notrydoyoda Posted January 2012
The Caregiver & Dysfunctional Families: How are you doing?
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Hugging is definitely off the table for awhile.
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!!!!!!
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 - 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.
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, 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.
Probably sleep.
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.
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?
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.
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.
I have to say the notes were kind of comical though - she made a note every time she visited on what Mom was doing, how she felt, what she ate, etc.
Most of it was:
N was sleeping when I arrived.
Did housework, fed the cat. N still sleeping.
N woke up, wanted something to eat. Offered the pre-made meals left in the fridge by S - N declined, wanted only a sandwich.
N back to sleep when I left.
Upon arriving later that day...
N sleeping upon my arrival
Fed the cat, did a load of laundry.
N still sleeping
N woke up, wanted something to eat....
Tried to encourage her to shower, N declined
(you get the picture - it went this way the whole 4 days I was gone.) LOL
Of course, this was back in the early days of caregiving with Mom, when she was still able to be left alone for a few hours at a time - that didn't last long, unfortunately.
During caregiving years, I tried 4-5 different types of SNRIs and SSRIs, but all of them would inevitably start giving me increased anxiety symptoms after 40-60 days. I would get very bad headaches, get physical panic symptoms (like shortness of breath, chest pain), and these would go away when I would come off the dose of anti-depressant.
Some of you may remember those days, when I was having reactions to psych meds, which are generally considered pretty benign drugs in small doses, and I was chasing my tail trying to sort out what was really going on with my body/brain, why all these symptoms.
Given that history, I'm not gung-ho about trying another anti-d. HOWEVER... I have chronic fatigue issues, I have mild pain/discomfort daily (it's not severe enough for RA or fibro, but enough to make me uncomfortable and I take NSAIDS every day right now). These symptoms may respond well to a small dose of an anti-d. And... I'm not in the same caregiving situation I was in before, my anxiety is down to a low enough level that I don't take medication regularly for it (though will occasionally take a diazepam, only maybe 2 times a month right now), and I can drink coffee without triggering panic (one 12 oz cup from the Keurig each morning).
But I also cannot take any amount, no matter how small, of any kind of legal amphetamine, and I used to be prescribed them for brain fog/ADD type symptoms. I took them for some years and I stopped taking them when I was a caregiver. I mention this because -- every once in awhile when I'm struggling with a particularly bad day of fatigue + I have a lot of work to do, I will try taking a very small amount of dextroamphetamine. I will take such a small dose that it wouldn't be considered therapeutic by psych docs, and yet I will have a bad reaction to it. Clearly, my brain has had it with that type of medication, which is a DNRA, and in some ways they are similar to SSRIs and treat some of the same symptoms. I'm wondering if I've developed an allergy of sorts to these meds.
So I can try the SSRIs (a very low dose of something the psych doc thinks might help)... and we shall see... but I'm not very optimistic. I'm also hurting enough, and staring forward into the next 30 years that I must keep my health together and keep working, lol, and I need to get some help with nagging symptoms. I'd like to try the SSRI, see if I feel less tired and achy, go from there.
I'm doing ok, overall. I'm just TOO tired for it to be a normal thing for 43 yo active person. Doc told me today to "get a boyfriend." Lol!!! I told her I was too tired and unless someone wanted to start our dating life with movies watched in bed.................... then I just didn't have the energy for dating right now!! lol
I'm doing fine, I'm plodding along. I wish I felt better than I do.
Golden, I have to remind myself to reflect and look back on things I've accomplished when I feel like there is so much to do in front of me... and if I look back and realize what I've been through, I feel like -- I'll make it, one day at a time. I appreciate you sharing what your perspective is like at 80.
Glad, happy for you re: the house. This is a great step for you, putting some roots down for many years to come.
Sharyn, thinking about you as you're traveling to niece's funeral.
Becky, I hope you're healing well enough. I can't relate to not wanting to take it easy!! lol!! Give me bed and a book and I'd thank you forever!! lol Keep healing. :-)
Dori, happy to read about your respite. You're still in the thick of it with caregiving and I don't envy you, so get your respite wherever you can.
I now know how moms feel when they're getting their kids' crap ready for camp. In my head, it's all "WOOHOOOOOO!!!!"
I talked to the facility nurse and the area nurse this morning. All the paperwork is done and sent over.
I talked to the pharmacy this morning - they are doing up a special blister pack of mom's meds and sending it over directly this afternoon.
I talked to the renal social worker this afternoon - she is working with the facility nurse to organize patient transport to dialysis and I'm not to worry about it.
Basically all I have to do now is pick up mom after dialysis and take her to the respite place.
Really I have six days respite, but seven nights. Seven glorious nights where I won't have to sleep with one ear open. Seven nights where I know I won't wake up to an apartment decorated with poo. Seven nights where I can eat pizza and Chinese take out or even go out to dinner. Seven nights where I can hog the couch and binge watch as much complex science fiction as I want, or not have the bloody TV on at all.
I might not be around much for the next few days, you guys. It's not that I don't love you all, it's more that I don't want to think about elder care. I do love you! And thank you for all the amazing support you give me.
Dorianne, Enjoy every minute of your respite. Long hot baths, naps, uninterrupted sleep, etc.
smeshque - yes, I know. It's the journey of getting there.
guest - congrats re the new job. Sounds great!. Benefits - yay!!! Thx - you are a force and an example too.
dori - mum will be there by now, I suppose, and your respite started. Sounds like all your ducks are in a row. Enjoy! You richly deserve this. If you get bored come here and let us know how you are.
susan -$20 an hour for that - oh my!!! But, getting away was very important.
ali - hope the increased thyroid meds does the trick. Low thyroid can cause fatigue, aches and pains too. I would get your TSH levels right before trying anything else - just to keep things clear. Dexies - wouldn't touch them. I think a good look back once in a awhile is helpful. You have come a long long way and accomplished a lot. Hope you don't have CFS - it's a b*tch.
sharyn - thinking of you. I believe you said the funeral was today. I imagine you are feeling it. Grief is very tiring.
becky - be careful!!!
Got a little paperwork done today. Yay for me! It is not quite as bad as I feared. It is raining now and has been all day. This is typical June weather here and the vegetation badly needs it . I started my summer Gordie grief this morning, waking up feeling very stressed and not sure why. Then it finally hit me with a big WHAM! Some years are harder than others, and I suppose this year it is because I am winding down living here and will leave many reminders of G behind. Not that I need reminders. Some of the past is as fresh as if it happened yesterday. This evening I am very tired.
We are looking at going to the mountains (Rockies) for a short trip - somewhere with hot springs maybe. Anywhere in the mountains is nice. Thinking of that last trip with G and mother to Jasper. It was a blessing to have such a nice holiday with him that summer. Mother's negativity about pretty well everything was a downer, as usual, but, other than that, the trip was really good and I got to spend some of it with just G. Good memories!. Now R and I have been there often enough to have some new good memories. Seems to be how life goes. Be sure to do things to build up some good memories, so when you are old and more limited, you can enjoy them. 😊
AliBoBali...I finally saw my primary care doctor today after over a year. He addressed my back issue (no xrays… ugh) and thinks it may be severe muscle spasms caused from the injury about 6 years ago. Gave me pain meds for it . Doctor also put me on anti-panic meds to help combat some other physical issues and severe overall body aches and tiredness that I am having. Hopefully doctor can find a treatment that alleviates the symptoms that you are going through. Please keep us posted and most of all hang in there.
I’m sharing the above link for reach out recovery regarding suicidal thoughts
So the respite room mom has is pretty nice! There are 4 respite beds in the hospice wing of the facility. It's an older facility ('70s), but it's kind of neat, as once you're inside the gates, the buildings look sort of like houses, all set at different angles in a little roadless community, with lots of gardens - the furnishings are pretty new-ish, and it has a cheerful, positive vibe. Mom's room is huge! Ground floor (I think everything is single storey), in a quiet part of the facility, with two windows that look out onto the gardens. Bed, couch, some chairs, little coffee table, HUGE flat screen TV, DVD player, stereo, her own fridge and bathroom. No fixed schedule, which is good, as mom doesn't really adhere to one! I mean, the meals are on schedule, but she can have snacks and sandwiches any time of the day or night, and sleep when she wants. Lots of social spaces and things to do, too, but mom is not really social.
Anyway, she quite liked the place when she got there, but she kept getting confused and thinking I was staying with her, like, on the couch! Yikes. She DOES NOT get that I feel like a prisoner, always being responsible for her and not being able to go out in the world or be in my own home. Still, I made it out of there ok.
Called mom today at 5:30. She had gotten up around 4 pm (sort of normal for her) and was eating what she called her breakfast. She was kind of confused, and she asked me, "Who are all these people?" I reminded her tomorrow was dialysis, and said I'd call her in the evening afterwards, and that I'd bring Bruce to visit on Thursday. (Yup, I confirmed I can bring the cat, as long as he stays in her room or on the leash.)
I was so tempted all day to go pop in. Then I thought I'd pop in tomorrow. But I have stuff going on, and Thursday is when I feel I can go without being stressed about it, so I stuck to my guns! My mental guns. The guns my guilt holds to my head. Lol.
Today I slept till 1 in the afternoon!! Then I did absolutely nothing until about 5 (ignoring the guilt that was telling me to clean things), then went to the post office to pick up an order (a new robe, because just try sneaking back to your room in a towel when both rooms are off the living room, ugh). Called mom from the car (yes, parked). Had dinner with best guy friend at our favourite pizza place. OMG that was like heaven. (We're doing Indian buffet on Sunday, and I told him to call me if he feels like Mr. Mike's in between, lol. I haven't had a meal out in months.) Then I bought a few groceries (it's amazing how much lighter the bags are when you know it's not four days till you can get back to a store!). THEN I took a drive, 45 minutes out of town to where my dad and stepmom last lived together before he died. Just because I could. Got back to the apartment at 10. Heading to bed after I post this.
Tomorrow I have a massage booked, and I'm going to visit a friend who is home sick this week. Thursday I'll do the promised visit to see mom, and probably another visit Saturday - that's all I really want to commit to. I'm thinking of taking the cats and going home Friday, for the weekend, if I can get over the guilty nagging in my brain that I should be whipping mom's apartment into perfect shape!
Oh, I sent an e-mail to my brother last night, after I checked mom into the respite bed. (Didn't want to tell him till it was done.) Spent a long paragraph justifying my need for a break, and then two more describing the place so he wouldn't think I'd just stuck her in any old place. He wrote back that I should enjoy my well-needed break, and that maybe mom would enjoy the change of scenery too, as it must be hard being shut in and only going out for dialysis. If only he understood that would be true of anyone but mom....she would stay in this apartment and never, ever leave, and keep me chained to her till we both turned to bones and dust....
Anyway, just wanted to let you know where everything's at! I hope you are all having sweet dreams right now! Love you all!
Let the things that you feel you should be doing go. Enjoy your week and sleep as much and whenever you want. Have you thought at all what you would do if mom really likes this place and wants to stay?
Tar has been spread on exterior of basement walls, window frames in, no water or electric in yet as far as I can tell. Maybe framing next week.
One of the planning commission members said I was moving up there with the hoidy toidies. It is a very nice subdivision, probably nicest in the area at least by city girl standards. Paved roads, water and sewer district, manicured yards. 🛁 I just did not want to deal with septic and well for the first time in my life at this stage of my life. May go to look at cabinets again this weekend. Need to make decisions on moving doors etc before framing starts.😬
Those days when you can just do *nothing* or *anything* - aren't those great?! I'm so glad you're enjoying yourself!
Dori, enjoy you long needed respite time, you more than earned it.
Well, what can I say. It’s been horribly difficult and my emotions flip flop from anger to grief. I just cannot understand why. I understand my niece felt like she was a burden, and her turmoil was too great bear. I’m angry that family dysfunction has caused this, has been passed to another generation. I pray that my kids are better equipped to cope with life’s ups and downs. My niece just became a grandma on May 9. A beautiful little girl that is my great great niece....if that’s how to address our familial ties.
I go back to work tomorrow which may be a good distraction. I’ve never dealt with such intense emotions before and I may seek a couple sessions with a therapist. A friend of mine lost her son 3 years ago to suicide. She explained they feel we are better off without them, they are a burden and their pain must end with death being their only option.
This niece was part of the reason I didn’t want to be my sis’s poa. She accused her uncle (dad’s brother) of mismanaging his parents money because she was told she would receive an inheritance. She didn’t take into account that both grandparents were in facilities. I love my niece but I always suspected she had the family curse of a personality disorder.
My heart breaks for family in Kentucky, my sister. I know she won’t move there now. Most likely the friend who flew with her will become her caregiver. My niece was laid to rest in the veterans cemetery.
Thank you all so much for your prayers, thoughts and kind words. I’m hanging in here and healing. Waiting for test results on my eletrolites, kidneys and now thyroid. I my dr has me drinking 4 bottles of pedialite a day, no caffeine. My blood results were fine in April and I expect the same, but anxious about thyroid.