Old 02-10-2019, 07:05 AM #1 (permalink)
Kellbellab's Avatar
New Member (Say Hi)
 
Join Date: 2019
City: Jacksonville
State: Florida
Country: US
Diagnosed: 01/2019
Interest: I am a family member of someone with ALS/MND.
Posts: 5
Kellbellab is on a distinguished road
Kellbellab Kellbellab is offline
New Member (Say Hi)
Kellbellab's Avatar
Join Date: 2019
City: Jacksonville
State: Florida
Country: US
Diagnosed: 01/2019
Interest: I am a family member of someone with ALS/MND.
Posts: 5
Kellbellab is on a distinguished road
Default Optimal living situation- financially, emotionally, spiritually etc

My pALS is my mom. She is newly diagnosed with bulbar onset ALS. As of now her mobility is not impacted too much, just her speech, swallowing and breathing.
We have been discussing living arrangements as her mobility and breathing decline.
Other pALS out there, what did you decide? Did you have a choice to move? Why? Was your home disability “accessible”? What were major factors in your decisions? What factors should we consider?
My mom is 67 years old on Medicare (no VA benefits), no long term insurance, owns a home (an hour away from me - I live 15 min from Mayo in FL), and collects her social security as well as my father’s (deceased 2.12). She is currently retired but is an artist in the community.
I know there’s no “one size fits all” with ALS. I’m just trying to facilitate her having a comfortable and optimal living arrangement with the best care she requires. I work full time but plan to care for her as needed.
Do most pALS chose to stay home, move in with family or long term care facility?
At what point does hospice become involved?

Wow. That was a lot.

I appreciate any and all feedback. ♥️
Kellbellab is offline   Reply With QuoteReply With Quote
Old 02-10-2019, 08:10 AM #2 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,890
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,890
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Optimal living situation- financially, emotionally, spiritually etc

Such a complicated question!

My mom and I moved. I moved because my house was not disability friendly. My mom moved to be closer to family. My aunt and sister stayed put with very strong in house family support as did my uncle. My other aunt went into a facility.

She needs to look at resources and supports. The decision is hers but it impacts you. If she wants to stay put for now she probably needs a plan b because unless her breathing declines more rapidly than everything else she is going to need a lot of help.

How much can you do? You need to be realistic which is hard because you would probably do ANYTHING for your mom. But you have a life and obligations and need that life to be there after. Your mom wants that too.

An hour is a long way especially if you are working and or have a family. I did that for a while but it wasn’t sustainable nor could I maintain adequate oversight for my parents

Closer to clinic is nice but not the biggest issue.

It is horrible but money factors in too.
Nikki J is offline   Reply With QuoteReply With Quote
Thanks from
Kellbellab (02-11-2019)
Old 02-10-2019, 10:16 AM #3 (permalink)
Jrzygrl's Avatar
Member
 
Join Date: 2017
City: S
State: NJ
Country: US
Diagnosed: 08/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 414
Jrzygrl is a name known to allJrzygrl is a name known to allJrzygrl is a name known to allJrzygrl is a name known to allJrzygrl is a name known to allJrzygrl is a name known to all
Jrzygrl Jrzygrl is online now
Member
Jrzygrl's Avatar
Join Date: 2017
City: S
State: NJ
Country: US
Diagnosed: 08/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 414
Jrzygrl is a name known to allJrzygrl is a name known to allJrzygrl is a name known to allJrzygrl is a name known to allJrzygrl is a name known to allJrzygrl is a name known to all
Default Re: Optimal living situation- financially, emotionally, spiritually etc

My PALS is my DH. We had hoped to retire in a few years and possibly move somewhere warmer before his diagnosis. We chose to stay in our house, but have it renovated to be more accessible. We turned our LR/DR into a BR/BA with a large, wheelchair accessible bathroom. We had a ramp installed in our garage. My thinking was, that if we moved, we would know no one. I felt that I would need support and have nowhere to turn. We have a great group of friends and neighbors who have been great help, both physically and emotionally. I do not regret the decision.

Whatever you decide, start sooner rather than later. Renovations take a while, and ALS does not take a break. Although everyone's progression is different, most will tell you that it's hard to stay ahead of it.

Good Luck with the decisions. None of this is easy.
Jrzygrl is online now   Reply With QuoteReply With Quote
Old 02-10-2019, 01:25 PM #4 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 3,065
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is online now
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 3,065
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: Optimal living situation- financially, emotionally, spiritually etc

I chose to move. I could have managed in my former condo but had just renovated it and it would have had to be reconfigured yet again to make it accessible. Then I would have to find outside caregivers but the condo was so small (1,300 sf) that I didn't think it was an ideal situation. I knew the condo would sell quickly for a good price so I put it up for sale.

A very close friend and I decided to go 50/50 on a large beachside condo. We gutted it and did a complete remodel. We both sold our former places in less than a month so the funds were used to remodel and furnish the new place. I'm so glad we did it as soon as we moved it because it took much longer than expected. We just had new windows put in recently. The grounds are accessible, for the most part and it has pools, sauna, social room. I call it my fancy nursing home because there are many elderly/disabled people living here. The good side of that is there are people who do caregiving living here or nearby.

I have no family so this was a very good option for me. It wasn't cheap and I couldn't have done it without my housemate but it works for us.

It is a very hard decision when you have family and no real timeline for the disease.

I think maybe your mom needs more input from you as regards how involved you want to be in her care and an analysis of her finances to see what possibilities are available. Are there any other family members who will step up and where do they live.
KimT is online now   Reply With QuoteReply With Quote
Thanks from
Kellbellab (02-11-2019)
Old 02-11-2019, 05:46 PM #5 (permalink)
Vincent's Avatar
Senior Member
 
Join Date: 2013
City: Barrie
State: ON
Country: CA
Diagnosed: 08/2014
Interest: I have been diagnosed with ALS.
Posts: 856
Vincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to behold
Vincent Vincent is online now
Senior Member
Vincent's Avatar
Join Date: 2013
City: Barrie
State: ON
Country: CA
Diagnosed: 08/2014
Interest: I have been diagnosed with ALS.
Posts: 856
Vincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to behold
Default Re: Optimal living situation- financially, emotionally, spiritually etc

We moved from a 2 story house to a condo. 1 floor, elevator, someone else does grass cutting and snow removal ( living Canada snow is a bigger issue than grass). The only thing missing is indoor parking. It already has a walk in shower, and tall toilets. The place is wheelchair friendly. We did it all within 6 weeks of being diagnosed. Talk about a power purge. going from a 3 bedroom house with a furnished basement to a 2 bedroom condo. Life is simpler here than having and maintaining a house. Spiritually, it is a 10 minute wheelchair ride to my local parish.
Vincent

Last edited by Vincent : 02-11-2019 at 05:53 PM
Vincent is online now   Reply With QuoteReply With Quote
Reply

Tags
artist, breathing, bulbar, bulbar onset, decline, diagnosed, disability, family, hospice, insurance, medicare, mobility, newly diagnosed, onset, social security, speech, swallowing, va benefits, work


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
My situation Georgia Boy Do I Have ALS? Is This ALS? 26 01-20-2018 09:57 AM
Living at Home or Go to Assisted Living? Hope4Me General Discussion About ALS/MND 9 06-11-2015 06:03 PM
My father has ALS, emotionally abusing my mom. asya General Discussion About ALS/MND 23 04-29-2013 11:33 AM
Emotionally Distancing ruthiep Current Caregivers (CALS) 7 10-26-2011 08:49 PM
Wavering emotionally califsand Current Caregivers (CALS) 26 08-15-2008 08:02 PM


All times are GMT -5. The time now is 05:00 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016