12 months

[SewBears]

A year ago yesterday I officially retired to become a professional caregiver. Not sure how professional I am but we’re supposed to say that so as not to feel invisible. This is explained in a book that someone mentioned on this site titled “The Selfish Pig’s Guide To Caring”. I’ve only read a few chapters sitting in lobby’s at therapy clinics. Most people see the title and start asking questions about the book. What I’ve read so far is interesting and a little comical, but that could just be me.

I’ve totally gone off topic. I wanted to share that I’ve been home taking care of hubby for a year now. When I left my job I seriously thought I only had a few months left with him before his disease would take him away for good. What a difference it makes when medications are switched out with different ones. Then the hurry up and wait game starts to see if it works. It’s been a long year. The decline actually improved because of Swallow, Voice, OT and PT. Plus changes in meds and finding a doctor who listened and put “most of” the clues together. We’re treating symptoms but we’re still on the fence about Lewy-body vs. CBD vs. Parkinsonism, etc. It doesn’t really matter what it is at this point. What matters is that the efforts we’ve made have helped to prevent decline and the biggest news is that hubby’s gait has actually improved thanks to Levodopa! Now... I know this could all be temporary and things can change on a dime. This is called The Setup. Just when you think things are going great, BAM you’re hit with an unexpected event and you wonder... what the heck?

I’ve learned so much from this site and I want to thank everyone for posting ideas and tricks and for replying to other people’s posts. I’ve learned so much from all of you. What a rollercoaster we’ve all been on. Thank you for sharing this past year with me.

Hugs to all from I SewBears

[Dadshelper]

In my opinion caring for a family member is a lot of learning things on the fly. Just when you get something figured out, a change will occur and then it's learning again.

I am glad you have seen an improvement and hopefully it lasts a while.

Ron

[Toddet]

SewBears, I’ve only been a member in this site for a week and already your kind words have helped me. Take care and keep finding things comical - helps maintain a level of sanity against the odds xx

[AliBee1]

Glad you appreciate the book. I did. I am glad that you have found help from this site too. It was like throwing me a life line. Re Levodopa. Nigel had CBD and it did not help him at all so glad it is helping your husband. Love and hug. AliBee

[SewBears in reply to AliBee1]

This past week has been rough with hubby’s back seizing up real bad. I know at some point Levodopa might reach its peak performance. He’s been on it for about 5 months now (I think, need to go back and check his records). Anyway... we’re dealing with a bit of a setback this week. What the heck? lol

And yes, thank you for the book recommendation! Sorry I couldn’t remember who initially posted about the book but I am very appreciative. I hope others will read it too.

Carry on...

Love from I SewBears

[AliBee1 in reply to SewBears]

Hope things improve soon. Big hug AliBee xx

[SewBears in reply to AliBee1]

After lots and lots and lots of rest and a little extra help from Clonazepam, hubby’s back finally relaxed. Today he has shaved and is ready to go out and run a few errands with me. I have his wheelchair in the car and we’re ready to start our day at noon. Yeah!

[AliBee1 in reply to SewBears]

So glad. Enjoy xxx

[HilsandR]

Hi SewBears,

I can thoroughly recommend that book. Like you I found some of it quite comical, well in fact I would go as far as saying more than comical. I am sure you are going to find a few more chuckles as you wade through the chapters.

It's so nice to read about your husband's positive reaction to medication. Just enjoy each day of stability and don't give a thought to how long it will last.

Best wishes,

Hils

x

[Katiebow]

Just keep on keeping on, you're doing a great job keeping symptoms at bay, it takes a great deal of effort to keep on top of meds to try to stave away the decline of your loved one knowing that it won't be forever. I think us carers should feel proud of the important job we do or have done to keep our loved ones as comfortable as is possible. Continue the good work, he needs you.

Love Kate xxx

[Kevin_1]

Great post. Made me smile. Yes, invisible and not to interfere no matter how poor the service.

But, I do think you have contributed your share here too.

Hugs to you

Kevin

[daddyt]

… and the ride continues, be sure to fasten your seat belt.

Tim x

[doglington]

Its always a roller coaster. All we can do is keep our breath and survive.

love, Jean xx

[aliciamq]

I liked the book.