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Paul, I am so sorry you have so much bureaucratic worry piled up on top of the constant worry about your husband. I am not sure if you have said in the past, but have you been in contact with the Ontario arm of the ALS Association? Or the ALS clinic that treated/treats Ferd? Either of these could possibly provide contact with a social worker/patient advocate to help walk you through some options to help financially and advise on employee rights and leave time.

If you have already done all this, apologies for cluttering up your thread with gratuitous advice. Navigating bureaucracy and having to fight for every scrap of help or financial entitlement is just piling more stress and demand on energy you need for caring for your PALS. It's unfair, and I am saddened and frustrated on your behalf.

~Fiona
 
Paul,

I'm so sorry you are going through all this red tape. It's enough that the love of your life is dying from ALS without all the resistance, incompetence, unwanted advice, and stress you've encountered.

It all just makes me sad and helpless because we see what you're going through and it hurts us.
 
Just wanna wish you that your doctor will see you tomorrow and you'll be able to get that health leave. Sending you warm spring sun!
 
I agree with wish, Paul do you have an appointment with your regular doctor tomorrow? hugs mate I hope you have been hanging in there the past week xx
 
Paul, continuing to hold you across the miles. Praying things are falling into place with work and such. Know my thoughts for peace and comfort for both of you continue.

Hugs,

Sue
 
So, where to start.

Thank you for the continued support. I honestly don't know what I would do without all of you behind me. BTW, you all have my doctor's seal of approval. She thought this was great support.

Ferd is still hanging in there. Nothing to eat for over 2 weeks now. The palliative nurse told me he would last about 10 days after he stopped eating. I kind of wish she hadn't said anything. I know she was trying to help me be prepared but it has just ramped up my anxiety levels as we sailed past yet another prediction. You'd think after all this time I'd just laugh at the timelines, they've been wrong every time but ..... The spasms in his jaw and throat keep getting worse and he's biting his tongue and the inside of his mouth. it's been 3 days since I could brush his teeth. He is so particular about his oral care and how it was to be done. Hard to believe I miss it. One more last time.

I saw my doctor on the 4th and she was great. Told me I was doing fine, managing an impossible situation as well as could be expected, She said i was not fit to be at work. I needed the break because of stress.

Unfortunately my leave was denied. Again, stress is not a diagnosis. Yes, terrible situation, but there is nothing wrong with you, it's your partner who is disabled. If this situation were not happening, you would be fine to work. Situational, not medical. Very empathetic but no you don't qualify. I eventually had to tell her to stop as she kept droning on and on. I told her she was just one more person in a long line of people who have told me I clearly need help but no we can't help you. Thank you for your empathy but it is worth exactly nothing. I have no idea what to do next. I reached out to my HR department and my boss but no word so far from anyone.

Honestly, I just feel so defeated, like I'm banging my head against the wall.

I took a look at caregiver leave online and that has changed as well since I first got the information. Good news is there is only a 1 week waiting period, bad news is it's only 55% of income and it's capped at a level 21K less than I make. I would be getting about 35- 40 % of my income. Again, only if I qualify, it only applies to family members. Legally all I am to Ferd is his POA. If I claim him as a common law spouse, it disqualifies him for ODSP because my income is too high. That means all the funding he currently receives stops and I'm on the hook for everything he has received for the last 2 and a half years. He or his legal representative can designate someone as "like family". As I am his legal representative, I need to find out if I can assign myself. One more set of hoops to jump through on Monday.

I'm not sure why I'm surprised. If there is a bureaucratic crack, we fell through it. We've gotten the run around from every agency we've dealt with. ShiftKicker, I have had more people trying to advocate on our behalf. It's been a nightmare of red tape from the beginning. If I had a dollar for every person who told me the system had completely failed us, I wouldn't be so worried about money right now.

So far the only thing that feels even remotely like success has been comforting Ferd. Day by day, hour by hour I've been there. Most times all I can do is hold his hand or rub his back as he drifts in and out of sleep. It's sad but oddly peaceful too. It's weird where your mind wanders. I started this thread talking about missing our movie night. It did end up being the last time we did that. It bothers me to no end the last movie we watched was Bright and he didn't like it. Of all the things to be bothered by. I'm not sure what I expected this to be like. When Ferd is awake, he's so alert, so present then he drifts off. I think the only time he relaxes is when I'm there. If only I could figure out how to get a good nap in too.

I hate that people have started to talk about him in the past tense. I hate that my doctor suggested i start grief counselling now. I guess I understand my grandmother a bit better. When my grandfather was very sick, the family was urging her to get everything in order and to make his funeral arrangements. Her response was that she wasn't putting him in the ground yet, he wasn't dead.

Everything in it's time.

Paul

Prince of Persistance

--oO:neutral:Oo--
 
What horror you have to go through!
Good your doctor is sympathetic, bad "stress" alone isn't doing the trick. Can you have another go at it with "adjustment disorder" oder "PTSD"?

The cargiver leave and "becoming" a family member is the other route to go. Okay. Does reduced income really matter at this point? (I've read about debt, I think.) Without wanting to make another prediction, caregiver leave it not going to last forever, so maybe some family and friends will chip in big time so you get the opportunity to not gamble away more of your money AND your health.

Talking about him in the past tense is inconsiderate. Grief counseling may appear just as morbid at first. But it could make sense IF you found time for it between work and comforting Ferd and getting tangled up in red tape. (That IF is most important. One more thing to do would be just one more thing to do right now.) From the get-go ALS is a palliative situation. Knowing that your loved one will be ripped from you sooner or later, making that loss not a fear but a promise, made me grief without realising it. You're much further down the road and you know all that already. I'm so sorry to be just another one trying to give good advise and not being able to change anything.
We're all Team Craig here rooting for you and for Ferd.
 
Paul, I am so glad you came here and got some of this off of your chest. I wish I had answers. Best I can do is hold you tight from here. I really wish I could come there and hold you. And I know that comes from wishing someone could do that for me too.

Falling through the cracks is something we definitely have in common. Too much money for this, not enough for that, so here I sit having to go it mostly alone. Can’t even do a situation like you have. And now finding a nurse through and agency that you will only use 2-3x a month is complicating it even more. So I get, totally get the cracks.

Is you Dr. not willing to call it PTSD? Would it make a difference in your leave application? Where is common sense these days?

I get the whole family thing and taking on huge amounts of debt that would take forever to payoff, so I understand. That isn’t a practical solution. We amount debt from this dreaded disease no matter which way things go.

Don’t let anyone refer to Ferd in the past tense. Yes, counseling might help, but many times it does just feel like “one more thing” and that is not what you need right now. I think we have all been grieving since the day our loved one was DX. It doesn’t make it easier it is just something we’ve been put through. There is nothing predicable with this monster, not one little thing.

Please know I’m here for you, I’m continuing to pray for both of you. And I’m doing my best to give you that hug and hold you up across the miles.

Hugs,

Sue
 
Thinking of you both, Paul. So glad that despite the Catch-22s in your path, you are being there for Ferd. That is what you will remember.

Best.
Laurie
 
Can't sleep, just rambling. Forgive any lapses in sanity, spelling, grammar, punctuation. Ferd is still hanging on. All I can say is it's been rough.

After 3 weeks with no food, on Tuesday he told me he wanted a snack. He had a yogurt and kept it down, then ate again on Wednesday, just a bit. I didn't know what to think. Then Thursday and today he slept all the way through me being there. He's responsive, just weak and tired. It is from one extreme to the other.

it's almost impossible to understand him. I don't know what is going on but he makes sounds almost continuously. It's like he's lost control of his vocal cords. It was very disconcerting until we figured out he wasn't moaning and in pain. He can't seem to control it at all.

I've been so anxious and worried, I feel like I'm losing my mind. This isn't me. I'm normally the calm one, the one who can keep their wits about them. I was thinking this week that all the worry and crap with leave etc has been keeping me from taking this time for what it is, an unexpected gift. Everyone keeps telling me he shouldn't still be here but he is and I have been so stressed out I haven't been appreciating it. Recognizing that has helped a bit. I've decided everything else is just noise right now. I'm setting one have to task for the day then back to the facility. the task for tomorrow is to get gas for the car. I'm not setting the bar very high right now. There will be a price to pay for that later but so be it.

Still sorting through the paperwork for leave. I've started the claim, it's just a matter of a bunch of supporting documentation I need to get together. Work wants me to appeal the denial from our insurance. More doctor's appointments and paperwork.

Wishmobbing, it's funny how things work. I don't have adjustment disorder because nothing is medically "wrong" with me. PTSD doesn't apply either because I'm not post anything, it's still going on. Odd how PTSD is a stress disorder but stress isn't a medical diagnosis pre or during anything. Another catch 22. It does speak to the larger problem most of us end up facing at one point or another. Everyone rushes to help after death. We have a whole system set up for that. No one knows how to help you live with long term caregiving. For us, dealing with completely dependant PALS, the situation is even more difficult. The toll it takes physically, emotionally and financially is pretty much unrecognised. The longer it goes on, the harder it gets and the harder it is to just bounce back after. Every agency I've dealt with for the last 5 and a half years has clearly seen I've needed assistance, be it financial, emotional or with getting someone physically in to help me. Everyone has said no we don't do that but there must be someone..... Even now, tonight I was told I should reprimand the charge nurses who aren't flushing Ferd's sub q locks with saline when they give him his medications. Why am I responsible for making sure the staff know how to do their jobs? Ask anyone who has had to take their PALS to the emiergency room and it's the same thing. Somehow responsibility for proper care always ends up on our shoulders.

As for talking about Ferd in the past tense, I'm not sure people even realise they are doing it. Some of the staff at the facility, one of his friends even one of his sisters have been doing it.

Sue, all I can say is thank you. You constantly inspire and amaze me. Much as I hate it when people say I don't know how you do it, I don't know how you do it. On top of it all you are here to comfort and support the rest of us. You are incredible. One day we will have to meet in person so I can thank you properly.( and get and give that hug)

Laurie, I've always tried my best to be there for Ferd. If all I can do is hold his hand while he sleeps, I'm okay with that. I feel bad that other things have distracted me from that lately. What we wouldn't give for a bit more time with our loved ones and I've wasted some of that. Thankfully not too late.

I've been considering counselling but I have some reservations . I'm not a good sharer in person. It takes me time to absorb and process things. My doctor encouraged me to reach out to friends and family. I miss our life pre ALS when I'm with our friends. Ferd's absence stands out even more. My family is already worried and upset, I've always edited what I've told them. I don't have the energy to reassure them I'm doing okay or at least okay enough. Every suggestion I've had to make me feel better has involved spending less time with Ferd. I'm not sure how that is supposed work, like I'll not worry if I'm not there. Right now I can't afford it time or money wise but maybe down the road. I can see the value of being able to talk to someone who I can be open and honest with. But then again I have all of you. And you understand exactly what I have been and am going through.

A bit wobbly but still standing

Paul

Prince of Persistance

--oO:neutral:Oo--
 
Paul I am so very glad you checked in. I’ve been worried about you. I’d definitely love to meet in person one day and share that hug. I’m really happy to you have decided to focus on the time you have left with Ferd. How any of us will cope after with what’s left of our lives is the great unknown. I know my faith is what helps me cope. It has to, or after all this time I’d be in a looney bin. Trying to help others does too. I find it therapeutic to come here and listen and share with others when I feel I have something to give. Sometimes all that is is a long distance hug, other times it may be words of wisdom from having gone through something someone else is. Enjoy whatever time you have to the fullest.

Until we can meet for that real hug, please know I continue to hold and hug you across the miles. I’m here for you anytime.

Hugs,

Sue
 
Paul,

All I can say is that if every PALS had a significant other like you, the world would be a much better place. I wish I could just hug you. I wish I had enough money to give you some. I wish I had the strength to fly up there and do anything you needed.

I cannot imagine what Ferd's life would have been without you. You're a beautiful person. You have so much love in you.

We're all here for you. Your tears are running down my face.
 
Please leave your condolences for Paul in Ferd's thread in the Memoriam section.
 
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