CBD caregiver

[Obsidian62]

I'm new here. My husband was diagnosed with corticobasal syndrome 3 years ago, has been symptomatic for 5 years. I work full time and have care givers who help out during the day while i'm at work. He is still ambulatory and can use his left hand, but is unable dress or bathe himself and needs help with toileting. He's had some bad falls lately so can't be alone. He is almost completely non-verbal and sometimes mixes up yes and no so I have to rely on his facial expressions and my familiarity with his habits.

A few years ago, he was very active, very articulate, and a voracious reader.

Throughout the process of diagnosis and adapting to an ever increasing constellation of symptoms, I've yearned to know "what's next" so I could prepare. Prepare myself emotionally, prepare the house for fall prevention and wheel chair access, prepare our budget to accommodate additional help around the house, prepare our finances to weather the worst case scenario, prepare my work life so I could have some flexibility to work from home sometimes.

Reading about other people's experience with similar issues is a great support.

[enjoysalud]

Welcome, but I wish you had no CBD loved one to bring you here.

You sound like you definitely are on top of things....emotionally, physically, and realistically prepared.

I was the mom/caretaker for a son who had PSP. He died just barely 55 years old. This site will be a great support for you.

Los Angeles, CA, USA

[Obsidian62 in reply to enjoysalud]

Thanks very much

[Hidden]

You are a warrior! I am exactly where you are and I feel for you. Waiting for the shoe to drop just as you are. God Bless you and your brave husband. I have to constantly remind myself he is the one who really is suffering. Not easy this terrible road ahead. We are in NYC. Joe is being treated at Cornell Memory Center.

[Obsidian62 in reply to Hidden]

Thanks very much

We are in Portland, Or

He was diagnosed here with confirming diagnosis at Mayo in Rochester Mn

[bazooka111]

It sounds like we are also experiencing much of the same. My mom has many of the same symptoms you have described. I have spent hours reading in this forum; incredibly grateful for those caretakers that have taken the time to share their experiences. You will also find many on here that remain active, long after they have lost their loved ones. Very few people understand this diagnosis, and I find this my “go to” whenever I have questions or concerns. We are in Ohio, USA and are under the care of Cleveland Clinic Neurology.

[Obsidian62 in reply to bazooka111]

Thanks very much

He was diagnosed here in Portland although the neurologist had never seen CBD; diagnosis confirmed at the Mayo Clinic in Rochester

[Kaka1234]

I'm at exactly the same stage with my husband.

I choose to finish work to be his carer as I wanted to spend time with him while we can still do things together.

It's Heart breaking all the desitions we have to make.

Love to you, we are in Leicester in the UK

[Obsidian62 in reply to Kaka1234]

Thanks very much

[Inparadise in reply to Kaka1234]

Like you, I have made the decision to spend time with my husband, who has PSP, enjoying our life together while he is still able to. Hugs to you......

[AJK2001]

Glad you found this forum, it is a very special place populated by very special people supporting each other. I hope you find it as useful as I do.

[Obsidian62 in reply to AJK2001]

Thanks very much

[Dadshelper]

Welcome to the site! Dad was Dx with CBD in Jan 2016, after a Dx of Parkinson. Read through old posts and ask any questions. Some days you may just want to rant and rave, that is ok to...we've all been there.

Ron

[Obsidian62 in reply to Dadshelper]

Thanks very much

[Tundrahawk]

I’m sorry to hear about your wife’s diagnosis. My wife first exhibited symptoms 6 1/2 years ago. She was diagnosed with CBD 3 1/2 years later. I was able to retire early and spend her last year caring for her along with other caregivers. We were able to get her advanced directives done along with some revisions to her will. We got a “tilt in space” wheel chair for doctors appointments and a “tub buddy” for showering along with a hospital bed with a very good mattress to minimize bed sores. I feel bad passing along this info but this is how we prepared. I also joined a support group for MSA( which has similar symptoms). At my wife’s request, she went to a hospice facility when we could no longer care for her at home. She was there for 10 days. She didn’t want to go to a nursing home. I wish you all the best

Jim

Stillwater NJ

[Kathrin87]

Hi Obsidian62 sorry to hear your husband has dimentia,my mother has the was diagnosed with CBD 3years ago, but she's been sick for last 10 years, just wanted to say you're not alone,it's nice to see people from around the world devoting their life on their beloved ones🌸🌸