I hate CBD

[Bobbiejo21]

Hi i haven't wrote on here for a long time. My mum was diagnosed with CBD 4 years. For 3 years I was her carer until she had a fall n had to move into a care home to have 24 hour care. Her condition was manageable until June last year. It then went downhill rapidly. She hasn't eaten for over a year and was in hospital all over Xmas. We were told at the beginning of the year she only had 4 weeks left and moved into a new care home. I was told my mum would "100% not be here to c my baby being born in May" n had to prepare our family to say goodbye. Its now almost a year later and my mums still here. She has deteriorated so much, she's bed bound, survives on ensure milkshakes and is so angry all the time. I dont get to c her much due to lockdown but when I do she screams, swears, tries hitting me, gets upset wanting me to take her away. Things r still so hard. When we were told she didn't have long left I was absolutely heartbroken but took some comfort that she wouldn't suffer and go through the stages ive read about online. Now everything is so unknown again and I can c how much she is suffering. The thought that she will endure the stages and suffer even more is so upsetting.

[Northstar1]

Hi BobbiejoIts so hard seeing a loved one suffer its heartbreaking. I too worry about the later stages to come dread it in fact. Are you an only child, I was just thinking about some emotional support for you. Best wishes xx and hugs

[Bobbiejo21 in reply to Northstar1]

Yeah its been really hard. When we first found out I found it extremely hard to come to terms with. No i have 3 brothers but pretty much everything came down to me in regards to caring for mum x my partner has been an amazing support and focusing on him n my 3 kids has kept me grounded xx

[Martina_MP]

Oh that sounds really hard. The care home must be taking good care of her physical needs if she has well outlived her prognosis. She is safe and cared for, and while she isn’t eating actual meals she is getting nourishment. It sounds like she is where she needs to be right now. She is probably not in control of her emotional responses due to the disease and frontal disinhibition. Try to not let her behavior rattle you; stay calm and keep the emotional temperature in the room down. It’s great that you are turning up when you can and trying to brighten her day.

I also worry that my mother will live long enough to suffer more difficulties. But we don’t know that they will. We can only meet the situation as it happens and make the adjustments. The care home and hospice resources have a lot of experience and have likely been through worse. They will help get your mother through.

A neuropsychiatrist or geriatric psychiatrist might have suggestions as to medications that could help with her irritability and combative behavior.

How wonderful to have a sweet new baby and all the hope that represents!

Take care of yourself. You are dealing with a lot!

[Scuppers in reply to Martina_MP]

Hospice will also be there for you and your family. They have resources and people to help you deal with the stress and heartache. I am so thankful that I engaged them.

[Denisejoy1]

Hi Bobbiejo

I really empathise as my mum is in a similar situation, it’s heartbreaking. I can’t bear to think about the suffering she is going through ( she has PSP).

In the Summer she became violent and aggressive too, again so distressing as totally out of character. We discussed it with her neurologist and he advised it is paranoid psychosis and prescribed a medication to keep her less anxious. To start with balancing the side effect of sleepiness with the benefit of calmness was a little tricky but we persevered and now she is in a much more serene place. Perhaps have a chat with your mum’s neurologist.

Sending love

Denise x

[daddyt]

Unfortunately for most patients, the mood changes - anger, aggression, anxiety, depression and then some are part and parcel to PSP - CBD. Try to have a neuropsychiatrist assess her and perhaps prescribe some medication to manage this. I did, and although I still have some issues, they're more manageable.

Tim x

[Daughterwithcbdmom]

This is one of my biggest fears. I'm sorry for you. xx

[Espink50]

Know how you feel