Old 02-03-2015, 04:16 PM #1 (permalink)
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Unhappy The Good and The Bad

Last week, Patti and I went to the clinic and also met with our regional ALSA rep. Some good and some bad has come of this.

The Good: People are cracking, and we're starting to get equipment and other needs fulfilled. Patti's power chair has finally been approved (only took 6 months of games ...). in the meantime, the chair provider loaned us a power chair demo and a Hoyer lift and sling. She just got her Bi-Pap, cough assist and suction device today. All the paperwork is finally finished for her long term care insurance, and we should get an answer by the end of the week. Her van paperwork is all done, and it's going through the final approval at the last state office it needs to visit (I hope).

The Bad: Last Wednesday, her FVC was at 35%, a 50% drop in about 3 months. The MSN reassured her that it might not be as bad as it seemed. She might be measuring lower from the fatigue of the trip and the fatigue of months of struggling to breath without a bi-pap, though she clearly has needed one. On the other hand, breathing has become more difficult for her even in the last week since the clinic. She pants at almost all times, no longer able to breath easily on her side with an elevated head/chest, not even sitting in a chair. (We just got the bi-pap today, so we'll see how that helps.) She's eating noticeably less lately, even skipping her favorite desserts.

I fear that now that everything is moving along with DME and other support, it might be too late. She fears this, too, yet we're waiting to see how the respiratory equipment might help. I don't want her to die yet, but if she must and if she's going to not have much enjoyment from life here on out, I'd rather she go quickly and with the least physical and psychic discomfort as possible. I think she's terrified and wishes she wasn't facing this now. I wish I knew exactly what was happening and how long it would take. I wish I had control, at least the control of *knowing*.

A few weeks ago, I felt overwhelmed by the bureaucracy of insurance, government and medical offices. Today, I feel overwhelmed by her disease for the first time.
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Old 02-03-2015, 04:25 PM #2 (permalink)
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Default Re: The Good and The Bad

Oh I can so identify with all those feelings you are having and the struggles.

It is very possible the bipap now is going to give her an increased quality of life. Some PALS have some trouble adjusting to using it, so make Patti aware that his is normal too.

Our Laurie (lgelb) is a wealth of tips on the bipap so don't hesitate to ask if you are having issues.

The lack of control feeling is one of the most tormenting ones indeed.
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Old 02-03-2015, 04:47 PM #3 (permalink)
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Default Re: The Good and The Bad

Thx for kind words, Tillie--
Calvin, absolutely, let me know if/how I can help w/ mask, settings, etc.
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Old 02-03-2015, 06:33 PM #4 (permalink)
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Default Re: The Good and The Bad

Hi Calvin, I would kindly suggest to not focus too much on the drop in numbers. I would focus on how Patti is doing. How she is breathing, how she feels, is she getting improvement with the bipap? I say this because my husband presented mainly with respiratory symptoms and had low fvc-42% at diagnosis. Today he had new testing done and was at 39%. Last August they told him he was at 20%. The numbers can change due to fatigue, how good a seal the mouth gets on the device, etc. The number is just that, a number. I know I watch them like a hawk too but a better measure is really how your pals feels.
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Old 02-04-2015, 03:06 AM #5 (permalink)
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Default Re: The Good and The Bad

Gooseberry is right, Calvin, and I should've remembered we did another thread on this (the futility of worrying about FVC) that you might look up. Kind of like, treat the patient, not numbers or diseases. The BiPAP will definitely help her breathing, but there is often ongoing fine-tuning that is worth doing.
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Old 02-04-2015, 09:18 AM #6 (permalink)
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Default Re: The Good and The Bad

Thank you, everyone. I'll try to keep focused on the person and the present. ... I think what's really getting me is that for the first time the probability that Patti will die is sinking into my brain. It's no longer intellectual. I'm going through a grieving process, and I'll likely go through it again and again with each new stage.

Coupled with this is the fact that she's become more emotionally important to me. Whereas for many of you, your PALS is a close family member, often a spouse or parent, Patti is a friend. We've been good friends for years, but having her in my home the past seven months, spending so much time with her, caring for her, has made her more central to my life.

Just before we went to the clinic, I said to her that I hoped she'd be one of the long-term survivors, assuming it was at a stage where she enjoyed life and we had the equipment and other resources to care for her in reasonable comfort. I'd be happy to have her living with me for years and years, helping her as needed, and enjoying our time together.

Had she gone to live with someone else or an institution, I'd have still been very sad, of course, to see a good friend suffer and maybe die. But now that she's closer into the circle of ... family? ... I'm more vulnerable. Yes, this is all about me. But, dammit, I'm really, really sad today.
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Old 02-04-2015, 12:27 PM #7 (permalink)
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Default Re: The Good and The Bad

Calvin,you are an amazing friend and Patti is so very lucky to have you,and you couln't be doing a better job
if she was your spouse,parent,sibling.My husband was crying last night because he knows how
bad this is going to be for me when he is gone and I cry for the time he has to endure this monster.
We just try to make everyday count I am so thankful that he still has his humor.(so far anyway).
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Old 02-04-2015, 01:06 PM #8 (permalink)
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Default Re: The Good and The Bad

Calvin, as Andycap said, you are an incredible friend. How wonderful that you feel the way you do about this experience (and by that I mean the positives--the feeling of family). I'm sorry that you will also share in the grief that comes with this process, but I'm convinced that Patti could not have found a more perfect caretaker than you.
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Old 02-04-2015, 02:42 PM #9 (permalink)
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Default Re: The Good and The Bad

I could have started this thread myself as it mirrors much of what we are facing. Micky's trying to get the Astral to work for her and we have now lost many nights sleep from it. Our first diagnoses was right at a year ago and this week she was fitted with a head array on her PWC as her arms and hands have failed her (took her 6 months to get her chair as well). I ordered a Tobii PCEye Go for her and it will arrive tomorrow. Wasn't willing to wait for Medicare and then battle them turning it off for email and internet. The Tobii PCEye Go was $2K and should work on all our existing PC's and tablets (windows based). This disease is overwhelming and I find myself wondering what to do next at times. I often have to step back and remember, right now in time, it's about taking care of my wife. If things around the house like painting, scrubbing floors or what ever don't get done, oh well, they don't reach high enough on the priority list. Love my wife and the train we are on seems like a bullet train and not a standard freight train.
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Old 02-04-2015, 09:21 PM #10 (permalink)
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Default Re: The Good and The Bad

DJ, if you can be more specific here or off line about Micky's probs w/ the Astral, I might be able to help.
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Old 02-05-2015, 03:00 PM #11 (permalink)
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Default Re: The Good and The Bad

Calvin,
I am sorry you so sad right now.
Keep coming here. When I am sad there is no better therapy than a whole lot of people who know EXACTLY where you are at, what you are feeling, and have been/are there right now with you.
Sad is ok. And you are likely right that you will continue to grieve as each new 'thing' happens.
I am so thankful that Patti has you. She is definitely becoming more like ..family... with all that you are going through together.
God bless you.
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Old 02-05-2015, 03:17 PM #12 (permalink)
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Default Re: The Good and The Bad

Calvin, you are such an amazing person. One of the first things I read on the forum was that the grieving process starts with diagnosis (I am sorry I can't remember who posted it) and they are so right. I got really angry for almost two months. Although I am better now, I still get overwhelmed. You are allowed to be sad, thats just part of the grieving process. I wish I had better words of wisdom but since I don't I am sending you much loves and hugs.
~Kaye
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Old 02-05-2015, 08:37 PM #13 (permalink)
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Default Re: The Good and The Bad

I am finding that anger is part of the grieving progress now that my dear hubby is gone and that is not a comfortable experience for me. How can I be angry at him now that he's gone? I am angry that he left me before I was ready and angry that when I sold his handicap van it wouldn't start when the man picking it up came to get it - because he didn't tell me to start it periodically In this cold weather, and I'm angry that he wasn't here to reassure me that I was getting a fair deal on this new van......and the list goes on. And maybe anger isn't the right word. Maybe it's sadness that going it alone is so hard and I miss him so much. Maybe it's realizing that this independent woman of the new millennium needed her other half to be self assured and confident in her own abilities. And maybe it's sheer hatred of this disease and how it changed our lives so completely and left such a hole in my heart. Fortunately each day STILL holds some laughter, lots of wonderful friends and support and a busy life. But HE is missing so it's not a perfect life! That's my rant for the day! Donna
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Old 02-08-2015, 05:53 AM #14 (permalink)
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Default Re: The Good and The Bad

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Originally Posted by cheerleader View Post
I am finding that anger is part of the grieving progress now that my dear hubby is gone and that is not a comfortable experience for me. How can I be angry at him now that he's gone? I am angry that he left me before I was ready and angry that when I sold his handicap van it wouldn't start when the man picking it up came to get it - because he didn't tell me to start it periodically In this cold weather, and I'm angry that he wasn't here to reassure me that I was getting a fair deal on this new van......and the list goes on. And maybe anger isn't the right word. Maybe it's sadness that going it alone is so hard and I miss him so much. Maybe it's realizing that this independent woman of the new millennium needed her other half to be self assured and confident in her own abilities. And maybe it's sheer hatred of this disease and how it changed our lives so completely and left such a hole in my heart. Fortunately each day STILL holds some laughter, lots of wonderful friends and support and a busy life. But HE is missing so it's not a perfect life! That's my rant for the day! Donna
Donna, you sound like me - Ron has been a part of my life for so long that I would be helpless/confused/frustrated? doing the things he used to do. I am embarrassed to admit that just recently, friends showed me how to put gas in the car. I don't even know how to add windshield wash - okay, that just goes to show you how much I've been relying on Ron all along, not realizing that eventually I'd be alone Oh, and 'rant away'! I'm sure none of us mind and we have wide shoulders! Love, Heather xoxoxo
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Old 02-08-2015, 05:56 AM #15 (permalink)
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Default Re: The Good and The Bad

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Originally Posted by Calvin-CALS View Post
Thank you, everyone. I'll try to keep focused on the person and the present. ... I think what's really getting me is that for the first time the probability that Patti will die is sinking into my brain. It's no longer intellectual. I'm going through a grieving process, and I'll likely go through it again and again with each new stage.

Coupled with this is the fact that she's become more emotionally important to me. Whereas for many of you, your PALS is a close family member, often a spouse or parent, Patti is a friend. We've been good friends for years, but having her in my home the past seven months, spending so much time with her, caring for her, has made her more central to my life.

Just before we went to the clinic, I said to her that I hoped she'd be one of the long-term survivors, assuming it was at a stage where she enjoyed life and we had the equipment and other resources to care for her in reasonable comfort. I'd be happy to have her living with me for years and years, helping her as needed, and enjoying our time together.

Had she gone to live with someone else or an institution, I'd have still been very sad, of course, to see a good friend suffer and maybe die. But now that she's closer into the circle of ... family? ... I'm more vulnerable. Yes, this is all about me. But, dammit, I'm really, really sad today.
Calvin, how is Patti doing now? ... and how are you coping? Sending huggs your way

~ Heather ~
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