Old 06-03-2010, 12:53 AM #1 (permalink)
CCMominVA's Avatar
New Member
 
Join Date: 2010
City: Stafford
State: VA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 41
CCMominVA is on a distinguished road
CCMominVA CCMominVA is offline
New Member
CCMominVA's Avatar
Join Date: 2010
City: Stafford
State: VA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 41
CCMominVA is on a distinguished road
Default If you have a private duty nurse --

When did you decide to do it?

My mom will be alone after I leave on Monday to head overseas. I am so freaked out.

My dad is wheelchair bound, but pretty independent, still wants to use the toilet on his own, etc.

Mom nearly dropped him on the toilet the other day, and he was hanging onto her neck (she has arthritis and fibromyalgia), so she's screaming at him to let go.

Today, she was giving him medication and gave him a bit too much. He got loopy, of course, and ended up driving his chair out in the woods where he hit a tree root and fell out of his chair. Fortunately, my nephew is here until the 9th and was able to help.

I am feeling like they could really use assistance, but they refuse! I am at wit's end! My mom keeps saying once I am gone she will ask for help, but I feel like they should be planning and arranging.

Can you say stressed out? Yes, that's me....stressed out!
CCMominVA is offline  
Old 06-03-2010, 01:07 AM #2 (permalink)
marya's Avatar
Member
 
Join Date: 2010
City: Houston
State: TX
Country: US
Diagnosed: 0/0000
Interest: I lost a loved one to ALS/MND.
Posts: 115
marya is on a distinguished road
marya marya is offline
Member
marya's Avatar
Join Date: 2010
City: Houston
State: TX
Country: US
Diagnosed: 0/0000
Interest: I lost a loved one to ALS/MND.
Posts: 115
marya is on a distinguished road
Default Re: If you have a private duty nurse --

CCMominVA - Personally I think that your folks need assistance like yesterday! If you have the authority to get assistance in for them - I would do it before going overseas for sure. Is it possible that you could convince them to accept assistance by telling them that if they don't YOU will worry so much and that it would be helping you if they got assistance? Why would they ask for assistance after you've gone overseas? What would propel them to accept it then and not now? God be with you as you navigate this difficult road.
Mary
marya is offline  
Old 06-03-2010, 01:13 AM #3 (permalink)
CCMominVA's Avatar
New Member
 
Join Date: 2010
City: Stafford
State: VA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 41
CCMominVA is on a distinguished road
CCMominVA CCMominVA is offline
New Member
CCMominVA's Avatar
Join Date: 2010
City: Stafford
State: VA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 41
CCMominVA is on a distinguished road
Default Re: If you have a private duty nurse --

Thank you Mary! I feel the same (needing the help since yesterday), but at the same time have wanted my parents to have some sort of autonomy in their choices. They know my feelings very well, I have been stating the same case, oh, going on a year! It's always, "Well, you're here". My sister is coming next week (2 days after I'm gone) and my brother is going to come as well, but we children can only do so much. When it comes to things like toileting, etc, my dad refuses to allow us children to do that for him. AHHHHHHH!

My mom keeps saying "When the time comes, I will get help"....and I scream "The time has come mom!". Sigh. I pray I am much more agreeable with my children one day.

Financially, they are able, I am having a hard time understanding where they are coming from.
CCMominVA is offline  
Old 06-03-2010, 01:15 AM #4 (permalink)
pepsiman's Avatar
Member
 
Join Date: 2009
City: Latham
State: NY
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 442
pepsiman is on a distinguished road
pepsiman pepsiman is offline
Member
pepsiman's Avatar
Join Date: 2009
City: Latham
State: NY
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 442
pepsiman is on a distinguished road
Default Re: If you have a private duty nurse --

I have to agree with Mary. In September I decided we (well, really I) needed some help. Liz was very much against it, she was uncomfortable with other people doing the toileting, etc, but I just couldn't do it all anymore. Finally, I called a nurse that had been highly recommended by some friends. I brought her in just like a job interview. Liz absolutely loved her. I wish I had done it months before. Just do it, don't take no for an answer. Just make a concerted effort to find someone that really meshes with your family and you'll all be fine.
pepsiman is offline  
Old 06-03-2010, 02:27 AM #5 (permalink)
irismarie's Avatar
Very Helpful Member
 
Join Date: 2009
City: valeilles
State: tarn et garonne
Country: FR
Diagnosed: 05/2010
Interest: I have been diagnosed with ALS.
Posts: 1,388
irismarie is an unknown quantity at this point
irismarie irismarie is offline
Very Helpful Member
irismarie's Avatar
Join Date: 2009
City: valeilles
State: tarn et garonne
Country: FR
Diagnosed: 05/2010
Interest: I have been diagnosed with ALS.
Posts: 1,388
irismarie is an unknown quantity at this point
Default Re: If you have a private duty nurse --

Do you remember any time during your young young life when you were insisting on doing something but in your heart of hearts wishing an wishing that someone else would take over? I feel sure that is what is going on here. They are turning into YOUR children and are being stubborn but really really want you to force them into a better course of action. It is hard on you leaving htem, but if you can organinse something from home, please do try it.......and Dick really does have the voice of experience
Love
Irismarie
irismarie is offline  
Old 06-03-2010, 06:51 AM #6 (permalink)
CCMominVA's Avatar
New Member
 
Join Date: 2010
City: Stafford
State: VA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 41
CCMominVA is on a distinguished road
CCMominVA CCMominVA is offline
New Member
CCMominVA's Avatar
Join Date: 2010
City: Stafford
State: VA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 41
CCMominVA is on a distinguished road
Default Re: If you have a private duty nurse --

Thank you Iris! I am definitely my parents children, as I can be very stubborn myself!

This is definitely a safety issue, so I'm going to work diligently today whether they like it or not to get someone in here!

Blessings everyone!
CC
CCMominVA is offline  
Old 06-03-2010, 07:13 AM #7 (permalink)
New Member
 
Join Date: 2010
City: greenvale
State: victoria
Country: AU
Diagnosed: 01/2009
Interest: Husband lost his battle with ALS Sept 2011
Posts: 77
chriss is on a distinguished road
chriss chriss is offline
New Member
Join Date: 2010
City: greenvale
State: victoria
Country: AU
Diagnosed: 01/2009
Interest: Husband lost his battle with ALS Sept 2011
Posts: 77
chriss is on a distinguished road
Default Re: If you have a private duty nurse --

I would also add from experience start "yesterday". We use two agencies and some things to consider are that you may find someone great who meets all your needs but they have limited availability. So then you may need to engage two even three people just to get sufficient coverage or to have back up if they are off sick. Having someone brought in earlier rather than later means that they can adjust to changing circumstances. Bringing someone new in at a later stage can be difficult as they have less lead in time to pick up the skills required. In my case my husband is on bipap almost 24 hrs per day and so the carer needs to be competent with putting on the mask quickly and getting the seal, sometimes many many times a day. Then sometimes the person is fine but your partner does not have confidence in them so it will not work. I suppose what I'm saying is that making the decision to have a nurse or carer is one thing but then it can take time to set it all up. Perhaps do a little research yourself into what is available and suggest you set up some interviews before you go and sit in on them? That way you may also feel reassured knowing who is involved in their care. Maybe start someone on only a few hours, just so your parents get used to the idea and then increase hours later as needed? Thanks Chris
chriss is offline  
Old 06-03-2010, 07:32 AM #8 (permalink)
CCMominVA's Avatar
New Member
 
Join Date: 2010
City: Stafford
State: VA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 41
CCMominVA is on a distinguished road
CCMominVA CCMominVA is offline
New Member
CCMominVA's Avatar
Join Date: 2010
City: Stafford
State: VA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 41
CCMominVA is on a distinguished road
Default Re: If you have a private duty nurse --

Thanks Chriss - that is exactly what I've tried explaining to them, that they would rather have someone overlap at this time to ensure the needs are met!

Fortunately, my sister will get here and if I get the process started, she should be able to oversee as well!
CCMominVA is offline  
Old 06-03-2010, 03:21 PM #9 (permalink)
Member
 
Join Date: 2007
City: Stafford
State: VA
Country: US
Diagnosed: 03/2008
Interest: My husband gained his freedom from ALS on 09/24/12
Posts: 401
pmbenb83 is on a distinguished road
pmbenb83 pmbenb83 is offline
Member
Join Date: 2007
City: Stafford
State: VA
Country: US
Diagnosed: 03/2008
Interest: My husband gained his freedom from ALS on 09/24/12
Posts: 401
pmbenb83 is on a distinguished road
Default Re: If you have a private duty nurse --

Having someone come in to help sounds a like a great plan. If you come across a good company or person in our area, please let me know, because I'm sure we will need help in the future.

Good luck!
pmbenb83 is offline  
Old 06-03-2010, 10:33 PM #10 (permalink)
CCMominVA's Avatar
New Member
 
Join Date: 2010
City: Stafford
State: VA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 41
CCMominVA is on a distinguished road
CCMominVA CCMominVA is offline
New Member
CCMominVA's Avatar
Join Date: 2010
City: Stafford
State: VA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 41
CCMominVA is on a distinguished road
Default Re: If you have a private duty nurse --

Mom finally agreed! Well, more like I got the hospice nurse, and our ALS coordinator involved in helping her make the decision. Phew! So, we have an intake appointment Monday afternoon (at noon) -- I don't have to leave for the airport until 6p, so I will be able to breath a little sigh of relief! My nephew can help until my sister gets here on Wednesday. She plans on staying until the 19th, Dad has the ALS clinic appointment on the 17th, and then my brother is coming right after.

It's been a crazy day -- after Dad's slight OD, he has been foggy all day. Respiration good, but what an ordeal! Now he's complaining that we are keeping him in prison (due to fall risk) in the hospital bed. So, he is almost back to normal! We did get him out this evening into his chair for about 30 mins, and he stayed clear through that.

Thank you all for listening through this roller coaster ride - and Pam, I will definitely let you know! Still so excited to "know" someone who is just about around the corner from us!

CC
CCMominVA is offline  
Old 06-03-2010, 11:52 PM #11 (permalink)
marya's Avatar
Member
 
Join Date: 2010
City: Houston
State: TX
Country: US
Diagnosed: 0/0000
Interest: I lost a loved one to ALS/MND.
Posts: 115
marya is on a distinguished road
marya marya is offline
Member
marya's Avatar
Join Date: 2010
City: Houston
State: TX
Country: US
Diagnosed: 0/0000
Interest: I lost a loved one to ALS/MND.
Posts: 115
marya is on a distinguished road
Default Re: If you have a private duty nurse --

Good going CCMominVA! What a herculean task you have accomplished! Make sure that your sister and brother are on message and that they will not allow your Mom or Dad to renege on this decision to have some help. I know you will feel more comfortable as you go overseas. Take care and keep the faith! You did REALLY good! Mary
marya is offline  
Old 06-04-2010, 10:13 PM #12 (permalink)
Just J's Avatar
Member
 
Join Date: 2007
City: Havre de Grace
State: MD
Country: US
Diagnosed: 01/2010
Interest: I have been diagnosed with UMND/PLS.
Posts: 304
Just J is on a distinguished road
Just J Just J is offline
Member
Just J's Avatar
Join Date: 2007
City: Havre de Grace
State: MD
Country: US
Diagnosed: 01/2010
Interest: I have been diagnosed with UMND/PLS.
Posts: 304
Just J is on a distinguished road
Default Re: If you have a private duty nurse --

That's excellent news. I hope all works out as planned. Please keep us posted. (I need to be planning this myself but just haven't done it yet).
Just J is offline  
Old 06-05-2010, 11:37 PM #13 (permalink)
CCMominVA's Avatar
New Member
 
Join Date: 2010
City: Stafford
State: VA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 41
CCMominVA is on a distinguished road
CCMominVA CCMominVA is offline
New Member
CCMominVA's Avatar
Join Date: 2010
City: Stafford
State: VA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 41
CCMominVA is on a distinguished road
Default Re: If you have a private duty nurse --

Thanks Mary and Judie!

I just keep pushing the whole "Mom is exhausted without realizing it" with them! I am realizing that I need to let go and let God. I am going to miss them terribly - I plan on coming back mid July to make sure all is running smoothly. I think I am so used to being in control (I complain about Dad needing to control all - apple didn't fall far from the tree!), it is driving me crazy that I won't be able to be here!

I'm done packing for tonight, have a few more things to gather. Need to go to my house that we have on the market and get a few things I left behind, thinking I'd get over there. Of course, I haven't because I've been helping put fires out here! Between Dad's care, fighting the VA and dealing with Congressman, and being a mom, most of my other responsibilities have been put on the backburner! I'm breathing a little easier today knowing that help is on the way!
CCMominVA is offline  
Old 06-05-2010, 11:55 PM #14 (permalink)
Miss's Avatar
Very Helpful Member
 
Join Date: 2010
City: Way Down South
State: In the Land of Cotton
Country: US
Diagnosed: 04/2010
Interest: I lost a loved one to ALS/MND.
Posts: 1,760
Miss is on a distinguished road
Miss Miss is offline
Very Helpful Member
Miss's Avatar
Join Date: 2010
City: Way Down South
State: In the Land of Cotton
Country: US
Diagnosed: 04/2010
Interest: I lost a loved one to ALS/MND.
Posts: 1,760
Miss is on a distinguished road
Default Re: If you have a private duty nurse --

Good luck! I hope you have a wonderful, restful month!
Miss is offline  
Closed Thread

Tags
dad, driving, early, fell, fibromyalgia, planning, wheelchair


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
Hiring an in home health care company or private nurse Jennybav General Discussion About ALS/MND 9 11-10-2014 10:45 PM
Jury Duty maryhahnward Current Caregivers (CALS) 7 10-16-2014 07:14 PM
Doing Double Duty fullmoonhope Current Caregivers (CALS) 5 08-12-2013 01:08 PM
Home Health Nurse! brooksea Current Caregivers (CALS) 19 11-14-2011 10:49 PM
nurse says could be last days Phil's wife Current Caregivers (CALS) 41 06-22-2011 12:47 PM
what to ask the nurse irismarie General Discussion About ALS/MND 38 01-10-2010 03:50 AM
Frustrated nurse Sakers Current Caregivers (CALS) 5 08-20-2009 09:33 PM
mnd nurse rocmg General Discussion About ALS/MND 15 03-21-2009 05:24 PM
Traveling Nurse/Aid? hopealive General Discussion About ALS/MND 2 09-15-2008 12:32 AM


All times are GMT -5. The time now is 12:47 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