ThisPresentMoment
Distinguished member
- Joined
- May 30, 2018
- Messages
- 124
- Reason
- Lost a loved one
- Diagnosis
- 12/2017
- Country
- US
- State
- MN
- City
- Minneapolis
We have a mix of ways that we have help. I thought I'd share them. I'd also be interested in hearing your ideas.
For reference, my Dad is mostly immobile now, (diagnosed the end of 2018.) All transfers are with a Hoyer lift. He does get transferred to a commode or his PWC, (mostly if we're leaving the house these days.) He's no longer swallowing and has a feeding tube. He has bipap, but mostly uses it at night. He's almost completely lost his voice.
- ALS respite: We have 18 hours a month of respite through ALS. We use them for caregivers to come to the house and give Dad baths and do his range of motion exercises two mornings a week.
- Volunteers from church: We have a nurse from church who volunteered to come one morning a week so my Mom can get out of the house and do some shopping.
- Friends: I have a friend who has done home care. She also comes one morning a week to help.
- Friend in nursing school: She comes two mornings a week for baths and exercises. She also comes Monday - Wednesday evenings for getting ready for bed.
This leaves Sunday morning and Thursday-Saturday evenings for me to cover.
In addition, between me or my friend who is studying to be a nurse - one of us is always on call. My husband and I are temporarily renting a townhouse within five minutes of Mom & Dad. She lives within 15 minutes. So, if I need to leave the area, I make sure that she can cover them if they need help.
I know that there are websites that you can use to organize helpers. Maybe someone can remind us of what they are? We haven't done that. It's one thing to have someone buy groceries for you. It's a completely different thing to ask if they are OK with helping with toileting.
I know more help can be available if you're a veteran. My Dad isn't. Maybe someone with more knowledge can chime in.
There was a lot of talk of hospice at the beginning. We haven't gone that route yet. I do think we probably have all the equipment that we need now. It's likely getting closer. But, it's a definite change of mindset.
In our case, some help is paid, while others do not want any compensation. We have avoided paying through any agency. I realize there are benefits; having a back up, background checks, etc. Of course you pay extra for that too.
I feel extremely blessed at the amount of help that we have. I read about some of you doing it all on your own and it breaks my heart. I'm hoping that sharing ideas will help all of us get the help we need.
For reference, my Dad is mostly immobile now, (diagnosed the end of 2018.) All transfers are with a Hoyer lift. He does get transferred to a commode or his PWC, (mostly if we're leaving the house these days.) He's no longer swallowing and has a feeding tube. He has bipap, but mostly uses it at night. He's almost completely lost his voice.
- ALS respite: We have 18 hours a month of respite through ALS. We use them for caregivers to come to the house and give Dad baths and do his range of motion exercises two mornings a week.
- Volunteers from church: We have a nurse from church who volunteered to come one morning a week so my Mom can get out of the house and do some shopping.
- Friends: I have a friend who has done home care. She also comes one morning a week to help.
- Friend in nursing school: She comes two mornings a week for baths and exercises. She also comes Monday - Wednesday evenings for getting ready for bed.
This leaves Sunday morning and Thursday-Saturday evenings for me to cover.
In addition, between me or my friend who is studying to be a nurse - one of us is always on call. My husband and I are temporarily renting a townhouse within five minutes of Mom & Dad. She lives within 15 minutes. So, if I need to leave the area, I make sure that she can cover them if they need help.
I know that there are websites that you can use to organize helpers. Maybe someone can remind us of what they are? We haven't done that. It's one thing to have someone buy groceries for you. It's a completely different thing to ask if they are OK with helping with toileting.
I know more help can be available if you're a veteran. My Dad isn't. Maybe someone with more knowledge can chime in.
There was a lot of talk of hospice at the beginning. We haven't gone that route yet. I do think we probably have all the equipment that we need now. It's likely getting closer. But, it's a definite change of mindset.
In our case, some help is paid, while others do not want any compensation. We have avoided paying through any agency. I realize there are benefits; having a back up, background checks, etc. Of course you pay extra for that too.
I feel extremely blessed at the amount of help that we have. I read about some of you doing it all on your own and it breaks my heart. I'm hoping that sharing ideas will help all of us get the help we need.