notrydoyoda Posted January 2012
The Caregiver & Dysfunctional Families: How are you doing?
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This has been a sudden change for all I heard recently before is how good he has been doing.
I just got to where he lives after an 8 hour drive.
Thank you Dusti. I’ll found out Tuesday on my blood work whether the metformin is bringing my blood sugar too low or if I have a thyroid issue. I doubt my kidneys are a problem as they were fine with blood work in April.
Take care everyone.
sharyn it takes time to get your balance back. Hope your niece and sis are getting some counselling. Take it easy.
Dusti - thx for the info. Mother is not a plus size We are in Canada and I am a distance caregiver, so I shop online for her mostly. Unfortunately, Cato does not ship here, but thred up does normally, though not at the moment. I saw some nice tops on thred up so hoping they will be back to shipping here soon.Their price and choices are great. Mother is 106 and in a wheel chair so I have bought some adaptive tops too, but the choices are very limited. Hope things are good for you.
My "non existent" ovarian cyst really acted up yesterday. I am going to have to track it on a calendar again and then see my dr and ask to see an obgyn and to have an ultrasound when it is acting up. I would also like to have a hormone profile.When they did the last ultrasound it was quiet and showed nothing which didn't surprise me. It is a darn nuisance when it acts up. I got some Dong Quai and will start it today. Wil.df yam cream might help too.
Golden... not sure what size your mother is but if she is plus size check out the site for Cato's.. cute clothes for all ages (they do plus and regular size) and decent prices. For gently used I have been looking at Thread Up though I have not tried them before. I am plus size and went to scrubs (yep like the nurses wear) as they are comfortable, easy to clean, dry fast if they get wet when I help my honey shower and are cute and they are reasonable price. We buy our scrubs (nope we are not nurses or in med field) from Allheart.com. Just some ideas. Hope they help.
Sharyn...so glad you are hanging in there. It is good to keep an eye out for any signs, but please don't forget to take care of yourself as well. Please keep us posted on how you are doing.
Have a great weekend.
Golden, I hope you’re feeling better. Thanks for the hug. Yes there are too many unanswered questions. I know I’ll get through this with time. I will keep a check on my other niece. She and her sister were inseparable, and checking on my sister too.
susan - I LOVE that Allan Sherman - it goes back many many years. Thank you!!!
sharyn (((((hugs)))) such a difficult time for the whole family. A little counselling might be helpful. There are so many unanswerable questions with suicide. We went through it with ex's sister.
glad - wow -things are moving!!!! Choices, choices!!!
dori -hope you are doing very well and enjoying your break. Don't use it to house clean!!!
becky - when I had renos done they put several new doors in the wrong way so the light switches weren't handy. I caught one and made them redo it. One other one I replaced with the renos after the fire, and the garage and front door are still the wrong way around. I actually prefer the front door this way as it opens into the living room. The garage door is still a nuisance.
Going cross eyed here looking for summer tops for mother online . I finally found some and a couple of adaptive ones. Hope they work. At last we got decent rain and the shrub roses in back are in full bloom.
Gotta hit the hay! Nite all.
And a couple of pocket doors. Saves wall space.
Meeting contractor for coffee in the morning, decide what doors I want moved in the master bedroom area.
For Dori:
Hello Muddah, hello Fadduh,
Here I am at Camp Grenada
Camp is very entertaining
and they say we'll have some fun if it stops raining.
I went hiking with Joe Spivy
He developed poison ivy
You remember Leonard Skinner
He got ptomaine poisoning last night after dinner.
All the counselors hate the waiters
And the lake has alligators
And the head coach wants no sissies
So he reads to us from something called Ulysses.
Now I don't want this should scare ya
But my bunkmate has malaria
You remember Jeffrey Hardy
They're about to organize a searching party.
Take me home, oh muddah fadduh, take me home, I hate Grenada
Don't leave me out in the forest where I might get eaten by a bear.
Take me home, I promise I will not make noise or mess the house with
other boys, oh please don't make me stay, I've been here one whole day.
Dearest fadduh, darling muddah,
How's my precious little bruddah?
Let me come home if ya miss me
I will even let Aunt Bertha hug and kiss me.
Wait a minute, it stopped hailing,
Guys are swimming, guys are sailing,
Playing baseball, gee that's better,
Muddah Fadduh please disregard this letter.
ALLAN SHERMAN
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.
Those days when you can just do *nothing* or *anything* - aren't those great?! I'm so glad you're enjoying yourself!
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.😬
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!
I’m sharing the above link for reach out recovery regarding suicidal thoughts
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.
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. 😊
Dorianne, Enjoy every minute of your respite. Long hot baths, naps, uninterrupted sleep, etc.
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.
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.
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.
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.