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tallgeoff

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Dec 17, 2014
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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
 
It is not in anyway safe whatsoever for your mother to stay by herself at this point. Especially, at her age! DO NOT LEAVE HER ALONE WITHOUT AT LEAST HAVING THE MEDICAL ALERT SYSTEM IN PLACE. This issue is not about your mom's pride or independence anymore. It is about her safety at this point. Does your mom have any neighbor's or anyone that could drop in and check on her until you get some help in? I will let others chime in.
 
Geoff, it sounds as though you and your siblings are beating your heads against a rock with her...for now. I really like your last paragraph because that lays down the law--do what you what mom, but don't expect me to drop everything in a crisis if you don't want to preplan.

sounds like she is quite her own woman and has not fully accepted what is coming. I think if you do leave her because you can't convince her you probably will have to come back to a crisis. hopefully, it will be a minor one, and that will scare her into getting things in place.

The thing is as you know you can try as hard as possible to help her and talk to her, but she does not have to listen and she doesn't have to do what you say. probably she is going to have to do it the hard way--her way.
 
Geoff, I went through basically the same problems with parents who didn't have ALS--I know this is even more frightening. You've done a wonderful job of planning for your mom, but you can't force anything, so your plan sounds wise. One of the biggest challenges for CALS is stepping back when we want to protect and letting our PALS make choices that frighten us. Ultimately, however, we have no choice--it's their journey. As wonderfully proactive as you and your sister have been, you may have to accept that one of you wil lhave to rush back to put these things in place after your mom suffers some crises, and that her options may be far more limited as a result of her choice to wait. I think that explaining your own limitations is very fair--perhaps she will respond to your needs while she is learning to accept her own. Make it about you until she is ready for it to be about her. In the meantime, if mom choices having fun for the final week, try to accept that and save your energy for the next round.
 
Thanks to those who replied. It was helpful advice. FYI I did call my mother and played the partnership card and did not achieve the desired result of getting a regular companion weekly appt commitment.

Some things I learned. It is a very difficult time for Mum and she needs encouragement, support, humour, patience and to feel she is in control. she is processing the future but it obviously is not pleasant and as anyone she would prefer to carry on until she can't. She concerned about spiraling into depression if she is too future focused.

These are obviously all valid thoughts so despite my worries I wrote her to say I could do whatever I can to support her and prepare in the background plans to for support when needed. And no mater what I loved her and would be there.

I did also add the experiences I've had transitioning 3 seniors 2 in-laws and an aunt through serious illness including terminal cancer.

I need to let her adjust in her own time and work in the background. She also said she wants encouragement for the work she has done.

Hope this may help others. Thanks again

Tallgeoff
 
......... She concerned about spiraling into depression if she is too future focused.......


Tallgeoff


this is huge and needs to be taken to heart on your part. My husband says if he even thinks about what lies ahead he would find himself in a VERY dark place. So he very much lives in today and has learned to accept my looking into and planning for the very close future only, as in he will accept the next need for the loss he can see happening, a lift chair because that was getting difficult, the wheelchair when the walker has become so very difficult...ect. ANd some things are harder to give up than others
what I am saying is it is progressive, look ahead but don't think you can cover everything and lay it before her...aint gonna happen!
baby steps, small bites
 
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