I can’t find my...

[SewBears]

Husband (CBD): where’s my phone?

Wife (Carer): It’s probably on the dresser.

Hubby: It’s on someone’s dresser?

Wife: Honey, we only have one dresser.

Hubby: Oh, there it is...

Wife: 🙄

[Hidden]

I went through years of me having moved something on him. Thinking back that was probably one of the first symptoms of the disease.

[Northstar1]

Hi how long has your husband had this awful disease ?

How old is he ?

Sounds like our life...yesterday he lost something and blamed me.

[SewBears in reply to Northstar1]

Hi, It’s hard to pinpoint when hubby’s symptoms first started because he suffered a severe neck injury in 2005, caused from a fainting episode. He was on heavy pain medications for years following a high risk neck fusion from C3-C6. Hubby was still able to function quite well considering what he’d been through though. I wonder if the neck injury triggered a traumatic brain injury which might have put CBD in motion 🤷‍♀️

In 2016 I started noticing a rapid decline with cognitive functions and a slew of other issues. However, the doctor says the neck injury and CBD are NOT related. I question that because we never figured out what caused him to faint in the first place. He still passes out sometimes too. Anyway, a long answer for what seems like a simple question. In my opinion he’s had CBD since 2005, going on 14 years. Or, per his doctor, he’s had CBD since 2015 or 2016 and he was diagnosed with CBD just last year, 2018. Someone else on this site mentioned that it really doesn’t matter how long it’s been when you’re this far down the road.

Hubby is 65 but his mindset is more like that of a 6 year old. I’m not complaining, just being realistic.

Everyday we go through “I can’t find my...”, which made me want to share this post about his missing phone. Sometimes I know what he’s looking for before he can even say what it is. Oh, and I’m extremely thankful when he can speak and when he can find the right words to say what he’s in search of. The world just stops until I address his needs. It doesn’t matter what I’m doing because in hubby’s world everything is urgent. Sometimes I just have to laugh. To avoid any blame games I tell him that it’s time for a hug and any festering anger disappears. Cherish the “I can’t find...” times.

Xoxo from I SewBears

[Northstar1 in reply to SewBears]

My lovely husband is not aware of the prognosis. I am a light hearted person and despite the desperation I joke and use humour with him. I do cherish every day but am fearful of what it to come...I do not want him to suffer...and I do not want to be alone without him x

[SewBears in reply to Northstar1]

I understand. I think this disease gives caregivers a chance to grieve while our loved one is still with us. It’s a slow process but seems rapid at times. As they dwindle away a little bit at a time it gives us a chance to cherish what we still have or once had. As painful as that is. I dread being alone too but I also don’t want him to suffer. So... I try not to dwell on tomorrow but to live in the now.

Have you put anything in place about decision points? Meaning, will he want to have a PEG should it come to that, or if he falls and breaks an arm or leg will he want surgery? Because each horrible incident will have its own set of complications. If you address some of these questions now it’ll help you feel less afraid.

Sorry, I haven’t read your profile and so I’m not familiar with your story. Please feel free to share. It helps all of us!

Keep the humor and keep joking 😂Don’t look ahead 😢

Hugs...

[DeDeDickson]

Bob went from being the most meticulous guy (“a place for everything and everything in its place”) to not being able to find anything! He’ll even put the bread back in the cubboard on the wrong shelf (which then hides the peanut butter) and then want to know where the peanut butter is!

[SewBears in reply to DeDeDickson]

Oh! We play find the peanut butter game too! Hubby attempts to put a glass or a dish away and then he’ll miss the shelf completely, glass shatters all over the place. Needless to say, kitchen duties are all up to me now. I’ll let him put ice in his cup but then I go around and pickup ice that would otherwise melt and create a tripping hazard. Life is but a game!

[DeDeDickson in reply to SewBears]

How true. I watch our nine-month-old grandson and I am always making sure the crumbs (or ice chips) are off the floor so he doesn’t put them in his mouth! A game, indeed!

[Hidden]

I’ve just joined the forum - the club that no-one would choose to join - but hey - that’s just how it is in life - though I’m not minimising the impact on all concerned - far from it.

I seem to have a very similar experience to you with the diagnosis (especially the overlap with cervical surgery - though I don’t think surgery was implicated just that the rehab coincided with neuro-degenerative signs and symptoms manifesting themselves) and caring for my husband who is in the “relatively” early stages of PSP/CBD.

I personally hate the term “carer” and choose instead to refer to myself as my husband’s agent and manager who gets him all the best gigs in terms of access to health practitioners, therapies and as good an experience of life as possible - making sure I look after myself as best as I can, taking one day at a time - well, in theory anyway. All the best to you.

[SewBears in reply to Hidden]

Husband’s Agent and Manager, great title!

Advocate and partner is good. Or, I don’t know what the heck I’m doing. Or, now what? 😂

Laughter! Ha!

[raincitygirl]

Ha ha! At least he can still talk! 👍👏