notrydoyoda Posted January 2012
The Caregiver & Dysfunctional Families: How are you doing?
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I was soooo tense all weekend I gave myself a hugely bad tension headache! The not knowing, I guess. Or the waiting. My neck and shoulders are still kinda sore. Maybe I can (finally) have a long hot bath this evening.
Edit: this is going to cost me $37.10 a day. Which....I am so glad I live in Canada because that is so cheap I'd have happily paid 3x the price.
Update on my situation with hubs, FIL, MIL posted as long post on Dorker's thread So Disheartened and Angry. Job starts June 25 and it's full time hours at one place with benefits - first such in over a decade. Best reason ever to not be available for dysfunction junction and reduce my financial dependency to relieve guilt.
Golden, your name says it all. I'd say I wanna be you when I grow up, but I never could be. Thanks for all the advice and the gracious example.
Dori, hope your respite goes well.
Sharyn, hope you get through your trip and hugs.
All others if I don't mention you, please know I read obsessively, think light and hope for you, and give yourself a 10 minute break today. You deserve it, and no one else will take care of you so you need to learn to.
Concrete walls poured, forms have been removed. The floor still needs to be poured though and then start framing this week I imagine.
Dori, respite, you will think of something but sleep and rest are definitely part of it. How long are they able to keep mom?
becky - reading should work. At least it transports you to another world. I sometimes get very tired of having to pace myself and be quiet. It is no fun, so I understand.
dori - sleep, play your guitar, go to the park with Bruce, go out for meals with friends...
smeshque - 👍😊
sharyn - thinking of you - prayers for you and yours, too
Finally getting over this flu and got some housework done. Made an error in mother's moves last post - 5 in 8 years. Brain fog, Too many anyway! And forgot to add in meeting R and going through the ups and downs of a new relationship, having been on my own for over 15 years.
I am totally stunned about the way my 70s turned out. Never in a million years could I have guessed what I have had to deal with. Sometimes it feels like a colossal joke by someone who doesn't have a good sense of humour, but I know it isn't. I am now in my 8th decade and hoping that it will be less eventful, that I will not be a caregiver for the whole decade, that, um, maybe, life will be more, um, ordinary. Yet, ordinary at my age may not be a good thing, My friends are going down one by one with illnesses or worse.
When I move to E'ton it will be to an entirely new "scene". The old friends that were there are gone pretty well. I will be building a new life again and that's OK. I have some new friends and some from years ago who are there now to reconnect with and there is much more to do, if I have the energy . It will happen.
Probably sleep.
Dori, I’m so glad that you’re getting some respite. So well deserved. Golden, You accomplish so much with your health issues.
I spoke with the rehab coordinator. Will probably be starting rehab two weeks from Monday. My pain level is increasing. She and my doctor said that was fairly normal. I’m up and walking more. The rehab person says that women have more ongoing pain post op because of muscles around the breasts being moved around during surgery. So that’s something else to deal with. She gave me a bunch of information to read about post op care and rehab.
I had a few visitors this afternoon and earlier this evening. Jay has gone to the movie with a couple of the grandsons. PJ has gone home. He looked tired of sitting around. My nurses are such a big help. They make everything easier. I looked at my incision today. It’s as bad as I expected.
The worst part of this is the boredom. I’m not used to doing nothing. But I have no choice. I’m reading the new Bill Clinton/James Patterson book. Just my opinion, but Patterson writing on his own is better. Jay got me a new extra large print Bible. It has space on each page for journaling. I had admired one my friend Rita had. So I’ve been reading it some. Jay does that ‘Read the Bible in a Year’. He gave me a copy of that too. This is the 7th year he has done the reading. Not sure I’m as focused as he is.
Everyone have a good evening.
Golden, just go slow, only what you can do.
AND DORI, WONDERFUL! I would not pack mom's bag in front of her, it may cause, probably will cause tremendous anxiety! Just stay secretly busy.
dori - that is great!!!!!! Answer to prayer. I know you don't believe in prayer but I do, and I prayed about it. Sounds like you are having a very busy time now. Chatting with the renal sw about down the road stuff must be very helpful, if also twanging on the heart strings. Your mum will look very "spiffy" with her new perm. I hope all gets readied and Monday is the start of a wonderful break for you. I bet you hardly have had time to think about what you want to do.
sharyn - keeping you and your family in my prayers. ((((((hugs)))))
Finally got a sensible email re the grocery fiasco, then not long after they informed me that my other shipment was on the way, and then had been delivered. Folks - it was delivered over a week ago. Sigh.
One of the aspects of CFS/FM is that it is very easy for me to be triggered into a high alert state. I was in that state last night and got only about 4 hours sleep and hadn't entirely "come down" this morning. To boot, there was a storm last night which was whipping the curtains about. They flung a mirror on the floor, but thankfully no glass broke. Those additional emails didn't help either. In that state, I am "wired but tired", and it is not a time to tackle the growing mountain of paperwork on the dining room table if I hope to get things done right. As well, I broke off a nail a few days ago so short it was painful. Managed to get some repair material, do the job and and at a quick glance you wouldn't know the difference. Whew!
I reviewed to myself what I had done between ages 70 and 80, and decided it was quite a lot with working to 73, moving mother 5 times in about 6 years, as well as looking after all her business, surviving the forest fire and evac, then all the work on the house since that. Now, I am downsizing to move, and if the floors or the counters don't get done as often - oh well! With CFS/FM I have a very limited energy budget and need to pace myself carefully.
Take care of you all. Surviving is all about self care. You deserve the best you can give yourself.
So, we COULD have had the bed today! But there's no way in heck I could have organized everything for that in time....I have to get her meds blister-packed specially for her stay, label all her clothes and personal items, arrange her transport to dialysis....all on a Friday afternoon, yikes. Anyway, presuming there isn't an emergency need for the bed before then, it looks like we will have it Monday. I don't even know for how long yet, the nurse is supposed to phone me back this afternoon.
It's going to be through hospice, in the end, part of an extended care unit here in town. Mom took the news surprisingly well! But it was the area nurse who delivered it, so that might have helped. Also I think she was just confused and overwhelmed with the information and paperwork flying around! But she does acknowledge that I need a break, and she doesn't like all the "fighting" we're doing lately either, and agrees a break would help. (At least, she agreed in front of the nurse, lol.)
Then I met with the renal social worker, and she's going to set up the patient transport, because it's facility to facility, not home to facility. And we talked about longer term stuff like end of life hospice, how to "read" when mom might be ready to stop dialysis....down the road stuff (that's probably not too far down the road).
It's been a chaotic day so far (we squeezed an x-ray in there, too!). Once the area nurse calls back, I can relax a bit. Spend the weekend organizing mom's suitcase....booked mom a perm for tomorrow, too, so that might help with her mood (it's wayyyy overdue).
After my disappointment over the August 20th, date, that all moved very quickly!!!
dori - hopefully something will become available before August! You really need a break
becky - these narc mums don't see past the end of their noses.
Well I wouldn't have believed it if I hadn't seen it. This is one for the social media:
Following what I posted before -
I ordered some grocery items from a well known chain.
Part of the order was delivered, part was to be delivered later.
Before the delivery date of the second shipment I received a phone call from the delivery company saying the shipment was damaged and they would contact the grocery chain.
I called the delivery company later that day to confirm this. They assured me it was being dealt with.
Then I received an email from the chain that it was delivered.
I contacted customer service, told them about the above (in writing and on the phone), and was told I had to sign an affidavit that I had not received the shipment, and I had return this affidavit within 48 hours.
Next I received a "Rate the Service" customer satisfaction email from them.
I replied with extreme dissatisfaction saying I could hardly understand their person on the phone and I had not yet received the affidavit to sign. Also said I was 80 years old and needed a service like this and for it to work properly.
I got the affidavit by email very quickly after that, printed, signed and scanned it, and sent it back to them.
Then I got two replies from them.The first reply was a reminder about the items to be retuned. It thanked me for contacting customer service, that I was being refunded the amount of the order and that I was expected to return the non damaged items listed below within 7 days or I would be charged for them. My answer was that I was back to square one of being expected to pay for items I did not get, I have signed an affidavit that I did not receive them, and what more could I do to convince them.
The second email was more personal and addressed to "Dear Mikka" and said I was being refunded and they had put an evoucher on my account and were sorry about the difficulties. My answer to that one was "Who is Mikka?" I have signed my name to every communication with you (and then signed my name again)
This ranks up with "Who's on first" is anyone remembers Laurel and Hardy.
I will try calling them and the delivery company again tomorrow to see if we can make any sense out of this, but I am not optimistic.
I have paperwork I need to do for mother and myself and this does not help put me in the frame of mind necessary to deal with it. Aaaargh!!!!!!
Hugging is definitely off the table for awhile.
She actually said, snidely, "You have a pretty good life!"
WHAT!
Finally I said, pretty gently, "Well, if you're really not sleeping (which is what she claimed), why don't you sit in the chair for awhile so I can stretch out on the couch?"
"FINE I'LL GO TO BED!!!"
I used to love her, but she's made me hate her.
She really thinks this is a good life for me? Not being in my own home? Not getting to perform music? Not getting to play my guitar even for fun? Not going out with my friends? THIS is a GOOD life? Being her (unthanked) servant? Being her (unthanked) personal secretary? Being her (unthanked) chauffeur even when I'm falling-down sick? Doing ALL the housework and laundry (unthanked)? Cleaning up her poo (unthanked) from the floors and walls and furniture? THIS is a GOOD life?
WTF.
I am always glad for those rare occasions when she turns on me in front of the home support worker. Because the home support worker always lets me know I am not the a**hole my mother thinks I am.
-------------------
Apparently I can't get a respite bed at Ponderosa till AUGUST 20TH.
I'm screaming inside.
The area nurse is going to see if she can get a respite bed at hospice house. But if not, I might be sh** out of luck.
Pouring concrete.
It’s been so hard. My heart is so broken. I remember when my niece was born, I was only 12. In some ways we grew up together.
I’m leaving tomorrow for Kentucky. The service is on Monday and I’ll fly home Wednesday. My sister is traveling with a childhood friend of both nieces so she won’t be alone.
Thank you everyone for all your support.
dori - hope respite is working out and no more poop fests
cwillie -i am responding here as I don't remember on which thread you were mentioning your mum's weight and my brain isn't up to doing a search right now. 115 lbs is not much on a 5 ft 7 in frame. Don't they weigh her regularly? The food portions sound very small. I would be concerned about any change downwards.
ali -do keep in touch and let us know how you are.
becky -hope you are feeling better
book - a cruise would be awesome.
glad - forms and concrete - something is happening!!!
Woke up feeling I am recovering from this bug and ready to tackle some paperwork and filing. Coughed my boots up again the other day till my ribs hurt, but that seems on its way out. Then I got an email from Walmart about a messed up delivery. Get this - I will have to sign an affidavit that I did not get the delivery even though Loomis called me and said it wasn't coming because some items were damaged and they would contact Walmart. None the less someone in the system marked it as delivered. I spent time on the phone with someone whose first language was not English - you know the routine - and finally found out they will send me an affidavit to sign and get back to them in 48 hrs. I keep watching my email but the affidavit hasn't arrived yet. All of this for an order which is less than $20. Hardly seems worth it.
After that I called mother's nurse about more clothing that is coming, and also spoke to her about mothers mood. She says since they stopped the risperidone, mother is more angry, more tearful and gives her "the look", amd also speaks less. Just what I saw the other weekend, so she said she will leave a note for the dr to call me. Mother needs whatever they can give her to help her mood. I know "the look" well. It's the BPD look.
Then a kind lady who feels I need phone calls, called me about nothing in particular. I was in the midst of online vehicle registration and online passport renewal. Not good timing. Oh well. Maybe later I will tackle some of the forms I need to fill out by hand. People/places periodically need confirmation that mother is still alive. So much for the paperwork and filing that badly needs doing.
And I have run out of coffee - that's a "must do" trip to the grocery store.
Sharyn - so sorry
Please know that I am thinking of you, and praying for you and your family, and hoping that you can come to find peace in the coming days ahead. Love, Stacey