Thanks guys, it's nice but very un fortunate that there are people who understand. I am lucky in that we have the VA so no worries about money or equipment and that my PALS is thoughtful but even with that I don't think he has a full understanding of what CALS go through. Hard to complain because he has it even worse.
I am finally feeling better today. Beyond taking care of my pals, I had let of lot of things go as was so sick, so was very busy today playing catch-up with the priority items, Actually ate breakfast and lunch for the first time in a week and was working on some important paperwork, when I got a text from my pals about a new project he wants me to take on, that will basically take all my ‘free time’ (I say that, tongue in cheek, for the next few months. I can’t help thinking he has to much time to dream up projects. He basically swept away the relief I felt a bout feeling better and replaced it with another complicated task I have to undertake. God forgive me, I am beginning to feel like he sees me as a servant and was waiting until I wasn’t dragging to hit me with this. The odd thing is that we have a plan in place to handle this already. I told him that and he wants to change it anyway. I am so exhausted, it’s one project after another.
He's still your husband, not your employer -- you still have the right to say no at times. Only you can decide if this is one of those times, but if this is going to significantly reduce your ability to care for him, that could be the line to take.
Or perhaps there is another family member or friend who could take on a portion of the project?
Dear ARCG, I am glad you are feeling better. What is the project he wants you to take on? Is it something that is necessary for his care, or just something he thinks he wants done? You say you have a plan in place so perhaps he needs to be reminded of that.
Free time for us CALS is precious and also necessary. If my PALS asked me for something like that I would explain to him that in order to be a good caregiver I need to have some time for myself to recharge. I think we are all exhausted, both physically and emotionally, which is why our small amount of free time is so valuable.
its basically revisiting the backup systems I have in place. Maybe me being sick made him nervous, as he is an only child, his mother has passed and he relies on me for his care. He is on hospice and there is a facility that he can go to if something happens to me and I have told everyone of that plan. Also, I have backup for his trilogy and in addition to that a portable generator, if we lose power for a while (which has never happened in the many years we have lived here, but I felt it was important, just in case.) and if the event goes on indefinitely and our generator gives out I have arranged for a facility that he can go to. He wants me to put everything in place so if something happens to me or there is a catastrophic event, he doesn’t ever have to leave our home for any reason. I understand, and will probably follow Laurie’s advice and try to delegate some of this. I did discuss the plans we have in place with him. I have more or less accepted that there is only so much we can control, and some of that is an illusion. I don’t think anything I do will ever help him with must be a very scary lack of control feeling that he has. But I did make it clear that it will take time to restructure the plan and that seemed to appease him.
Sounds good. It sounds like you have done a lot and it may just make him feel better to see it all laid out, maybe along with a list of family, friends and/or neighbors that are aware. You are right -- it's the lack of control that is scary, and his dependence on you makes that more so.
One thing, in case you haven't done it, that he might appreciate, is to fill out a form with the power company, certifying that he is dependent on powered medical devices. Here, a doc has to sign it. You then get priority if there's an outage.
Likewise, if your town is on Smart911, you can register your address on line so the EMTs/firefighters know what they have. You can also put his medical summary and advance directive on the frig. In other communities, less formally, I know some CALS have had conversations with emergency services directors, etc.
Delegate away! Nothing wrong with a fresh set of eyes.
So true - as CALS we feel a lack of control, so I can't even begin to imagine what that feels like to a PALS!
I think that telling him it will take time and that being accepted is great.
Maybe you can then work on it in modules to space out how many of your 'spare moments' you have to give over to this.
ARCG sounds like you have a lot of these things either set up/taken care of, or have a plan. Maybe it's just a matter of putting it all down. Hope there is someone who can help you do that and that it will put your PALS mind at ease.