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.
You are doing the best you can within the system available . Dementia is also unpredictable . Go to that meeting with sibs with your head up . They are WRONG to assume false motives .
I know I am weak from worry and lack of sleep so will make a Herculean effort to keep it together no matter what they say and take it all under advisement, but the buck stops with me. My motives are pure but I am unsure of the means at every step and maybe that lack of confidence is what is getting me in trouble.
You are certainly not being selfish at all. Ignore anyone (family or otherwise) who will say so. Also, God gave mankind two middle fingers for a reason. Use them both on siblings who don't have anything helpful to say or contribute.
I did caregiving for a long time and for the life of me I don't know why healthcare people put such faith in puzzles and exercize for a person with Alzheimer's and flipping out all day and night. Your husband needs a nice, clean, pharmaceutical benzodiazepine with his anti-depressant to keep him melllow. Something like Ativan or Xanax. Maybe even some diazepam (Valium) if he needs something stronger. These drugs in liquid form work almost instantly to calm someone down.
Your poor husband does not have to suffer in such a state and neither do you from the stress of it. Demand the facility medicate him appropriately. His regular doctor might have to prescribe for him. AL is different than NH, or MC. If they refuse call the police and the Ombudsman's office and explain that the facility is refusing him medication. Maybe even the primary care doctor he had before being placed will help if he's still his doctor.
AL isn't right for your husband anymore. He sounds like he needs memory care. You know that you're in charge of these decisions. Not sibling, not adult children, not extended family or friends. You are in charge and you don't owe anyone an explanation for anything you do, or any decision you make.
It will be all right and you'll figure out a memory care facility for your husband.
Yes, I’ve made him and myself safe and yes, I’m doing my best to get him meds to calm his anxiety. But because it is ME he asks for all the time, the sibs believe it’s ME that can make him feel better. That may be true sometimes, but clearly not all the time, and clearly less and less often as his disease progresses.
The irony in all this is that I’m losing as much sleep over him while I’m at home as I would be if I was there so maybe the sibs have a point.
I know there is no cure and no treatment for Alzheimer’s disease at this stage in spite of all the research. I know he is doomed, I am just hoping for something to help with his agitation and fear.
If there can be ANY peace or quality of life for him, I want him to have it. I will beg, borrow or steal to get it. I can’t sit back and watch some wet behind the ears PA tell the facility staff to keep him hydrated, exercised and to do puzzles with him rather than get on the damn computer and figure out some kind of medicine that can help. I get there are going to be side effects but there has to be a balance. His body is already failing; relieving some of his mental pain is worth causing his body to fail a little more, isn’t it?
I’ve tried my best to place my husband appropriately and I don’t blame myself or the facility nurses for getting it wrong. Now it has to be fixed and that is going to cause him even more distress. I’m so very sorry for that.
I don’t know if I can face more push back from siblings or the PCPa and I’m afraid I’m going to get it in the next couple of days. I’m having a hard time keeping ahead of my dread.
I'm so so terribly sorry for all that is happening. It is all consuming. Not staying overnight?? Puh - lease!!! Anyone with any criticisms can go pound sand, take a hike, and a long walk off a short pier. I could say a few other choice phrases but will refrain.
🫂🫂🫂
You’re pouring all that you have into an overwhelming dynamic situation. While your own heart breaks. It is cruel of them to try to make you feel you aren’t there enough. Focus on what you have to do for yourself and him. Let yourself run out of rats’ tucheses to give re: the siblings.
You ARE making progress and you ARE doing well in all this. Remember THAT as you go along with all that is such a mire.
Are the meds he is taking for helping manage the mental stress for him? Because as far as those designed to "cure" a lot of docs now are acknowledging they really don't, and you may be able to cut some out.
You are very right that ALF isn't the fit for him. Looking too advanced. There's no upside here and I think often vascular dementia tough to take and has a component that is so stressful to both him, you, caregivers--just everyone.
This first year of getting dx., place where he can get care, some sort of clue of how division of finances or protecting you OWN assets is worked out, is going to be tough, tough, tough. Be as easy on yourself, as understanding with yourself, as kind to yourself as you an and enlist ALL THE HELP you can get.
Lordy, I couldn't be more sorry about all this. When you CAN rest and get away from it you MUST.
I made an error in my previous post. Depression is NOT rare in Vasc D. They should have picked up on it.
Not surprised that AL is not the right fit for your dh,.You should have been advised of that by the facility itself in the admission process, as well and the medical people involved. Now you have to do it all again, That's disgusting - just plain disgusting.
At this point (and going forward) I wouldn't worry too much about offending people or being cheerful. Being offended - sure. You should be about a number of failures of the system.
Scr*w the siblings. Develop a hard shell quickly towards their verbalizations,. What do they know? Are they living this? One advantage of having a mean mother was learning early that you can please some of the people all of the time, and all of the people some of the time but you can't please all of the people all of the time, and you can't please mother most of the time. Translate that to siblings. So let that free you to do what is best for you and dh and to disregard their opinions. They are obviously very critical and don't have a clue. As has been said on other threads here, those that are caregiving don't get a vote. Let them stay overnight. Actually how do they know whether you stay overnight or not? Whoever is passing on this information needs to stop so they can't micromanage anymore. They don't need to know that or much detail at all. it just complicates your life. Keep the info you pass on to the bare minimum at this point.. He is doing better, worse or the same, then change the subject. You are not going to get their approval, nor do you need it.
Please don't apologize. You are not selfish at all. You are overwhelmed by a heart wrenching situation and need all your energy for that. Have you heard the saying "What other people think of you is none of your business." It's true. Just concentrate on dh and yourself right now, Time later for others.
(((((hugs)))) to you. Keep us updated and don't mind the ugly sibs.
Truth: AL isn’t going to cut it for him. He’s drawing off too much of the night staff, at least without medication, and even with medication it’s just a matter of time before his disease outpaces it. I’ve been so busy alternately begging and crying, offending people and being offended by people, and putting on my stupid cheerful face, that I haven’t even had time to process how awful this is. And I still have a long, long way to go.
The facility DH is in is a delight for AL but not so much for MC so the search begins again. I’m afraid I will find nothing suitable close to home. I afraid the siblings will find something close to their home and then my visits will be monitored for frequency and duration. I’m not kidding - this has already begun to happen and I’ve been to the AL facility every day except one since he’s been there. My sin? I’ve not been staying overnight. I must not care enough.
Sorry for the rant - just like when I was on chemo, I am sick to death of my own problems and have no room for the problems of others. To all the people outside of my misery bubble, I apologize; I’m not really as selfish as I seem right now.
Another story - once mother had been diagnosed with vascular dementia and had accepted taking an antipsychotic to help with the hallucinations, she was moved to a suitable facility. After she had been there a few months she told her doctor she was depressed and needed an antidepressant. He gave her one and it helped her QOL. I did some reading and apparently depression is not an common part of Vasc D. It rather bothered me that she at 100 with vascular dementia had to self diagnose in order to get appropriate medication.
I could tell you stories about me going to a doctor and telling them firmly what I needed because they hadn't figured it out. It's not surprising that I don't trust doctors much.
That being said there are doctors who do a good job. I know that. Hope you get one soon. Meanwhile trust your gut. No one here thinks you are trying to turn your dh into a zombie. He just needs some meds to calm him down. His poor brain is broken and understandably he is having trouble coping with change.
Try to get enough sleep, eat properly and keep hydrated. If you need a little meds to help you cope right now, that's OK. That's what they are there for. (((((((hugs))))
send - I don't understand your problem with waiting in the car salesman's office while he gets the deal approved by his superior. It's part of the process.
cw - I have found that buying from friends in not a good idea. However, I did buy mother's car when she stopped driving, but she was family and I knew the car well.
In Fort Mc I found a good salesman at one dealership and bought a gently used car (demo) from him. It was great. 10 or so years later I went back to him and did it again for my present car which is 10 years old now, but has much less mileage for it's age since I retired and drive much less. It's still working very well and I don't plan on replacing it.
Nacy - I missed saying "Bon Voyage". Hope you and hub are having a great time!
Just checked the Autofair online, thinking if we ever need to evacuate, a Class B RV would be great!
Minding my own business really, when Carvana raised my car value to $2,300, sending me an email.
Never never will I ever shop for a car at a dealership. It is so rude to be left in a cubicle while the salesman goes to 'ask' his manager to approve your 'deal',
Last time I walked out while they had me waiting. They tried to sell me a new pick-up truck without air conditioning, saying it could be installed later. Little did they know, I was only shopping for a mobile air-conditioner on wheels, not a car.
So, instead, I shopped at a local well-known gathering of car sales, like a car swap meet. They put buyers and private sellers together. I never went to the swap meet, (you could see and track the cars online), but met the seller at my bank, which turned out to be his bank too! In an hour, I owned the car, financed through my bank.
One time, my best car deal yet, I took the phone number off a car driving down the freeway. My two friends were yelling at me: "You can't buy a car driving down the freeway!." But I did, and met the driver at the DMV-the son of a "little old lady"
selling his mother's car that had very few miles. Would like to have that 1981 Toyota Camry today.
Oh, I just saw that silver sneakers has a channel there too!
That is the coolest story!
Keep up the good work, so amazing.
Keep talking in public, ha ha ha .
Need an exercise class or online individual instructor.
My dH lost his Silver Sneakers class when he changed his health insurance.
Cwillie, do you still have a name, and is it free online?
Did not read all of it yet.
Just to let you know thinking of you and I am sorry for all you are going through.
There is no words to describe all those I encountered like you as well with one stupid advice after another.
Bon voyage if I don’t get a chance to say it again! I bet you’re getting those lovely butterflies about now!
Since I got that ridiculous message after hours I stewed on it a bit and sent a pretty heated message back telling him I was almost speechless with his lack of compassion but would not remain so for long.
I got a call from the triage nurse early this morning offering DH an appointment today - which I cannot take, (it’s elder law appointment day) and shouldn’t have to take if the PCP would just pick up the phone like a big boy and ask the neuropsychologist why the diagnosis is taking a month. I don’t even care if the supporting documentation is published until June, he should be able to give his findings in a second so the correct meds can be prescribed if that’s even what the problem is! I’m not looking to drug him into a stupor, I just want the facility staff to be able to take the evening edge off so he and everybody else can get some rest!
Yes, when we get through this I definitely will be looking into another PCP, maybe a geriatric physician if I can find one. This is ridiculous and I’m starting to cry in front of strangers which I’ve NEVER done! It weakens my position.
I hope you and yours are well and your nephew’s school situation is getting resolved. The injustice of it all is staggering.
Obviously your dh's doc doesn't have a clue. I do hope by now or soon your dh gets some calming meds. The adjustment to this change can take a week or months depending on all kinds of factors. Sounds like he has lots of support and caring people (except his doc) around him, This can only help. I think I would have a face to face with the doc and demand some meds (that's just me). If they are not forthcoming ask the facility to recommend a competent dr you can switch to. You need someone for him who understands this disease better. As always - look after you. You are your dh's major advocate.
The PC PA chose to lecture the facility about the importance of hydration, exercise and puzzles….PUZZLES! for those in cognitive decline!
I am so angry that if that little twit was within reach I would drag him by the ear over to the facility to spend a little quality evening time with his patient! In the meantime, I could use some of those calming meds, myself.