KatBee
Member
- Joined
- Dec 4, 2015
- Messages
- 19
- Reason
- Lost a loved one
- Diagnosis
- 10/2013
- Country
- CA
- State
- Ontario
- City
- Ottawa
Hi folks,
I've read some of your posts, but this is my first time posting.
I'm currently caring for my mom, who has ALS. Feeling a bit lonely and isolated, so I'm reaching out online...
About mom:
She was diagnosed just over two years ago. She just turned 64 last week. She has limb-onset. She can still get from the bed to her electric wheelchair using a walker, one hand is no use and the other hand is getting weaker. Speech and swallowing are generally fine. She decided immediately after diagnosis to pursue an 'early exit' strategy and has maintained that aim through the two years with the disease. Her health care team is supportive of her choice to stop eating and drinking some time in the near future. Mom's plan was to stop eating and drinking at the end of October, but she decided to delay it to finish some projects. At her request, we had a goodbye party for her that she only wanted to invite a few friends to, but she hasn't wanted to see anyone since that.
About me:
I am 26 and an only child of divorced parents (aka my mom's only family caregiver). When my mom was diagnosed I was living with my fiancé (now husband) in British Columbia, which is on the other side of the country from Ontario, where my mom lives. I have come to Ontario a number of times, sometimes for months, over the past two years to help mom, although I continued living in BC. This time I arrived early October and plan to stay here as long as I need to. I am living at my dad's house, which is not far from my mom's (bachelor) apartment. For the first month I stayed at mom's from 9am-9pm, but now I do 9am-2pm and 7:30-9:30pm every day (I'll increase it again as needed). My husband is in BC, covering the rent on our apartment and getting his grad degree.
There is a lot more to our story ... her insistence that I not 'derail' my life because of her illness, a wedding, a few trips together (within Canada), her social isolation before the diagnosis, all the time getting basic supports in place... but the main points are there.
Among other things, I'm wondering: what do you do to help a PALS enjoy their days...? My mom is bored and lonely and I'm tired and confused.
I've read some of your posts, but this is my first time posting.
I'm currently caring for my mom, who has ALS. Feeling a bit lonely and isolated, so I'm reaching out online...
About mom:
She was diagnosed just over two years ago. She just turned 64 last week. She has limb-onset. She can still get from the bed to her electric wheelchair using a walker, one hand is no use and the other hand is getting weaker. Speech and swallowing are generally fine. She decided immediately after diagnosis to pursue an 'early exit' strategy and has maintained that aim through the two years with the disease. Her health care team is supportive of her choice to stop eating and drinking some time in the near future. Mom's plan was to stop eating and drinking at the end of October, but she decided to delay it to finish some projects. At her request, we had a goodbye party for her that she only wanted to invite a few friends to, but she hasn't wanted to see anyone since that.
About me:
I am 26 and an only child of divorced parents (aka my mom's only family caregiver). When my mom was diagnosed I was living with my fiancé (now husband) in British Columbia, which is on the other side of the country from Ontario, where my mom lives. I have come to Ontario a number of times, sometimes for months, over the past two years to help mom, although I continued living in BC. This time I arrived early October and plan to stay here as long as I need to. I am living at my dad's house, which is not far from my mom's (bachelor) apartment. For the first month I stayed at mom's from 9am-9pm, but now I do 9am-2pm and 7:30-9:30pm every day (I'll increase it again as needed). My husband is in BC, covering the rent on our apartment and getting his grad degree.
There is a lot more to our story ... her insistence that I not 'derail' my life because of her illness, a wedding, a few trips together (within Canada), her social isolation before the diagnosis, all the time getting basic supports in place... but the main points are there.
Among other things, I'm wondering: what do you do to help a PALS enjoy their days...? My mom is bored and lonely and I'm tired and confused.