Though this information was found on a PSP-focused online support group, I don’t think the content is PSP-specific. I think all of the caregivers within Brain Support Network will find some value here.
The PSP Association — the UK-based advocacy organization in Europe for PSP (progressive supranuclear palsy) — hosts its online support forum with the website HealthUnlocked (healthunlocked.com). A couple of days ago, a woman whose husband recently died with PSP, posted about “the things I have learnt.”
With the author’s permission, I’ve copied excerpts from her post below. She asked that I remove her name and husband’s name from this post. And she requests that no one contact her.
Her messages are for all caregivers.
Robin
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Excerpts from post
The Things I Have Learnt
HealthUnlocked’s PSP Community
January 11, 2017
The things I have learnt? I suppose my main message is look after yourself. Those last few days, I did not take part in one bit of [my husband’s] personal care. I spent it, being his wife, loving him, snuggling up beside him in bed, telling him I loved him. It made it very special. In hindsight, that wonderful thing, I should have got others to take more of this responsibility off my shoulders, a long time ago. Spent more time, sitting and talking with him, not rushing around, in a mad whirl, trying to keep everything perfect, getting so, so tired, therefore, cross and being in total state of exhaustion, all the time. We all think, “nobody can look after their loved ones as well as me.” That I have to say, is rubbish!!! 99% of Steve’s carers, loved him and when I let them,(!!!!) could do everything, just as well as me, with the added bonus of a smile of their faces! The uniform of a Carer, takes away the embarrassment, that we all think, our loved ones suffer. This is my only regret, I tried to struggle, far too long, on my own.
The weeks [my husband] had in respite, helped in giving me a break, which meant I was able to carry on, that extra bit longer. Of course I felt guilty at the beginning, but now, oh, it was such a benefit to us both. Still, I am receiving the added bonus’s of it. I am use to being in the house on my own. I can go out with others, for a drink or a meal. I am able to walk into a supermarket and buy food just for me, without crying. I’m sure there will be moments, but not yet.
The hardest part of PSP? NOT now! I think it was more the middle bit, when his bladder stopped working, the constant clearing up of Urine. Falling. The long, slow loss of communication and the realisation, that PSP would win in the end. At the moment, it’s still a huge relief that [my husband] is no longer suffering from this evil disease.
You all know, I shouted, screamed, kicked and hated PSP with a vengeance. [My husband] did get this full frontal. But I won’t let myself feel guilty about this, I was just as much a victim of this illness as [my husband]. My only hope is, he understood.
I do feel very proud of myself, I looked after and cared for [my husband] until the end. Something every single one of you reading, has done, is doing and will do! Never, EVER doubt yourself, yes, you are tired, yes you are exhausted. The feeling of failure, is huge. We all feel that way, because, in the end, PSP does win. Its not because we are useless!
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