Old 04-27-2017, 02:28 PM #91 (permalink)
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Default Re: Very concerned end is near

Really amazing. No matter how we try to tell people we can't predict what will happen with ALS, we don't even realise how true that is.

How far away is your girlfriend's home? A visit with her may be exactly what you need to rest, but I would personally want to be able to get back pretty quickly.

I hope you are able to relax a little and recharge, what an experience both physically and emotionally!
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Old 04-28-2017, 02:56 PM #92 (permalink)
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Default Re: Very concerned end is near

I'm still holding on to your hand Sue, how are you and Brian doing?
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Old 04-28-2017, 03:44 PM #93 (permalink)
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Default Re: Very concerned end is near

Hi Everyone,

Well, my cat found another life. He is doing well. Still tired, but to be expected. I had a nurse today, from the ALSA grant. That had already been planned, and was awesome.

I had to get groceries after not shopping for close to 2 weeks. It felt good to get out of the house. I also picked up a few clothing items to add to the couple my DD bought for me the other day. I needed something, as everything is too big.

My GF lives in FL, so yes it's a plane ride. As of this moment I am planning on going. I already have the nurse scheduled and bought my ticket last month. I did buy trip insurance, so even if I need to fly back quickly, that should cover. However, at the moment, I don't have a good reason to use that insurance. And after this roller coaster I need a break. Bascially why I needed some clothes as well. Hotter there than here and no shorts would not cut it. Staying around the house I can get away with stuff that too big, but not away from the house.

This is the 4th time we've been down this path of thinking "this is it". This time was a bit different as he had slowly stopped eating, so it seemed everything was shutting down. The first really close call was pneumonia, I kept wanting to call someone and he would not go. Then at the 9th hour we went to the hospital. They thought he was going to go during the bronch. Not this guy. The next really rough one was when he got sepsis, and was out for 3 days and his pressure was falling and falling. Called everyone in that time too. There was one other bout of pneumonia. The emotional upheaval is stunning.

I know others here will understand, and some may think it cold, but this really threw me for a loop. This is the first time I called the Funeral home to give a heads up. But, I was telling my DD that "while this is hard, I'll be able to come visit you anytime up at PT school". Started planning the funeral service, started planning what things I needed to do after. Losely of course. Things like, getting some painting finished, thinking about selling this place (too big for 1), going back to the gym to get my workouts in. Obviously these things won't happen right away, but just the thought of not being tied to the house 24/7 was appealing. And none of this was written down, just thoughts crossing my brain. It felt good. I should have known better.

I know I will miss Brian terribly and none of the above will matter for a while. I guess it's just been so very long for us, and I've been down this "it's imminent" path a few times before. When it actually does happen, it's going to be a huge shock and none of us will really believe its happening. Like the little boy who cried wolf.

Thank you everyone for holding me up during this trial. It may not be the last time you will travel down this path with me. My man has a very strong will to live, and he's a fighter.

Hugs,

Sue
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Old 04-28-2017, 04:45 PM #94 (permalink)
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Default Re: Very concerned end is near

I understand those thoughts exactly. I don't find it cold. The reality is we are going through the nightmare of ALS right along with our partners. There is no way anyone would this nightmare to go on forever. You all have been going through this for a very long time...

I really hope you get to go on your trip next week. Sounds just like the kind of break you need.
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Old 04-28-2017, 07:26 PM #95 (permalink)
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Default Re: Very concerned end is near

Sue, I can't imagine being so close to the brink so many times. Your strength is amazing...and so is Brian's. Hope you have a lovely trip and come back renewed and refreshed. I would bet Brian will like the way that looks on you after what the two of you have gone through the past week!
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Old 04-28-2017, 08:42 PM #96 (permalink)
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Default Re: Very concerned end is near

Sue, hope you have a great time and a well deserved rest. Having been thinking of you throughout this time, Kate
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Old 04-29-2017, 09:05 AM #97 (permalink)
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Default Re: Very concerned end is near

Sue,

I really know how emotionally draining it is to go through multiple "this is it" episodes with Brian because I have had similar episodes with my Frank. I don't think it is cold at all to think and loosely plan for "the after". At times when this gets overwhelming, I remind myself that it will end. There will be a day that I can go out to a restaurant, go shopping, start exercising again, go on a vacation. This is a coping mechanism for me. It may sound insensitive to those who have not been a CALS, so I really never say this outside the safety of this forum.

We are facing the same difficulties regarding getting hospice services for PALS with a trach. Were you able to find any hospice that would accept Brian?

I so hope you are able to go visit your friend in Florida. You need and deserve this after what you went through. Sending you hugs.

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Old 04-29-2017, 01:53 PM #98 (permalink)
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Default Re: Very concerned end is near

It is incredibly hard to go thru....I wish all of you peace and serenity on your journeys with your pals
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Old 04-29-2017, 03:22 PM #99 (permalink)
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Default Re: Very concerned end is near

Sue your words could sound cold to someone who did not know anything about this disease. But the reality of this disease and what you are actually doing every single day, and how you are doing it proves you are anything but cold.

However, you are human, and that's a good thing!

You so deserve this rest. Who will look after Brian while you are gone?
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Old 04-30-2017, 09:13 AM #100 (permalink)
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Default Re: Very concerned end is near

Thank you again everyone. I know that all of you understand, and i too keep these thoughts here or with my kids - that's it.

Sharon - nope no hospice in the Pgh area. We are *@* out of luck here. So much for hospice being all about caring. That's crap. I also found out that if they come and do and eval and if it looks like the person will be gone in less than 36 hours, they won't take you then either because they won't get paid.

While i am gone, my Grant will cover my nurse from 8-4 each day, our DD will be here at night and greet the nurse in the morning, and relieve her at 4. Our DS will then be here about 5:30 for DD to go to her second job. Those two will take care of the weekend hours as i won't have a nurse those 2 days. We've done this before, so they have a good system worked out.

I've always been hesitant to drift into thinking about "the after" because of how much will Brian has to live. We had a great thread about this and I've talked about the tiny home way out. That however, was more of a pipe dream. I'm too young to retire, so other and maybe a weeks vacation, it wouldn't happen. We own a business and I do the books/payroll. No rest for the weary. Can't afford to hire a payroll firm at this point because the business is still climbing out of a hole from a very slow 2015, so every other week, i've got to do that and pay the other bills as well. Can't turn it over and can't afford to quit. However, working at Walmart just pushing carts around sounds very appealing - no responsibility.

This is the first time I let myself get into some actual things that could happen. Taking off on a Friday afternoon to visit DD 2 hours away at school for the weekend, getting back to the gym. Getting this house in order - finally. The thoughts were very real and very appealing. So it was to a point disappointing when yet another dream was crushed by this wretched disease.

I have to see how today and tomorrow go output wise. I'm concerned that his kidneys may have taken a hit this time. Output is a lot lower than it should be, so I'm trying more of a fluid challenge today to see if it changes. I wasn't concerned at first, because he was rehydrating, however it should be a bit better than it is right now. As we know though, everyone of these kinds of episodes takes more from our PALS, that they generally don't get back.

Had to cut back on his beta blocker, his HR and BP were getting too low. The idea was to get it down, and see if that changed things. It did, so I'm not out to purposefully do him in if he's feeling good and not suffering. It's all about his comfort and what he wants.

Ok, need to get my day moving. Lots to do

Hugs,

Sue
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Old 04-30-2017, 07:10 PM #101 (permalink)
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Default Re: Very concerned end is near

Sue, I think often of the short story "The Story of an Hour". It's not that we want them gone, but I do fear making plans too early. I don't want to feel what I fear I could at the point you are in. I'm so sorry that you and he have to go through this
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Old 05-01-2017, 06:03 PM #102 (permalink)
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Default Re: Very concerned end is near

You have a lot on your plate Sue. One day at a time. Your amazing.
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Old 05-02-2017, 04:31 PM #103 (permalink)
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Default Re: Very concerned end is near

Sue, you and your husband remind me very much of me and my husband. I know how tough it is with the very long time frame of illness--it is so incredibly wearing on your mind, body and spirit.
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Old 05-02-2017, 11:40 PM #104 (permalink)
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Default Re: Very concerned end is near

Sue, I just wanted you to know that you are in my thoughts. You are amazing and have so much to juggle. Hugs
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