is it the end? (CBD)

[Cecefrance]

hello,

my mom (60 years old) was finally diagnosed with CBD earlier this year, after a year of worsening symptoms. the last 6 months have been brutal, everyday she seems to be fading fast, right before our eyes. after nearly 3 months at the hospital (took them THAT long to have her properly cared for and diagnosed into the right department, initially they thought her autoimmune disease was the cause when we all knew something way worse was going on) - she’s been back home, totally bedridden, but my dad is able to move her to a wheelchair for meals and to the couch where she likes to lay down. she isn’t able to move her body at all, it used to only be the right side, now both. carers come twice daily to change her diaper, wash her and put on clothes. she eats soft foods and very little cuts of meat, but in all small quantity.

this week she’s sleeping most of the day, struggling talking even more, mostly replying « yes » to everything or repeating a few words we tell her. she used to be able to smile, but not anymore. today she barely ate, it seemed too tiring for her. she keeps complaining about her ankles hurting and being thirsty, but it’s like she repeats it without really meaning what she says? she seems so zoned out, and her breathing sounds congested.

anxious but mostly, heartbroken and hurt to see her suffer and trapped and also it went all so fast not even sure she is aware of what’s going on.

Cecile

[aliciamq]

😕Your mom is sooo young. I wish you and your dad the best of possibilities.

[SewBears]

Please review her medications. There could be some serious side effects taking place but I really have no idea. Only experience of weaning some drugs and trying new ones have helped in our situation. It’s a mystery for sure! I’m so sorry that you’re going through this and I wish I could offer more suggestions.

Sending hugs your way.

Xoxo from I SewBears

[Aprilfool20]

It’s so unfair at such a young age. I was diagnosed 2 years ago at age 59 - a real bummer! It feels as though life is over. Not that you want it at all,but if it had happened in late my late70’s/80’s it would be easier to accept after having had the best years. I had give up work at 60, after planning not to give up for at least till I was 66 when I’m due to get the old age pension . So many plans have had to go by the wayside but then that’s life!😏

[Essie23 in reply to Aprilfool20]

Are you in the usa?

[Aprilfool20 in reply to Essie23]

No, UK

[Inarticulate]

Hi. Im really sorry for what you’re all going through. A lot of signs show how exhausted she is and she may well be tired of fighting everything. It’s worth reviewing her medication (like someone earlier said) and asking for someone from a palliative care team to review her. They should be able to also point you in the direction of other support services. If you have a good OT they should be able to help mobilise the services. PSPA charity can also tell you what is in your area that might be able to help. Not sure if you’re in UK, but I hope some of these might help.

[honjen43]

I know what you are going through. I had a similar journey through CBD with my husband.

I found the descent and loss of ability scaring, and no-one else made sense of it. Until at my insistence we got a neurologist consult. Other medics still insisted it was Parkinson's.

Please check that your mum is not suffering from infection anywhere. That will make her tired too and can cause hallucinations and mental disturbance. Pneumonia is silent and sudden.

There seem to be 2 sorts of CBD documented in HU, 1 makes slow progress and the other seems very fast. My husband began to show signs of slowing down about 5 years before diagnosis at the end of his life after a long list of bodily failings.

You can read my posts by long pressing my name. I hope they may give you some idea of where things are for your mum, and prepare you for what may not be far away, or not. I found the worst thing was the panic of not knowing, and without any medical backup. I hope it in some way helps, and gives you some ease.

Big hug!

Jen xxx

[raincitygirl]

So sorry to hear of your mom's rapid decline, Cece. I hope you all are getting enough care support for her: it will only go downhill from here, and a big load on all of you. -At the same time, caring for her is one of the greatest acts of love you can make. She is fortunate to have that love and care from you all.

Hugs for strength XXX

Anne G.

[Cecefrance]

Thank you all for your replies and advice, so much appreciated!