tallgeoff
New member
- Joined
- Dec 17, 2014
- Messages
- 2
- Reason
- Loved one DX
- Country
- CA
- State
- ON
- City
- Toronto
I have just joined this forum and having reading some entries i know that I'll get some good advice on some pressing issues.
Background
My 84 year old mother who lives in Montreal is awaiting her formal diagnosis of Bulbar ALS. Symptoms started in March and her voice and speech and breathing are now significantly impacted. We have been to the ALS Clinic and received the likely diagnosis but require results of blood work and another nerve study before a formal declaration. Until then we do not receive any government community care.
She lives alone in a 3 story town house and is fully and fiercely independent. She still drives, runs her household, volunteers everywhere, is a Raging Granny social activist and a big contributor to her church.
My brother lives 30 minutes away but lives alone, is a sole owner home renovation contractor and is available for drop ins on the way home and weekend visits. I and 2 sisters live in Toronto (5 hours away) and Vancouver. I am the primary caregiver, retired and with a healthcare background. As such I have been reading nd consulting heavily since November reading the ALS Manual meeting the Canadian Society team, Clinic staff, and recently the Long distance Caregivers Guide. I have been for 3 visits of a week each and to every doctors appt. I'm next there the first week of Feb for another ALS Clinic visit, nerve tests and again for the diagnosis Feb 16 or 23.
My sister from Vancouver has been with mum for 1 month now but leaves in a week. Mum now needs:
Medical Alert system
Home Care Companion
Home Assessment
We have been trying to balance patience with persistence as we all have concerns when my sister leaves. My mother has resisted a home care companion of any type (what would they do?) and believes she remains fully independent although that gives no credit for my sisters work enabling her (even as a driver my sister is saving my mothers energy let alone the multiple task she has done).
We are trying to keep Mum in charge of her life but it is hard as we are concerned for her safety and ability to remain engaged in her community and home life without human companion support. I am also concerned that once my sister leaves my mother's ability to hire a companion, make her home changes and order the alert system are almost nil.
How does one allow time for your family member to process this devastating news, concede their independence and accept setting up support systems while ensuring these systems and people are be put in place when her children are available to ensure these things happen? We are on a forced timetable unfortunately.
I have tried most things citing the expert facts that its best to set up things when you are well vs infirmed and all of the other advice based on the disease physiology (loss of energy etc). I've used humour, being firm, saying we as kids are all worried.
I have had 2 lengthy and thoughtful discussions well rehearsed to outline the elements of the disease progression and to state what the experts (ALS Manual) say needs to be in place to be safe and enabled. swe wanted in place asap. These sessions have had an impact but shortly after she shies away from the next steps and moves back to life as usual. She jokingly calls me the Ogre and would rather me keep her laughing.
In the last talk she agreed to an alert system and to meet a Care Giver Manager but the inertia has set back in.
My sister is getting burn out and feels as I did a month ago when she feels she is working at cross purposes with Mum. After a solid plan for the next week she is now going to ask Mum, do we put these systems/people inp lace or do you just want to have fun for her last week? She's usually very patient but now frustrated as well.
My last thought is to move to the next level and again have a quiet discussion outlining that our care giving arrangement is a partnership between her and I and that for it to work I have some conditions that she needs to meet. And if she doesn't - that's OK, its her life, but that my participation was not unconditional and she may find herself on her own on some tasks. I would explain I have a life as well and while I'm happy to come to Montreal for a week or more multiple times to set up her supports as I can schedule them , I'm less keen if she ignores this advance work and the wants me down on an emergency basis when she is in a crisis and everyone is stressed.
Patience, persistence and consequences are the delicate balance I/we are living.
Can anyone provide advice or experiences that could help me/us? In a week my mother is on her own.
Many thanks,
Geoff
Toronto
Background
My 84 year old mother who lives in Montreal is awaiting her formal diagnosis of Bulbar ALS. Symptoms started in March and her voice and speech and breathing are now significantly impacted. We have been to the ALS Clinic and received the likely diagnosis but require results of blood work and another nerve study before a formal declaration. Until then we do not receive any government community care.
She lives alone in a 3 story town house and is fully and fiercely independent. She still drives, runs her household, volunteers everywhere, is a Raging Granny social activist and a big contributor to her church.
My brother lives 30 minutes away but lives alone, is a sole owner home renovation contractor and is available for drop ins on the way home and weekend visits. I and 2 sisters live in Toronto (5 hours away) and Vancouver. I am the primary caregiver, retired and with a healthcare background. As such I have been reading nd consulting heavily since November reading the ALS Manual meeting the Canadian Society team, Clinic staff, and recently the Long distance Caregivers Guide. I have been for 3 visits of a week each and to every doctors appt. I'm next there the first week of Feb for another ALS Clinic visit, nerve tests and again for the diagnosis Feb 16 or 23.
My sister from Vancouver has been with mum for 1 month now but leaves in a week. Mum now needs:
Medical Alert system
Home Care Companion
Home Assessment
We have been trying to balance patience with persistence as we all have concerns when my sister leaves. My mother has resisted a home care companion of any type (what would they do?) and believes she remains fully independent although that gives no credit for my sisters work enabling her (even as a driver my sister is saving my mothers energy let alone the multiple task she has done).
We are trying to keep Mum in charge of her life but it is hard as we are concerned for her safety and ability to remain engaged in her community and home life without human companion support. I am also concerned that once my sister leaves my mother's ability to hire a companion, make her home changes and order the alert system are almost nil.
How does one allow time for your family member to process this devastating news, concede their independence and accept setting up support systems while ensuring these systems and people are be put in place when her children are available to ensure these things happen? We are on a forced timetable unfortunately.
I have tried most things citing the expert facts that its best to set up things when you are well vs infirmed and all of the other advice based on the disease physiology (loss of energy etc). I've used humour, being firm, saying we as kids are all worried.
I have had 2 lengthy and thoughtful discussions well rehearsed to outline the elements of the disease progression and to state what the experts (ALS Manual) say needs to be in place to be safe and enabled. swe wanted in place asap. These sessions have had an impact but shortly after she shies away from the next steps and moves back to life as usual. She jokingly calls me the Ogre and would rather me keep her laughing.
In the last talk she agreed to an alert system and to meet a Care Giver Manager but the inertia has set back in.
My sister is getting burn out and feels as I did a month ago when she feels she is working at cross purposes with Mum. After a solid plan for the next week she is now going to ask Mum, do we put these systems/people inp lace or do you just want to have fun for her last week? She's usually very patient but now frustrated as well.
My last thought is to move to the next level and again have a quiet discussion outlining that our care giving arrangement is a partnership between her and I and that for it to work I have some conditions that she needs to meet. And if she doesn't - that's OK, its her life, but that my participation was not unconditional and she may find herself on her own on some tasks. I would explain I have a life as well and while I'm happy to come to Montreal for a week or more multiple times to set up her supports as I can schedule them , I'm less keen if she ignores this advance work and the wants me down on an emergency basis when she is in a crisis and everyone is stressed.
Patience, persistence and consequences are the delicate balance I/we are living.
Can anyone provide advice or experiences that could help me/us? In a week my mother is on her own.
Many thanks,
Geoff
Toronto
