jump in and help if i felt you needed it not even asking if i can do it for you, and not realising how you would feel if i just did rush in. (fools rush in) isnt that a saying,so glad you brought up this blog.you would never give up unless you really felt you could not do something??? does that make sense haha.keep up the good work
    to the moon and back xxxxxxxxxxxxxxxxxxx

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    • Thanks my darling friend. strangely, I have had to give up a couple of things this week, and hand the responsibility over to Pete. I felt/still feel physically SICK doing this, and incompetent, and guilty having to do so… even though I know he does not mind at all. There is another blog in this I suspect!!!!!

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  8. It’s never easy to watch a loved one struggle. During the past year, although my SO survived his liver failure; he still copes with Hep C each day. It is hard to watch him try to perform tasks he once did so easily and now struggles with.

    I just try to stay positive and help him come to terms with his limitations. I’m sure you’re husband is a blessing to you and I think you are both brave and inspirational.

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  9. I would think that Peter doesn’t see himself as a carer, but as someone who cares and most likely in a very possessive way without you knowing.
    I agree with your disability advisor description, but that would really be in some areas where you struggle. You are obviously quite capable in a lot of ways.
    “Hopefully we won’t remember it”, is a phrase I have some difficulty with. The problem with dementia is the ability to respond, and not that the memories disappear. My wife is in advanced stages of dementia, having started at a very early age like you, yet when I goaded her recently about a past event, her physical response was quite dramatic. I did this on purpose yet was surprised. I may be silly but I sit and talk to her normally and relate the past weeks events as we used to over dinner on a Friday night, and I threw the comment in to get a reaction.

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    • As always Jeff, you make me think more deeply! Thank you for sharing your own very difficult personal story, and I know Pete will sit with me patiently talking about all the ‘normal’ past events of his/our life when the time comes. I pondered about adding the comment of hopefully not remembering… you are not silly at all, beautifully loving and caring are the terms that come to mind. Take care.

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