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joelc

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I am currently preparing for a trach, not sure how long I can put it off. We are praying for a plateau so we can get used to the idea.
We have appointments May 15th & 17th with the Respiratory surgeon who will be doing the trach and then with the ALS Clinic.
So.......we are rethinking our present living situation and would love everyones feedback and recommendations.

Here is what we are considering;
I always said I would not vent, but was expecting to be in a wheelchair and immobile at that time. Well, I am not even close to needing a wheelchair yet and my kids are pushing me to agree to get one. So, 3 out of our 4 kids live somewhere else. They live close to Vancouver where the clinic is and all the doctors I need to see are and we live in a rural area 8 hour drive away. They are pushing us to sell out and move there where they can help. Our oldest son and his wife, who is an RN, want us to buy a house together so they can be a support to us. She is trained, and deals with people who have vents and pegs.

They want a house with more property so want us both to sell our homes and together buy one on acreage.

I don't like the idea of moving, but we do live a bit isolated and I don't want my wife to have to look after me all alone so we are considering this. My son has already found some properties that would work.

I value your thoughts and counsel. Thanks in advance!
 

CindyM

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After reading the posts of people who struggle alone to take care of their PALS, I'd guess you are on the right track. I wonder what the others will say...Cindy
 

quadbliss

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That sounds like a wonderful opportunity to me.

Mike
 

lunarruna

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Joel,
We live kind of remote in NE Montana. My husband wanst going to vent, but then this winter he had a period of reconsideration and we looked into it a bit more. Well, the two regional hospitals with RTs, both about 70 miles from us, said NO, they would not work with us and provide a vent. I was pretty shocked because we have gotten alot of equipment through them and we have our Bipap from them, which is really a life support as Shannon would have died in October 06 without it. These two hospitals have never had anyone with a vent (go figure....) and feel we are too far away for the liability of a vent. Well, our local Home Health was willing to work on it with us and they were surprised too.
Long story short, for many reasons Shannon has decided not vent and so we havent looked into it further (I am not one to take no for an answer). Anyway, check into it because you may find that it wont work out anyway there at Slocan Lake. Glad you have such a wonderful family and possibilities. Good Luck with your plans...
Beth
 

Paty

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Joel

Joel being someone who's taking care of my husband by myself (24/7) , I agree with Cindy YOU ARE ON THE RIGHT TRACK.

PATY
HUSBAND'S CAREGIVER DX 10/17/05
BAJA CALIFORNIA, MEXICO
 

Al

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Hey joel. 3 1/2 years ago my wife and I moved in and built a basement apartment in our daughter and son in laws place. It worked great for a while until I started having trouble with the stairs. The kids wanted some property and found this place with 1.6 acres and a bungalow with walk out basement. We built another apt. this time with roll in shower, wide doors and a 30 x 40 patio with the lift that I am sure you have seen the pics of. It is great having the smallest granddaughter upstairs so we see her every day. My daughter is an RN- and ACP Paramedic which will help eventually. Also if and when I am gone I know Lee won't be alone. We get along great with the kids and each have our own separate space and it works great for us. I'd recommend you do it. Just be careful if they get you to mow the lawn.
 
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joelc

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Thank you all for your input and good thoughts.
You will never know how much I appreciate them!

Al, what you have done sounds exactly like what we are exploring. I am so glad it is working out for you.

Beth, I feel for your situation - I did find the same response in my area as well. We were told they no longer do trachs and my life would have to be spent with a bipap. After doing more research I found out I could force them to do one but I would then be placed in a special care home - I could not come home with one. I hate being told I can't do something so looked into it further, I finally found a non-profit agency that supplies respiratory equipment at no charge. They are all licensed RT's and one came right into our home. They said there are about 400 people they look after in rural BC who are on a vent and there is no reason my wife cannot look after me.
Bottom Line - I have to go elsewhere for support and to get the surgery done, but no one can prevent me from coming back home after. These wonderful people were horrified at what I had been told. Since my support is 500 miles away, we thought it best to move closer. I also would like to spend more time with my children and grandchildren.

Thanks again!

Joel
 

Beebe

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Hi Joel

Hi Joel, I think it's a great idea. We live about 5 minutes from Stephanie and Jack and have been talking about doing something together. It's a help to know that someone is always close by. The extra help is always a welcome. My Best to you, Beebe
 

joelc

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Well, looks like things are progressing quite fast - our son just called and said they put an offer on a house they feel is perfect. Sounds like the offer has been accepted, subject to my wife and my viewing and approval. WOW.

There are two houses on 1 acre. They are about 10' away with a level walkway between. Seems perfect. We will be going there May 11th and will view them at that time.

We truly do have the most wonderful caring children. God has blessed us beyond measure!

Thank you ALL for your feedback and encouraging counsel!

I LOVE you all!
 

Frizzel

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Good for you guys!

I LOVE how this is all coming together for your families. What a root system of support!
 

CindyM

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Hey Joel-It takes great parents to raise wonderful and caring children. Congratulations. CIndy
 

Saubier

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Joel,

It doesn't matter much where you live or what you do there. What matters is your family and that you treat each other with love and consideration. Sounds like you are doing the right thing.

Pappy.
 

joelc

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Country
CA
State
BC
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Abbotsford
Once again I want to thank all of you for taking the time to respond and for many kind words! It has really helped us (my fantastic wife & I) come to grips with this issue.
Many times over the years we have been so touched by the love our children have shown us and here we are again.

By way of an update......we signed an offer for a house and will be traveling down on Friday to view it and make a final decision. If we like it, I guess we will be putting our house up for sale and moving as soon as it is sold. We will be there all next week, and weekend, as I have several doctors appointments and we want to spend time with our kids!
Has anyone perfected a way to support your body while traveling? With muscles weakening it does not take too long before I start to hurt from trying to brace myself.
The joys of living in a mountainous region with very twisty roads.
 

joelc

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Update,

We have decided to move....our son is putting an offer on a place and a couple are coming to look at our house tomorrow afternoon. They found out we might be moving and called us....we have not even listed it for sale yet.

Those that believe in prayer...please pray that everything goes smoothly and if this is what is supposed to happen it will go through without a hitch.

God Bless you all.
 

CindyM

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Hi Joel- sounds like everything is workingout for you and your family! I love it when things fall together. An offer on a house that hasn't even ben listed is good Karma indeed! Cindy
 
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