What would you do?

[joelc]

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]

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]

That sounds like a wonderful opportunity to me.

Mike

[lunarruna]

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]

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]

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.

[joelc]

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]

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]

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]

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

[CindyM]

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

[Saubier]

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]

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]

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]

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

[paula B]

Joel did u move? Did u get trach? Hows it going?

paulab

[ChitownGal29]

Greetings from Chicago........I say move closer to a city where you have the "best" medical team and the "best" technological medical equipment. As your disease progresses, it may be a blessing for you to be closer to your children. What a wonderful blessing -- your son is married to a R.N. She knows a lot about the medical profession as well as many illnesses (or diseases). It is smart to be living with people who love, support, and encourage you! Please let us know how you are doing, and how your recovery is coming along (after your surgery). Sell your home in the country, and say good-bye to your rural roots. Remember, you are not leaving your "old" life behind, but rather, starting a whole new life. It is the beginning for an exciting time in your life. Change can be very good and positive. A new living environment will refresh and revive your Spirit!

[joelc]

Hello everyone!

Thanks for your interest in what we are doing! The first house we went to see did not work out so we continued searching until we found another. We have not seen this one because we had to come home before discovering it. Our kids looked at it and sent us pictures. We have bought it and take possession Aug 10th. I guess we will see it in a few weeks for the first time. It has 2 houses on 4 acres. The houses are private from each other and about 30 paces apart.
The kids have sold their house - it was listed 3 days. We have had a few people through ours but are waiting for an offer. We pray it comes soon so we can make plans.

I was blessed with a plateau on my breathing - seems like the moment I started to use the bipap it gave enough rest to my diaphragm it held better throughout the day. I have met with the respiratory surgeon who will do the trache when it needs to happen but no date has been set yet. Thankfully I have been granted some time to get used to the whole thing. I am scheduled to get a PEG on July 17th.

We are starting to get excited about moving and being closer to 3 of our kids. Never wanted to live close to a large centre so never considered moving near one. Thankfully the place we purchased is private and heavily treed, does not feel like we are close to a big city.

Thanks you for your encouragement! That's what I love about this forum!!
Blessings on all!

[CindyM]

I agree-There are great folks here and everyone tries to look out for one another. Good luck with you move! Cindy

[Beebe]

Hello, So glad to hear you found something or "The Kids" did. What would we do without them??? Sounds like a perfect set up. Keep us updated. My Best to you, Beebe

[hboyajian]

Wonderful! I hope you are able to move to your new home soon.

[joelc]

Further update,

We take possession of our new house Aug 10th. Our son and daughter-in-law sold their house after being listed only 3 days. They will be moving in on Aug 10th.
We sold ours and have to be out Sept 15th, but will move when convenient and likely before that time. Things are coming together!

We really struggled with the thought of moving and leaving friends behind. I did not think it was wise to try to start over again, in a new community, with ALS in my life. But, our friends seem to have dried up and disappeared anyway so my concerns were unfounded. At a time when it would be nice to have friends it seems like we are all alone - it is amazing how people run away from dealing with someone who has ALS.

So, we will not be any worse off (friends wise) in another area. At least we have our kids and grandkids to keep us busy. It might be easier to make friends with them starting off knowing I have ALS - at least this way if they do become friends they should remain.

How have others dealt with this?

[liz]

Wow, Joel! It's great how fast your housing situation worked out.

Re: those social setbacks.... we've actually been very cautious about who we tell of my diagnosis. While I "outed myself" at work very early (as in the same day of my diagnosis), we have not said much to neighbors or parents of our kids' friends. With them. If people ask, we stick with a generic sort of explanation about me having neurological problems. It's bad enough people pull away the way that you describe, but we don't want our kids to get caught up in that dynamic so we don't share that information with other folks.

One woman whose kids go the same schools as mine has severe problems with spasticity and slurred speech. She has told me that other kids parents tend to not let their kids come over to play with her kids and that teachers don't always take her seriously as a parent. I really worry that my kids will experience the same isolation that this lady's kids have because of our medical conditions. Our thinking is the longer we put this off the older our kids will be and hopefully the better able to cope with the situation when it becomes unavoidable.

In situations where it's just me that will be affected, I have no problem telling people what's happening to me. But in situations where our kids will be affected, we've been very protective. It's really too bad we have to worry about things like this.

Liz

[Al]

Hi Joel. We moved to a new community 2 years ago and in with the daughter and son in law too. The neighbours were told first off that I had ALS and that was why I was walking like a penguin and not able to do staris etc and why the renovations were being done. The new neighbours are some of the best people we have lived near in our 37 years of marriage. They are helpful, supportive and I don't think you'll have a problem at all.
AL.

[joelc]

Here I am again, we have the movers starting to pack tomorrow. It has been a long stressful battle to get this far. There are some things the movers will not take so we have made several trips, in the last 2 months, down to our new place. Also had a PEG installed.....it has been too busy! My breathing is getting progressively worse too which adds to the frustration.

It has been hard saying goodbye to friends and family. My mom is 90 and has been living with us for the last 7 years, now she is with my brother. Once we leave we may never see her again.

So, this Friday we are finally moving......next post might be from Abbotsford BC.

Love you all!

[CindyM]

Hi Joel- kind of a bittersweet moment, isn't it? On the one hand something new and exiciting is going on but it must be hard to leave your Mom and family and friends. I hate how this disease makes everybody adjust all the time! Good luck with the move. We are here for you! Cindy

[liz]

I find this whole sense that I'm doing certain things and seeing certain people for the last time is a bit disorienting.

Joel - Good luck with your move. I hope you settle in quickly and try to keep rested. - Liz

[joelc]

Here I am again. I have not had much time lately to frequent this forum like I want. We got moved 1 month ago but our place was destroyed by the previous owner before we took possession. After much consideration we decided not to seek legal help. They charge soooo much we decided we could rebuild for what they charge.

So........the house is gutted, we (our kids) are slowly putting it back together but it is taking a long time, it will still be a few months before we get moved in. All our belongings are in storage and we wait. It is not all bad....we get to put it back together to suit us now which is nice. We don't have to compromise now. We are also going to add a handicapped bedroom and bathroom. It will be great when done.

Thank you all for careing! I look forward to being done and settled.....then I can spend more time here keeping up with things!

Blessings to all!!!!

[liz]

Sorry to hear about the added hurdles, Joel. At least you're able to look on the bright side. :)

[CindyM]

Seems terribly unfair, Joel. On top of the big move and having to turn your life upside down, too. What is wrong with some people that they could cause so much trouble? :evil:

Good thing you see the roses for the thorns! My best to you as you continue the repairs and remodeling.