Struggling with CBD

[eurolynch]

My Mum was diagnosed in October 2015 and its been awful. First symptoms approx 6 months prior whilst still working etc. My stepdad was her main carer since then until refusing to care for her as of April this year. Happened in the most horrendous way....forced to a care home and locked out of her home. I therefore have been the carer since plus working. Mum is devastated by her illness and current situation. I am really struggling as her speech is poor and wheelchair bound. Although in care home she is with me all weekend. I am struggling with her tendency to not realise how hard it is and that I have no idea what her brain knows and doesnt know. Sometimes her capacity is spot on but then her actions make me think it cant be as she would never do this to me. So confused and sad.

[Hidden]

There are days when it is very hard to deal with these diseases. We’ve all been there more than once.

[Dadshelper]

There seems to be varying degrees of apathy with these diseases. She probably is aware of her situation and most likely yours but won't say much about either.

Don't let yourself get overwhelmed with her care and your needs, you'll wear down or burnout. She is already in a nursing home so maybe visit on the weekend instead of bringing her to your home all weekend. Bring her home occasionally for the day maybe.

Good luck.

Ron

[raincitygirl]

Dear Euro,

What a sad story about your mom and dad 😧

Unfortunately some people are just unable to make enough accommodations to handle the disease - BTW, by that, I don't mean that I judge those who find residential care the correct option - I mean the locking the door against your mom. I’m so sorry that happened to your mom. My husband who had CBD passed away this summer and his speech loss was his greatest sorrow.

I agree with what Ron said above that you need to be very careful that you don’t burn yourself out. Your mom will need you to be calm, loving and a bit cheerful to help buoy her up through this trial.

You've probably made yourself familiar with the site including search functions to look up specific symptoms and approaches (like speech loss) but if there is anything specific we can help with, let us know.

Best wishes to you

Anne G

[LuisRodicioRodicio]

Hi eurolynch!

Agree with Jeff, Dadshelper andRaincitygirl.

Reproducing the phrase of Anne Heady (active participant in PSP-HealthUnlocked):

"Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"

Hug and luck.

Luis

[MidsDofCBD]

My father has cbd too and from what I’ve gathered it does seem to effect moods apathy empathy etc more than PSP, my da wasn’t an easy man before now very difficult . Sadly he’s now refusing to take them but when he was on Amantadine he was a bit more pleasant ? Might be worth asking your dr about . It’s very difficult , I ve upped my dad carers and cut down on my visits a bit as I was just getting to angry which doesn’t help either of us xx

[kenh1]

Your post is obviously a cry for help. My wife has CBD and when she was diagnosed in 2013 I was initially helped by PSPA phone line, then the local (Liverpool) group who linked me to the local hospice. Also through the District Nurses I was allocated a palliative care nurse who I can ring any time. There are also local groups for carers, you by law should have been offered a carers assessment which should link you to local sources of help. You can find details of these through your council or Local Citizens advice. This is all presuming you are in the U.K. If you are not, hopefully if you indicate where you live I'm sure someone on this site will point you in the right direction. God bless.

Ken.