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hopealive

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Hello All.

I check in often, and post very little. However, this forum helps me so very much.

My mother has bulbar onset ALS, and we are getting ready to form a care team. Any suggestions, ideas. It has been about 2 years now, she is doing great aside from not being able to eat or speak. We just want her to be surrounded by loving friends and family, and to keep her spirits up. My father has been the only one around to do PEG feedings etc, and we need to get him out of the house as well.

Thanks so much,
Holly
 

CindyM

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Hello Holly. You and your family are so thoughtful to begin to think of ways to reduce Dad's responsibilities. so many families let one or two members do all the work! I hope you get lots of ideas and I hope Dad enjoys his time off. Cordially, Cindy
 

hopealive

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Thanks Cindy.

You are very helpful, and kind.
 

Maryteeth

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My mother also has bulbar onset ALS can still speak some, but we can not understand her well and she can eat some. She chokes constantly, and the Dr. has already advised her of a feeding tube, but she refuses. She is very stubborn. She refuses to go to support groups and refuses to admit she needs help. It is very frustrating to see her choke constantly. I'm very interested in knowing how the care team turns out. Mary
 

MarciaA

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Holly,
When we went about starting my sister's care team, we consulted a book. I'd have to find the book now to make sure I'm getting the name right, but I think it was "Share the Care". I can't remember the authors. It was extremely helpful and gave lots of suggestions about how to run the first meeting when you get everyone together to figure out who can do what. There are forms that you can have people fill out to help with the organization. My sister's team worked beautifully! People were scheduled to bring over meals, do laundry, clean, take my sister to the pool, etc. You have to have someone in charge that's willing to do a lot of work to make sure the schedule runs smoothly and that people get called to do the jobs, but it's WELL worth it! It took a lot of stress off my brother-in-law to know that he wasn't required to play the role of superman ALL the time! Good luck!

Marcia
 

hopealive

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Marcia,
Thanks for the tips. I really appreciate it! I will let everyone know what we find out, what works what doesn't.
So far, we are having Mom put together a list of things she would like to do, see, etc.. so at least once a week we have an outing planned. This should be fun!
Also, found a hairstylist and nail tech to come out once a month and do a pedicure and haircut. I think these things can make a world of difference. So far she doesn't seem to want others to clean or do errands, still thinks my Dad should do all of that, we will see how that works out. :):)
:)
Share the Care, I will definitely look that up.
Love,
Holly
 

paula-jane

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Caregiving... I think I could write a book on this!

I would not have been able to keep my mum at home had it not been for our care team.
I am not superhuman. There are no points to be scored for going it all alone. I have always believed that it takes a village to do anything these days!

I agree, the most important thing is one person to oversee the scheduling (In our case I managed the whole thing). We had a huge month long calendar where we could write in everyone's share of the load. We used different coloured pens for each person. It's important to find friends and people you know will be there for the long haul. Everyone wants to help, but, time and life have a funny way of removing some people from the "schedule". Phone numbers! They are a must have. Make sure you have the phone numbers of everyone involved.

Exhaust every hour available from funded care or paid care and then organize with family and friends the remaining time and jobs. I am by nature extremely regimented and organized.. so I needed to have my mum's care the same every week. For example.. if "Mary" wants to cook a meal once a week... choose the same day every week. Choose specific days for each chore or each person. It's easier for people to block out the same time each week and to remember to be there!

Another important part of our team.. was our go-to girl. She lived less than a five-min walk from my mum (I am a 40 min drive). She was our second power of attorney and made herself available at any time of the day for whatever "extra" was needed. We did not ask her to cook or clean, but, she spent every night helping to get my mum into bed.

Organizing the day into 3 parts works best. Morning routine, daytime routine and nighttime routine. Training people to look after your mother is the most important thing. They need to be trained in safety and then specific-needs or requests from your mom... i.e... communication and feeding. The people who spend time with your mom need to know about ALS and how your mom wishes to be cared for and what her decisions are regarding her life. Be firm with caregivers about your mom's decisions.. i.e. calling 911 or emergency situations.

Caregiver burn-out is something to watch for. It will get very tough sometimes. Take breaks.. try to keep things balanced as best you can. Sometimes.. your mom might not get everything she wants when she wants them and that will just have to do for the moment. We are of no use to our loved ones if we are hurting ourselves or our other relationships in our life. Make time for kids or loved ones. ALS can consume everything in it's path. Make plans now.. ALS can suddenly run really fast. Try to have plans put in place before you need them. Anyone who has been here will tell you.. by the time you get what you need... you need something else.

I have no regrets, my mum died in her own bed surrounded by many friends and all of her family. We all spent 7 nights and 8 days together... crying, laughing... loving. They were the most beautiful and the most painful days of my life. I could not have done it without the care team.

I would be happy to answer any of your specific questions regarding a care team.
 

sharonca

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I ordered my Share the Care book from Barnes and Noble online - 20 bucks. Great book.

Sharonca
 

CindyM

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You should write a book, Paula-Jane! I like your ideas a lot.
 

paula-jane

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Thanks Cindy...
I truly want to help out in any way I can. I know I have much to offer and I look at the posts here now; new, scared members and I remember as if it was yesterday that I was one of them.. now, I just want to help, I hope through my experience with ALS that I can offer support or suggestions to others.
 

fiddleplayer51

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Paula-Jane you are a tower of strength! Thank you so much for your many ideas and for your desire to help others. You're truly an inspiration having been through this yourself with your loved one, yet willing and desiring to assist others along this painful and devastating road. I know that what you wrote above in your post will help many people in their daily round as they help their suffering loved one. Many thanks and all the best,
Jane
 

paula-jane

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Thanks Jane,

I have my moments where I'm not so strong... ALS teaches us about digging really, really deep... beyond our own comfort zone. I've done things for my mum that I NEVER thought I'd have to do for anyone other than my own babies. It's just one of those things that reminds you of how precious our bodies are. I know that I have to live through this and move forward. Cindy!... we sometimes forget what you are dealing with besides your own symptoms. You are a wonderful daughter and I can imagine the pain you must be feeling as you nurse your mum through the final days/months of her life. I'm thinking of you Cindy...
 

CindyM

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Thanks Paula-Jane. I needed that today.
 
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