Countrymouse Posted November 2018
On My Mind
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Replacing the much lamented 'On My Mind' profile option, this thread is for musings, jottings, whimsies, preoccupations and the rest of the thesaurus for anyone to jot down anything they please.
I can't remember what the maximum character count was before, can anyone else? But anyway it wasn't very many so let's keep to that.
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If I was home, I would of felt it coming on sooner, and would of been able to cure it without antibiotics, but not traveling and in the heat. Next time I travel I'm going to take those cranberry pills before, and see if the doctor will give me a script to take with me. Cuz I have to go to Ireland in the fall. This was very uncomfortable, and keeping my patience in check was not easy! 😵💫
Finally getting rid of my sea legs. I'm not rocking as bad this morning.😁
My own daughter, early 60s, dealing with something in hip now, missed for THREE YEARS because they kept telling her "referred" pain from bulging discs in her back. Turns out she had torn tendons and muscles, torn from a fall three years ago right from their anchor. Now a bit better after a "tenex" procedure I have never heard of.
But these things get missed, misdiagnosed, and with your hubby you have the added awful problem in that he cannot completely be a good subjective "reporter" of his symptoms.
So hard, these things. So many things just "missed". They say A.I. is better at getting a real diagnosis when the symptoms are fed in than our own docs with an MRI to read. Yikes.
Funny story the guy who delivered my mom's oxygen commented it looked like a Mexican drug store in their place now I get the imagery. Yo can I get some antibiotics? 😂
I've been really dizzy since getting home. Starting to get better now. All in all it was worth it, but I'm not hooked on cruising. Glad we went, we do plan on an Alaskan Cruise in 2026, that's been are goal forever, this will help that go a lot more smoothly.
No calm patch for me. Rather opposite.
It is frustrating that no doctor has any answers or solutions. Hubby on hydromorphone for over a month and even with that in pain all the time. I don’t know what else they would give him if this drug stops working. It looks like it.
Hope it will get better for you day by day as hubby adjusts somewhat.
Nacy,
Good to hear that you are back and enjoyed your cruise.
The solution is to run !!! 🏃🏃♀️🏃♂️Even if for a long weekend getaway when possible . We are planning on it for June . But who knows if it will need to be canceled 🤷♀️🤷♀️.
Hang in there . You are doing a great job !!
Eva, it’s so good to ‘hear your voice’. I hope you’ve hit a calm patch.
Golden, from your lips to Gods ears! Everything else in my life has been neglected but when a do manage a quiet hour I can’t focus. This is an unnatural state of mind for me and very uncomfortable.
I love reading your posts - you are so grounded.
Being in the middle of the ocean with nothing to see but water pretty amazing.
I imagine it takes a bit to get your land-legs.
I'm having some post cruise dizziness this morning. Drank some electorates feeling a little better.
So sorry to read about all of this.
Way, so true no aide will prevent falls.
Psue, hope you get some rest, must be exhausting week.
I am for scream in my pillow thread as well.
Psue - If you can, enjoy a little relax time. You have earned it.
We are home . MIL tried again to weasel out of going to rehab . Thankfully the doc at the hospital told her if she didn’t go to rehab she would have to sign AMA and that no nurse or therapy or any home health would come to the house.
Fielding phone calls from her two siblings . The one is ridiculous , he wants us to prevent her falls by getting an aide at home ( which MIL will fire ).
MIL will think that rehab is going to make her “ better “ , she will ditch the walker when she goes home ……
I get the thyroid analogue. I have had high thyroid too and it's just awful. Wouldn't wish it on anyone.
Indeed, it will take time for the drugs to kick in and for everyone to get a sense of where dh is at.
cw - that's helpful
way - Oh dear! Are you home yet?. Don't tear your hair out. it takes too long to grow back in. I gather mil's crazy choices are still in force.
During the day it’s a different story. It will be another week or two before the slow acting drug kicks in. When I visit he can’t sit still. I think I can somewhat understand what he’s feeling. There was a time when my thyroid went out of whack and I felt like I was being chased by something unseen, 24 hours a day. It was nice to be thin for a year but the constant internal buzzing and paranoia was terrible. DH acts as if he feels the same way but without the ability to understand why.
I do think memory care is looming in the near future but we all need to give the drugs time to work. I hope the staff can be patient. It’s very difficult to base decisions on what is best for DH when I don’t really know what that is.
Let us know how it works out. Mil will spin all the tales she needs to, to to get her own way. It may be her downfall.
How are you holding up?
((((Psue)))). Big learning curve! So hard on all of you. At least you have some meds now. Next step is to get them administered appropriately. It's such a big change for both you and dh. Good for you getting the meeting postponed. That was a very good move. I honestly can't see that it would have been productive. Everyone has anxieties to deal with. Dh needs time to adjust to his new environment and for the staff to figure out what is best for him. As you say, the combination of meds is tricky.
How did it work out for dh last night? Are there still thoughts of moving him to MC?
Did you get any sleep?
He SAYS he’s sleeping at night and he isn’t falling asleep during the day while I’m talking to him like he was at home. But he obviously isn’t a good self reporter.
I think I understand a little bit better about the juggling act some meds require. Heart failure - you don’t want them to retain fluid; nighttime urine incontinence - you DO want them to retain fluid. You want them relaxed but you don’t want them dizzy or falling down. Not sure what the contraindications for these new antianxiety meds are and if they play nice with all the other things he’s taking. All are above my pay grade I’m afraid. It will be interesting to see what happens tonight.
Send, I’ve been all over the place on the forum with my issues, not knowing where to park. There are so many overlapping concerns! I’m getting good, actionable advice though, from posters I trust and admire, so it’s paying off.
I’m about 10 minutes from the AL facility and for the first week I was maintaining DH’s meds myself. Big mistake, my fellow newbies! Relinquishing control is scary but if you don’t, it makes it harder for the facility and the PCP to work together and pivot when it’s necessary. One lesson learned; many, many to go.
When DH does this , call the facility and tell them to give him his med .
Giving him the med each night before he is in such a state would be better . Hopefully in time you can have the med order changed to every night at bedtime if it is noted it is needed.
Unfortunately , sometimes the phones are not answered and you do have to drive there to talk to staff , until your husband gets on a med routine .
It really should not be this difficult to ask for an evening med daily . Sorry you are going thru this .
As far as your question below . I’ve seen it both ways . Some are exhausted the next day after a tough night , others act like nothing ever happened . How do you know your DH is able to sleep at night ?
It seems doctors are all over the place regarding meds . My sister’s neurologist only gave her Aricept . Waste of time since she’s past the point of that doing anything . The PCP , addressed her anxiety and agitation too aggressively in my opinion . Two new meds at once . She is refusing the med she should be on , Seroquel , at night . She won’t take it because she says she’s “ not schizophrenic, or psychotic “. She googled what Seroquel is for . But it is used very often at night for Dementia anxiety and agitation too . However she takes the Xanax during the day which is not a good drug with Lewy Body . But she is willing to take that one 🤷♀️🤷♀️🤷♀️. She’s been sleeping more during the day . In my opinion she should take the Seroquel at night ( it worked well for her when she had delerium in the hospital ). I think the Xanax and Aricept should be discontinued .
There were times when nothing but boots on the ground would help, and it was a two-hour drive. I wasn't the primary caregiver, not the POA, but my dH and I would go anyway.
Maybe you can go an hour before visiting hours are over.
I don't know if you are able to go or not.
Find out if the AL actually takes on the responsibility of administering the meds,
or do they have a different care plan?
Apologies if I have not kept up about your struggles, hoping this will be helpful.
I think this is the time to go, or reach the nurses station, if there is one at an AL.
"when to give the prn med. as last night DH again called me,
** frantic,
**to talk him off the precipice and
** into his pjs and bed.
** Lots of confusion, disorientation, fear and even some crying,"
The PCP appointment was a little tense but fruitful. We came away with a slow to start medication as well as a prn. Now I’ve got to figure out how they determine when to give the prn med. as last night DH again called me, frantic, to talk him off the precipice and into his pjs and bed. Lots of confusion, disorientation, fear and even some crying, but no medication! He is able to sleep afterwards but I’m not! Today I will ask about their definition of “as needed”.
@Burnt, and anyone else with gobs of experience with Alz, when I ask DH the morning after a bad night if he remembers calling me, he says he doesn’t. He also says he doesn’t remember being so very upset. My questions: does the memory of deep distress like that linger somewhere in the unconscious mind? Does it take time to dissipate in the body, like the rush of adrenaline when you’re in danger? Is it possible to experience that much confusion without fear or that much anxiety without physical effect? if not, why on Earth would there be any reluctance to medicate?
Or, is it a waste of time to ask questions like this?
enjoy your trip . Stay off Forum while on vacay !! Forget about caregiving for now . You are on respite .
You also can’t force a stubborn elder , who won’t even put her son ( DH) as the contact person at the hospital . She has her partner who has dementia as the contact .
DH left another message and is waiting for the social worker to hopefully call back to talk about how she’s not safe , falls, and we think she has dementia . We will be driving out tomorrow most likely .
We did speak to MIL on the phone again about her safety . She’s adamant it’s her decision , but also spoke in circles , first she says she knows she has to move , and then she says she will get a stair lift . I said if you move you won’t need a stair lift . Then she says she has no problem with stairs and she just needs to heal .
Keeps saying it’s her decision . She’s definatly not recognizing the crisis . I know this all too well . We’ve been hearing for years she either is fine or will make a change that she never follows through on .
Meanwhile DH’s uncle is saying “ there are legal ways around her refusals if she’s not competent .” And that “ your her son you have to do the right thing “.
DH didn’t tell his uncle that he has no intention of seeking guardianship .
MIL supposedly had a POA drawn up recently and she says she signed it .
My head is already pounding . I can’t do this again with one of our parents . Twice was enough . 3rd time is not a charm , for sure .
Edit .
Well the social worker says MIL seems lucid at this time and is refusing to go to rehab on Friday . We will be traveling early tomorrow morning . The social worker said if she refuses rehab at time of discharge they will have her sign herself out AMA.
She’s not lucid in my opinion . Unsafe discharge failed .