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cheerleader

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4tloml, even if you sell and buy a home on one level, you will probably need to do some remodeling. Ramps, doors too narrow for wheelchair access, not enough turn around space in bathrooms for the wheelchair, roll in shower needed rather than a bathtub, etc. wish we could have foreseen all the "what ifs" at the beginning but----- just take it a step at a time. You will handle whatever comes, cause you don't have a choice! Good luck.
 

applesos

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It certainly does!
My PALS doesn't want to discuss what may come. He told me never to say the word "wheelchair" in his presence again. Regardless, I continue to try to plan on my own about what we may need to do.
One of my worries about renovating the house is that once we do that, my house value may drop quite a bit because of the various adaptations we made. As a future widow, this is a concern. My children want us to sell our house now, as is, and buy a bigger home to share with them (they would also sell their home and move) so that we could have more help at hand and this house's value would be realized.
An idea I had was to totally enclose our patio which looks onto the backyard garden and air-condition it. This room already connects with a bathroom, the living room, and our master bedroom. I feel that this would give my PALS a large "suite" that is easily accessible to the main rooms in our house and I could extend the existing bathroom to include a "wet room" that would connect to the "suite". This room also has a door to the outside which would make it easy for him to get outside for a ride on a motorized wheelchair or to have friends come to visit. The thing I like best about this patio renovation idea is that it leaves the majority of the house "as is", so that we'd just have to clear out some furniture to clear a path through the living room to the dining area and kitchen.
Comments?
 

affected

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It must be hard to not be able to discuss with your husband. I hope it is just a denial stage that he will come out of, maybe it will just take a little time.

Having said that, my husband experienced a lot of denial, and as a result he had many falls, 2 of them serious. That concerned me when I read that he says never say 'wheelchair'. Preventing falls is just so important, do not underestimate the progression and issues a fall can cause.

Now, I love the patio enclosing reno idea! Only you can make the best decision, but selling and buying can be stressful. Your kids are so wonderful that they are prepared to do the same and work with you on this. It does make that something worth considering too as it would give you so much support.
 

cheerleader

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Applesos, what a great idea! An added advantage is the chaos of remodeling will not impact you as much being a patio room. And my pals is very adverse to chaos around him! We have just completed getting bids on remodeling and I have some Good news for you! After working with a designer, adapted rooms can STILL be beautiful! We were concerned as well about lessening the value of our home, but that doesn't have to be the case. If you want to private message me, will share some ideas our designer suggested that were great! Donna
 

dalvin

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One concern I would have about all the kids moving, even with a much bigger house, is that too many people around at one time is very tiring. Also if there are small kids involved that adds a lot of stress. As much as I love my grandkids, if they were around 24/7 my nerves would be shot.
 

cheerleader

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Dalvin, ditto that! As much as hubby loves socializing, it is exhausting. Privacy, a quiet environment are a real plus when energy is an issue and it IS!
 

4tloml

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applesos, these are some of my concerns as well. My husband hasn't heard the words, "you definitely have ALS," from the ALS specialist yet (our sons and I anticipate that changing Nov. 6th), so he's not wanting to discuss any preparations. (Can't blame him. Was told once and then thought we'd missed a bullet.)

But it sounds like you have a really great space available to customize according to your husband's needs. My concern here is how the stress of preparing to sell, and the process of selling, buying again and moving, may move the ALS along even faster.

Applesos, keep us posted on how it's going. I really appreciate your starting this conversation and all the reflections and advice everyone has offered here.
 

MaxEidswick

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>My children want us to sell our house now, as is, and buy a bigger home to share with them (they would also sell their home and move) so that we could have more help at hand and this house's value would be realized.

sorry if I missed it, but is he a veteran?
 

SMP51

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Messages
675
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CALS
Diagnosis
11/2010
Country
US
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FL
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Fort Walton Beach
My Steve didn't want to renovate our bathroom, and when we did it he fought it. Said we didn't need it yet, we just needed to make some adjustments like a stool in the tub to sit on and a portable step so he could get in the tub..... OMG! sure, like that would be safe!
I won telling him that even if he didn't get any worse neither of us were getting any younger! he couldn't argue that now could he.
We "didn't need" the wheelchair accessable van when we got it either. But when I had to load and unload a wheelchair into the trunk of the car in a down pour after recently discussing with him the need for one because we went no where because tranfers were getting to be to much for him...I told him HE may not need one but I WANTED one! we had the van by the weeks end.
sometimes you got to take the bull by the horns
 

dianepage

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Arlington
Hi Caregivers,
My PALS died last December. We did a lot of things right and a lot of things wrong (this on the job training really sucks, doesn't it?) so I thought I would share:
--We did put on a ground floor bed & bath addition, which we had planned to do once we got old and feeble but had to accelerate. The difference between the the cost of construction and the increase in value to your house, if you own, is a tax-deductible medical expense.
--Rely on your ALS Association. We weren't too keen on the support group meetings, but they loaned us an electric wheelchair while we were waiting for the insurance one. That electric wheelchair allowed my PALS to get himself in and out the bathroom, go to the local park, and he even slept in it. We tried the hospital bed but he was a big guy. His feet stuck out over the end and he got trapped in it like a hotdog in a bun.
--We took a family vacation with adult kids and a couples vacation while we still could. The just-us-vacation involved a rented mobile scooter in a foreign country and was fun, sad, funny, terrifying and totally worth it.
--Get the PEG now, you're going to need it anyway. My PALS respiratory status declined rapidly as he developed difficulty swallowing. We were being treated at an accredited ALS center at a major teaching hospital, and he was monitored only every 3 months. By the time the ALS center docs recommended the PEG, we decided to do it and they wrote the order, the radiology department of the same major teaching hospital refused to do it as "too risky." (Too risky as compared to what? Starving to death? MY RN SIL said they were afraid he might have respiratory failure and die, which would be a "bad outcome" for them.) We had to find another provider at another hospital real quick. Stressful.
--See above -- don't assume because you are at an ALS center, that you don't still have to be a vigilant advocate. I can't begin to list everything that fell through the cracks. You are looking for medical care. They are looking for research subjects. Not that they weren't dedicated people, but they had a protocol they followed and it wasn't personally individualized care, as least not our experience. E.g., the nutritionist provided some handouts but not an individualized weight maintenance plan. The PT provided some literature but didn't actually do any PT, we had to get that elsewhere.
-- If you have the resources, try to buy and control some of your own equipment. My PALS had a bi-pap prescribed for respiratory support. So far, so good. We had to physically go to heck and beyond to pick it up. Insurance only covered one mask. He had a full beard so it didn't work, we bought our own different style. A part broke and it would have take 8-10 business days to replace. How was he supposed to breathe until then? We bought our own and used the insurance one as back up when it finally arrived. We had respiratory problems over a weekend and the doc by phone suggested increasing the bi-pap pressure. Only the (closed) respiratory therapist office had the key to do that. It's so easy for your PALS to just hop in the car and go somewhere -- not! We had a PALS friend who accessed and adjusted his own bi-pap innards. Good idea. P.S. Get your own CO2 pulse oximeter. Get your own peak flow monitor to track respiratory volume between appointments.
-- Try to find a brave, action-oriented friend to step in and organize all the people who want to help. You will not have the time to organize all those "just call me if you need anything" friends yourself.
-- You will have a number of difficult decisions which are hard to even talk about, let alone make. Get a PEG? Live longer with a trach tube? Stop trying to go out and do normal things so you qualify as "homebound" and can get Medicare support? Stop trying to live and start planning to die so you can get hospice care? Best advice I got -- don't start hospice care until you get every piece of durable medical equipment and every service you might need from health insurance. Some may be un-gettable after you take the hospice step.
-- You are doing the best you can. You will be visited by the "coulda, shoulda, woulda" monsters. Try not to feed them.
 

cheerleader

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Diane, thank you for all the tips, learned the hard way! Sorry for your loss, but appreciate your stepping forward to help the rest of us!
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
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01/2007
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FL
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orlando
Diane-- you sound like you were an awesome cals. I hope you have much happiness in the future--you so deserve it


























1
 

Santa joe

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Joined
Oct 14, 2013
Messages
637
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
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South Carolina
City
Goose Creek
Diane, you nailed it girl! Well done.

Debbie
 

4tloml

Senior member
Joined
Sep 15, 2014
Messages
576
Reason
CALS
Diagnosis
04/2013
Country
US
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CA
City
Suburban
Diane, thank you for all the "heads up," hindsight and planning advice. This is one of the lists that is going into The Binder. Sounds like you really learned to stay ahead of the game.

It's so kind of you, and all of you CALS who are so far down the road, to pass along your hard-earned wisdom. With the wealth of information on this forum, there shouldn't be much that takes us by total surprise--except for the timing--that just seems so individual and unpredictable. Now we are learners; when it comes our time to share, I hope we have such generous spirits too.
 

LoveMyKids

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Aug 27, 2014
Messages
157
Reason
CALS
Country
US
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Texas
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SomewhereNice
It certainly does!
My PALS doesn't want to discuss what may come. He told me never to say the word "wheelchair" in his presence again. Regardless, I continue to try to plan on my own about what we may need to do.

I always thinking researching is good so you know what your options are.

However, may I share some of what I have experienced with my PALS? Usually changes that PALS have to make are depressing. The changes reflect that they are declining in some way and they are losing the ability to do the things that they love. My PALS is highly intelligent and very attuned to her body. She is being safe but is making changes when she is emotionally ready. I think people just look at the physical changes and don't realize what an emotional toll it takes for a PALS to accept the next "aid". Some PALS see it as failure, proof that they can no longer do something and are really sick.

I am my PALS caregiver. I want to keep her physically safe but I also want to protect her peace of mind. Yes, there are times when I want to go buy her something that will make her life easier. But if her mind isn't ready for the change, then it will just cause stress and unhappiness.

I don't think PALS are trying to be difficult. I think they are trying to stay positive and keep their fears at bay when they refuse to discuss change. They have to know that they have fought and not just given up.
 
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