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Narrowminded

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Hi All,

Just wanted to introduce myself. I was thilled to find this forum. I have been on others, but this is the first I've found directed at the CALS. My Husband, Brian, was dx in July of 07. He actually started with symptoms in the winter of 04-05. He started limping. He wouldn't go get it checked because "He didn't have time for that". We own a very small manufacturing company and his first priority was always the business, over family and everything. Fast forward to the summer of 05. We had our son on campus to set his first semester schedule. He and I noticed that DH's leg was swollen on top of the limp. Finally convinced him to see a Dr about that.

He would put off scheduling follow ups to the inital tests, and even took a year off of searching for a reason. Then finally our neighbor who was a physician convinced him to see his second Neuro. The first just did some MRI's and said he didn't know what was going on. The second got him started with PT and did his second EMG/NCV. After 6 mo, he conviced DH to go to our 3rd Neuro who finally made the DX. Our daughter had just turned 13, and DS was now in his Jr year of college.

At first DH refused to tell anyone and refused to use a cane. However, after a particualarly nasty fall with the cane one evening, he easily moved to the walker then the wheelchair. In Aug of 2010, he was trached and vented. At that point he quit going into the office and DS took over his position there.

For the first 9 months of his vent, I took care of him single handedly. He mostly stayed in bed, but would take rides around the neighborhood in his wheelchair. However, we lived on the high side of the street and getting him down to the street level was a real treat in his chair. We had put in a stair chair years before which he reluctantly used. Then it became impossible for him to use that as he became weaker.

The year DD graduated from HS, we moved to a level entry townhome with a first floor master. Through it all I've continued to work, I've done the books for the business. At first from home, late at night and on the weekends. Then after that first 9 months with the trach I was able to get in some help. Fortunately our health insurance covered it.

Today, DH basically will not get out of bed at all. If he needs to go to the hospital, he has to go by ambulance. He hasn't been to clinic in about 1.5 years. And this past 6 months he lost the ability to talk. He now keeps the cuff up on his trach so we have to read lips and use a letter board. He is dragging his feet on learning to use the Tobii. Hopefully we will have someone here soon, to teach him better.

Other than his ALS, his other health is good. However, all of this has taken it's tole. In the past 4 months or so, sleeping has become precarious at best. It makes it hard to get up and go to work. The help I do have is just during the day so I can go to work. The rest of the time, it's just me. When my DD is home from college, she helps too.

DS got married 2 years ago, so isn't around as much and DD has her life as well. I do my best to try and keep their life normal. It will never be normal like others, but I do my best.

I was reading through a thread on here about final arrangements. I had to do those myself. Actually I did those the spring of 10 before his trach. He refused to go with me. That was one of the hardest things I've ever done, but I did mine at the same time. I wanted to save my kids from having to deal with all of it. They will still have some, but not everything. At that point I was convinced he'd be gone within the year and had he not been vented, he would have.

Sometimes I wonder about the vent. It has allowed him to see his children grow up and has created a very close bond between him and our daughter that wasn't there before because business always came first. However, as the years march on, I am definitely wearing out.

I came searching for a forum where I'd find others who would understand and maybe have some suggestions. DH does not get that the stress is killing me. He's always been kind of selfish, even prior to the disease and it has just made him more so. I understand he cannot do anything for himself as the only thing he can move is his eyes and lips. He can slightly shake his head no. However, he has absolutely no empathy for my lack of sleep or when I'm ill or whatever.

On top of that, work has been extemely slow so, I'm terribly stressed there as well. I'd love to sell the business, but that's a double edged sword. First, I have to get it right side up, then if I do sell, our insurance would change and I wouldn't have any help available and I would then not be able to work. I don't know how we would be able to make it from the little it he gets from Soc. Sec. I'm too young at 54 to retire, so I'd have to buy insurance for myself. With Medicare only covering 80% of things, I don't think we could afford his vent, let alone all the supplies that go with it.

I've just really been struggling as of late. I'm open to any suggestions. Maybe there is something I'm not aware of that is out there. Most things I've looked into, we are just over the threshold money wise. I'm kind of in that rock and hard place position. Couple of $ too much for help, but not nearly close to enough to afford anything on my own.

Thanks for listening and please know I'm here too to listen to others. This disease stinks.

sue
 

affected

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wow what a story!

Welcome, come on in, sit down and let me pour you a great big drink girl.

My husband Chris was the total opposite, bulbar onset, rapid progression with FTD, gone 11 months after diagnosis.

Others may have more suggestions but I will note that we have rarely had any CALS here that have cared for vents long term. I know that only around 10% of PALS elect for a vent, and I don't know the % of them that are still gone for a variety of reasons within that first 12 months.

So I guess you are in an even more rare situation.

Thanks for introducing yourself, this is somewhere that will be just for you, and it seems to me you really need that just now!
 

Narrowminded

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Thanks for the warm welcome Tillie. I'm sorry you lost Chris so quickly. That had to be very difficult for you.

DH has had pneumonia about 4x now. One time in particular, he went septic. Prior to that setting in, he was going for a tests, they always ask, if his heart stops do we restart. I asked him if he wanted it restarted and he said "why wouldn't I?" Can you say stubborn?? So when the sepsis set in, I asked the Dr the usual treatment, he told me. I said ok, lets give it a try with the water load first, if that shows that it's working we will go full court press, if not then we will keep him comfortable. Horrible place to be in, but I knew from my question to him, he would want us to try. After and kind of while talking to the Dr, I prayed that the God's will would prevail. Well, he's still here a year and a half later and another bout of pneumonia about 6 months ago. I say he's my cat with 9 lives. :)

Not sure why it is different for everyone.

Sue
 

Atsugi

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Sue, you and Brian and DD, DS have been on one heck of a long and arduous journey. I'm glad to see that your children are able to live normal lives--that's what we always wanted for them, isn't it? So congratulations on facing the monster and still giving your kids the best they can get from life. Our own kids were 13 and 15 when our PALS went through ALS, and the experience gave our kids a lot of maturity.

The vent is so...permanent. And the choice is so personal. I could never vent. In my own uneducated and selfish view, the vent with ALS is prolonging torture. But others swear by it and are so happy they've chosen to vent. My wife chose no tubes of any kind. She lasted about 10 months total from first symptom.

There are plenty of others here who can relate to your position. I welcome you and wish for you all the best fortune.
 

Narrowminded

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Hi Mike,

Thanks for the welcome. That was fast for your wife. I'm really sorry to hear how quickly she went. It's true, the kids grow up quick and have a maturity level way past their ages. Try as we might to keep their lives normal, it still affects them in many ways.

Yes the vent does seem permanent. DH opted for that direction and I supported his decision. I still don't think any of us thought we'd still be dealing with things this long, vent or no vent. DS has taken on a large task running the business, that wasn't his chosen field. I know he figured he'd help his Dad for a year or so and then Dad wouldn't be there, we'd sell the business and he'd go back for grad work or whatever persuing his passion. Well, almost 7 years later, he is still at the company. Both he, his wife and my DD all went for Exercise Science. His goal was to train with a professional hockey team. Starting of course at the collegiate level. His wife, is taking further pre-reqs to be a PA and my DD will be persuing PT. My prayer for my DS is that he can get back to his dream. I tell him all the time, don't feel pressured to stay at the business if you're not happy doing that. He tells me he wants to get the ship righted so that I can sell it and have a nice retirement. My kids are such a blessing, especially after the quick growing up they had to do.

After seeing what my DH has been through, and knowing what the caregiver(s) go through, I'm not sure I'd vent either.

Sue
 

pittsburghgal

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Hi Sue,

I want to welcome you here and urge you to ask any questions you may have or unload your emotions when you need to. There are some great people here who have helped me tremendously.

I really can relate to what you describe about your husband and his being on a ventilator. When my husband first saw the pulmonologist after his official diagnosis of ALS, the doctor asked him if he would want to have a trach and be on a ventilator if it became necessary. My husband said he didn't know and would have to think about it. I was surprised because if I was the one with ALS, I definitely would not want this.

Last summer my husband ended up in the ICU with bilateral brain bleeds from falls. At the time of admission he was asked if he would want CPR and he said yes. The next day he was almost comatose and responding only to pain. The doctor asked me if he should be intubated if necessary and I said yes, based on his decision to have CPR. He progressed to respiratory failure and was trached and on a ventilator. He spent 10 weeks in the hospital but did make it home. I am his sole caregiver and had to retire to care for him. Right now he is using the Trilogy in bipap mode but I know he will eventually need to use it as a ventilator. This seems to be what he wants and I truly can't understand why he chooses this since he has progressed tremendously since this hospitalization. I feel like I have to honor his wishes but I honestly don't know if I could keep caring for him 24/7 when he becomes ventilator dependent.I have no family who live near by except for a daughter who is going through physical and emotional problems in response to her dad's disease. I have tried to discuss this with him and told him that we may have to make the decision to go to a nursing home when he is ventilator dependent and if I am unable to care for him at home. He said nothing when I told him this.
 

Narrowminded

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Pittsburgh gal - if nothing else you are in a good town for help. If you didn't notice, I too am in Pgh.

DH uses the trilogy and actually if you are caring for the trach while using bi-pap, nothing will change when the setting on the machine do. Care for the trach is no different. You may want to get a fisher-paykel humidifier to add to the loop if he doesn't already have one. It moistens the air that he breaths. The machine still does all the work. It will alarm if it disconnects or detects something unusual. Is your DH talking or do they have the cuff up on his trach? As i mentioned above, DH went for 5 years on the vent and talking before that needed to change. When DH was placed on the vent, we did the PEG tube at the same time. Best decision we ever made. I don't know your full story, so not sure if your DH has a PEG or not.

I understand the rough time you had when he had the brain bleeds. Having to tell the staff that even though life is already tough, your DH wanted to keep on keeping on. It sounds as though he is still mobile and that is good. Changing the settings to vent will not change that. He can still go out and about. A little planning with the batteries and take the power cord just in case. Heck my DH took off one day when I was out doing mulch. I could not find him and was freaking out because what if something happened. He was in his power chair. Found him up at the neighbors talking. Fortunately it was the couple who the husband is a physician and the wife a nurse. Had something slipped, they would have known what to do, but it was scary for a bit. It's just been in the last year that he's been mostly bed bound.

My DD and DS and DDIL all have the ability to care for him. They understand the vent and can do his trach care, bath etc. Even his Mom and Dad would care for him with the vent on occasion until it became too much for them. I think the most stressful part of being sole care giver is not getting breaks. However as I mentioned above, what you are doing now won't get worse when they change the settings. If his condition changes to less mobile, that is a seperate issue from the vent.

Have you been able to make it to the ALS Caregivers Weekend at Seven Springs? I've gone since the inception about 5-6 years ago now. It's worth it for you to go if you can. The Assoc will pay for caregivers so you can go.

Sue
 

pittsburghgal

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Hi fellow Pittsburgher! I did not read your hometown before I replied to your post.

Thanks for the information about the ventilator use. The only thing I am worried about is not being able to leave him alone at all when he is on the ventilator. Now, i leave for rare very short trips to the store to buy food and he is fine. We do not have a vehicle to transport him in the power chair. I have been using a small collapsible wheelchair to take him out occasionally but this is getting very difficult to get him out of this chair as his legs and trunk are getting weak. He is a tall guy and this chair is not comfortable for him for any length of time.

Before his hospitalization last June he had very slow progression and was able to walk, eat, feed himself and talk normally. He did have weakness in his arms. I was hoping that he would leave the hospital the same way but sadly, this did not happen. He can not walk and his speech is slow and difficult to understand. He takes nothing by mouth and has a PEG. He has no use of his arms.

Sharon
 

pittsburghgal

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Sue,

I have not been to the Caregiver's Weekend, although I would like to go. I mentioned it to my husband last year and he had a look of panic that I would leave him. I just couldn't do it to him after the hell he had been through in the hospital for 10 weeks.

Sharon
 

Narrowminded

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Sharon,

I understand the tall guy. DH is 6'2, I'm 5'1. The struggle of helping them transfer is real. We too used a transport chair for a while until DH's neck became too weak, then he had to have his power chair. Up until last summer, even though he had very limited movement in his arms, like next to nothing, he was able to use the joystick on his chair. Now he cannot.

You are correct you cannot leave him once he is changed over to the vent settings and it is breathing for him. However, I undestand you could call Access. I've never used them as DH worked as long as possible, so we were able to get a van. The Office of Vocational Rehab paid for the modifications. DH drove it at first. It still wasn't inexpensive and if he had not still be working it would not have happened. However, Keystone Coach Works on 88 near South Park does have a selection of used vans that are already modified and some are fairly affordable. In the east Mobility Works has some too, although when we were there, they didn't have near what Keystone did. My understanding though is Access could take you to the store and back wtih DH as their vans are wheelchair accessible.

I will note that each time DH has been in the hospital, starting with getting the trach and PEG, he lost ground. I pray your DH can stay out of the hospital, home is the best place if possible.

Sue
 

Narrowminded

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You were posting about the weekend as I was posting. What you need to tell DH is that for you to be a better caregiver, you need this time away. Since my kids are so good to us, and my insurance at the moment will cover some nurses, I was able to get away for a week to visit friends in FL. DH wasn't happy about the pending trip, but I told him if I didn't think he was in good hands, I would not go and that I needed to go because I was losing it and I had to recharge so I could care for him. They will give you that look and if it was close to him being in the hospital, I totally get it, but you need to do it this year, barring unforeseen circumstances. The women and a few men who attend are great. I have made some good friends and everyone "gets" you. Even if all of their stories are a bit different. It truely is a worthwhile event.

sue
 
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