On Monday I received a summons for jury duty. Of course, since I'm the main caregiver for my husband I'll need to be excused. Simple, right? I'll just call the official, explain, and that will be that. So I made the call and was speaking with a very officious bureaucrat (redundant I know) and explaining my situation when out of nowhere I broke down. Uncontrollable tears and unable to speak. Still not sure why then, but I suddenly felt so overwhelmed with the explanation and the unsympathetic person on the other end of the phone. Good news is that I was excused, and I hope the person I spoke with was a little kinder to the rest of the people she dealt with that day. XO
Chris
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Flemingc
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Oh, I wish I could really hug you, my dear. I also have started to have issues with explaining why I can't do things right now, and have told total strangers more than I ought. Why can't I sign up to give blood? Well, hospice appointments are taking up everything I have for free time. Why am I cancelling an appointment with the urologist - Is he going to be seeing another doctor? Well barring a miracle, I don't think we will have time to worry about a recurrence of the bladder cancer. It does shut down the discussion pretty briskly, but I feel weird and vulnerable when I say these things, and haven't yet got a quick true reply that says nothing but is as effective.
Vulnerability really strikes a chord with me. Most of the time I feel so in control - managing the household, taking care of us and the family, juggling drs visits, and more. Then it hits me that I'm not in control at all. Of course, none of us really are! I may have to work on that "perfect response"! Thanks, EC. I'm grateful you're there!!
My wife, who was in her final year with PSP, got her summons, here in Kentucky. We can't just call to be excused, but have to send in a form with our reason for requesting exemption and hoping they accept it. If you don't hear back from them, then that means you've off the hook, but otherwise they send you another letter and tell you to show up. I told them of her condition and her judgement capabilities and requested a permanent exemption. I never heard back from them. So I guess we're good. Unfortunately I lost my beautiful bride last July.
But it was about month after her summons, I got one for myself. Again, I filled the form out and requested a permanent exemption as I was the primary caregiver to my wife who had this horrific disease. I also never heard back from them. So I guess I'm also good for life. I don't really mind serving, as I feel it is my civic duty. I've done it numerous times in the past. Much more than what seems to be for the average citizen in my area. And somehow I always seem to be the guy who gets picked to be on various trials during those 2 weeks of service. Sometimes I was even nominated to be the jury foreman. As compassionate as I always felt I am, our group of 12 always seemed to find guilt and sent them to the gallows. Well, we at least slapped them with a $500 fine.
Funny how something like this can bring out your vulnerability when normally you can appear to be so strong. These vulnerable feelings sit just below the surface and when someone is unkind, unsympathetic and downright rude it can quickly bubble up and you break down. Happens to all of us I'm sure.
This reminds me of the time about a year ago when I was sitting in my OB/GYN 's office and he was trying to convince me to have surgery(which I have since come to believe was unnecessary anyway).I told him I was caregiver 24/7 could not do it.When he started talking about calling on friends to help it was all I could do to keep from bursting into tears.When you are a full time caregiver you don't have time for friendships.It made me realize how alone I am in this journey.
Yes, the hospice social worker asked me yesterday about my social support network. Awkward. I'm very grateful for my (too distant) sisters, who have come and helped when I felt overwhelmed and would drop everything and come again if I needed them, but the closest is 600 miles away. Dear friends a couple of states over are there for me on the phone.
Since I was promoted several years ago I have lost the ability to call on my friends at the office for help, although they offer. It feels wrong to accept, since theoretically their jobs depend on my goodwill.
Oh Jan you are so right. My so called friends just vanished. One or two have come back since my husband died but things will never be the same. I don't feel I can ask them for help because they always seem to be busy when I have asked them for something.
Even now I feel so alone. I haven't seen or heard from anyone for almost a week. Apart from a phone call from a cousin last night! Got a text from my daughter in the early hours of the morning wanting to know if I wanted to go shopping today. Food shopping that is. However as I had only had 3 hours sleep I asked if she could leave it until later. No she couldn't! Son is away until tomorrow or maybe it's Saturday and I forgot it's a Bank Holiday weekend! So will be living out of tins I suppose? I ended up in tears on the phone yesterday too! Just saying my husband has died makes me cry! I managed alright at first but I am not doing well now. Then yesterday got locked out of Healthwatch! Think it's OK now but not sure if I will be locked out after sending this!
I wish I had some answers for all of us in these circumstances.I have added to my prayer list everyone who has PSP and their caregivers. I don't know what else to do.
Sending hugs and wishes for a comforting day for all!
It's hard to hold onto friends isn't it, i feel guilty because I don't have the energy to call them after all of the careers calls, medical visitors, call related to Ben's Illness etc etc. I rely on them calling me or popping round to see us. I also imagine 'why on earth would they want to see us as we have nothing to say about our lives except negative stuff' I'm lucky that I have a few good friends who understand this and do make contact on a regular basis even though I know they find visiting difficult they continue to support us. Our direct family are all long distance but they do visit to see us and help me out with various chores, but not his personal care.
Kate then they are real friends. Just a phone call can make life worth living? If they do chores too then they are definitely worth having. I don't have friends who like to ring. Maybe they are thinking of the cost? Given they don't have to see Garry anymore they can't be bothered coming to see me either.
I have been getting worse instead of better. When Garry died I was very together although in shock. Now I am still in shock I think but for different reasons. However the crying comes everytime I go on the phone or meet someone who doesn't know what has happened.
Miss him so much and I have been having nightmares which doesn't help. Oh well this is my new life?
It is so difficult Marie, I really feel for you. In our society I think people find it very tough to face up to death and the bereaved and tend to avoid rather than support. It can really hurt and make you shrink away from the world so that you don't get hurt. I feel much more comfortable with friends who have travelled the journey with me and see it as it is, some are to scared to face up to the reality of the disease and they are the ones who will stop calling. My heart goes out to you and I wish you well as you work through your grief, I hope you still have a couple of loyal friends who have stuck by you.
Kate thank you. The friends who deserted us have come back now Garry has gone. At least for the time being! It will never be the sane with them though.
Two who were there for me when he was here have now vanished out of my life. There is only one who was there for us both and who is still there. So life is pretty lonely.
I suppose it will be until I get to the stage when I can start to meet others in the same position. It is still early days so maybe I am expecting too much at this stage.
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